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.

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.

Looking back over 2025 and into 2026

So what were my goals and intentions for 2025

• Set more time aside for self-care

Done

• Rest more and try to create a schedule for my day

Not quite always done

• Engage more in my faith - attend more Meetings for Worship and join in with groups run by Friends at the Meeting House

Sort of doing more now these past few months. I join in on zoom fortnightly.

• Spend less and use up what I have especially when it comes to craft and stationary supplies

Done

• Read up the books on my shelf and don’t buy new books unless they’re already part of a series I’m reading that’s on my shelf 

Not quite done as I got my Kindle 

• Continue with my 1SE project for 2025

Done

• Do my Jar Project with my best friend 

Done

• Continue to spend less time on social media 

Yep I’d say to that one

• Do random acts of kindness 

I’d say yes to this too

In 2025 I managed to do:

Me and my best friend set out to declutter, save money and not buying craft things or pen pal supplies. We did this jointly to support each other with these goals throughout 2026.

• Decluttering most of my bungalow. I’ve donated a lot and thrown out a lot. It’s made me realise that I don’t need so much stuff. I listened to a book on how to declutter and simplify your life and from that I made a detailed floor map to break down really simply the areas that I needed to declutter. This helped with my ME and pacing the task too.

• I also reduced my craft supplies and donated wha I didn’t need or would use to the hospice for patients there to use in craft groups. I’ve bought very minimal craft supplies this year and I used up what I had; most of what I have bought was to help me use up what I have like aperture cards to use up my iris folding papers.

• I stuck to buying no pen pal supplies and again I’m using up what I have. 

• I also tried to spend less this year and have as many ‘spend-free days’ as possible. When I had a ‘spend day’ I’d group together everything I needed to buy so as to have less ‘spend days’.

• Do some opportunities in my role as a Storyteller for the disability charity Scope. I also volunteer with Cards2Warriors and send mail out to people having a difficult time with their health.

• Continue another year with my blog. I’ve taken a back seat on social media with my disability accounts; I want my social media to be positive plus I was finding it exhausting making content.

A project I did this year with my best friend was something my old therapist suggested; it was a jar project where we write notes to each other and put them into the jar. We’ve exchanged the jars to open in the new year which can is often a difficult time so it gives us both something positive to do in the new year.

In 2026 I want to:

• Finish off my decluttering my bungalow and sending off my box to the charity shop so it’s not cluttering up my bedroom.

• Again, not buy any craft things and continue using up what I have.

• Carry on using up my pen pal supplies. - I eventually just want to have a stash of pretty note pads to write letters on and make my own envelopes.

• Try and spend even less and have more spend-free days.

• Continue my role as a Storyteller for Scope and hopefully there will be some opportunities for me with them next year.

• Continue brightening peoples day with mail through Cards2Warriors. I also hope to do some artwork and design some cards for The Chronic Warrior Collective which is a connected organisation to C2W.

• Carry on blogging for my 8th year with as many posts as I’m able to write. I aim to still do disability content and I want to write more about mental health but I also want to try and do more non-disability content as well.

• Read as many books as I can now I have my kindle!

• Do 1SE again.

• Sell or donate the clothes hanging on my wardrobe door.

• Get to a point where I’m happy and recovered from my anorexia or have learnt to control it rather than it controlling me.

• Go on as many Batec adventures as possible - I’d love to go to the woods and down the sea front. 

Looking back at 2024 and into 2025

I always try to think positively and there have been many positives in 2024 but equally it has had its challenges. I think living with physical and mental health conditions you can deal with with them either of two ways you can wallow in it or you can try and be a warrior and face things; I’ve always been the latter. Yes I do have moments where I’m ’sick and tired of being sick and tired’ and I’ll sometimes have a bit of a cry but I always pick myself up and quickly dust myself off to carry on.

Reflecting on 2024

2024 has been a mixture of a year with some really amazing things and some really tough times.

I often choose a word for the year and my word for 2024 was ‘enjoyment’ and on the whole it’s been an enjoyable year and I’ve done things for my own enjoyment. I began to be able to physically read books again so that was enjoyable and I’m spending far far less time on social media which is making my life more enjoyable as I don’t get the FOMO: Feeling Of Missing Out. 

I also got my Batec in August and going for Batec rides is me in my happy place and I enjoy being in the outdoors with the aid of my Batec; I’m now spending way less time sat in my PAs car drinking coffee so I’m saving money on coffee! I also love writing to, emailing and messaging friends.

I’ve also enjoyed settling into my home more and more and doing more to it to make it my home.

I also ordered my new wheelchair in November which I’ll be getting in February 2025 which I’m so excited about!

I think some of the harder parts of 2024 was when my mental health took a dip in June. I was struggling emotionally but I’d also gotten too ‘sick and tired of being sick and tired’ but out of that and encouragement from the mental health team I wouldn’t have gone ahead and bought my Batec so a huge positive came out. Recovery isn’t linear, I’ve struggled with my mental health more of my life than I haven’t so inevitably I will relapse, but it’s knowing and having the courage to ask for help. I also have my bad days, especially with my M.E. and it’s been an uphill battle to get specialist services but I’m hoping in 2025 a referral will get accepted somewhere.

In my 2024 start to a new year post I definitely think I set out what I planned to do in 2024. One thing was ‘goals vs values’ so for example rather than setting the goal to read a set number of chapters (goal) I just read until I’d happily finished reading (value) the same with the number of blog posts I’d write each month some months I wrote 1 post other months I wrote 4 posts, what mattered was what I valued and enjoyed in writing all of those blog posts and some months I was more well or less well, or had more or less commitments going on in my life.

Another thing I focussed on was my limited energy and using it on things that are productive and helpful and positive. I think this led me to taking a big step back from social media, focusing more of my attention on my friendships which I value more and using what energy I do have in the day to do something I enjoy like writing a reply to a pen pal or doing something creative or blogging or going for a Batec ride - things that better benefit my emotional wellbeing.

I’ve also continued with my fundraising this year and raised £70.25

The start of a new year 

I think for this year my word will be ‘kindness’.

I’m so excited to be able to say that my new wheelchair is being delivered next month! it’s going to improve my life immensely and make it easier to transport as well as use with my Batec. 

Some of my goals and intentions for 2025 are:

• Set more time aside for self-care
• Rest more and try to create a schedule for my day
• Engage more in my faith - attend more Meetings for Worship and join in with groups run by Friends at the Meeting House
• Spend less and use up what I have especially when it comes to craft and stationary supplies
• Read up the books on my shelf and don’t buy new books unless they’re already part of a series I’m reading that’s on my shelf 
• Continue with my 1SE project for 2025
• Do my Jar Project with my best friend 
• Continue to spend less time on social media 
• Do random acts of kindness 

And let’s see 2025 will turn out like and where it will take us!

It’s okay not to feel okay

Mental health is a topic I’ve recently realised I need to write more about. If I feel okay writing about physical health then why shouldn’t I feel okay writing about mental health. (Maybe it’s because mental health holds more stigma?) Our mental wellbeing is just as important to see to as our physical wellbeing. The same goes for medication: medication for or bodies and for our minds - they’re both just as important to take to be well and to not to feel ashamed of taking or admitting that we take.

Recently I’ve been struggling more with my mental health, to the point where I’ve needed help to manage things to be safe and well - Again there’s there shouldn’t be any shame in admitting that we’re getting support for our mental health; we freely talk about seeing a doctor or nurse or physiotherapist so it should be okay to say that we’re seeing a therapist or psychiatrist or community mental health nurse. 

Anyway, as well as the professionals supporting me my Dad and best friend have been amazing throughout this blip that I’ve been going through and I can’t thank everyone for their support. I’ve also got back in touch with my old therapist and I’m seeing her again which means a lot and it will be good to just have a space to simply be and just let out.

This blip just came on though a mixture of social stressors and my physical health being a bit worse than usual. I do find that the my physical and mental health impact upon one other so when I’m having a bad day physically my mood gets lower. On top of that when I haven’t slept well that affects me both physically and emotionally too, and also when I’m not well physically and especially emotionally I don’t sleep well making things worse. 

 I’ve struggled with my mental health most of my life but for quite a while now I’ve been managing really well and I’ve not needed much support apart from a recent medication increase to help with my anxiety (I’d been waiting for the appointment for nearly a year) I’d also had a couple of sessions with my therapist again in the new year because I was struggling to cope due to anxiety but a few sessions was all I needed compared to the year and half of therapy I’d had the previous time I’d had therapy with the same therapist. It’s good to know that she’s [the therapist] always there for a ‘top-up’ of therapy and it’s always with the same therapist plus the last time and this time when I’ve needed a top-up I’ve gotten a session within a week - the perks of private therapy. It does cost me but it’s discounted as I’m on PIP but it is a medical expense just like a physical health expense but I get what I need which I wouldn’t get with mental health services (MHS) locally plus my sessions aren’t time limited and I get the type of therapy that suits me which is creative therapy which again MHS all don’t offer.

Whilst I’ve been going through this mental health blip I’ve been doing a lot of diamond art which I’ve found helpful to do. My concentration hasn’t been great and sometimes I struggle to distract myself and just listening or watching something wasn’t enough so when I called for support someone suggested doing colouring or diamond art with the television or my audiobook/podcast on in the background. I found her suggestion really helpful initially I did some colouring and ordered a diamond art kit and now I’m on my third kit! I’ve found mini projects easier as they seem more doable compared to a giant picture; I now need to find what to do with all the key rings and bookmarks I’ve made! - I’ve just bought some setting glue so I can fix down the gems and I’m thinking of selling them and putting the sale towards my fundraising? I’ve gifted some of the things I’ve made to friends and a bookmark to my Dad for Father’s Day.

I find engaging my senses helpful for grounding me too. So I’ve had my aromatherapy diffuser on, my Mathmos protector on (it projects like a lava lamp onto my ceiling - I’d love a galaxy protector) and I used to use lollies but I’ve discovered vegan fruit pastels. I also have my fidget ring that I wear or I’ll have a tangle toy. I have other things in my self-care box too like a calm jar, colouring bits, a micro Lego block type kit to built and other things - most of my self-care box is based upon the contents Megan put in my Recovery Shoebox* and my self-care box is the one Megan made for me. My therapist and I also made a self-care jar with little self-care notes in there to remind me of things to do or things that make me smile and feel positive.

Trigger Warning:

*The Recovery Shoe-box Project was started by Megan who has now sadly passed away by suicide. The project was personal to Megan as she struggled with her own mental health but she helped so many people through the project. In her memory Megan's friends and family continue the project to reach out to more people with mental illnesses to help them with their recovery.

Personally recovery for me is learning to live with my mental illnesses. I rather them not be there but depression and anxiety will always be there but it’s about me learning to be the one in charge, that’s what recovery looks like to me and inevitably I’ll have good and bad days and blips and wobbles but that’s okay. It’s okay to not be okay all of the time.

A year in my home

Note: when I first posted this post I thought it was move in date but I’d got muddled up as I often do. I actually moved in on the 11th May not the 10th April!

A year ago today I will have been living on my own a whole year. It still feels surreal sometimes that this is my own home and I’m the only one that lives here. 

I’m also not quite sure how I’ve made it this far, I couldn’t have done it without my care team of PAs, carers and nurses and everyone else such as OTs and not forgetting my family especially my Dad. We all need a Dad, someone to do DIY for us or to sound off to or ask for Dad advice. Also on a supportive way my friends, even though they’ve not been here in person they’ve been there virtually on my phone. One friend in particular has really been a rock for me, just someone to talk to, vent to, share my day with and share funny animal videos with etc. we all just need people like that in our life and though she may not be here in person this friend has really kept me going too.

It hasn’t always been easy; it’s difficult living on my own especially on my bad days or on the odd days when my care hasn’t been there but I think I’ve done well and my Dad thinks so too. When I first moved out Dad thought I’d have a lot of ambulances coming out to me (I hate paramedics and hospitals) but I’ve actually only had two ambulances over the past year, one for a bad concussion which I got from falling during a seizure and another for and asthma attack and only the concussion landed me in the Emergency Department. Dad also thought that CareLink would be calling him a lot too to come and check on me but they have only called him once when I had my asthma attack so to my Dad I’m doing and coping much better than he expected.

Slowly this little bungalow is more becoming my home. When I first got the keys I did decorate it but over the past year I’ve changed more and more things to make this place mine. Dad’s renovating the back garden for me which I’m really excited about. I’ve linked in below a tour video of my home that I put up on my YouTube channel, since then there’s been several changes to my my home that I noticed when I watched back over the video like how my bathroom floor has been changed now so something much nicer, I now have a proper makeup mirror in my bedroom at my makeup desk (which has been reorganised) and I’ve added a yellow HomePod on a stand next to my toaster in the kitchen and also the top of my kallax unit in my bedroom has had a change around and a shelf has been put up above my craft desk and my letter rack has been moved to that shelf and I’ve finally changed the seat cover on my rocking poang chair too!

I still haven’t yet found my routine here. I more just go with the flow and try to listen to my body when it’s telling me it’s getting worn out. I had a strict routine when I lived with my Dad and stepmum but here I don’t really think I can have a strict routine as my evening care is always at different times and I have to wait the nurses to come at no fixed time some days etc. plus when I’m feeling up to it I have house jobs to do like tidying up or putting laundry on. These things do tire me out and it does make living on my own difficult. I try to delegate as many tasks as possible to my PAs and carers to save my limited energy levels and this does help and this is partly why they’re here to help me out and to enable my independence and to enable me to be able to live alone.

Despite the challenges and fatigue and everything else from living alone I love it! - “We can do what we want to again”: Moomintroll (The Conscientious Moomins) I love living by my own rules just simple things like being able to change my pjs as often as I want (as it’s me that has the full laundry basket), and being able to choose my own meals, or just being able to do my own thing and do what I want when I want (within reason and when my body permits me to do so as well) and having my own space too. I’m a person that likes solitude and quiet and my own space and being on my own so as much as I love my PAs and carers I do like my time alone (apart from when I’m not well and therefore I’m struggling without the additional support so then I am relieved to see my PAs/carers).

The layout of my little bungalow has also worked out perfectly for my needs. I’m only a few meters from anywhere and it actually works having the kitchen integrated in the front room as it’s less rooms and less walking for me. My housing association have also been great putting in adaptations like grab rails and a fire door and I’ve also got some extra things from my Occupational Therapist. All this means that I can live more independently (especially when I’m on my own) and tasks are made a bit easier for me or things/places are more accessible for me. I didn’t really have much of that at my Dad’s, I didn’t have the grab rails and the stairs were really difficult for me so it’s great to now be on one level in a bungalow. You can’t have everything though, I don’t think there’s a thing as the perfect property; there’s always that one thing and for me the one downside to living here is the parking.

It feels good to now have my assured tenancy; it feels more permanent and solid and like I have a future here and I do see a future for me here and it feels amazing.

Tour of my new home - link to YouTube video 

The start to a new year

Something an old pen pal introduced me to the idea of was picking a word for the year ahead of you. I’ve chosen the word ‘enjoyment’ for 2024.

Something my pain psychologist introduced me to was ‘goals vs values’ so for example the goal of reading three chapters and feeling like you’ve failed if you get too tired and don’t read three chapters, or thinking about what you value and enjoy about reading and just value and enjoying reading.

I’ve decided not to set any goals this year like I’ve always done in previous years. Life can’t be predicted. I didn’t manage all my goals last year as I unexpectedly moved into my own home.

I’m just going to focus on what I value and enjoy. I enjoy blogging and YouTubing and I’ll just do it for enjoyment however many posts and videos I do and subscribers I get. I’ll enjoy reading however many books I manage to physically read; I’m just grateful I’m able to read books again, but audiobooks is still reading too. I value my faith. I also value my friendships and I made some wonderful friends last year who mean a lot to me.

I also enjoy having my own home and I feel lucky to have my own home at my age. I want to spend this year settling into my home more and enjoying it and making it more my own space and home.

One thing my therapist said to me recently is ‘you have limited energy, use it on things that are productive and helpful and positive’. My M.E. means I don’t have a lot of energy and I have to be careful with my limited amount of energy. Sometimes I don’t always spend it right; one thing is on social media. Sometimes I waste my energy on social media getting upset, feeling like I’m missing out and getting frustrated. So I also think that this year I’m going to spend less time on social media and focus on the people that matter like friends, pen pals and family and also myself.

6 years of blogging

Today marks 6 years since my first blog post way back in 2018. 

Since then my blog has grown a lot over that time and evolved as I have. Back then my blog was named ‘Diary of a Zebra’ and had very much a diary format sharing my life and mostly what went on with my health. Nowadays however I’ve moved away from being defined by my chronic illnesses and disabilities; I’m still happy to say that I’m chronically ill or disabled but I don’t feel it necessary to chronicle things like ED admissions or write about hospital appointments. I still feel it’s important to write about my illnesses and to raise awareness of them but just in a different way; a way I feel is more healthy. Sometimes I’ve thought about taking down those old posts as they’re not ‘me’ anymore and not what I consider productive or healthy but at the same time my blog shows how I’ve changed over time. I also share less guest blog post too. Some of the guest posts like my old blog posts I’d consider unhealthy but I wanted to give people a space to have a voice and my blog was their platform to share their writings.

These days I more focus on a topic or awareness event and write about that. You may also notice that I post a lot less, this is mostly due to a decline in my health. I still love blogging and I want to continue writing when I’m able to to help raise awareness on topics I feel passionate about and to bring more awareness around the illnesses I have, something that is very much lacking especially when it comes to M.E. or indeed all of my current diagnoses.

I hope, health permitting, and to be more organised as well, to hopefully blog a little more this year than I did last year.

I feel grateful to the M.E. Champion Bloggers and being a member of that community as it gives my blog a bit of recognition as well as the occasional publications of my blogs in the M.E. Association’s membership magazine as well as the access to the group on Facebook (when I actually log on!).

So here is to another year of blogging ahead. 

PS - I still do accept selective guest posts so if you would like to write something for my blog you can contact me on the menu at the top of homepage.

Settling into my new home

I’ve been living in my new home since April this year. I love having my own place to call home and the independence it brings and being able to do what I want; when I want (within reason of course!)

I wanted to move out for two reasons. The first was that it was my 30th birthday this year, back in June and I felt it was time to live on my own. I also needed to live somewhere that better met my needs in terms of my health.

It wasn’t easy finding a property as they all seemed to have or being given wet rooms whilst vacant and for me I needed a property with a bath due to my own needs. I looked at one property and I ticked all the boxes and it was spacious but the promised bathroom actually had a brand new wet room. That was the first property I viewed. I became number one for a number of properties but the vast majority of the time it turned out the listing was outdated and the bathroom was now a wet room or was having one installed or the area turned out to be less than ideal. I then bid for one property; I even called and begged my case for it but I was just told to call the council but then I dropped down to number four for the property so I thought no chance and moved on. 

I believe everything happens for a reason as a while later with that property now out of my mind I got a call asking if I wanted to view it as three people had turned it down. It was my second property viewing; my housing support worker couldn’t make it but I had my PA with me. I was a little unsure as going for a property is a huge commitment but my PA (who I’m really close to as she’s been my PA for a few years) urged me to say yes to the property. I can honestly say it was the best decision I’ve ever made and I’ve never looked back. I believe that first property fell through because this property is a million times better for me.

My Dad and stepmum did all the painting and decorating to get it ready for me. I’ve truly put my mark on my home now. Every time people come round they comment how very ‘me’ it is! The front room is all colourful and miss-matched. My home is also a homage to IKEA!

In the front room I have a little seating area, a craft area then a kitchen space. The latter I was unsure of the first time I saw it but I’ve made it work for me. It’s small with not much cupboard space so I’ve added an extra unit for extra space. In regards to my mobility I’m only a few meters from place to place around my bungalow which helps me so so much. Then the other room is my bedroom which is big and spacious with an almost en-suite like bathroom. Then off from my bedroom as a real bonus I have my own garden! Dad’s helping do my garden up ready for next year which will be lovely so I’m looking forward to that.

As well as my bungalow being better for my mobility I’ve also been able to have some aids and adaptations that I was in need of such as grab rails in the bathroom and my perching stool and my step and grab rail to access the garden. It’s also better having access from both sides of my profiling bed for PAs/carers as well as nurses. I’ve also made my own accommodations such as smart lighting and smart plugs which I can control on my phone or through my HomePods with verbal commands. I’ve also been able to install safety features for my home both for myself but also in case of emergencies which put my mind at rest.

I’m much happier living here. It can be tough at times I won’t lie especially on my bad health days and it doesn’t help that my care situation isn’t sorted properly so that can be challenging at times.

Sometimes it’s the little things I like about living on my own like choosing my own laundry products and choosing what food I have in. I will say I’m not a fan of doing the laundry (thankfully the cleaning is left to my cleaner) but I like it when I have my home to myself and I like the peace (esp when my neighbours are out and therefore it’s quiet) and just pausing with a mug of coffee or crafting in bed or in my craft corner or curling up with a book or when we had nice weather swinging on my swing seat in the garden.

I’m really looking forward to my first Christmas in my new home. It’ll be nicer to have a quieter Christmas too without the hecticness that goes on at Dad’s. 

I can see a future for myself here which is so lovely and I settle in more and more as time goes by.

Tour of my new home - video on my YouTube channel 

My front room with kitchen area

Fundraising update

So far this year I’ve managed to raise £64.50. 

I’m quite proud of myself as I did take a two month break when I was moving.

I’ve now made a start on Christmas cards so I can pace myself making them as well as taking pre-orders. 

I’m excited to see what my total raised is at the end of the year and donating that to my two chosen charities: Smile for M.E. and Action for M.E. I’ve already decided to continue selling cards and fundraising next year but for some different charities, (I haven’t decided which yet) but I love having an excuse to make cards and support charities close to me at the same time.

More about my card project

Some of the cards available to buy

Welcome to my new home!

 I have some exciting news to share, I finally have my own home!!

It’s a little one bed bungalow - secretly I much preferred bungalows over flats (- imagine having a deaf OAP neighbour who always had the TV or radio on full volume, it would have been a nightmare for my noise sensitivity!) AND this bungalow has a bath.

I was really struggling to find a one bedroom property with a bath and a times I was getting really low and fed up and disheartened as I kept being let down.

So basically because of my M.E. I really struggle with hypersensitivity so being in a shower feels like I’m being high powered jet washed - ouch! Plus I get cold in showers which triggers my muscle spasms - double ouch!! 

Locally there’s one big main housing association and they were the ones letting me down. I was bidding on properties that said it had a bath and as I was in the highest priority band for housing. I often won the bid on properties which supposedly had a bath but after I won the bid on the council housing system HCL I’d be told that the bid was skipped only for me to later find out that the information was out of date and the property actually now had a wet room. This happened about 11 times so you can see why I got so disheartened after each time this happened over and over again. Then there were the properties that whilst vacant the housing association installed wet rooms. Personally I feel there just seemed to be an assumption that disabled and elderly people needed wet rooms. When I asked them about the lack of properties with baths and wet rooms being installed the solution I was given: put an inflatable bath in the wet room!? Yep that was the serious solution that was given to me and my PA.

Me and my housing support worker was just in the process of trying to get me eligible for 2 bedroom properties when I got a call about this bungalow. 

When I bid on it I called the housing group that own the property (it’s different the the one I was writing about above) to put my case in for it but they said to just call the council and then when I became number 4 for the property I gave up on the idea of the property so I didn’t think it was to be but in fact it actually was! About 6/7 weeks after I bid in the property however I got a call and I was told that 3 people had turned it down and was I still interested in it and if so would I like to view it. 

There’s no storage space so nowhere to store my wheelchair but I’ve found a spot near the door to put it and my bedroom is quite big so I have enough room to make it work to store my medical supplies.

The kitchen area isn’t the best but again I’ll make what I have work and it’s just me living there and I’ll see how I go once I’m living there. One solution Dad gave was to get an external kitchen unit to extend the space and I’m going to put a shelf up too. The kitchen area is part of the living room and the living area is a good size plus I can have my craft area that I REALLY wanted to have so that’s a bonus.

Dad and Mandy have finished the painting now. The doors, skirting boards and window sills have had a freshen up. In the living room I’ve gone for a paint colour called ‘nutmeg white’ along with a pop of turquoise paint. Originally I’d expected to have a separate kitchen and living room so I’ve had to merge the two rooms together as I’d bought a couple of turquoise items for my kitchen so I’ve had to incorporate turquoise into my living space. It will be quite a colourful room once my IKEA button rug is down and my Poang chairs and footstool are in there along with my other furniture. In my bedroom I’ve got the same colour as I have here as I love the colour so much and one wall has glitter mixed into the paint for a subtle shimmer.

I’m not going to need to buy much new furniture thankfully as I own a fair bit already. I’ll need to buy my craft desk which I can’t wait to set up and organise all my craft belongings into it and I’ll need a desk mat, desk chair and floor mat (for the chair). In time I’m going to save up and buy a small desk to put in my bedroom and have my first ever makeup desk. I’ll also need storage and bits and bobs for the bathroom. Then other miscellaneous items like a laundry basket, clothes rack, bins etc and my white goods of course. I’ve bought already most of my kitchen bits and pieces. At first I’ll just have the essentials but in time as I save up and add things and I settle in it will become more my home and I’ll put my own style on the place.

I really want to make a success of living on my own. I know I’ll need some care but it’ll be nice to have to quiet time with the bungalow to myself. I do have my anxieties about living alone: managing my seizures and my bad M.E. days, getting the care I need, managing my health in general and it not going downhill, managing financially and not feeling too isolated to name a few things. I want this to be a new and positive chapter in my life as for so long I haven’t felt like I’ve had much to celebrate because of my health.

10 years on

This February marks 9 years since I became chronically ill.

Sure I've had health problems all my life, I grew up with an acute curvature of my lower spine (hyper lordosis) and had care for that as well as treatment for my mental health as a teenager and also my now diagnosed Ehlers-Danlos, a genetic hereditary condition was always there just never known about. However non of my health problems as a child including my mental health including anorexia which I was seriously ill with never really affected me and my life to the extent and in the same was as my health issues that I've been dealing with over the past ten years.

Over the past 9 years I have lost so so much. Friends, academia, a future career, my dream career, my independence, volunteering, the ability to look after myself, my mobility, my freedom, dreams and plans and much much much more. I have grieved and I am still grieving for the life I have lost and I feel lost, like where is my place in this world? Thankfully I'm now just beginning to get some support from a psychologist at UCLH to help me re-find my purpose and what is meaningful to me so I can move forward in life.

How it all started...

It started back in 2014 with a case of the flu which I never recovered from. After then I was tired a lot, I struggled to walk and ride my bike around campus and to places like the shops and to dance for as long as I used to be able to. I found it hard to take in what was said in lectures and seminars and to get essays typed up and to do my set reading even with all the support of my academic support worker. Then one day I had a seizure, and then after that I had more.

By this point it was February and my health was in pieces. It came to the point where I had to leave University where I was studying nursing and return home. I thought at the time that this would just be a temporary measure and I even reapplied to a University to return to my studies. I've always been academically driven and my only plan for my life was academics and my career. My drive was to eventually become a child psychotherapist. I didn't get back into University but they advised me to do some further study which I did but it took me longer to complete the course than usual and I didn't get the grade I wanted and what my tutor thought I'd get so I felt pretty low. I could have retaken the exam module but by this point there was no way I'd cope doing it with the time frame.

I'd gone to my GP several times about my overwhelming levels of exhaustion and other symptoms. Each time my GP would diagnose me with Post-Viral Fatigue Syndrome and I just needed to rest and I'll soon be feeling much better. However I never did yet I still kept being told the same information.

Then on the 4th July 2017 I finally had my long awaited for neurology appointment with Professor Edwards regarding my FND (Functional Neurological Disorder). Until this appointment I'd not been diagnosed with anything other that this Post-Viral Fatigue Syndrome. Professor Edwards specialises in FND and confirmed that I did have FND - a neurological disorder where the brain's messaging system doesn't work properly. For some people this can cause just one symptom or for others like me it can cause multiple.

As well as Professor Edwards confirming my FND diagnosis he also said I had M.E. but little more was said about M.E. so I was left to go home and Google this diagnosis myself and work it all out alone as no further referral was made. Professor Edwards also picked up on my hypermobility and referred me to Dr Kazkaz, a rheumatologist who specialised in Ehlers-Danlos Syndrome over at UCLH.

I eventually saw Dr Kazkaz and after some tests including genetic testing I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and because of the secondary problems my EDS was having on different organs of my body Dr Kazkaz referred me to different specialties within UCLH as well as the Pain Management Centre. I've also seen consultants and other departments at my local hospital too.

I honestly see my health as a full time job and that is a blog post I plan to write about soon.

Over the years my health has declined but not in a linear way, it's been a gradual up and down process.

Back in October 2019 - March 2020 I was in a specialist unit for people with FND and M.E. (though they mainly focussed on my M.E.) Some of the treatment health like learning activity management and developing a daily plan as well as being around the other girls with had M.E. and FND too but other aspects of my time there didn't help like Graded Exercise Therapy so soon after coming home my M.E. started to worsen.

Then in April last year I had surgery and that really crashed and set-back my M.E. and I haven't really recovered since then. However the surgery was a success.

Where I'm at now...

I still feel grief for the life I should have had and have lost but each day I try to find a focus for the day such as what I'm going to do and I just take each day at a time; each activity at a time as my health can change so rapidly. 

It's taken me a long time but I now feel like I've found 'my tribe'. My only way of socialising is on Instagram and through letter writing to friends and pen pals and I now feel since last year that I have a good network of people around me that are good and positive as sometimes the chronic illness community can be a competitive and unhelpful place.

I'm also now looking to find my own home and I can't wait to move out and have my own space to design and put my stamp on. I've already got a growing Pinterest board with a section for each room planning out my new home!

I have a good network of support from an array of different professionals from doctors, nurses, housing support workers, other professionals, Personal Assistants, family and friends.

So though the past 9 years has been tough to say the least I don't regret becoming ill. It's made me a stronger and more resilient and grateful person and the person I am today.

Fundraising for M.E.

After the success of my Christmas card fundraiser and after a lot of thought about it's do-ability I have decided to continue to sell my handmade cards and fundraise for two M.E. charities: Smile for M.E. and Action for M.E. (who I fundraised for at Christmas).

I had to think a lot about whether I should go ahead with the project and the way I done it this time I've set it up to be more M.E. friendly as how I did my Christmas fundraiser really crashed me. I also had to factor in my health and the fact that *hopefully* at some point I will be moving. However I think the way I've worked it I can alway make a notice to say that I'm taking a break for whatever reason.

I also did a lot of research and thinking into charities but deep down I felt that I wanted to support M.E. charities - everyone has their own charity or charitable area that is meaningful to them for whatever reason and though I do have other illnesses I feel a closeness to want to support the work of M.E. charities. This is partly because M.E. is probably the illness that affects me the most; I also know how overlooked M.E. is and how little understanding of M.E. there is as well as how little funding M.E. research and just M.E. in general gets.

Smile for M.E.

Smile for M.E. is a small UK charity and they send out 'Smile Parcels' to people with M.E. as well as care givers to people with M.E. They also hold special events such as for Carers Week and 'Merryn's Smiles' - special Smile Parcels to people with Severe M.E. in memory of Merry Crofts who sadly passed away from the illness. Smile for M.E. was started in response and in recognition of the isolation and loneliness people with M.E. often experience. You can find out more by visiting their website or checking out their Instagram.

I chose to support Smile for M.E. as it's a very small M.E. charity and I love the idea behind what they do because M.E. is such an isolating and lonely illness as especailly for some like myself with Severe M.E. I'm cut-off from the outside world as I'm mostly housebound. So when I was nominated as received a personified Smile of a few gifts to me it reminded me that I wasn't forgotten about and that I was loved and cared about. I'd like to help the charity by fundraising for them so they can buy gifts to include in Smiles and bring the same feeling to other with M.E. or those that care for people with M.E.

Action for M.E.

Action for M.E. is another UK charity that takes action to raise awareness of M.E. and to take on the ignorance, injustice and neglect faced by people with M.E. They also provide targeted information, support to health care services as well as providing advocacy work to people of all ages with M.E. The charity also works closely with professionals and policymakers to improve for people with M.E. access to appropriate care and and support. Action for M.E. also collaborates with scientists and clinicians to help more research forwards. For example the DecodeME DNA database study.

In the past I've collaborated with the charity to help raise awareness through videos and articles on their magazine.

The reason why I wanted to continue fundraising for Action for M.E. is because of the support they offer to people like myself with M.E. The charity provides a wealth of information and resource to people with M.E. of all ages, care givers, the public and professionals. They offer support and advocacy such as their 'Listen to M.E.' helpline - but it's open hours are limited and I hope that more funding will extend this to help reach more people with M.E. The charity also supports children and young people with M.E. Also at Christmas they run a project called 'Christmas Angels' which means a lot to me and like with the helpine I hope that fundraising will help to keep this project running.

Where to by cards?

You can buy cards through my shop Instagram account - there's an explainer on there about the project and how I've organised my cards and how they can be purchased.

Positives out of 2022 & plans and projects for 2023

Over the years I've often struggled at this time of year. I feel that especially due to my health compared to most other people my age my life is pretty stuck, uninteresting and going nowhere and filled with not much else other than my health (or lack of!). But putting my health aside there's a few things to celebrate from the past year. I'm also not a person who set's New Year's resolutions but for 2023 I have some projects and things I want to do.

Looking back on my plans for 2022

So firstly, looking back on last years post with my plans for 2022 let's see what's I've ticked off:

✔️ Committing to my 1 Second Every Day Project (the video is on my YouTube channel)

✔️ Growing my blog and YouTube channel - I did take a blogging break when I had my surgery but I did continue with my blog this year. I've also continued with my YouTube channel - I did reduce how often I posted due to my health but my subscriber numbers continued to grow.

✔️ I finally had my surgery in April

✔️ I found my second PA (carer) Jo (- who is lovely)

What else have I achieved in 2022

✔️ So for a few years now I haven't been able to go to the hairdressers and because I was shielding I couldn't even have my home hairdresser so this year one achievement has been going to the hairdressers to have my hair done.

✔️ I set myself a book goal on Good Reads and I reached that so I upped that and I exceeded that goal and I've worked my way through 97 audiobooks and books.

✔️ On the theme of books one major achievement this year has been to begin reading books again. This may seem minor but I used to love reading and the ability to read books was something that M.E. took away from me so to begin reading books again has been a big win this year. I've read one proper book and a shorter book as well as poetry pamphlets.

✔️ I raised £76 for Action for M.E. selling handmade Christmas cards

✔️ I also feel happy that I've 'found my tribe' on Instagram and through my pen pals and the Chronic Warrior Collective in terms of friends and people who are positive in my life. Many also have chronic health problems/disabilities but it's a healthy and supportive tribe as opposed to the negative "support" groups I've joined on social media in the past.

Projects and plans for 2023

🌈 The first thing is my charity fundraising project I'm going to do. I'm going to continue to sell my handmade cards and raise money for Smile for M.E and Action for M.E.

🌈 I want to read more books

🌈 I want like to do my nails more often - and if I keep this up I'll treat myself to some more Shellac nail polishes. I'd also like to do my makeup more often too.

🌈 I hope to find myself my own home

🌈 I would like to do more random acts of kindness

🌈 I said this last year and I'm saying it again (!) but I want to stick to my photo/bullet journal on a regular basis (hopefully daily)

🌈 I want to get my giant diamond painting finished

My Christmas card fundraiser for Action for M.E.

My Christmas card fundraiser has gone so so well! I'm so proud out myself for what I've achieve through this little project that I set out on not really expecting much. Its been wonderful to receive orders not just from friends but form strangers too!

In total I've raised £76! This will help Action for M.E. with projects like their Christmas Angels project, and their 'Listen to M.E,' support line as well as their other advocacy and campaign work helping to give people with M.E. a voice. It's a really special charity to me.

Last Friday I get featured in the charity's social media Fundraising Friday - see the post here.

I'm now no longer taking orders and I'm just working on this final order that I got asked to make 20 cards for. I've had some big orders - this is my second 20 card order and I've had one or two (brain fog is getting the better of me) orders for 10 cards then smaller orders such as 4 cards.

This is one quote I gave to Action for M.E. to to fundraising team:

“I feel incredibly proud of myself as it has been a challenge. It might not be running a marathon but for me this has been my marathon especially with my M.E. to deal with and it has been tough."

This is so true. With my M.E. this has been a fundraising challenge to get through orders as I'm limited with my energy and the time I can spend crafting. Usually I can only make one card a day, two at a push depending on what I'm making. Sometimes cards take even longer to complete especailly with me being a bit of a perfectionist, but I want people to love the cards that they've bought from me.

I hope this fundraiser shows people with M.E. that they can still fundraise but in smaller ways and I already have palsy to do something similar so watch this space! 

The two faces of M.E

So you may have noticed that I've been more absent on my blog since April when I had my surgery. I knew my surgery would crash my M.E but I didn't think it would be this back and last for so long. I'm still waiting to return to my pre-surgery self; the alternative is to accept that this is my 'new normal' and adapt.

Thankfully what I learnt from my hospital admission in Leeds a few years ago in a specialist unit for people with severe M.E I learnt new ways to live alongside severe M.E. This has helped me to adapt over the past few months such as I've added in an additional rest period early afternoon to help me keep going and I do more low-level activity periods (meaning I'm getting through a lot of audiobooks!) and I try though not always successfully to manage my activity levels. However this is hard as I have my PA's and for me getting a bath is a high energy activity* and it completely exhausts me but having a bath isn't something I can skip unlike other activities.

*Showers are not something that is possible for me as with my severe hypersensitivity having a shower is like being jet washed and causes so much pain and I get cold causing my muscles to spasm.

With my M.E I get my good and bad days just like most people with a chronic illness do but I do find that generally everyday flits between ups and downs. First thing in the morning I'm no so great then by the time my PA comes at 10am I've rested enough to get through our routine and then I'll dip a little before sliding back up and then I start to dwindle and then I'll just completely crash at bedtime.

On my good days I am able to enjoy things. I have a new PA who can't drive so on a Sunday with my social support hours I've started to enjoy being able to do things like go out in my wheelchair to post my letters or do some baking. I also love my PA Diane curling my hair for me. With my family I enjoy playing a game called Carcassonne. Other things I can do is colouring or other crafts like card making - I'm currently making Christmas cards to fundraise for Action for M.E there's also my letter writing. However even on my good days my activity allowance is limited and I have to be really careful not to overdo it and I have to balance my activity time with other things like appointments.

Then on the flip-side are my not so good M.E days. The days when my body is feeling pretty much every symptom of M.E and often my immune system flares up too (for me my M.E is more of a neuro-immune disorder). These days I'm more thankful for my profiling bed to help me sit up when I can't and for the care from my PA's and family; I'm grateful for my pain relief medication and heated blanket and for audiobooks to occupy me and to pass the time. On those days I just hope that tomorrow will be better.

Fundraising for Action for M.E this Christmas

This year I'm raising money for Action for M.E by selling handmade Christmas cards. I wanted to support an M.E charity having M.E myself and I chose Action for M.E to help them continue to run some of their projects such as the Christmas Angels project and their listening service 'Listen to M.E' as well as the charity's advocacy and campaign work that they do to give people with M.E a voice through raising awareness of M.E and trying to get better access to and more funding for services, treatment and research. You can find out more fully the work of Action for M.E and information about M.E on their website.

So far I've managed to raise £10 and I have one current order in the making so more funds will be on their way. I've made a little chart in my bullet journal to document the amount I raising. I know it won't be much but I know that every pound will help.

This is actually quite a challenging fundraising task for me. I love being creative but having severe M.E card making can be quite exhausting (just like everything else is!) I can only spend about 10-20 minutes of activity a day so generally I can only get one card made a day without overdoing it.

I've had some lovely comments from people with comments such as saying how I'm using my creativity in a wonderful way to support a charity.

I just wanted a little project to work on and I love card making and I thought making cards and selling them to fundraise would be a nice idea. I wasn't sure when to start selling cards but when I asked people on social media some people suggested starting early before people started to buy cards in shops. In all honesty I'm glad I've started early as it's giving me the time to make cards and also get the word out there too.

If you would like to purchase any handmade cards please message me via my Instagram profile here.