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.

Carer’s Week - What my PA’s do for me

My Dad and my PA’s are my carers.

One of my PA’s on
‘Come to work in
    Your PJ’s day’

My PA’s (Personal Assistants), Alison and Emily are amazing and I feel blessed to have such amazing PA’s who I feel truly care for me and go above and beyond for me. I love PA care as I get to build up a good solid relationship with my PA’s and my care is consistent compared to my agency care. I also have more autonomy over my care. I can also do fun things like on this random day like ‘Marmalade Day’ on Come to work in your pyjamas day’ I let my PA come to work in her pyjamas.

I employ Alison and Emily via Direct Payments and I use and agency to help me do the admin and legal side of the employment as well as help me find new PA’s as I’m still looking to complete my team of PA’s.

My Dad also cares for me like for example if a PA is off he will come round after work to make my tea, do the washing up and do other jobs for me that I struggle to do. Dad also does my gardening for me. Dad also helps with my social wellbeing and during the school holidays we’ll usually go to a garden centre together as he knows I find it difficult to get out so we’ll have a coffee and usually get some things for my garden. My Dad is also on call all the time and has even come out in the middle of the night to me like when I had someone break into my garden. I also find it good to talk to my Dad when I’m struggling with my mental health.

Going through the day here are some of the things my PA’s do to support me to help me personally but also manage to enable me to live on my own:

• Meal preparation and also making drinks
• Preparing medication and ensuring I’ve taken all my medication
• Dealing with my catheter
• Preparing my bath
• Getting me into the bath - lifting my legs into the bath and operating my bath lift
• Helping me brush my teeth
• Helping me wash my face
• Washing me
• Shaving me
• Washing, brushing and styling my hair
• Helping me get out off the bath
• Helping me get dried
• Applying barrier creams
• Assessing my pressure areas to help prevent/treat pressure sores
• Helping me to get dressed both in the morning and at bedtime
• Transferring such as into my wheelchair or onto a chair
• Preparing catheter bags
• Making my bed
• Ensuring I’m wearing my CareLink
• Helping me remember things
• Supporting me in the community and accessing the community
• Driving me to places 
• Keeping me safe when I become unwell
• Getting my wheelchair and also sometimes my Batec in and out of the car 
• Taking me to medical appointments
• Supporting me at medical appointments 
• Helping me manage my anxiety
• Helping me with communication
• Doing laundry 
• Washing pots
• Food shopping
• Taking me out on Batec rides
• Meet my additional needs when I’m having a bad day 

This is just what I can think of off the top of my head now what Alison, Emily and my Dad do for me. I’m so grateful to have the support I do and to have the great relationship I have with my PA’s too.

I think more people need to consider a career as a PA and I always advocate for what a fantastic job it can be and how you’re supporting someone to live their life how they want to and you’re helping to enhance their quality of life too and the relationship you build up with your client is amazing too.

I also think that caregivers should receive more in Care’s Allowance.

Carer’s need more recognition for the role they play in disabled people’s lives.

Without Alison, Emily or my Dad I wouldn’t be where I am now. I wouldn’t still be living independently in my own home and I love having my own home. I feel cared for and supported and my PA’s enjoy coming to work and that makes me really happy knowing that.

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.