Health and hospital update - October 2026

So I’m still finding things tough with my M.E; I’m struggling to adapt to my ‘new normal’ as there’s been no improvement since my M.E declined end of last year. I’m in a bit of a rolling crash where I’m exerting myself which can just simply be my morning routine which later in the day causes a Post-Exertion Malaise crash. I then I don’t have chance to recover before I exert myself again like doing the following day’s morning routine again, which will again cause more PEM crashing on top of yesterday’s PEM crash which repeats the rolling crash cycle.

As well as my M.E bothering me this year so has my Ehlers-Danlos. I’ve been in a lot of joint pain especially recently but more-so my bladder problems caused by a mixture of EDS and having a neurogenic bladder. I’ve been in an incredible amount of pain with my bladder the past few months sometimes to the point where I can’t function because of the pain and my sleep has really been affected too. The lack of sleep has also been making things more difficult with my M.E too. My EDS also causes problems with others organs and I’ve been waiting for quite some time to see gastroenterology.

Because of all the pain I’m in at the moment my GP is referring me to the Pain Department at the hospital. The community pain service that is privately outsourced is useless. I’ve seen them a few times and they were no help at all. My GP didn’t know that the hospital had a Pain Department but when I ring for urology there’s an option to go through to the pain department so I knew it existed which I why I asked for a referral to be made there.

Image made from the
book cover of ‘Be Patient’

This state of my M.E at the moment really worried me about going into hospital for my surgery. Even before my M.E wasn’t as bad as it is now going into hospital would make my M.E much worse; sometimes to the point where my body shutdowns - when this happens I’m unable to move or speak. I also can’t take my bed setup* that I’ve developed at home into hospital, something I find helpful and essential when I’m bed bound like I am in hospital.

*(click link to read the blog post all about my bed space)

There are certain accommodations I need in hospital to help me manage my M.E as best as possible as well as managing my mental health needs and autism. The main accommodation is having my own room. I need a space of my own and one that I can keep dim and quiet with few people such at during ward rounds. Being on a ward is not something I can cope with at all for so many reasons. I also need my different communication methods understood from verbally speaking to using communication cards to squeezing a hand for yes and no. Pain and all that comes with it, like for example seizures and sickness which also needs to be managed. Having M.E and EDS makes simple things more complicated and that needs to be understood and addressed. Such as putting me under a general anaesthetic for a procedure as many EDS patients like myself don’t respond to local anaesthetic. I also need support with pretty much everything and my PAs come in to support me - I am waiting for my social worker to create a hospital care plan that will outline my needs in hospital, such as what care and equipment I need (both equipment that needs providing and what I’ll bring from home, like my hands-free water bottle). She’s also going to create a PA care package for when I’m in hospital that will be different to the care package I have at home. It will include hours for my PA’s to come in periodically during the day to care for me, such as getting me washed and dressed, fed, getting drinks, sorting out my catheter. Though the ward does have Health Care Assistants they don’t have the time to fully carry out all my care needs as I need them too especially when they have to divide their time between other patients all needing a lot of care too. Plus there just isn’t enough staff to go around to give each patient the time they need and my PA’s know me better are are more attuned to my needs and how to care for me. They know without me saying when I’m in pain, or how best to wash and dress me, and to move me without upsetting my EDS joints. This hospital care plan will mean that my PA’s can come onto the ward even when it’s not visiting hours as they’re there to care for me. It will also be helpful too as my PA’s can also do things like fetch things from home for example.

When I got to the Day Surgery Unit initially I was put in a communal room. I did explain that I had explained that I needed and explained that I needed a bed as I couldn't stay in a chair for long periods. The last thing I wanted was for my surgery to be cancelled because I’d be in a chair for too long and my dysautonomia flared up and I ended up fainting or my blood pressure wouldn’t be safe enough to have the procedure. Unfortunately I didn’t get a bed but I was moved to a room of my own and the nurses helped my PA to recline the chair so I was more-or-less in a laid position. The nurses and my PA Emily were great. Emily especially went above and beyond for me that day. The ward manager in Day Surgery came and spoke with me about the pre-planned care which reassured me. The nurses also let me and Emily loose on the trolly cart of pillows so I think I got at least 6 pillows and made myself a body pillow out of them. Normally one pillow is all you’re lucky to get!

The anaesthetist came and I managed to get most of the medications I needed to mange the surgery and afterwards. When the consultant came he defiantly wasn’t clued up on Ehlers-Danlos Syndrome and how local anaesthetic doesn’t work for a lot of EDS patients like myself. I did have a card in my Medical History Passport which the nurse had taken away that explained this. Emily advocated for me on this matter as she also has EDS and local anaesthetic doesn’t have much effect on her either. So as my PA and fellow EDS-er she spoke up and we managed to go ahead with general anaesthetic as planned.

The surgery I had was to inject Botox into my bladder. I’m still feeling quite fragile and worn out so I’m just trying to rest. When I was reading about treatment options many things I read recommended Botox especially when other treatments, like in my case, have failed to work. I’ve tried many options; I take medication that is specifically for bladder spasms, I’ve done iAluRil installations and done dietary changes like cutting out tomatoes, caffeine and spicy food. 

The Botox will help in several way, relieving the spasms I get in my bladder and helping my overactive bladder. The Botox will take up to a few weeks to start working but I hope it will be the answer and offer me relief as I’ve been in despair and the pain has had a huge effect on my mental health. Urology is going to do a follow-up in 4 months. The Urologist I met in hospital who discharged me was the best urologist I’d met. He really listened to me when I expiated about the pain and the effect was having. Other consultants never wanted to listen to me they just wanted me out the door as quickly as possible. I also found out from him that strawberries affect the bladder too and I eat them a lot so that’s another food to cut out. He told m off for drinking coffee but I explained that I did as for decaf but the hospital didn’t have decaf and the nurse vouched for me that decaf isn’t available. (So in future I’ll have to pack sachets of decaf coffee to take into hospital.)

I’d asked for a particular medication to be given to me just before I go to theatre to help with my seizures, I hoped this would be IV but the Day Surgery Unit only gave out tablets. There were other medications I hoped I’d get IV but I was only given IV medication in theatre. Before going to theatre and back on the ward my medications were all liquid or tablets. The reason why I hoped for IV medication at least overnight before I return to liquid and tablets in the morning like at home is that because of my EDS I have delayed gastric emptying. Because of this medication especially tablets take longer to absorb and take effect. At home all my PRN medication is liquid or effervescent (dissolvable) which slightly helps as they absorb a little quicker than tablets. Thankfully in hospital they listened to me on this and the vast majority of time my paracetamol was given to me in liquid form alongside another liquid pain relief medication.

I got really good care from the nurses and Health Care Assistant's both in Day Surgery and on the ward. They really liked my catheter bag covers and valve covers and agreed that they look much nicer than a bag of wee! Another nurse thought I sounded really posh as I had my own personal team of Personal Assistants. The staff loved my wheelchair too.

While in hospital I wasn’t kept waiting long at all for pain relief after asking for it which was a huge positive. In the past I’ve been kept waiting hours and in the Emergency Department it’s a disaster. The only time I was kept waiting was when I had bad nausea and I wasn’t due my usual anti-sickness medication so I was waiting for a doctor to prescribe me an alternative. In the end i was allowed my usual medication early. I take it four hourly at home anyway but in hospital they’d written me up to have it more spaced out than that.

I was so glad that I was always given a room of my own. This really helped my mental health, my autism and my M.E. I just cannot cope on a ward for a multitude of reasons and I need my own space that I can keep low-sensory. It makes a huge difference.

Also to help keep things low-sensory I wore my sunglasses durning my admission instead of my tinted glasses for added low sensory-ness and to also make my light sensitivity more visible. I also wore my noise cancelling headphones the vast majority of the time, mostly because I was listening to my book and different podcasts to keep me entertained and distracted.

When I’m in hospital or have had surgery I’m usually not well enough to do much for entertainment. I usually just listen to things and it gives me a good distraction too from pain and nausea. I didn’t really sleep in hospital as I wasn’t that comfortable and I was in pain. I just rested throughout the night with my headphones on and I listened to a variety of podcasts and I managed to finish my audiobook as well.

My Dad did visit me too on the evening of the night I was staying in hospital.

I have a follow-up with urology in four moths to see how I’m doing with the Botox. I’m really hoping it will be effective. It’s been a week and a half now and things are looking positive. If it does help and work it’ll be a procedure that’ll be repeated every 6-ish months depending on how long the Botox stays working. It’s just unfortunate I can’t have the procedure done as an outpatient like a friend of mine has it or even just day surgery. I have to stay in as I live alone and I don’t have overnight care and I’m a falls risk. I’ll just have to take in my own sachets of decaf coffee but I feel more confident in going into hospital and knowing my needs will be met and I’ll be cared for. Especially as I feel like a zebra in a hospital full of horses at my local hospital and they’re not always great at treating zebras, especially how I feel in outpatients and in the Emergency Department. However with communication and planning they did manage to treat me as a zebra this time for this procedure and having to stay in as an inpatient and meet my needs and accommodations.

For now I’m just resting at home. My catheter site has become infected since I came out of hospital so I’m just dealing with that at the moment and my catheter change got delayed but the community nurses have been great. I was in a lot of pain initially when I first came out of hospital for just over the first week but things are settling down now. I’m happy to be back in my own home in my own bed with my PA’s.

Chronic pain management is suicide prevention

*TW - talk of suicide and suicidal ideation

September is both pain and suicide prevention awareness month. I was originally going to write a post about living with chronic pain but I want to open up more about my lived experience of mental illness as well as physical illness.

I’ve lived with chronic pain for many years now. I experience many different types of pain so I take different medications for different types of pain. I always refer to my medication as ‘pain relief’ rather than them being ‘pain killers’ as they don’t eliminate my pain they just make my pain bare able so I can just about function and have some quality of life.

There are days when I do struggle to function because of my pain. At the moment I’m going through a difficult time with my bladder. Due to my Ehlers-Danlos Syndrome it’s caused problems with various organs including my bladder and I’ve gone into bladder failure as a result. I also have a neurogenic bladder which a problem with the functioning of the nerves in my bladder. I experience severe, and I mean severe pain in my bladder. I’m trying to get Botox treatment for my bladder but because I’m not a straight-forward patient and I require additional care. Having a rare illness like EDS throws curveballs into my care and makes me more “complex”. At my local hospital I am a zebra in a hospital full of horses and my hospital isn’t equipped to properly care for zebras. This means that patients like myself struggle to get the care they need.

Sometimes the pain sends me into despair. I’m maxed out on meds, I’ve got my heat pad on me, I’m doing breathing exercises, I’m trying movement (if I’m able to move), I’m trying to distract myself yet nothing is helping. There are times I contemplate calling 999 but then I think ‘what more can they do?’ I don’t want to be taken into the Emergency Department either as what can they do too? 

I hate taking a cocktail of medication. Different drugs for different types of pain and then there’s extra pain relief meds as breakthrough pain relief for when the pain gets bad. I hate taking so much medication but I equally don’t want to be in pain. Medication allows me to get through the day without my whole body yelling at me that it’s feeling a multitude types of pain and that my body is out of action. Medication is just one of those unfortunate things that I have to take to get through the day.

I often find my pain isn’t believed. Because I handle pain so well because I’m not curled up screaming and crying medical professionals don’t believe I’m in the amount of pain I say I’m in. This leads me to not getting the care and treatment I need and deserve as someone who is chronically in pain or is experiencing acute pain.

I often feel that my pre-existing illnesses are also passed off as the reason why I’m in pain without investigating for other reasons why I’m in suddenly in acute pain. Pain is the body’s way of saying that something is wrong. 

I definitely feel I’ve experienced the gender pain gap when it comes to my health and medication and doctors attitudes.

My local emergency department dropped the 1-10 pain score replacing it with a 1-3 pain score scale. Based on the new 1-3 pain scale I live at number 3 on a daily basis. When I’ve reported a number 3 to the nurse I’ve often not been believed based on how I’m presenting. I can be in acute pain but I’ve learnt to handle pain. In hospital in my ‘go bag’ I pack a power pack, a charging cable and headphones alongside bringing my phone so that I can listen to audiobooks to help distract me while in the Emergency Department from symptoms, my pain and nausea and my medical PTSD as well as to help pass the time while I lay and wait for tests, scans, treatment nurses and doctors.

Living in chronic pain especially at the moment with my acute bladder pain especially when it flares up and because intolerable takes a huge toll on my metal health. On top of that I have my EDS pain in my joints and other parts of my body like how it affects other organs alongside my bladder and when joints decide to dislocate after doing something so mundane. Then I have my M.E pain which is in every part of my body. My muscles, nerves, bones, joints - name a type of pain and I feel it. This really wears me down. I get ‘sick and tired of being sick and tired’. Sometimes I wish there was a way for my pain to disappear, especially when I’m in an acute pain episode.

So good pain management is good suicide prevention. There have been people with M.E like Lynn Gilderdale who ended her life because she couldn’t take the suffering of her severe M.E anymore. Better services need to be provided to help chronically ill people deal with their pain. In the UK the NHS is a postcode lottery. Locally for me our “pain management service” is shockingly bad. They just parrot out of an awful resource called The Pain Management Toolkit. It’s a one size fits all service; not tailored to individual’s needs. Even trying to get pain management for my urologist wasn’t great. At my last appointment I wasn’t given the opportunity to explain my pain and how it was affecting me. From experience there isn’t even time with doctors to truly get down to things like pain management. The only way I can see patient can really get management from their pain is when their condition becomes palliative and the hospice can support and trial pain management options. That’s how it feels locally anyway.

There’s little communication between mental health and physical health services too. You can become suicidal due to pain but you aren’t mentally ill so you get no support from mental health services other than a letter to your GP. GP’s aren’t experts in pain management or mental health. You get a prescription and you're sent on your way, but medication is just duct tape on a dam that is ready to burst. The route of the problem needs to be addressed and fixed but again that comes back to the NHS postcode lottery and whether the support and treatment exists for you.

I feel my horses hospital is reluctant to refer me to a hospital that can deal with zebras for the bladder surgery that I need along with the complexities that come with me having surgery because I’m a zebra because that costs more money than treating me in the horses hospital.

I am so grateful that I live in the UK with the the NHS but the system is far from perfect. Yes I probably wouldn’t be where I am without the NHS but if I were in America I could find a hospital and an urology department that can treat zebras like me. I can also find M.E services that exist and get the care I need for my EDS’ ever growing problems. I can find doctors I relate to and feel comfortable with and confident in knowing that I’m being well cared for. I’d love to go private in the UK but I just can’t afford it and I’m not a person to crowd fund.

My pain, my symptoms, my complexities, my frustrations and not getting the care I need come at the detriment of my mental health. It’s plain and simple good pain management saves lives.

Statistics

• A major UK study found that  9% of 11-15 year olds experience both chronic pain and suicidal ideation.
• Almost three quarters of of young people who experience and overlap of pain and suicidal ideation were girls.
• 18-50% of patients living with chronic pain experience suicidal ideation at some point.

References: University of Oxford and the National Institute for Health

The gender pain gap

• Over 50% of women in the UK feel their pain is dismissed, ignored or labelled as emotional by healthcare professionals.
• Up to 81% of 18-24 year old women feel their pain isn’t taken seriously.
• Data has shown that only 47%of women receive a diagnosis for their pain within 11 months compared to 66% of men.

Does my disability define who I am?

This is a question I often wonder and in someways I’d say yes and in other ways I’d say no.

This is a quote I like by This Thing They Call Recovery

No my disability doesn’t define who I am 

I’ve always refused to let my disability define who I am. I don’t want my disability to become me and become my identity. There is more I can say about who I am than just the fact that I’m disabled. I love books, crafting, pen palling, riding my Batec, cooking and so much more. Those are also other things that define who I am.

A metaphor a friend Ruth introduced to me is our life is like a piece of cake and there's ten portions to who we are, but only one of those portions is our health. 

For me living with multiple chronic illnesses it sometimes feels like my health is a full-time job [that I didn’t sign up for] so dealing with my full-time unpaid job I can lose sight and not have the energy or time sometimes for the other nine portions of me. Sometimes as well when I’m in a crash like at the moment and I have little energy for ‘me things’ it does feel like all I have in my life is my health in some way shape or form. Exacerbated symptoms, additional symptoms, brain fog, Post Exertion Malaise, resting, care, insomnia, appointments, tests, extra medication like antibiotics or new medications to manage symptoms and more as well as the fact that like now I’ve still not recovered yet back to where I was 10 months on.

Sometimes I often see on social media people with chronic illnesses who I feel have let their health become who they are. For me I need balance. I need to step away from the chronic illness community quite often as I find it too negative for me. I don’t get the support I used to get from it. Now that support comes from my chronically ill/disabled friends who I find have a much more positive influence on who I am. There’s also balance with these friends as we’re all not just defined by our health we chat about our other shared interests that have nothing to do with our health and we’ll talk about our lives like work or what we’ve done recently. We’ll share our achievements no matter how big or small as we each know that we’re all at different levels with our health.

I don’t want my disabilities to define who I am. I don’t want them to be the sole focus of my life. Yes my symptoms do very often control my life but I don’t allow my disabilities to define me. I don’t (I hope) just talk to everyone about disability all the time. I do consciously try to make an effort to talk about non disability related things to people.

I try to have less disability on my personal instagram to get a break from disability as I live with it 24/7 in my own life but I do have a public account to share my lived experience of disability on there. However recently I’ve tried to put other content about myself on there too to share all ten portions of me on there not just the one portion. I’ve done this because I don’t want to over focus on disability and I want my disability to define who I am as I want to show people that there’s more to me than just my disabilities. 

Yes my health does define me

I feel that since becoming disabled the many challenges and situations I’ve faced (both positive and negative) has shaped and made me who I am today. I feel those experiences have made me more resilient, grateful and more able to speak out especially when it comes to what I need (plus lots of other things my disability has made me into today too). I’ve had to become an advocate over my care to get the medical and daily care I need. Before my disability I’d just put up with what’s happening in my life even if I was unhappy. I feel I’d be a different person if I hadn’t of become disabled. Yes I do grieve for my pre-illness life and what could have been but I’m thankful to my disabilities for the person it’s made me into. Maybe one day I will dance again, just now in my wheelchair - I look up to disabled dancers like Kate Stanforth. Plus maybe one day I will return to education and I will do my dream job as a therapist with children and young people. I just have to be patient and take each day as it comes. My disability has taught me how precious life is and not to take it for granted as you never know what might happen. I got the flu, something so mundane but I never recovered from it as it developed into M.E and my whole world turned upside down. My disability has also taught me to take each day as it comes as you can predict one day to the next, some days one hour to the next. I wasted my life before I got ill. Sometimes I wish I could start over on some things but I can only move forward. Disability has taught me a lot and in a lot of ways it does define me.

As well my disabilities define me because they are part of me. My health affects me greatly and heavily influences everything I do as I have to carefully plan and pace every aspect of my day. My chronic illnesses are also there permanently 24/7 365 with no days off and no annual. I didn’t ask to become disabled but disability is the only minority and biggest minority that anyone can join at any time.

I’ve wanted to share my lived experiences of disability like on this blog and collaborating with various charities and organisations. I have done many opportunities over the years sharing my lived experience and worked on things like how care can be improved, or how government changes affect disabled people like myself. Doing this awareness and advocacy work defines me as a disabled person. I hope I can be a voice for others, especially the work I do raising awareness for Severe M.E as many people with Severe and Very Severe M.E are unable to speak and share their story. There are other things I’d like to share more awareness about, both on my own through this blog and with charities and organisations. There’s only so much I can do however because of my health. I’d love to blog more regularly but my energy levels and time are both limited.

I hope that through sharing my lived experience and doing advocacy work it helps increase understanding and awareness or helps others to accept their illness or learn ways to live with it.

So in this way yes my disability has made me who I am. For example I’m a disability advocate and campaigner. I also identify as disabled and as a wheelchair user.

Anorexia & M.E (and other chronic illnesses)

I’ve struggled with M.E since 2014 and since around 2018 my M.E has been classed by my doctor as severe. I’m mostly housebound and I spend most of my day here in bed. I can go out such as for therapy appointments, medical appointments or to my Dad’s for tea but leaving the house takes me days to recover from doing so. Even just the exertion of getting washed and dressed in the morning tires me out and I’m left with Post-Exertion Malaise by the end of the afternoon and I’m exhausted for the remainder of the day.

I’ve had anorexia just over a year. It’ not something that is new to me as for a number of years as a teenager I had anorexia and was in and out of child and adolescent inpatient units and eating disorder units as well as the paediatric ward because I was too physically unwell to be in a mental health unit. I didn’t find inpatient treatment helped me that much. It did get me out and away from my school and home life which helped but I received very little psychological therapy, so I could never cope with being a restored weight so I’d instantly relapse. What helped me recover was my mother leaving the family home - there was a great social worker in the last inpatient unit I was in who really listened to me, something I’d never experienced. Once I was back home with my Dad and in outpatient treatment I had an amazing psychotherapist in CAMHS (Child and Adolescent Mental Health Services) who I honestly feel saved my life. I still needed therapy but I aged out of CAMHS and my therapist just hoped I could keep going especially because I couldn’t continue therapy as adult mental health services didn’t really have a talking therapy service. Occasionally I think about tracking that therapist down just to let her know that I’m still here.

Anyway I managed to learn to be the one in control and though remnants of my eating disorder still remained I managed to be the one in control. However last year life events in my life meant that I needed to feel in control of something so I turned to my old habit of controlling food. At first I thought I was in control but after a while I realised my eating disorder was controlling me and I reached out for help. My head is still a bit all-over the place and I’m still struggling with my anorexia and I’m finding recovery hard  so writing this post with my sensible brain typing is a little hard.

Having anorexia and M.E is a really difficult combination in so many ways. The main things and I often discuss this with my therapist is that due to restriction with my anorexia it causes brain fog and fatigue as well as other health problems. I’ve been needing regular health checks as well as needing a Dexa scan to check my bones. All these appointments for these tests are exhausting and the tests themselves and the time they take are exhausting. Then I have my therapy sessions. Like I said above going out is difficult for me so all these extra appointments add to my exhaustion and Post-Exertion Malaise, PEM, with my M.E and with PEM I get an exacerbation of my M.E. Alongside my anorexia with M.E I also struggle with brain fog, fatigue and other symptoms so I get a double hit of brain fog and fatigue. My anorexia also worsens my M.E too.

I know rationally and sensibly that I need nutrition to help my M.E and to help reduce my brain fog and fatigue and improve my sleep and just overall health and my other chronic illnesses too but it’s incredibly hard and easier said than done.

Anorexia is a mental illness. It’s a voice that tells me to restrict, it distorts my perception of my reflection in the mirror and tells me that I am fat and I need to lose weight, that I am not deserving of nutrition, that I am worthless and it feeds into my negative cPTSD trauma feelings about myself. I see my eating disorder as almost a form of self-harm against myself.

I can’t just pick up a fork and eat a meal to fuel my body’s daily quota of nutrition. Even just something like a yogurt makes me feel guilty and sets off the voice in my head with criticism and negativity.

My M.E needs nutrition to function better, especially at the moment as my M.E declined 7 months ago due to the situation I was in with my care. Frustrations over the lack of control with my health and care only made my eating disorder worse; this obviously wasn’t helping my worsening physical health.

On a positive note I have come a long way since I first started my eating disorder therapy, I still have a way to go. Recovery isn’t liner. I’m just finding it hard to balance my struggle with anorexia and knowing that my M.E needs nutrition so I can function better. It’s really difficult sometimes especially when I’m having a bad M.E day. I know I need to follow my meal plan which will help my M.E, but implementing it is a challenge.

I’m also finding it hard at the moment because I’m trying to have as much nutrition as I can handle, I know realistically it’s still not enough and I’m still not there with my recovery. Me and my therapist have been keeping things stable as I emotionally can’t handle increasing anything as I’m struggling with how things are at the moment. I’m trying my hardest and I’m dealing with a lot of eating disorder thoughts around feeling guilty and bad. I’m finding it discouraging because I’m trying my best but my energy levels are still low. It makes me feel like what’s the point in putting myself through so much upset and struggle. It’s a difficult balance between my M.E and the anorexia; I just have to take each meal at a time.

I think having a restrictive eating disorder like anorexia and and Energy Limiting Illness like M.E, or even my Ehlers-Danlos which also limits my energy is really difficult because you’re trying to balance the needs of you’re physical health condition which includes giving yourself nutrition which gives your body energy to function. Then on the flip-side you’re battling a mental illness which restricts your nutrition and exacerbates symptoms like fatigue and brain fog as well as causing physical health concerns. Having POTS as well doesn’t go well with an eating disorder.

Another problem with M.E and anorexia is sleep. Sleep problems aren’t uncommon in M.E. I really struggle with insomnia especially and I know that I need energy to sleep and lacking energy from a lack of nutrition won’t help my sleep problems.

One of the main  reasons why I wrote this post was because I found it really hard to find information on anorexia when you also have a chronic illness. I’m sure I’m not the only person out there who has both chronic health problems and and eating disorder. I wanted to write about how they affect each other and the difficultly of having anorexia and M.E and other chronic illnesses.

Life update

I wanted to write a more personal post and share with you a bit of a life update.

At the end of last year my main PA at the time went on long-term sickness leave which left me even more reliant upon agency care for most of my care. I had another PA who did weekday evenings and alternate weekends but the agency did my “main” care. (I say “main” care because they were getting me ready in the morning but they weren’t fully meeting my care needs). Due to the nature of agency care being much more expensive and with my Direct Payments I can’t afford the 4½ hours of care I usually have and need during the day and I’m was only able to afford 1½ hours of care with the agency. This meant that I had to prioritise what care the agency did for me which was getting me washed and dressed. I did try to get the agency carers to do my breakfast and run my bath as well in that time but they just were not that competent enough despite the fact that my PA showed one of the agency carers how to do my breakfast, run my bath and get me washed and dressed and do other tasks all within 90 minutes. I was having my care rushed, 1½ hours might sound a long time for getting a bath and getting washed (plus a few other minor tasks like washing my pots) but it really isn’t, especially when I need to pace tasks and go slowly (especially on days when I’m not feeling great which is most of the time at the moment), plus when you have incompetent carers and you’re constantly having to explain things to them. Rushing my care I find is more painful, exhausting and exacerbates my Post Exertion Malaise later in the day as well as the PEM from all the things I was having to do for myself. I am able to do things like get my breakfast, run a bath and put laundry in the machine but having Energy Limiting Illnesses makes doing these takes a lot harder. All together it quickly significantly impacted on my overall health and I wasn’t having much of a life. I was struggling more with my physical health; my M.E was getting worse and when I was doing my Functional Capacity questionnaire each month for my Visible app my score began dropping most months and continues to do so evidencing a decline in my health and ability to do things in a variety of different aspects of my life. It was also having a massive negative impact on my mental health when I was already struggling with my mental health.

Mine & Emily’s pottery painting pieces 

I’m still stuck in this worse state of M.E now but it’s sort-of become my ‘new normal’. I permanently feel like I’m fighting PEM. I wake up tired and in pain; not helped by my insomnia. I do my morning routine with my PA. I maybe do an activity, I rest and then around 2/3pm the PEM hits me from doing my morning routine each day. The rest of the day is spent in a flare-up. Some days I’m worse than I am on other days but I always feel like I’m running on a low battery and my brain is made out of fudge. Occasionally I can do bigger things, sometimes I have to do bigger things like the past few months I’ve had a lot of appointments with respiratory and with radiology because of my pneumonia. I’ve also had my pre-assessment for my bladder surgery. Occasionally and with planning and preparation I manage to do bigger enjoyable things like Emily and I went pottery painting which we both enjoyed. Also my friends Paul took me for a coffee and we took my Batec and had a stROLL along the seafront, something I’ve wanted to do for a very long time. To me despite the huge crash from going out sometimes I feel the PEM is worth it if I’ve done something I enjoyed. I do get down sometimes about how my M.E is at the moment. Sometimes when I’m feeling really crashed and I’m in a lot of pain and my symptoms are just so exacerbated and I’m struggling to function and important to do jobs like sorting my care situation out are piling up I just feel like I’m existing because all I’m able to do is the bare basics, the rest I’m too tired to do, but I’m always a person to look for the positives. I’m glad I have my own home and I have a great set-up around my bed because I spend so much time here. I’m grateful I’m managing financially despite the cost of living along with the extra costs that come with being disabled. I’m thankful I have my wheelchair. I’m also so grateful to have Alison and Emily as my PA’s and they go above and beyond for me and my Dad is so supportive too. I have some great pen pals who are understanding that I’m slow to reply or all I’m able to reply with at the moment is a postcard. There are so many positives I could list.

M.E is awful at whatever level you’re at. My really good friend has mild M.E but she still really struggles and has to give up a lot in her life to manage her M.E just so she is able to work part-time. I hate it in groups when people compare as to who is more worse off and makes out that someone’s situation is a papercut compared to their situation. I’ve had experiences like that in groups myself when people haven’t fully understood what I’ve written and make out that they’re so unwell and unable to do anything at all compared to me.

I do hope that I’ll get back to where I was this time last year but for now I’ve accepted and adapted to this new normal.

I also dislike agency care in general and I was having problems with the agency carers. I’ve never been a huge fan of agency care and I much prefer PA care as you get consistently and you build up a positive relationship with your PA’s and I find I have far fewer problems with PA’s compared to all the problems I had with agency carers over the years.

Eventually the PA who was on long-term sickness leave resigned so I was stuck with the agency carers until I could sort out finding a new PA. Thankfully in February my evening PA Alison took on my daytime care four days a week and I was so happy as we got on so well and she was an amazing PA and person. I then interviewed another person and we hit it off straight away and Emily works for me one day a week. I’m still looking for a third PA for the alternate weekend - I’ve been looking for someone for several years now but no luck so for now I’m stuck using agency care.

As well as my M.E, in mid December I got taken to the Emergency Department and it was found that my left lung was full of pneumonia. They wanted to admit me for IV antibiotics but because of my M.E and autism I know that hospitals aren’t the best environment for me. 

I need support with all aspects of daily living and a quiet low sensory environment and being in hospital it’s hard to meet my needs. At home I have my profiling bed, my quiet hybrid airflow mattress (the pump for it is nice and quiet and it has memory foam over the airflow tubes so I find it very comfortable compared to other airflow mattresses). I also have a great set-up around my bed with various accessories attached to my bed and an organised bedside table with everything I need. Spending so much time here in bed I’ve developed the set-up that works for me especially when I’m really unwell and I can’t replicate that when I’m in hospital. Like I can’t have my hands-free drinking bottles, my Flexzi stand or my body pillow, all things I find essential when I’m not well. I also have 1:1 care at home in which I can have more time to do my care compared to when I’m being cared for by a nurse or Healthcare Support Worker in hospital. Food is also better especially as my diet is very restricted due to allergies and being on a Low FODMAP diet. (I do have an inside source in the hospital catering department as my stepmum works in the catering department at my local hospital so that helps a little.)

I argued my case to several doctors explaining repeatedly why hospital isn’t the best place for me and why my home is as they really did want me to stay in. Looking back now I was really poorly and I could have done with those IV antibiotics but with how unwell I was I needed the environment I have at home and longer care time. I think I would have become more unwell in hospital due to the hospital environment. Personally I feel that more provision should be made in the community to provide treatment to patients who need things like IV antibiotics or infusions where hospitals just aren’t a suitable place for them for whatever reason. I really hope this is one of the things that is debated in parliament when they discuss care of patients with severe and very severe M.E.

It took several months for me to recover from my pneumonia. I had to have a couple of x-rays and CT scans and well as an ultrasound as I had fluid in my lung as well as my lung also partially collapsing. When I saw my CT scan I wasn’t surprised why I was struggling to breathe as the fluid was taking over so much space in my lung. I was also on several courses of antibiotics and steroids so that added to me feeling really rubbish.

My Ehlers-Danlos has also thrown up some complications which have been ongoing for a while. My bladder has been problematic and I’m waiting for a surgery date to have some Botox but having EDS makes having surgery more complex. I’ll also have to stay in hospital so I’m not looking forward to that for the reasons mentioned above. I’m also on the waiting list to see gastroenterology as my EDS has been causing complications with that specialty too. My EDS has affected my digestive system for a while but my symptoms have recently worsened. People often think that EDS is just about ‘being bendy’ but they don’t realise the problems it causes with people’s organs as well other things as well. Like I recently learnt that because of the faulty connective tissue in the brain, neurodivergence, autism and ADHD, is more prevalent in people with EDS.

I find it hard at my local hospital as they rarely understand the diagnosis’s I have and how they affect me and make me a bit different to other patients. Like how because of my EDS local anaesthetic rarely works on me or my needs as someone with autism and/or M.E. I also have some medical PTSD with my cPTSD and part of that is from gaslighting from healthcare professionals. When you have chronic illnesses you become an ‘expert by experience’ but some healthcare professionals don’t like that; they don’t like you using medical terminology like tachycardia so instead I downplay it and say I have a fast heart rate for example. I also hate the 1-3 pain score they use at my local hospital instead of the 1-10 scoring system as it’s harder to give a pain sore when there’s only three options, and when you say 3 they don’t believe me because I’m used to living with high levels of number three pain 24/7. Then there’s the times when they think everything is all in my head and I’m making my symptoms up or I’m over exaggerating. I find medical professionals especially don’t understand Functional Neurological Disorder and mistake it for something psychiatric like Factious Disorder. 

Another update is the fact that I’ve been struggling with anorexia again for just over a year. I’m in outpatient therapy at the moment but I’m finding recovery tough (which is a total understatement). I’ve just found it hard to talk about but I hope to write more open and honestly about eating disorders and mental health on this blog. I say again because I had anorexia for many years as a teenager. I’m receiving good support and therapy at the moment. Recovery just isn’t linear.

One of the things I’ve realised is just how much my Batec helps my mental health. Just getting outside, putting my headphones on with a podcast playing just helps me so much. My Batec honesty has to be one of the best things I’ve ever bought.

I still need to sort out my care situation. I had to get rid of my previous care agency as there was just too many things that were red flags. I hope to find a PA, I’ve been looking for 6 years to have a third PA for the weekends. I did interview one person recently but I just didn’t feel they would be suitable. Alison and Emily are helping me out as much as possible and my Dad as well. I’m meeting with a social worker next week. I did call one care agency but I had to rearrange and they haven’t called me back to rearrange so I maybe need to contact another agency. I also need to report my previous agency to adult social care because of all the red flags. I’m just so tired at the moment that getting things like emails and phones calls done are a challenge.

I know I’ve rambled on a bit and maybe paragraphs aren’t quite in order but that’s my life update so far.

FND and mobility aids

April is Functional Neurological Disorder, FND, Awareness Month. FND is a problem with the brain and nervous system’s inability to properly send and receive messages around the body which can result in a wide range of symptoms.

One symptom of FND is altered gait and other mobility problems. This is a symptom I have. When I walk my brain struggles to communicate with my legs so my gait is all over the place and I’m very off-balance when I walk. I also get reduced sensation in my legs which also makes walking difficult.

I’m an ambulatory wheelchair user. This means that I can walk a little with my crutches but I also need to use my wheelchair to help me get around. In the UK around a third of wheelchair users are ambulatory. At home I sometimes use my crutches, but most of the time I now need my wheelchair to get around. But when I go out I always use my wheelchair as I struggle walk at all when I go out. I’m also safer in my wheelchair as I can’t fall and it’s also safer should I have a non-epileptic seizure which is also another aspect of my FND. My symptoms are also better managed when I’m sat down.

Using a mobility aid doesn’t mean you’re “giving up”. Mobility aids are here to benefit us and aid and support us. They’re not a sign of weakness or failure they’re a sign of strength and wanting to live your life to the fullest as possible.

The decision to start using a mobility aid might be something you’ve chosen yourself, or it might come from a healthcare professional. It can be a big step to start using a mobility aid as you might feel that it’s a sign that you’re now more unwell. This might be the case for some people but not for everyone. Using a mobility aid can actually improve your life. It will give you more freedom and independence and quality of life. They can also help you to better manage your symptoms like feel less fatigued, reduced pain, better management of heart rate, more stability, save energy and more as well as offer safety.

Mobility aids don’t just help us physically, they can help us emotionally too and give us more confidence. We don’t have to worry about things like falling, passing out, becoming tachycardic, being off-balance, not being safe, having no place to sit down to rest and so many more reasons.

Some people always use a mobility aid and others just use it when needed like on bad days or when going out. Others have a variety of mobility aids and use different aids on different days depending on their symptoms.

When my FND started, before I was diagnosed, so I didn’t know what was wrong with me but I was struggling with my mobility I used to carry around a fold-up walking stick and I’d use it when needed and then I used it all the time. By the time I was diagnosed my physiotherapist had then said I should start using crutches. As time went on and my mobility and overall health worsened not just my FND but my other conditions I asked my neurologist if a wheelchair would be of use to me. I wanted his option as I didn’t want to decondition my mobility. He absolutely thought that a wheelchair would benefit me and he knew how determined I was to not decondition and he said that he knew that I’d know when I would and wouldn’t need to use my wheelchair.

Wheelchair Services provided me with a wheelchair and it really did benefit me. I was able to go out more instead of struggling walking with my crutches; getting tired and then completely crashing and making myself more unwell. As the years went on and my health continued to decline I needed to use my wheelchair more often and my NHS wheelchair wasn’t meeting my needs. I now have an ultra-lightweight active wheelchair, my GTM Mustang, which I love because it meets my needs and it’s given me back my freedom and independence as well as improving my quality of life. 

Another mobility aid I have, which has to be one of the best things I’ve ever bought is my Batec Mini 2. It’s a power add-on for my wheelchair so I can easy go zooming around.

My Batec has really helped to improve my mental wellbeing. Just being able to get outside and ride around and get some fresh air or ride to the post my penpal mail or to the shop. I’m in my little happy place when I’m riding with my headphones on and saying hello to dogs out on their walk.

When I first started using a walking stick I felt nervous using it and being seen using it as someone in their early 20’s as I always associated walking sticks with older people; not someone young like me. I used to think about what people thought of me using it when I got on a bus and then went and sat on the reserved seating. I never really saw people my age using mobility aids.

That’s one positive that has come out of the chronic illness community; seeing other young people my age using mobility aids. It really helped me to not feel isolated and to realise you can need a mobility aid at any age and it helped me to accept using mobility aids. I also saw to variety of what jazzy mobility aids that were out there too, or the various ways you could decorate your mobility aid.

Jazzed up wheels and my floral crutches

One thing I’ve found over the years that has really helped me accept my mobility aids is having mobility aids that represent ‘me’. I personally could never accept long-term using the drab gray NHS walking sticks, crutches or rollators. The first walking stick I bought was floral patterned and then my first pair of crutches were silver with spots on in various shades of purple and a purple ferrules, handles and arm cuffs. My crutches now I have a custom design on which is a Cath Kidston floral print. My NHS wheelchair I jazzed up with spoke covers and pink push rim covers. I also plan on adding a bit of ‘me’ to my GTM wheelchair at some point.

I love what stylish mobility aids there are out there, especially for younger people who don’t want a drab NHS grey mobility aid, but unfortunately like most disability things stylish walking sticks, crutches, rollators and wheelchairs they often come at high cost. You can do DIY decoration on mobility aids such as on the more expensive side spoke guard covers to low cost coloured spoke covers for example, or using a can of spray paint. It’s nice to see how people have personalised their various mobility aids as you can see the expression of them as mobility aids are sort-of like an extension of ourselves and part of our bodies.

IBS Awareness - Living with IBS

April is IBS Awareness Month.

What is IBS and it’s symptoms?

Irritable Bowel Syndrome (IBS) is one of the most common digestive conditions. Around 1 in 5 adults in the UK have IBS. IBS is defined by belly pain such as cramps as well as wind, bloating and distension along with a change in bowel habits and changes to stools. Other symptoms include fatigue, nausea , backache and bladder problems. 1 in 3 people have IBS-C the C being constipation and another 1 in 3 have IBS-D with D being diarrhoea. Others with IBS might experience IBS-M which is a mix of experiencing both constipation and diarrhoea. Symptoms can be present daily for some people but for others symptoms can come and go over weeks or months. Symptoms can also alter over time. Symptoms often ease after a bowel movement. Symptoms can be unpredictable which can be challenging for some people.

Treatments for IBS

• Healthy eating and IBS dietary management 
• Identifying foods that trigger symptoms
• The Low FODMAP diet
• Probiotics
• Medication 
• Gut-specific behavioural treatments 

My experience of living with IBS

I’ve had IBS for many many years now. I feel that despite how common IBS is because IBS can be quite an embarrassing condition to have we don’t talk about it enough, especially for people to understand what it’s like to live with it and just how disabling it can really be. This means that IBS lacks awareness and understanding. People often think that IBS is just have bad belly cramps but there is so much more to living with IBS than that. The pain in your abdomen can be so intense that all I want to do is curl up in bed with my heat pad and moving makes the pain worse. Going to the loo with IBS is such an ordeal too and something I often dread. There’s also following my FODMAP diet to manage my IBS so there’s certain foods I can’t have or can have a little of; if I were to eat these foods it would result in my IBS flaring up. Clothing is also something that can be difficult when you have IBS. When I’m feeling bloated and uncomfortable I just want to wear something comfortable as tight clothing like jeans aren’t comfortable. I often actually wear maternity jeans, not really because of my IBS; mainly because they’re more comfortable to wear as a wheelchair user and as someone with a catheter but they’re also really comfortable when I am feeling bloated and uncomfortable. There are also extra costs to having IBS. Many people with disabilities and chronic illnesses face extra costs to buy things to help them manage their condition*.

There are many times when I’m in the bathroom or in bed hugging my heat pad to my stomach in severe pain because of my IBS. I also take medication to help with my symptoms which help. 

I also went on the low FODMAP diet a few years ago which really helped me identify my food triggers and now following the low FODMAP diet with the foods I can eat fine or a little of really has made a difference. I’d recommend the low FODMAP diet to anyone with IBS, you just have to start it under the guidance of a dietician so you’d have to ask for a referral from your GP or gastroenterologist. 

I personally like to do a lot of things alongside medication so as well as my heat pad and diet I drink plenty of fluids and I also find some herbal teas like mint tea, and I have a special digestive tea blend I drink as well to help settle my symptoms too.

Some of my symptoms can be quite difficult to live with. I find the belly cramps really painful. It doesn’t help that my Ehlers-Danlos also causes problems with my digestive system. Some symptoms are quite embarrassing so they can be hard to talk about and get help from medical professionals to sort them out so sometimes I’ve lived with symptoms for a long time before I’ve gotten help for them.

IBS is just a condition that I’ve learnt to live with. I get periods where it flares up and then I get times where it’s manageable. For me my IBS is often experienced as IBS-C so as well as medication to manage the cramps I’m prescribed laxatives which I take when needed. I also find having a healthy diet with foods that are good for digestive system help too alongside staying hydrated.

At the moment I am having some problems complicated by my Ehlers-Danlos so I’m waiting to see the gastrointestinal consultant and go from there if any tests are needed to investigate etc.

* Read about Scope’s ‘Disability Price Tag’ on extra costs here.

Things I find help my IBS

• Heat pads or microwave Warmies
• Portable single use heat pads that I can take out with me
• Wype* toilet paper gel - you just apply it to toilet paper, wipe yourself clean and pop it down the toilet - it’s much more environmentally friendly than toilet wipes
• Medication both prescribed and what you can get over the counter 
• Boot’s ‘IBS Cramps Relief’ (same medication as Buscopan)
• Boot’s ’IBS Wind & Bloating Relief’ medication
• Carrying a ‘Can’t Wait’ card in my purse to show that I need access to a toilet or Changing Places
• Keeping a RADAR key on me wherever I go - this gives me access to more public disabled toilets and Changing Places 
• Herbal teas
• Mint tea
• Happy gut tea
  
• Some yoga movements can help with my cramps - I can do these laid in bed

Resources

• Guts UK - Information on IBS
  
• Order a free ‘This Can’t Wait Card’ here
• Order an official RADAR key here
• Changing Places toilet map

12 years later

February this year 12 years on way back from 2014 marks the month my life changed forever. I’d had the flu from which I never seemed to have recovered from. 

On top of my ongoing flu I was experiencing that February in 2014 I also had my first tonic-clonic seizure. Before February at first I was having like daydreaming moments but my head would feel really fuzzy and I’d be really confused afterwards. I now know these to be absence seizures. But once I’d had my first tonic-clonic seizure I was having different types of seizures multiple times a day.

Living undiagnosed

I plan to write a specific blogpost on this topic however living with undiagnosed symptoms was so difficult in so many different ways. I’d get so frustrated with myself and I’d blame myself over my symptoms and not understanding what was happening to me or why. It was also scary and bewildering when new symptoms developed or when my health would worsen. I didn’t know what to do for the best for myself. Like should I try and exercise more but then I was struggling with my mobility and was using a walking stick the right thing to do? Did I need more coffee, more sleep, less sleep, supplements if so which ones?!

I also developed medical trauma from having my seizures but also from the things I heard and saw in hospital especially when in A&E resus but also from experiencing medical gaslighting. 

Doctors and nurses didn’t always treat me so well, physically and verbally and mentally. When I had seizure clusters they wouldn’t give me the medication I needed on my care plan. Then when my EEG’s showed my seizures weren’t epileptic some doctors and nurses assumed I was faking my seizures for attention, or drug seeking or I was mentally unwell among other things.  

Some of my thoughts when I became unwell

Diagnosis time

Getting a diagnosis finally in 2017 was such a relief. I saw a specialist neurologist who specialised in FND and he diagnosed me Functional Neurological Disorder, this is a problem with the brain and spinal cord not sending messages around the body properly causing a plethora of symptoms. He also picked up in the appointment that alongside my FND I also had a condition called M.E. a Neuro-immune disorder that has a variety of symptoms.

Finally after years of living with undiagnosed symptoms, not being believed, being diagnosed repeatedly by my GP with Post Viral Fatigue Syndrome and just being told rest would make me better and countless times going to my GP asking for help and referrals and for tests all to come back normal I had names to my symptoms I could finally say I have FND and M.E. However but more importantly I knew I could finally stop blaming and beating myself up because I knew nothing was my fault.

My neurologist in his physical exam also picked up signs of Ehlers-Danlos so he referred me to an EDS specialist rheumatologist. After a genetic test to rule out vascular EDS I was diagnosed with Hypermobile EDS. With that new diagnosis came things like signs it was missed when I was a child as EDS is hereditary so I was born with it. I also had some of the same thoughts as when I was diagnosed with FND and M.E. The EDS diagnosis did make sense why I so easily subluxed and dislocated my joints; this was one thing I always wondered when I had my seizures.

Post-diagnosis 

It wasn’t easy however after diagnosis. I had to change my life a lot. I had to learn what triggered my seizures, and how to manage my symptoms better as well as how to pace myself. I also had to understand the conditions themselves. 

With my EDS diagnosis I had to do physio but with M.E. I experienced exercise intolerance and it would worsen my symptoms so I had to learn to do my physio but in a careful way that didn’t upset my M.E. too much. It was a fine balance at first.

Also with my EDS diagnosis came appointments for being fitted for splints and I had to learn when to wear them and when not to.

Becoming members of charities to do with my various illnesses really helped me in the early stages. This is something I’d recommend doing to anyone newly diagnosed. You can access a lot of information sheets and other resources as well as helplines and communities with others with your illness. I also got a staying safe with seizures booklet from Epilepsy Action which really helped.

There was already a lot I safely wasn’t able to do because of my seizures like use a kettle, cook, use the stairs, go out alone or drive and so much more.

Life now

Fast forward 12 years and my health has worsened over the years. I’ve had to fight a lot to get the care I need both from the NHS and also adult social care. 

My social care is now more-or-less sorted. I have two fabulous PAs, I just unfortunately have to use a care agency once a fortnight as there’s still a PA vacancy for then (the vacancy has been open 6 years but I remain hopeful). 

I’ve been lucky to get the equipment I need without really asking. I have a profiling bed with hybrid airflow mattress; I also have a bath lift and I’m waiting for a ramp for my back garden. My housing association have also been really good at adapting my bungalow for me too.

Some of the things I safely couldn’t do I’m now finding ways to be able to do those things. Sometimes it’s because I have the support of my PAs, or my seizures are better managed now I’m on medication or because I’m more attuned to my triggers but also because I have more confidence. Like 5 years ago I wouldn’t have thought it possible for me to be able to live alone. Also more recently like a year ago I wouldn’t have thought it possible for me to go out alone but now I have my Batec I share my live location with my PA who is at my home and I’ll take off for a short ride.

My GTM wheelchair and my Batec especially have been the best things I’ve ever bought. Since getting my Batec it does my mental health wonders. I’m just hating all this horrible weather at the moment as I’m missing going out so I’m looking forward to Spring and Summer.

I’ve also discovered more adaptations, aids and disability gadgets that help me and give me more independence.

I’m still learning how to get pacing and activity management done properly. It really isn’t my strength and it’s something I really want to get better at.

It is hard to see how my health has worsened over the years; I think because it’s been gradual I haven’t noticed it until I compare myself to how I am year upon year. Sometimes I have crashes to varying degrees with my M.E. and I’ll deteriorate, (personally my FND doesn’t fluctuate my symptoms just remain the same), and then I’ll have periods where my health will stabilise but not with much significant improvement and then something will trigger another crash. Read about M.E. crashes here. My EDS has also had a lot of complications. Also both with my M.E. and EDS I’ve developed secondary conditions which I have to manage.

Grief

I still sometimes grieve for my old life. When I used to be able to dance and do yoga so well. Or travel on a train or do volunteer work. Part of me thinks about Uni and graduating but another part of me wasn’t happy at uni and I wish I’d done another course at a different university. I think I only went for the course I did was because it was an undergraduate masters and it seemed daft to turn that offer down at the time. Part of me thinks about the career I really wanted and my plans for further study for my dream cream as a therapist with children. Now though I’d be interested in also working as a therapist with people with disabilities; help them get their head being newly diagnosed, grief for their old life or to deal with medical trauma and other such related things. 

Maybe one day I can return to some form of education but my focus at the moment is on just getting through each day and managing as best I can. It is difficult when you live in pain all the time and for me my health is so unpredictable and I have mini crashes and Post Exertion Malaise so easily. I need a lot of rest to manage my conditions.

Thoughts about disability 

I’m proud to say I’m disabled now but it did take me a while to accept that. My disabilities and health conditions don’t define who I am but they’ve shaped me into who I am today and I’m I different person for it. I’d say I have more resilience and I have more gratitude. My health has also over time made me realise who matters in life and who my true friends are too. I’m proud to be part of the disabled and wheelchair community.

How to make your Christmas chronic illness friendly

Christmas can be really hard when you have a chronic illness and there are lots of elements to it that make it a challenge. Getting cards written and sent out, gifts bought and wrapped, homes to decorate. Plus there’s events to go to that you need to have the energy for plus the pre-energy to get ready to go out: getting dress up, doing your hair and makeup and nail. It’s exhausting even before you get there! Then there’s the post event energy comedown crash giving you time to recover before the next event. On top of that you have your health to continue to deal with as well! It can often feel overwhelming and just exhausting to even think about.

As well because of your health you have to decline invites to events. This brings FOMO; not the ‘Fear’ but the ‘Feeling Of Missing Out’ because you actually are missing out and that can be really hard. I find it hard because I miss out on seeing family members I rarely see and I’d like to be able to see the but I know realistically my body can’t handle the event. The only event I do over Christmas and New Year is Christmas Day with close family. I just go to my Dad’s for a couple of hours to have Christmas Dinner and to exchange and open gifts from each other.

Christmas isn’t just hard on our physical health it can be difficult emotionally too. Like I said above missing out on events or feeling down because you’re in pain or an increase in anxiety or stress levels because it’s a change in your routine which can be hard for those with autism or difficult feelings around food if you have say an eating disorder or because this is your first Christmas in which you receive artificial nutrition, or you’ve had a deterioration in your health since last Christmas, you struggle with loneliness or a whole host of other things that can make Christmas a difficult time.

Ideas for a more chronic illness friendly Christmas:

1. Get Christmas themed bedding. This will bring some festivity to your bedroom especially if you spend a lot of time in bed.
2. If you spend a lot of time in bed think about decorating your bedroom for Christmas. This is something I’ve been thinking about how I can do this, like where can I put a mini tree that I can decorate (I love Sass & Belle’s tree decorations!) It’s something I need to figure out but something I’d like to do as I don’t often get to spend a great deal of time in my front room where my main tree is.
3. Buy Christmas pyjamas - I got some lovely ones from Chelsea Peers.
4. Christmas can be difficult emotionally for different reasons so so maybe plan some self-care activities over the holidays. If you find Christmas Day especially difficult plan some things for Christmas Eve evening: make a hot chocolate, watch your favourite film or TV show series and do your nails and put on a face mask.
5. Remember that there are helplines that are open even at Christmas. - I’ll do a blog post on what helplines are open over the holidays.
6. Remember to take time out to rest just as you would any time of the year.
7. Instead of wrapping things you can put your gifts into gift bags instead to save you time and energy.
8. You can get wrapping gadgets like paper roll slicers and on hand sellotape dispensers. I have both of these gadgets and they really do make wrapping much easier.
9. Start Christmas shopping early. I even have a basket of gifts ready to give at any time. This saves me time and money as it means less Christmas shopping. Plus remember gifts are more about the thought than how much you spend on someone.
10. I find making lists really helps both my anxiety and it helps me make a pacing plan. On my phone I made two lists one for cards another for gifts all multi colour coded and looked like organised chaos. I now have another tick box list that’s much more simplistic in my bullet journal with all the final tasks I need to do so I can now pace myself with that list between now and Christmas and it eases my anxiety seeing what I’ve achieved and what I still need to do.
11. You don’t have to look red carpet ready when going to events; it’s more about being there than having fancy nails, glamorous makeup and fabulous hair. What matters most is you being there.
12. Treat yourself to a really nice advent calendar. I’ve found this year getting myself an extra special advent calendar gives me something to look forward to each day and I’m loving a lot of the things I’m getting. I got myself a Birchbox advent calendar with luxury brand products in it totalling £460! The products make my skincare routine just that little bit more special and it’s enjoyable using new products. This also helps me engage in more self-care over the holidays too.
13. Do Christmas crafts that you find you can do to get into the festive spirit. There are a lot of  low-level activities¹ and activities you can do in bed² for example I got a reindeer punch needle kit that I know I in bed and I can do on/off for short periods at a time.
1. * these are activities that I’ve classed as low-level, for some people they may be more medium-level 
2. ** these are activities that I’ve found I’m able to do in bed
14. Listen to Christmas themed audiobooks. My annual go-to it ‘Twas the night shift before Christmas’ by Adam Kay which I always love listening to and it is so funny.
15. Don’t feel bad for asking your care agency to come out to you over the holidays. You deserve the care just as much as anyone else.
16. Plan days of rest, for example for myself Christmas Eve, Boxing Day and the days after that will all be rest days for me to enable me to go to my Dad’s to spend time with family on Christmas Day in the afternoon. 
17. You could decorate your mobility aids for Christmas like putting lights on your wheelchair wheels or tinsel around your guide cane. 
18. If you have a medical device like a catheter, feeding tube, port, ileostomy bag etc. you can get Christmas themed tubie pads, valve, line and bag covers as well as tubie face tape.

Life with chronic pain

September is Pain Awareness Month.

Name a type of a pain and I feel it. I’m not exaggerating when I say that I feel different types of pain, having multiple diagnoses each coming with their own types of pain mean that I do just experience different types of pain. 

Some pain days are better than others. Some days my pain is manageable and all I need is my regular medication to keep my pain manageable. Other days I can’t settle and I feel in despair over my pain levels; when I’m throwing all my pain management tools at my pain but still nothing is giving me any respite. 

In my bullet journal for this year I have a ‘Year In Pixels’ where I colour code each day marking each day from green to yellow to orange to red for my pain and fatigue levels each day. My really good days I mark down as green, a typical day I’d mark yellow, a bit of pain where I’ve used some additional pain relief I’d mark orange and those horrendous pain days I’d mark down in red. I probably am quite positive when I mark my pixels and I try to reserve the red days for those times for when my pain is leaving me in despair.

I take different types of medications a supplements to tackle the different kinds of pain I experience. Muscle spasms that leave me rigid, nerve pain that feels like a white hot nail is being dragged down, headaches and migraines, bladder spasms, generalised pain that can leave me so hypersensitive it’s painful for anything to touch my skin or I just get “pain” especially in my legs that I find hard to describe.  

I’m generally quite hypersensitive anyway because of my severe M.E. Noise and light and sometimes touch all cause me physical pain. It’s hard to explain how things like noise and light can cause physical pain, it’s just another unexplainable ‘M.E. thing’. Just like how my legs just deeply ‘hurt’ but I can’t describe the pain other than just a deep and intense hurting pain accompanied with hypersensitivity.

I don’t like to just rely upon medication to help with my pain. I like to take a holistic approach to my care including treating my pain. I’m not a person who will just sit back and let my doctor write out prescriptions and expect that to do all the work.

Massage therapy is one big thing that massively helps with my pain and when there’s been gap in my regular appointments I really notice it. I notice that my circulation is worse, I have more muscle  spasms and ridgitity too, I have more pain in my joints and my headaches are worse. All things and more Hollie my massage therapist targets when she does my massage therapy. My massages aren’t the ones you’d have at a spa. What Hollie does and is trained to do is to treat people with chronic health conditions and the physical symptoms. No two treatments are ever the same as Hollie always targets what’s bothering me the most each time I see her. She uses additional things to help my symptoms while treating me too, like heated mitts, hot compresses and hot stones. I can’t begin to say how much of a benefit massage therapy has been to me over the past couple of years. I honestly think it’s kept me going so well that it’s the reason why I’ve had so few increases in my medication doses over the years. I’ve had no increases in my pain relief at all which is amazing.

I always use the term ‘pain relief’ instead of ‘pain killer’ as my slow release pain relief and my breakthrough pain relief medication does just that, it gives me relief from my pain, it doesn’t kill or eradicate my pain completely (as much as I would love that to happen). Sure they help a lot and allow me to just about function each day and to have some form of quality of life, however my pain will still always be there to some degree in the background and my breakthrough pain relief will just give me som respite, some relief from the extreme pain I’m in.

As well as massage therapy I find heat really helps my pain too. I enjoy my hot baths in the morning. I also have electric heat pads and a heated blanket. I have hot water bottle and also a long hot water bottle that I find good for bladder, hip, back and shoulder pain. I have a rechargeable period heat pad that I use for bladder pain.

When I can tolerate it I really find my weighted blanket helps too.

I used to be able to tolerate my TENS machine that I found really helpful. It had a heat up part to it as well which I found helped too. I haven’t tried it in a while to see if I can still cope with it. I have my acupuncture/TENS pens that I can sometimes tolerate too so maybe I could tolerate a short session on my TENS machine on a good pain day maybe?

I find mindfulness helps too. Doing body scans (I have to find the right body scan exercise that doesn’t make me think about each part of my body for too long) I find good and have been recommended to me by pain specialists. I find visualisation meditations really effective as well as breathing exercises and soundscapes too. I use these during rest periods as I find regular rest periods help to prevent me from ‘booming and busting’ which among other symptoms makes my pain levels worse.

Pacing is important to manage my symptoms including my pain levels.

I find distraction helps as it takes my mind off my pain. Activities like colouring, crochet, iris folding, reading or listening to books or podcasts, any low-level activity that doesn’t use much energy I find helps take my mind off my pain.

I find this especially in the evening when I’m struggling to get off to sleep due to pain. I call my insomnia due to pain ‘painsomia’. My pain does affect me at night as I just lay in bed and I’m more hyper focused and hyper aware or the physical sensations and pain in my body and as a result the pain probably becomes more psychologically intense. I take breakthrough pain relief as I physically am in pain but I want to do something else to help my pain as well so I’ll put my audiobook on and lay and listen to that, or if I’m more restless I’ll do something creative or I might get myself a hot drink. Things that help my sleep problems as well as my pain.

When I can, physical movement helps too. I find it helps to keep my body active. I do my daily physio or instead I might do some yoga aimed at people with chronic illnesses. I’ll just do what I can within my restrictions and I just do 5/10 minute routines and I find this helps me mentally too to know that I’m staying active to aid my wellbeing and add to that holistic approach. If I’m in pain I find it helps to just move, stretch, wiggle etc. especially when it comes to my joint pain. I just stay mindful whenever I do yoga not to do something that would worsen my Ehlers-Danlos as that would just create more pain! I’d love to try movement in water in the form of hydrotherapy.

Another funny thing about me and living with pain is I always save my number 10 on the pain scale. Just in case I’m ever in a situation when I neeed my 10 but I’m sure even when that day comes I’ll still say 9. Stupidly my local hospital are now using a 1-4 pain sale. If I save my 4 there they won’t give me adequate pain relief. The 1-4 system really doesn’t work for people with chronic pain as when I’m asked what my pain is like usually I really don’t sound believable. I probably sound like someone seeking the best drugs they have and they have little clue about my conditions so me explaining my needs and care to them only worsens the situation. Unfortunately when you live with chronic pain you often have negative experiences in healthcare. I have had some positive experiences however but it’s hit-and-miss.

More awareness of chronic pain and how it affects individuals and listening to patients on an individual level is much needed as we’re all affected differently. We all have different medical conditions that affect us differently and the pain part of the that affects us uniquely too.

Links:

Pain UK

British Pain Society

Pain Concern

I’ve done pen palling for many years now. It was something I started when I became chronically ill. It became a hobby for me to do as well as reach out to other young people who a few also had chronic health problems or disabilities, others just enjoyed putting pen to paper.

I think I started out buy joining a a Facebook group called LettersOfLove run by Jenny who just wanted a group where people can write to one another without the pressure of having to become pen pals and exchange letters back and forth. I made a few pen pals through that group one I still write to now and I’m still in touch with Jenny. However the group fizzled out as only a couple of members of the group were actively mailing and not receiving much mail in return from inactive members.

I’ve had some negative pen pals in the past but when that happens I just stop writing, the same goes for people where I just don’t feel a compatibility. I’d rather have a positive group of people that I enjoy mailing to.

I’m now in a place where I have a really good group of pen pals. Some people I write to back and forth others we’ll just occasionally exchange mail.

I write all over the world: Switzerland, Germany, Canada, USA and New Zealand as well as the UK. So I do get to see some interesting stamps which I like to collect.

Why mail is so important to me

Mail is so important to me as it gives me a connection to other people. I’m unable to socialise in person and I experience a lot of loneliness and isolation. I also don’t have any friends in person which adds to those feelings. I only really see my carers/PAs and nurses and close family which definitely isn’t the same as hanging out with friends in person. My only interaction with friends is digital messaging like WhatsApp or Instagram alongside letters.

As well as wanting to connect with other people I also want to connect with other young people with chronic illnesses/disabilities. I’d love to meet up with others in real life but for now letters will do. I find it really helpful through letters to share that lived experience of illness and disability and how we live with and cope with our health problems and share ideas such as aids we find helpful or discussing pretty mobility aids and so much more. I like to talk about chronic illness and disability all in a positive way and I find that with the pen pals I have. We also have that balance where we also talk about everyday things too. Things like books, craftings, days out, pets, organising, baking etc. as our health problems aren’t the sum total of who we are. So writing about health and non-health things I find is a good healthy balance. But connecting with other chronically ill/disabled people in a positive way makes me feel like I’m not alone in what I’m dealing with with my own chronic illnesses and disabilities and also what I’m still trying to find answers for. It’s comforting in a way knowing that there’s others out there and also comforting knowing that there’s people that want to take the time to send me mail, whether it be a regular exchange of mail or us occasionally exchanging mail to one another. It’s that kindness of people that means a lot to me.

I have a fantastic group of pen pal now. Some I exchange letters with back and forth others we’ll exchange mail to each other periodically with no obligation to write back. What I also love about my pen pal group is how patient and understanding they are at how slow I am at replying to letters because of my health conditions. They also don’t mind how much or how little I write as they know that that’s all I’m able to do that moment in time to reach out to them. That also works vice versa. I give my pen pals however much time they need to write back due to health, life, work etc. and I also know that however much they’ve written is all they’re able to do that time and I totally understand and appreciate that they’re given me their all. What matters to me most is just receiving that postcode, card or letter and the thought, time and kindness that’s gone into that.

When I write a letter to someone I feel like I’m talking to the person I’m writing to and that gives me that closeness to my pen pals. There’s always something to write about. My life isn’t overly exciting but I can write about my current books and craft projects and my garden at this time of year plus maybe disability things too depending on who I’m writing to. I also love asking my pen pals lots of things too. I also get so much enjoyment out of creating unique mail. Never once have I sent two pieces of mail alike. Sometimes I’ll create a card, other times a letter or occasionally I’ll send a postcard. I love finding and sending novelty shaped postcards; the last one I sent was shaped like a rainbow. I love doing envelope art too and creating lovely cards or pockets for additional pages and stickers. I’m in awe of some of the pen pal creations I see on YouTube and Pinterest which I try to recreate as best I can at times.

It’s lovely to read about what a pen pal has been up to like what they bought on a shopping trip, or their day out at a craft expo, or what they’re currently reading, listening to or making. Other things too like about their job if they have one and how awful their team manager is and a running saga with that. Plus other things like hobbies they’re into like one of my pen pals loves visiting bothies and sometimes writes letters to me on retro computers or on a typewriter. Pen pals will tell me about their favourite holiday places to visit, or in each letter will give me a running commentary about what naughty things their dog has been up to since the last letter. There is just so much that can be written about that I love to read; it takes me into a bubble away from everything. It makes me feel like I’m with that person as I’m reading their letter which is really lovely and it lifts that loneliness I feel a lot of the time.

One day when I’m well enough to travel I’d love to go and meet some of my UK pen pals. (I think travelling internationally to meet my international pen pals would be a bit too much just yet.)

It’s lovely to see something pretty come through the letter box among boring white and brown envelopes containing medical appointments, council tax and water bill mail. Especially on a day when I’m struggling either with physical symptoms or my mental health, it really does brighten my day. It also reminds me that people are thinking of me and that I’m not alone and people do want to take the time to write to me. It’s lovely to see the postcard. Or with letters how they’ve decorated the envelope, the writing paper they’ve used or how they decorated the paper. As well it’s always kind if extras have been included like sheets of writing paper for me to use, stickers, funky post-it notes and paper clips, mini activities like a question sheet, something to colour in, a wordsearch or suduko page. With cards it’s lovely to see what card my friend has bought for me. I have one friend who always buys very ‘me’ cards. I also love seeing handmade creations too.

When I lived at my Dad’s I had a giant notice board with lots of novelty push pins to display my pen pal mail. I really missed that when I moved into my bungalow as it was too big to put up here. Then just this Christmas gone I got some fairy lights with pegs to display cards and little bits that are included inside. I love this as I love fairy lights so it’s a great way to display my mail. (Fairy lights are perfect as I love soft lighting and with my M.E. I can cope much better with lighting like fairy lights especially as I can dim these peg fairy lights.)

Another reason why mail means a lot to me is I like to have my mail to look at in my room as it reminds me of who has sent me what. My most special mail I have where I can see it from my bed most easily and my peg lights go behind my bed. I can look at everything pegged up and know who it is from. Looking at my pen pal mail reminds me of the love put into that card and how loved I am by people and the kindness of people and how grateful I am for everyone who has ever sent me something. It really brightens me up to look at it especially when I’m struggling on my bad days. This really means a lot to me as when I’m at my worst with my M.E. and not being able to get out of bed or move, or when my pain is so bad or other symptoms are keeping me bed bound it’s lovely to have something uplifting to look at that reminds me that I’m not alone and that there are lots of people in the the world that care about me and think of me and that no matter how alone I feel I’m not alone.

So that is all of why mail is so important to me. It is so much more than simply a card in the mail.

Cards2Warriors

My tea mail

I also wanted to give a shout out to Cards2Warriors. 

They are an amazing organisation based in the USA but support people all over the world. They’re amazing volunteers have really supported me over by sending me cards of support. This really means a lot when you’re dealing a lot with your living with conditions like severe M.E. 

I’ve also received cards from school project volunteers in the USA who participate for extra credit. This also really means a lot to me that they give up their own time to make cards and write to me.

Receiving mail from Cards2Warrriors reminds me that lots of other people are thinking of me and wanting to show me support. 

I also won their tea mail competition and received a stash of Taylor’s peppermint tea which I really enjoyed.