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)