M.E, Me & My bed

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 

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.

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 

• 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

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.

Life update

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

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

Mine & Emily’s pottery painting pieces 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Living with M.E and EDS - What my day looks like

I thought I’d share with you my daily routine and how having both M.E and Ehlers-Danlos affects every part of my day and how I try to manage my symptoms as well as what it’s like to live with disabilities and chronic illnesses; especially ones that limit my energy and ability to function.

I’ve literally been working on this post all month. Blogging is hard with limited energy and when you’re dealing with Post-Exertion Malaise from other things in life but I enjoy it and I love seeing how many people my blog reaches and I hope it helps readers; makes them feel that they’re not alone and hopefully through sharing my lived experience I can share ways on how live with a disability or chronic illness and it will help other people out there. Though blogging is difficult for me at times and I get frustrated that I struggle to not blog as much as I’d like to this is what keeps me blogging. I would have liked to have blogged more this M.E and EDS Awareness Month this has been the main post I’ve been working on. Maybe next year I’ll be more organised and plan ahead.

My day…

Waking up

My blue smart blind

I usually wake up feeling like I haven’t slept. I also have difficulties with sleep so a lack of sleep often makes my symptoms a lot worse during the day which then makes my sleep at night worse. It’s like a never ending cycle but this isn’t unusual if you have M.E.

I find waking up at the same time, 9am, helps. I also have time to wake up and get functioning ready for when my PA arrives. If I could sleep in and didn’t have PA’s each day I probably would and would love to sleep more especially as I often sleep so badly.

I sleep on a profiling bed with a hybrid airflow mattress. My profiling bed allows me to sit myself up, get comfortable independently, raise the hight of the bed for care tasks with my PAs and nurses as well as tilt the bed to manage my POTS. My mattress helps to prevent pressure sores especially as I spend such a long time in bed. I’m also a high risk for pressure sores be cause my skin is more fragile because of my EDS and because I have reduced mobility. 

I also have a body pillow which I find supports my body which helps with my EDS joint instability and also when I’m quite tired and my muscles are weak.

Sitting up slowly

Once I’m awake I lay and allow myself to wake up. My smart blind automatically rises a little at 9.03am and a little more at 9.15am to allow me to adjust to some daylight (my blinds behind my smart blinds are still closed), I just find this helps with my light sensitivity. Usually just my smart blind stays up during the day so my bedroom is kept dim. Sometimes I do open my other blinds if I can tolerate the light. I wear dark glasses as well.

At 9.15am I take my morning medication. I usually read or watch a bit of YouTube until my PA arrives at 9.30am.

I sit myself up in little increments which I find is better and helps my orthotic intolerance and POTS. - With both M.E and EDS it’s very common to have dysautonomia which is problems with the body’s automatic functions. Orthostatic intolerance and POTS: Postural Orthostatic Tachycardia Syndrome, are two conditions under the umbrella term of dysautonomia. Basically sitting and standing are difficult for my body to do and cause dizziness, low blood pressure, high heart rate and feeling faint and actually fainting (syncope). As a result of this I spend a lot of time laid in bed and I have to use my wheelchair.

My time with my PA’s

My PA’s Alison or Emily get here at 9.30am. They make my breakfast for me. Doing small tasks helps me as it helps save my energy for other things and for later in the day, it also helps to minimise the severity of my PEM (Post-Exertion Malaise) later in the day.

As an alternative to agency care I get Direct Payments allocated to me from adult social care to employ Alison and Emily to support and care for me. I’m allocated hours for a mixer of personal care, social support and to do my weekly food shopping.

Getting ready for the day

My bath lift

Usually I get a bath in the morning; because of my hypersensitivity with my M.E I can’t tolerate showers. I use a bath lift to get in and out of the bath and I have help to lift my legs in and out of the bath. On a bad day I’ll have a wash in bed.

I try and do as much for myself as possible. My PA prepares my toothbrush and I brush my teeth. I wash my own face I just have my PA wet my flannel mitt for me. My PA’s do wash me as this is something I struggle to do and I’m usually getting tired by this point. I do break the tasks down so after each task I’ll rest so I can be in the bath for some time. Towel drying is a joint task. I’ll get dressed on my bed which my PA help me with and I also have barrier creams put on me to prevent or treat pressure sores. 

If I’m having a bad day I might put on clean pyjamas and have a PJ day but as much as possible I try to wear ‘day clothes’ to help with my sleep. I’ve found maternity jeans a great tip for wheelchair users as well as for comfort laying in bed.

I often wear funky compression socks which I find helps with my circulation and blood pressure. Sometimes though I find the tightness can irritate my M.E’s hypersensitivity and the pain I get in my legs when my M.E flares-up.

I have to be careful when dressing and undressing because of my EDS as my joints are so unstable and cause easily sublux or dislocate.

I also have to deal with my SPC catheter. I have bladder failure because of my EDS as EDS can affect organs in the body; my EDS also affects my digestive system and heart. I like to choose a tubie pad set that will match my outfit of the day. I also like the wear bag covers as I feel more comfortable and confident with a bag cover and line cover especially if I have to go out. I’ve got some cute sets like yellow ducks, dinosaurs and floral designs.

Once I’m dressed I’ll transfer into my wheelchair and I’ll do a self-care skincare routine. I’ll also brush and style my hair. When Emily is working I’ll ask her if she can braid my hair. I find braids great as I love my hair braided and it keeps my hair out the way for a few days.

My PA’s will also ensure I’m wearing my CareLink watch which detects falls or I can press it should I need help in an emergency - like the time when someone came into my back garden at 3am or when I had a severe asthma attack.

I’ll also put on my CMC thumb braces on both hands. These are the only two braces that I wear all the time as I get a lot of pain there and I use my hands a lot. I’ll put other splints and braces on when needed such as post-dislocation or if a joint is being particularly painful or unstable, or to support it when doing a task like typing or writing.

After getting ready for the day 

Once I’m ready for the day my PA will make me a hot drink. I always drink drinks with a straws and hot drinks at a cooler temperature. Often I’ll drink out of a lightweight lidded cup too as I have weak wrists so holding and drinking out of a mug is often difficult for me. I find straws really helpful and now with the ‘straw ban’ I ensure one is always on me. Lidded cups and lower temperature drinks are also safer for me.

Usually my PA’s finish at 2pm during the week and 12pm on a weekend. On a Tuesday Alison does my weekly shop for me so she’ll finish early.

If I have a medical appointment I will ensure it’s within the window of my PA’s hours so they can take me. I also need someone with me at all times when I leave the house in case of emergencies or I start to become unwell or I get tired etc. At appointments my PA can also sometimes add in information on my behalf at appointments too which is really helpful especially as I get forgetful and brain fogged. They can also assist me like if I need to get undressed and into a hospital gown if I’m having a scan or just provide me with emotional support.

Sometimes if the weather is nice I like to go out for a ride with my Batec - my wheelchair power add-on. Getting out the house with my Batec massively helps my mental health as I spend so much time in my home. Sometimes I go around my estate or to the postbox but even if I just go up and down the road it’s nice to get out and get some fresh air.

We do other thing activities too like batch cooking homemade meals, baking and crafts. 

What I do during the day…

One of the first things I try to do after my PA leaves is do my daily bullet journal for the day. I’ll write my to do list and any reminders to myself as well as upcoming appointments etc. so I’m able to plan and pace my day. I traffic light each task on my to do list to help with activity management. My bullet journal is like my second more functioning brain and I’d be quite lost without it. I also use it to track my health, symptoms, self-care and sleep and other things like my spending and books I’ve read.

I have regular rest periods throughout the day where I’ll lay in bed and listen to an narrative soundscape or a mindfulness meditation. I find rest doesn’t restore my energy levels but it just puts a pause in my day and allows my mind and body to just stop especially before I hit the crash point. I find that if I don’t rest my energy levels will complete crash and my Post-Exertion Malaise will be a lot worse. I’ll also lay with a podcast or audiobook as restful activities.

My over bed table for activities

I try to set one ‘main activity’ each day, like today it was to type a bit of this blog post. Some activities I’ll do on my own others I’ll do with my PA depending on the activity and day as well as whether I’m having a good day or not. On bad days resting is more of a priority than doing an activity,

I have to spend most of my day in bed and I’ll know the signs for when my body is needing to lay down with my Orthostatic Intolerance. 

I do try to spend some time out of bed each day and that’s one reason why I love my new wheelchair as it allows me to be able to get around my home. Plus being seated in my wheelchair is much safer for me and it is more manageable for my OI and POTS. I try and sit in my front room for lunch and tea at least and spend a little time at my craft desk too just for 5-30 minutes if I can. It just gives me a change of scenery from my bed. In the summer when the weather is nice I’ll try to go out in my garden; I have a garden bed so I can lay down and enjoy being outside.

If getting to the bathroom is challenging I’ll attach a day bag to my catheter so that helps my M.E.

I’ll normally do a mixture of resting, laying and listening to my audiobook or a podcast, doing a activity if I’m able to and just general other stuff all mostly in bed until my PA comes back to work around 3.30/4pm.

If I have an appointment that day (not just medical appointments but dates in my diary for say Dad visiting) my day will be dedicated to resting, as will the day before and the days after as after I will experience PEM. I try to limit my appointments and space them out as much as possible to give myself time to recover.

Post-Exertion Malaise

PEM is a key symptom of M.E, fatigue also comes along with EDS as well. PEM is a flare-up of M.E symtoms as well as an experience of other symptoms following any form of physical, cognitive, emotional or social activity. PEM can com on hours or days after the activity and recovery can take days, weeks, months or even longer. Even the smallest things like talking can cause me to experience PEM. The hardest thing I find with PEM is I don’t know when it will really hit me, how bad it will be and how long it will take me to recover. 

I experience PEM daily and by mid afternoon around 2/3pm my body is struggling with PEM from my morning routine and any activity I’ve done that day like my ‘main activity’ is really affecting me.

I also experience PEM from other activities like appointments or spending time with my Dad. The PEM from bigger things like this they will crash me much more and my M.E symptoms can be much worse and the crash will last a lot longer and will take longer to recover from. I might struggle to feed myself,  be unable to drink out of a cup, unable to talk and move, my pain levels are high, I struggle to tolerate noise and light much more than normal. These are a few examples of just how severe M.E can be for me just from simply leaving the house to see a doctor.

My bedroom and bed space

My bed with accessories:
Giraffe hands free bottle
Flexzi stand
Body pillow

Most of my day is spent in bed at various degrees. Having a profiling bed is so helpful as I can independently lay myself down and get myself comfortable. My body pillow is very supportive both for my EDS joints and the weakness I have in my body because of my M.E especially when I’m tired or having a bad day.

I’ve developed a bit of a set up in my bed space. I have everything I need organised into my bedside draws. I also have a Flexzi stand for my iPad and kindle (which I also have a remote controlled page turner for which is great for reading laid down). I also have a handsfree water bottle or I can swap the bottle and be able to drink hot drinks handsfree - this is especially helpfully when I struggle to hold, lift or drink out of my lidded cups whether it be because my M.E has flared up or because my EDS is bad in my wrists and hands. I also have my over bed table which is great for putting things to hand on, or eating meals off or do activities in bed.

I keep my bedroom low-sensory. I usually have my blinds closed and my roller blind is voice controlled so I can close that if I need more darkness. It’s nice and quiet too but I often wear my noise cancelling headphones as well.

I find smart technology really helpful when living with severe M.E. I can voice control my heating, fan and lighting too; alternatively I can control everything on my Apple devices. I have soft lighting in my bedroom and I love fairy lights and I love my remote control mushroom lamp which I can set a colour I find I can tolerate and I can dim/brighten or use it as a sensory lamp.

Evening PA time

I’m usually quite tired by the time my PA gets to me around 3.30/4pm. I have a list of ‘bad day needs’ for when I’m having a bad day and I might not be that talkative when I’m tired and in pain. I find my EDS pain gets built-up during the day too.

In an evening my PA’s will help me get ready for bed. I’ll have a wash in bed which my PA’s do pretty much most of. I use a towel off foam wash from NilAqua that I highly recommend. More barrier cream to put on.

I’ll rest in bed while my PA makes my tea. I’ll eat my tea either in my from room or in bed depending on how I’m feeling.

My PA will do other jobs while I’m eating.

Before they leave they’ll ensure I have everything I need for the rest of the evening and night time.

Once my PA has left and my evenings

I usually go back to bed if I’m not already in bed once my PA has left. I’ll rest and listen to a soundscape a well as lay and listen to a podcast. I might also watch some television (I’m really into police body cam documentaries on YouTube at the moment). I don’t watch a huge amount of television as I find it quite sensory overwhelming. I’m also really enjoying colouring at the moment I’m a bit obsessed with my pens and colouring pages from Calm Over Chaos currently - I’ll colour and listen to a podcast for a bit as my evening activity if I have the energy. I have a very busy mind so I find resting really difficult - not helpful when you have M.E and you’re feeling exhausted. I find I can just about entertain myself with podcasts or my audiobook or reading my kindle. I try to do restful activities in an evening as my energy levels are low and I’m pretty exhausted and in pain. I find I need to distract myself from my pain and symtoms as well until I’m ready to sleep.

If I’m having a good evening I can get into m wheelchair and get myself a hot drink like a decaf coffee. I like flavoured decaf coffees. If I’m not having a good evening I’ll ask my PA to leave me a coffee in a thermal tumbler so I can still enjoy a coffee later in the evening.

Sleep

Sleep is really difficult for me. I have some evening inf where I accidentally fall asleeep while listening to a podcast and I’ll wake up in the morning with my glasses still on and my duvet still folded over unswept in. Then I get other nights where I just cannot sleep at all sometimes because I’m in pain other times it’s just  because my body refuses to fall asleep. Thankfully I do have an appointment with the sleep clinic next month so I’m really hoping them can help with my insomnia as I have insomnia a lot and when I have a lack of sleep my M.E is much worse the next day.

M.E and Me

Today is M.E Awareness Day

I got ill in 2014

After I got the flu

For years I was told over and over 

‘It’s just Post Viral Fatigue Syndrome,

With rest you’ll recover’

But I did not recover 

I felt frustrated 

I blamed myself 

I couldn’t work out why I couldn’t snap out

Of my overwhelming fatigue

And fog that clouded my brain

And why every step I took

Felt like I was being weighed down

I thought it was me

I thought I was doing something wrong to feel this way

I tried everything

Then in 2017

The 4th July to be exact 

I finally got a diagnosis 

I got told I had M.E

Myalgic Encephalomyelitis

Suddenly I could stop blaming myself 

I had a name

My symptoms were not my fault 

What I was feeling was real

But there was no cure

Not even a treatment 

No magic pill to make the M.E go away 

I must simply learn to live with my M.E

As the years went by

My M.E faded into Severe M.E

I am a statistic 

1 in 4

The 25%

One of the #MillionsMissing

I live in my bed most of the day

I get around in my wheelchair

Rare trips out to feel the fresh air on my face

My Batec is my happy place 

Where I feel free 

I try to have some normality 

Spend time at my craft desk

Or even do activities in bed

But for every action there is a reaction

And the M.E protests with

Post Exertion Malaise

Those three words

Mean such a lot

Sometimes the smallest thing

Will flare up my symptoms 

It’s like having the flu

And the worst hangover 

And not having sleep for a week 

All rolled into one

That’s how I feel all the time 

What did I do to feel so bad

Was doing that really so bad

For the M.E to over react 

For my M.E to leave me

Unable to sit; to talk; to move

Only able to lay there in the dark

With only my audiobook on the lowest volume for company

The pain in my body

In my legs especially

To high for the pain score to register 

How long will this crash last 

Days, weeks, months

Or even years?

I’ve only ever stabilised and dipped 

I hold onto hope each time I dip

That I will recover back to how I was before 

There is no end in sight 

Help is hard to come by 

Doctors don’t understand M.E

Services are a postcode lottery

Care was a fight

I only got care

When I became so unwell

I cannot care for myself that much

I rely upon someone else 

For all tasks of daily living

Medication only offering me some relief 

Trying every option

My mental health affected

By my chronic illness 

Quality of life 

Sometimes I wonder what that is

I’m only 32

When will this M.E nightmare end

DecodeME was promising 

Changes in my DNA

Markers in my immune system to explain the onset

And in my nervous system to explain my pain

Proof that it’s not all in my head

Hopefully they’ll develop a breakthrough 

Some sort of treatment 

Each day is a struggle 

A fight with my multitude of symptoms 

Treading on eggshells 

Trying not to overdo it

Trying not to crash 

Grieving for me pre-M.E life

For now until a cure is found 

It is just M.E and me