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.

Podcasts & books I’ve read and am loving lately

Podcast docuseries

I’ve just finished a really amazing podcast docuseries called Loved Trapped. It’s based on real events (obviously) but the storyline is absolutely mind blowing about how one woman can accuse and con several men with a bunch of fabricated lies and failing medical evidence and injecting herself with hormones to fake pregnancy tests and wearing fake pregnancy bellies totally ruining these men’s lives and their finances on all the court appearances they went through with her. The domestic violence restraining order she took out on one man really affected him getting a job even though he was never violent towards her. Her claims of domestic violence were all made up. What was worse was her parents were in on it. There were also a lot of bonus episodes in the Love Trapped podcast series too and they go on to add more episodes as the story and court appearances continue to happen so I’m watching out for more episodes. 

Other podcasts I listen to and enjoy

I listen to quite a verity of podcast. Some Are true crime, there’s a little bit of paranormal mystery too as well as documentary podcasts, interview podcasts and even some comedy too.

• Cults To Consciousness 
• What In The World 
• Redhanded
• File on 4
• Lights Out
• The Criminal Makeup
• Access All
• Uncanny
• Unreliable Witness
• Swingers
• A Bit Of A Stretch
• Welcome To The Neighbourhood 
• Why Do You Hate Me?

Books

I’ve just finished read ‘Police, Crime & 999’ by John Donoghue. It follows a year in the line of his life as a front line police officer. He writes really light heartedly and I liked the way he wrote the book it made the book quite amusing, interesting and funny from the more serious side of the job to the funny and random things that happened. He also put in some of the funny and bizarre calls people make to 999, the UK’s emergency services number, for example a drug dealer wanting to report someone stealing his stash of drugs.

Another book I’ve just finished reading/listening to is ‘The Perfect Son’ by Freida McFadden. I’ve read/listened to a few of her books and I’m always gripped by her psychological thrillers not knowing where the storyline will take me and the twist at the end. This book had a really good ending.

Some of her books I have had to put down as they’ve been a little bit too graphic for trigger warnings. I do try to check books on the TW Database but not all books are listed on there so if they’re not I do try to report to the TW Database so they can add it.

‘Be Patient’ by Tilly Rose

This is another book that I’ve recently listened to and thoroughly loved and truly related to. I now follow Tilly on social media as she continues to chronicle her health journey. ‘Be Patient’ is about her time in hospital unwell and searching for answers as to what is happening with her health. I’ve adopted from her book the phrase about being a zebra in a hospital full of horses. In Tilly’s book she was a zebra in a hospital full of horses and the doctors couldn’t fully work out what was wrong with her. I can fully relate to this. I could relate to being undiagnosed and not knowing what was wrong with me and and I can relate to being a patient in a hospital with doctors not understanding what is wrong with me or the rare illnesses I have and how best to treat me and not listening to me when I’m trying to advocate for myself and being medically gaslighted. I loved in Tilly’s book her inserts every-so-often of ‘patient survival tips’ which were so lovely to hear and learn and it made the book a bit different and a tool for readers like myself who are chronically ill and have to attend appointments, spend time in hospital or just deal with being ill. After Tilly wrote the main book she added at the end that she was finally diagnosed with Ehlers-Danlos Syndrome. Having EDS myself I know how complex this illness can be and how vastly it can affect the body in so many different ways. Currently Tilly is being treated in Germany and has just had major groundbreaking surgery and she just needs to get through the recovery process in Intensive Care.

You can follow Tilly’s Journey on Instagram here.

You can buy ‘Be Patient’ here.

What I’m listening to now and future books to take into hospital 

I just finished my Kindle book today so I need to find my next read. I’m currently listening to ‘Where Secrets Lie’ by D S Butler which is the second in a detective series.

I’m going into hospital next week for a small surgery and I’ll be kept in so I’ve been saving some audiobooks to listen to in preparation for my hospital admission as usually when I’m in hospital all I’m really up to doing to entertain myself is listen to books. There’s free WiFi so I might listen to podcasts as well. Hopefully I’ll get my promised own room so I’ll have a quieter environment as the noise of a ward just makes me more unwell. 

Some of the audiobooks I’ve put aside are:

• ‘To Exist As I Am’ by Grace Spencer
• ‘Love From A to Z’ by S k Ali
• ‘Told You So’ by Mayci Neely
• ‘How Stella Learned to Talk’ by Christina Hunger
• ‘The Secret Life of a Vet’ by Rory Cowlam
• ‘Who Wants Normal?’ By Frances Ryan

There’s a nice variety there so that should keep me entertained and take my mind off how I’m feeling and easing my anxiety as well.

Chronic pain management is suicide prevention

*TW - talk of suicide and suicidal ideation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Statistics

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

References: University of Oxford and the National Institute for Health

The gender pain gap

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

Crochet cup cosy pattern

This cup cosy pattern is  just one I made up myself. The cup in the photo gets hot so I wanted a mug cosy so I could comfortably hold the cup when there is a hot drink inside.

I used 5mm yarn - I personally love working with colour changing yarn as it gives a great effect on your project without having to use multiple balls of yarn. I also love cotton yarn as I find it a lovely texture on your hands, plus it’s more washable than acrylic yarn.

I’m not sure what yarn I used as it was just some leftover yarn in my yarn box. 

What you need:

• 5mm yarn
• 5mm crochet hook
• Large button 
• Needle and thread
• Scissors 
• Yarn needle 

What to do:

The stitch I’ve used on this project is alternating between doing a single crochet then a double crochet then a single crochet then a double crochet and so on - this is called Lemon Peel stitch.

1. Chain 9
2. Skip the first chain and in the first row do 9 single crochet stitches chain 1 and turn
3. Skip the first stitch space and following the Lemon Peel stitch do 3 stitches (1 single crochet, 1 double crochet, 1 single crochet), chain 3, then do 3 more Lemon Peel stitches (1 single crochet, 1 double crochet, 1 single crochet) chain 1 and turn - hopefully this three chain space hole you’ve created will fit your large button
4. In the next row skip the first stitch, do 9 Lemon Peel stitches, chain 1 and turn
5. Repeat Step 4 until you have the length needed to wrap around your mug
6. Tie off and weave in your yarn with the yarn needle 
7. Using a needle and thread sew your button onto the centre of the end
8. Once the button is secure you can wrap your crochet mug cosy around your mug and secure the button with the loop.
9. And there you go!

Does my disability define who I am?

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

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

No my disability doesn’t define who I am 

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

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

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

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

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

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

Yes my health does define me

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

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

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

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

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

My bed, M.E & Me

How I’ve set up my bed space

My bed set up

Most of my day is spent in bed because of my Severe M.E. My body can’t tolerate being sat up like in my wheelchair for very long due to my Orthotic Intolerance (an aspect of my Dysautonomia). My symptoms are also more manageable when I’m laid in bed. When I’m feeling crashed or experiencing Post-Exertion Malaise I often can’t get out of bed at all.

Over time, especially since getting my own home, I’ve developed a good set up in and around my bed to make life easier for me. Occasionally I change things but my set-up is pretty well established with everything I need.

I’ve attached links to all the products I have where I’ve been able to find the product as some companies that I originally bought from don’t exist any more.

My bed

Prescribed to me by my Occupational Therapist or Complex Care Nurse, so they’ve been provided to me by the NHS.

My profiling bed 

My profiling bed is like a hospital bed but it looks less clinical. It still has all the functions: raising my head and my legs, tilting and raising the height of it.

Because of my POTS my bed helps me as I’m able to sit up in little increments, this especially helps in the morning. I can also tilt my bed when I’m have a POTS episode.

I’m able to independently get myself comfortable.

Raising the hight of the bed helps when my PA’s, carers and nurses are caring for me or doing tasks like changing my bedding.

I keep my heat pad near my bed so it’s easy to reach on my own and I hand my headphones on the grab rails so they’re close by.

My hybrid airflow mattress 

My mattress is a static mattress at the bottom with an airflow mattress on top. It has moving tubes of air to making it a pressure relieving. On top of the airflow tubes it has memory foam which I find more comfortable compared to my previous mattress that didn’t have the memory foam layer. I much prefer this mattress because on my bad days when my hypersensitivity is worse I don’t feel the mattress moving as much compared to my old one which I found more painful.

Bed accessories 

These are the main accessories I’ve added to my bed to make me comfortable, ease my pain, support me and give me independence.

Body pillow 

I don’t know how I’d cope without my body pillow. My current one is a memory foam one from Pillow Pod. It contours to support my back, hips and legs. Because of my muscle weakness it holds and supports me in place in bed; it also helps with my pain too and it helps me to get more comfortable whatever position I’m in. It’s also supports my unstable joints which I have because of my Ehlers-Danlos Syndrome. 

Giraffe bottle

Top: Flexzi stand
Bottom: Giraffe bottle

My Giraffe Bottle is another essential feature on my bed. I have a plastic bottle for water and I have a stainless steel bottle for hot drinks. I struggle to lift bottles and cups a lot of the time so my Giraffe Bottle enables me to position the straw in front of me whether I’m sat up or laid down and to drink hands-free. The straw stays in position as it’s in a gooseneck.

The bottle sits in a holder that is clamped to one of the grab rails on my bed.

I did have the Hydrate bottle before but I struggled with straw as it would often fall on the floor.

Flexzi iPad & kindle stand

The Flexi stand is another essential on my bed (I had to go for the pink one!) You can put Velcro patches on things to attach items to the Flexzi stand. I mainly use it for my iPad and my Kindle. I have it clamped onto one of the grab rails of my bed. (I’m still able to use the grab rail which is helpful.)

It’s so helpful as I don’t have to struggle holding items or having them balanced on my lap or placing them on my over bed table. Especially because a lot of the time I’m laid down so I’m able to position my iPad or kindle in whatever way is comfortable for me.

With my Kindle I’ll also use a page turner remote as tapping the screen is difficult a lot of the time especially when I’m laid down.

Over-bed table

I find my over bed table quite multi-functional. I can use it to put what I need near me on it like drinks, medication, hand sanitiser, headphones, my Kindle etc. I can also do activities in bed on it or I can clear it and title the portion of the table that tilts if I’m doing a particular activity. I can have meals on it. My PA’s can also put all the things I need on it for a wash in bed.

The table raises so if I need to raise the hight of my bed I can raise the hight of my table.

Clipped onto my table is a rechargeable lamp that I find quite useful.

Essentials to keep in my beside draws

Organised draws

Firstly I find organisation a must have. I use draw organisers to keep everything neat and tidy and in its place making it much easier to find what I need.

My main essentials in my top drawer 

Items include:

• Clinell hand sanitiser wipes
• Hair ties
• Hand cream
• Pixi lip balm
• My pouch containing my Kindle’s page turner
• Aveeno hand cream
• Remotes for my fairy lights, lamp and Dyson fan (I can also voice control my fan or use the app)
• High NRR ear plugs and my Loop earplugs - I also have pink noise cancelling ear defenders in a lower draw as sometimes I find headphones more comfortable to wear
• Wired earphones - I use these as an alternative to my noise cancelling headphones as even on ‘aware mode’ it’s still difficult to hear around me so when my PA is about and I need to be able to hear and communicate with them but equally I want to lay in bed and listen to to my book I’ll plug these into my iPad
• Hand held magnifier, an alternative to using these CCTV magnifier on my mobile

Communication cards

Communication cards

I have a set of communication cards in my top drawer. These are just some of the cards that say:

• ‘I’m feeling crashed and I’m too tired to talk right now’
• ‘I need some help’
• ‘I need pain relief’
• ‘Can you help me eat’
• ‘I need some time out to rest’
• And a few more including ‘yes’ and ‘no’

These communication cards are different to my blue Stickman Communication’s blue communication book which is more of a mini medical book that I carry around in my wheelchair bag.

My medication draw

One of my bedside draws is dedicated to medication and medical equipment. In there I have all the essential medication I need beside me like my pain relief medications, IBS medications and other PRN (as and when needed) medications. Like my other draws this draw is also neatly organised. I also have a pot for oral syringes to keep them together. So I don’t have lots and lots of boxes of medications I have a medication organiser. It’s a little case with compartments in it. In there I have my medication and of course I’ve labeled each compartment so I know what medication is in where. Other things I have in this drawer in my thermometer and my pulse oximeter. I also have an assortment of things for my migraines like 4head and Kool gel patches and my Koldtech headband. I also have a spare blue inhaler. I also have some self-warming heat wraps. There is more but that’s a good summary of this draw. This is the only draw that I’ve labelled, just to make it easier for others to me able to identify it.

Snacks 

I keep a few snacks like dried fruit and gluten free crunchy oat bars. Some of my medication like my migraine medication needs to be taken with food so having snacks I my bedside draws means I’m able to take my medication without having to get out of bed. 

Skin and dental care

In my second draw down I have a packet of aqua wipes and some mini skincare products so I can cleanse my skin in bed. I also have Colgate Wisps which are like mini disposable toothbrushes with toothpaste in them so I can mess free clean my teeth in bed if I’m not able to get to the bathroom. 

On top of my bedside draws

The top of my bedside draws

I have a lamp as that helps give my room some low lighting. I’ll get more onto lighting below. I also have a box of tissues and a favourite coaster so I can have a drink near me.

My charging station 

I have a charging station with a holder for the magnetic charging port for my iPhone and also my Apple Watch. This is helpful as I don’t have the struggle plugging my phone into a cable. 

My HomePod 

This is the Apple version of an Alexa. It’s a speaker, I can voice control my home, it’s an intercom to the HomePod in the front room, I can set timers and alarms, add things to my lists like my shopping list or to do list and so much more.

My inhaler case and blood pressure monitor 

I have a case with my inhalers and spacer in it. This makes it easy to keep everything together as well as for in the event of my asthma getting worse. On top of my inhaler case I keep my blood pressure monitor which is in a case. It’s a wrist blood pressure monitor. I have to carefully monitor my blood pressure because I’m on medication that lowers my blood pressure and because of my POTS I have low blood pressure as part of my POTS. 

Emergency information

Emergency info

On my windowsill I keep all of my emergency information together. 

I have my ReSPECT document, this a document to give to paramedics in an emergency outlining my care wishes in advance.

My red file is my Medical History Passport. This contains information about me, my medical conditions, care plans, ways I communicate, medication I take, medical devices, past surgeries and ED admissions among other things. 

Then I have my denim Filofax, this has my Stickman Communication cards in. This Filofax has my emergency Information, cards briefly explaining my different medical conditions, yes and no cards, a pain score card, a card explaining my joint problems (so to be careful with moving and handling), a card about local anaesthetic and EDS, a card to say that I have someone with me to support me and to not separate us, a card about my dark glasses and a few other cards on other topics. 

Smart tech in my bedroom 

I have a lot of smart technology in my home, especially in my bedroom environment. This gives me more independence to be able to do things and not have to rely or wait on other people or struggle to do something on my own. The voice control is especially helpful. I just say Siri commands into my HomePod and I’m able to control the environment around me.

If you are bed-bound or mostly bed-bound I would highly recommend smart tech like lighting and blinds, plus heating if you live alone. When buying a fan I would recommend looking for one that has links to Apple HomeKit, Alexa, Google Home etc.

Lighting

In my bedroom my lighting, my lamp and main light has Philips Hue smart bulbs in them. I can control the lighting on AppleHomeKit either with my voice or with the HomeKit app. I can change the brightness and hue of the light. I also have set ‘scenes’ so I can say ‘Siri Evening’ and the lighting will go to a preset setting around my home.

Because I keep my bedroom dim because of my M.E I find being able to turn to lighting like my lamp on at a hue and low percentage really helpful as it gives me a little extra light but not too much light if I weren’t to have smart lighting.

My smart blind 

This was something I discovered last year and it is so helpful to have a voice controlled blind. I also have it on automations so in the morning at 9.05am the ‘good morning’ scene comes on and my blind raises a little to give me a little light. (I have Venetian blinds behind my Smart Blind which the vast majority of the time are kept closed.) I can however just ask Siri to close the blind for me if I can’t tolerate the light. On dull, dark, rainy days I can raise the blind up. There’s also a remote control for the blind which makes it easier for my cleaner and PA’s to operate the blind.

Hive heating 

I am so glad that I finally got Hive Heating. Now I can put on and control my heating with ease either with voice commands or via the app on my phone. Before I’d be sat cold in bed in the morning until my PA turned up to work or I’d be unable to turn the heating on or off on my own because I couldn’t reach the thermostat. Now I can put the heating on for a set time just to warm up my home like in the morning or if i woke up in the night feeling really cold. It’s especially important to stay warm for me as getting cold makes my symptoms worse like my muscle spasms, and I have a low immune system and because of my dysautonomia my body struggles to regulate my own body temperature. My Hive Heating has defiantly been a good investment. 

My Dyson fan

My Dyson Fan in my bedroom has links to Apple Shortcuts. I’ve set up a series of voice commands such turning the fan on and off, different speeds, night mode etc. so I can now say those voice commands to my HomePod to control my Dyson fan. I can also control my fan on the app or with the remote if I’m unable to use voice commands.

Severe M.E & Me

I started to write this post in my head. I was feeling really crashed; I was laid in bed wih ideas swirling around my mind. I have to rely upon my imagination as at time, when I can’t tolerate watching my current favourite drama on my iPad or even listening to a book or podcast beyond of my hypersensitivity and my body can’t cope with the stimulation and my brain is too fogged to read my Kindle in the quiet.

Sometimes when my M.E is at its worst my body will just ‘shut down’ like a phone out of battery. The other day when I was crashed I was laid in bed and I realised I couldn’t move my left leg; then my right. I could still feel everything, I just lost the ability to move them. The brain and nervous system is fascinating and so much can go wrong and so little is still understood about M.E and severe M.E and why bodies like mine are like they are. I took part in the DecodeME Study and so many of the results made sense and gave me hope. 

Sometimes this ‘shut down’ has taken over my whole body. It happened to me once when I was in hospital. The noise and the lights were just too overwhelming, I was in so much pain too and my body just couldn’t process and cope with it all. I could feel and hear everything but I couldn’t verbally communicate. I was locked in my own head. I had no way of explaining to the staff what was happening to me. I can blink or sqeeze a hand: one for yes; two for no but I couldn’t explain this either. The staff didn’t know what I was doing and why I shut down. Some staff thought I was feigning this episode for attention. In my head I was shouting and screaming to explain what was happening to me and to ask things like ‘please turn off the lights and close the door!’ and to tell them how much pain I was in/

This ‘shut down’ is an extreme example but this is the reality of my severe M.E. when my body can’t take on any more pain or sensory stimulation.

Around 1 in 4 people with M.E have severe or very severe M.E. On the M.E Disability Rating Scale I am 70-80%, disabled by M.E, possibly 90% at times. I have good and not-so-good days. Currently I’m in a rolling crash. My M.E worsened at the end of last year from which I’ve not yet recovered from. The smallest exertions (physical, cognitive or emotional) like getting washed and dressed with a lot of help from one of my PA’s or slowly typing this blog post will trigger Post-Exertion Malaise. (An exacerbation in my usual M.E symptoms with some extra symptoms such as these shut down or paralysis-like episodes). With the rolling crash I’m not giving myself enough chance to recover before exerting myself again like getting washed and dressed. I just don’t know how to get out of this cycle at the moment.

These are just some points from the M.E Disability Rating Scale that apply to me:

• I spend most of my day in bed
• I struggle to walk and have to use a wheelchair 
• I experience episodes of paralysis
• I have difficulty with my speech and use other forms of communication 
• I have poor cognitive function and have brain fog most of the time
• I’m hypersensitive to light, noise and touch, plus smells
• I’m in pain 24/7 and of experience nausea
• My PA’s support me with pretty much everything in every way possible 
• I live alone but I can’t live independently; I need a lot of support from my care team and family
• My meals are prepared for me
• I have a profiling bed and hybrid airflow mattress
• I also have a bat lift (I can’t tolerate showers)
• I am unable to work

People often think that M.E is just about fatigue but it goes far beyond that. The best way I can explain M.E to you is to imagine that you have the worst hangover ever, add in a really bad case of the flu and not having slept for a week. That’s how M.E feels like. Oh and resting and napping won’t ease how you feel and you’ll wake up feeling more tired too plus you’l experience every type of pain you can think of.

I developed M.E in 2014 after getting the flu, February to be exact and I never recovered. Following that was years of not knowing why I felt the way I did. My GP a few times told me I had Post Viral Fatigue Syndrome and with rest I’d recover but I never did recover. July 4th 2017 I was diagnosed with M.E but I was pretty much left on my own. As time went on my M.E got worse and by 2018 my consultant classed my M.E as ‘severe’. I’ve declined since then. I now use a wheelchair most f the time. I spend most of my day in bed. I thrive on the moments when I can make it out the house. My Batec helps my mental health so much and has to be one of the best things I’ve ever bought. Since my M.E worsened end of last year it’s been really hard. I miss being able to do activities like crafting and I want to have a declutter and reorganisation in my bungalow and I’m behind on replying to pen pals but I just don’t have the energy. I have to be so carful with how I spend my limited energy and everything is taking more time and effort. I have to carefully plan an pace everything I do and even then the M.E Monster still seems to win. I do hope I can get back to where I was this time last year. I think I’m just scared that how my M.E is now is my permanent ‘new normal’.

I hold a lot of grief with my M.E. I see friends and people I know posting on social media of things they’re achieving even if it is just getting their nails done and I just feel like every one around me is moving but my life has stopped. I’ve always tried to hold onto hope that I can return to education and get into my dream carer (or something similar that’s possible within my restrictions) but sometimes I think it’s just that, a dream. I grieve for my pre-illness life. University, gym, swimming, yoga, ballet. I was always quite active.

I have achieved some things. Like moving into my adapted bungalow. It’s lovely to have my own space and I’ve been here 3 years now. I wouldn’t still be here if it wasn’t for my PA’s, care team and family. I’m still doing little things to my home to make it mine.

I try to look for the positivities. Every day may not be good but there’s always something good in every day. On my bad days it can be hard to look for the positives but it might be something as simple as wearing my favourite pyjamas. 

I’ve developed a good bed set-up with accessories attached to my bed like my Flexzi stand and my Giraffe bottle and well organised bedside draws. Plus my body pillow to support me and my over bed table. I have a profiling bed (a bit like a hospital bed but less clinical looking but it has all the same functions). I also have a hybrid airflow mattress, my new one has memory foam on top of the moving tubes of air so it’s much more comfortable and better for my hypersensitivity. The motor is also very very quiet which is great for my noise sensitivity. I also have a voice controlled environment (blinds, heating, fan, lighting) which makes life really easy for me.It gives me independence too.

Sometimes I try and reach out on a severe M.E group I’m in on Facebook but it often leaves me feeling more negative. I don’t find the chronic illness community online that positive personally. The most positive community I’ve found is Cards2Warriors. They have a monthly card swap as well as offering support mail to those having a difficult time. I’ve been on their long term recipient list so I occasionally receive support mail and it truly brightens my day and reminds me that someone is thinking of me as living with severe M.E is very isolating.

Treatment for M.E is few and far between. Many NHS Trusts like mine don’t have a specialist service and many services aren’t equipped to support people with severe and very severe M.E. Many services also don’t take on out of area patients as they have too many patients in their own area. Last year I finally got under UCLH’s M.E service but I didn’t get the support I need, I’m now not receiving any support as the service has no consultant to run the service so the service is on hold so for now I am back with no support at all, especially at a time when I need the support with the worsening of my M.E. There is talk in the future of the NHS having specialist severe M.E services but this is yet to come into fruition.

More funding for research to understand M.E and develop treatments and ways of better diagnosing M.E are much needed. As of yet there are no treatments for M.E (thankfully Graded Exercise Therapy and CBT have been removed as “treatments”). Unfortunately for me I experienced bot GET and CBT and GET especially made my M.E worse as it did for many people with M.E unfortunately.

To anyone with severe M.E I highly recommend Emily Colligridge’s book ‘Severe M.E: A Guide to Living’ it’s been an invaluable resource and continues to be for me.Saldy Emily passed away due to M.E in 2012.

For now I just take each day, each hour as it comes.

Links, Organisations & Resources:

• Action for M.E
  
• M.E Connect (helpline) - call, email, chaplaincy, online community
  
• Book: ‘Severe M.E - A Guide To Living’
  
• Parliamentary debate on severe M.E (June 2026)

Rolling crash

The M.E Monster is
always with me

Lately I’ve been struggling more with my M.E. I feel like I have Post-Exertion Malaise, PEM, All The Time. PEM is an exacerbation in my M.E symptoms with some additional symptoms. My energy levels are just so low, my pain levels are higher and I have different types of pain. I’m also more hypersensitive especially to light, noise and touch and sometimes smells as well. My brain fog is bad and it’s been affecting my speech and sometimes just thinking to type out a text is an effort. These are just some of the things that I’m experiencing when I’m feeling crashed with PEM.

PEM can come of even after small exertions. Just doing my morning routine with my PA brings PEM on a few hours later. My PA’s do a lot for me to help ease my energy levels but I’m still exhausted. I wake up tired. Sometimes I just don’t feel up to having a bath so I’ll have a wash in bed instead.

By about 2/3pm I’m crashed. I just lay in bed in pain with no energy. There’s been evenings when I’ve cried exhausting myself further but I cry because of the amount of pain I’m in and how bad my body feels and how sick and tired I am of feeling sick and tired. I just feel hopeless of this cycle I’m in.

I reached out to a Severe M.E group I’m in on Facebook and someone suggested I’m in a rolling crash. I’d not heard of this before so I looked it up and basically it’s me not allowing myself to recover from PEM before I exert myself again and experience more PEM. This totally made sense to me as I don’t ever feel like I’ve recovered and I feel like I’m constantly fighting PEM.

I’m also struggling to do things I enjoy because I’m with my PA and after they leave I rest in bed, I have lunch which they leave in the fridge for me and then I’m generally needing to do something low-level and then very soon the PEM hits me. I’m so behind on pen pal mail, thankfully my pen pals are all understanding on slow replies. I miss colouring and I’m usually more prepared with posts for things Disability Pride Month and I haven’t prepared anything yet. All my energy is just going on getting ready in the morning. I’m also a person to not be authentic on social media so I’m not showing this struggle online because I don’t want or need to apart from letting people know why I’m so absent at the moment. I hide behind old photos I post.

This rolling crash is also really affecting my mental health when I’m struggling with my mental health as it is. I’m trying to see to both my physical and my mental health and wellbeing. Like today I went for a very short Batec ride up and down my street with my PA. I was feeling tired but I haven’t least the house in a while and getting out on my Batec really helps my mental health but it exacerbates my PEM later in the day.

I just don’t know what to do to get out of this cycle.

What I’m loving lately - July 2026

1. Understanding pen pals

The past few months with my health being worse and really struggling with my M.E especially I’m finding getting round to doing enjoyable activities like pen palling really hard as my energy levels are so low. Thankfully I have really understanding pen pals who get that I can be slow to reply but know that I always will reply when I’m able to. They also understand that sometimes a postcard is all I’m able to reply with when other times I can send a long ramblings letter. Some pen pals have also given me their mobile number so I can keep in touch with them on WhatsApp wherever in the world they live.

2. Cards2Warriors mail

Cards on peg fairy lights

Cards2Warriors is an amazing organisation. It’s part of the Chronic Warrior Collective which is a really positive chronic illness community. People volunteer at C2W to send mail to people with chronic illnesses, caregivers or medical professionals who are having difficult time. I’m on the long-term support list at C2W. Recently I’ve received some really lovely mail from C2W volunteers. Reading their words of support and just hearing about their lives just really brightens my day especially when mail arrives on a bad day. It’s especially helped as my health got worse end of last year; I’ve settled into this ‘new normal’ but it’s still really tough some days. The kindness of a stranger sending me a card just really means a lot. It reminds me that I’m not alone and that people are thinking of me and want to take the time to make me a card or choose a card I’d like, write in it and send it to me. C2W the organisation also sent me a card too (the bunny one in the photo).

In my bedroom I have string of fairy lights with mini pegs and I peg cards up, a lot of card have come from C2W. Spending so much time in bed it’s great to look at my mail and be reminded of what people have sent me and the support from that mail from C2W or pen pals. I’ve actually filled up my fairy lights so I’m going to redecorate when I’m feeling up to it to make room for future mail.

3. Books

I’ve just finished a great audiobook called ‘The Good Samaritan’ by John Marrs. It’s been turned into a drama on ITV so I might have to watch that. My current reading book on my kindle is ‘Out Of Sight’ by A L Fraine. It’s the ninth book in the series and this one is set near to my local area. Me and my Dad both love the Detective Loxley series so we was excited for this ninth book to come out. I’m three quarters of the way through it so excited to see how it ends.

4. Secretly I’m loving reality TV

I goy Disney+ as a treat to watch some different things and I watched some dramas like 9-1-1 Nashville and some docuseries but then I watched a reality TV program called Villa Vanderpump and got into it and watched all 3 seasons and kept getting annoyed at some of the cast members who I disliked. I’m now rewatching Secret Lives Of Mormon Wives as I started to watch it a while ago but there’s 4 seasons now and I’m getting into it and I’m on S2 currently.

5. My care team

I’m loving my care team. My PA’s are amazing and I feel so grateful to have such wonderful PA’s who go and above for me and who I get along with so well and who support and help me out so much. I’m also got a new social worker who when I met her she was great and really understanding of my individual needs and is helping put things in place to improve my care when I’m in hospital and also my situation with agency care.

6. Colouring

I’m really into colouring at the moment. I’m particularly loving a brand called Calm Over Chaos. I have most of their pen collections, I particularly love my new alcohol markers and I’ve just got their colouring binder and signed up to their ‘Colouring Quest’ which is 10 colouring pages for my binder every other month. I love my new 150 Crayola pens too. I’m enjoying colouring as it’s low-energy, a great distraction, you feel a sense of achievement when you finish a page and it’s nice and creative. My friend Laura also got me a set of colour in postcards which I love as I’ll enjoy colouring and they’ll be perfect for pen palling. I love colouring while listening to my audiobook or a podcast.

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.