The Things I do Because of my Chronic Illnesses That are Often Misread

Sorry it’s been a bit radio silence here lately! I’m struggling with my ME and relying on adrenaline, caffeine, sugar and sheer necessity to get through everything I do. With feeling so god damn awful and trying to just carry on I thought I’d share some things I do because of my chronic illness.

1. Resting my head on the table or my knee whilst I handwrite notes or an exam – I started doing this at school when I was 10 and I always got told off for it. But it was just more comfortable like that. I didn’t know why at the time but as my symptoms have got worse I have realised it’s a thing I do to try and alleviate dizziness and head pressure and just keep going. Fun fact head on desk is how I got through my Land Law and Trusts Law exams.

2. Never having my feet on the floor and finding all manner of awkward positions to sit in so my feet are at hip height – helps with fatigue and dizziness and is just more comfortable.

3. Leaning against whatever there is to lean on

4. Constantly moving around if asked to sit/stand in one place – shifting weight and finding different positions helps with pain.

5. Working from bed or the sofa – I’m often dizzy and suffering from pressure in my head or I’m nauseous and in a lot of pain. My bed and the sofa both mean I can alternate sitting and laying.

6. Picking up my phone far too often when I’m meant to be working but my ME is causing severe head pressure and I just can’t concentrate – Really trying to cut the phone addiction. This doesn’t help I just am not good at sitting, or laying and blankly staring at what I’m meant to be doing.

7. Walking slowly – I’m sorry, I simply can’t keep up due to my pain and fatigue. Please be understanding if we are out together and walk at a pace I am able to manage on that day.

8. Grabbing hold of walls or using them to guide me I often get dizzy and go into pre-syncope. When my vision blurs due to this or I just feel unsteady on my feet I often use the walls to help me navigate my way to the bathroom or wherever in the house it is I’m going.

9. Taking my time when changing position (i.e laying to sitting and sitting to standing) – head pressure and dizziness is a bitch and it definitely gets worse when I change position.

These are just some of the things I do due to my symptoms that people may misread.

What do you do because of your chronic illness?

The month of both excitement and tears

June feels like it’s flown by. I think that’s because I just haven’t stopped and if I have stopped it’s been because I’ve been so unwell that I’ve been unable to even watch TV.

June started with me with my family and ended with me back up north due to flat stuff. Moving out is not fun. But we move (Literally in 4 weeks from the day this will be posted). I definitely miss being home. Although my chronic illnesses are a lot worse and my family just don’t get it I’m finding it’s too quiet working from home on my own. I’m bored, not because I don’t have enough to do but because I need that stimulation of people (and dogs around). But the health benefits are certainly worth it. Lots of exciting law things happened this month. I got a video interview for my dream law firm (and then got rejected but we move).

I also got an interview for a scholarship I need which is at the end of July. The pressure is on because I need it but I’m excited. I also took part in Legal Cheeks virtual vacation scheme which helped me massively in determining what I want for career and in providing me with a network.

I really hope my luck in terms of interviews continues and I get some more interviews for my outstanding applications. If I don’t that’s also fine as I’m aware many firms have paused recruitment and it’s a difficult year. There is always next year.

My stomach eased up after I moved back to my apartment as it’s meant I can eat more flexibly and in a way that works for my body. My bladder on the other hand. I’ve spent the last week on antibiotics for a UTI that may or may not be there. It’s helped reduce the spasms but it’s still causing significant problems, especially if I dare drink more than one cup of coffee a day. I am at the moment whilst I’m trying to pursue law, trying to work my full time job and trying to sort out a job for August (I’m resigning it will be official by the time this is published).

My mum and nan are putting an awful lot of pressure on me about my decision. I’m leaving because I’m simply not well enough. I need to get my health back so although I’m looking for an ideally part time role my interest in something full time is limited to something of the dream job category. It will only be 5 months come resigning until I start my LPC so I reason if nothing I’m well enough for is available I will manage living with my parents and worst comes to worst just doing general CV bolstering activities.

There’s only so long you can push yourself for and although I am getting out of this ME flare, I think, Maybe that’s the adrenaline speaking, I need to place myself in the best position to excel in my LPC and go on to have a long career in law. I also need to recondition and doing that whilst working isn’t going well right now.

Passing out when trying to sit up after a laying down workout isn’t fun!

So that was June! How was the month for you?

The contradictions in ME/CFS recovery

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Full recovery from ME is possible but rare, but I believe most people over time can improve their level of functioning. It’s just often so hard because of these contradictions and because of access to the things that may help. (I.e supplements, being able to afford not to work or afford to work less, a safe family environment that doesn’t cause flares if unable to work and thus afford to live alone.)

When you have ME exercise is the worst thing you can do. Right? But even that’s not as clear cut. Some level of gentle movement is essential i.e  laying down yoga or even rolling over in bed and slowly doing more household tasks by yourself. And there comes a stage in ME recovery where exercise is actually a necessary part of building that function back up. No more cardio than a walk but when carefully managed it plays a role.

You need to simultaneously not do too much but not do too little. Yet not doing too much kind of means doing too little. Generally pacing for recovery means doing 50% less than you think your able.

You need to try and have a sleep schedule, a routine, despite this sometimes being impossible.

Do you eat super healthy knowing this can often involve significant preparation, money and chewing energy or not? Honestly I’ve eaten super healthy and super not healthy and been at similar levels of functioning. I definitely need to stop with the chocolate for aesthetic reasons right now (Okay no one needs to stop with anything, eat what you want but I’d feel better about myself if I consumed less.) but there are times that all I can stomach is junk food. Don’t ask why but my body will go through times where it digests ultra processed food better than whole foods.

Coffee or no coffee?

Prescribed medication that may increase fatigue or not?

Navigating ME is like a minefield and the stress itself can cause symptoms to get worse because stress takes energy that we simply don’t have. It’s hard to know what to do and get consumed in the process.

It can all get very complex. So before you think someone isn’t trying enough to be well, understand these complexities and that it is mostly trial and error. With very small margins for error as it could cause a permanent set back.

 

The one where my body forced me to slow down

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March has been such a month that I feel like there should be an entire blog post dedicated to it. I think I’ve hinted that I was previously running myself into the ground and March was the month my body said no.

It actually didn’t start horrifically and by that I mean the first couple of days of the month weren’t too bad. I onsighted all the things within my grade range on the autos up at the time. Even a 6b on the continuous overhang. And if you know me you know that the continuous overhang is hell! The pump is real but I stayed calm, focused on body positioning and somehow it happened.

The month then very quickly deteriorated. Both in terms of my health and my ability to climb. Although I did find ways around my bodies extra limitations and was climbing the same grades where it suited and could find a unique beta to compensate! Some things were also going on at work at the end of February which were negatively impacting on my mental health. I hated being in the office and believed by team hated me. I was over it by the second week of March but I do suspect the extra stress didn’t do me any good.

The month involved a lot of pretending I was okay through extreme dizziness and pressure in the back of my head. Through muscle weakness and balance issues. Through a non-existent level of concentration and decreased cognitive function. It took a toll on my work performance (although I will still largely hitting stats…) and meant I couldn’t project and step the climbing up a notch.

It also involved a lot of openly admitting that I wasn’t okay. Sitting on the mats, feeling incredibly dizzy and clearly not looking well. Openly admitting to my line manager and her manager that my ME is flaring and I wasn’t doing particularly great. I found I didn’t have the energy to get up early enough to put make up on anymore and if I did I felt so dizzy that I had to take mornings super slowly.

My mask well and truly gone.

I came 16th in a climbing competition, both in that round and on the overall. Topping 9 problems – which is more than I managed the previous month. I think the setting just suited me a lil better but maybe that’s a sign of actual progress. Had a great time with friends, adrenalined up because my façade is important. Not for other people but for myself.

For one night I was a normal 22 year old.

I got a grade 2 hamstring strain and did some damage to the ligaments in the back of my knee. Climbed with one leg 2 days later because both got too painful. Not for my pain tolarence but because I knew I was injured although at that point had not gone to get it checked out.

March might actually be the month I saw some sense. Yes my body forced me to stop. I was well and truly done. That first sick day and a half. I couldn’t sit through that endometriosis pain for another minute. I couldn’t sit through those ME symptoms for another minute.

But I also saw some sense. At some point something clicked and I was like no.

Health first. (I say this all the time then we swiftly give up)

I got my leg checked out after it hadn’t improved in four days. Something I wouldn’t normally do which is why I still have so many lasting injuries. I’ve had a back injury since the end of November.

I peaced out of the office at 9:30 one morning because my ME was not playing and used some sense by taking the next day off.

I expressed by concerns over the you know what situation and peaced out for a further 10 days.

Ironically I then got a suspected case of you know what that night. If that doesn’t describe ME in a nutshell I don’t know what does. My body finally saw a chance to rest and it got sick.

The last nearly two weeks have been spent trying to be productive and get what I need done, mainly from laying on the couch. They have also been spent unable to walk unaided, collapsing, passing out. Unable to cook, which fortunately for me I had sufficiently meal prepped minus a chilli I had to make. (By make I mean put beans in a pan, put sweetcorn in the pan, put the jar of sauce in a pan and bobs your uncle).

I have ordered pizzas because I’ve not been able to stomach the food I have nor go to a shop to get the food. There’s been lots of naps. Lots of being unable to nap but feeling too unwell to do anything. And I mean anything.

I’ve had many symptoms I’ve not had in a while and it’s been scary.

The world has changed and horrible as it sounds it’s nice to not feel inadequate because of my ME. It’s nice to not have to deal with the “I can’t say no” when I’m invited somewhere that would likely give me payback.

It’s nice to not have to try to be a normal functioning 22 year old yet still falling short.

God has definitely carried be through the times. I’ve got through being sick before. I can do it again, as long as I put the work in. Take the supplements I have, gentle movement, slowly getting more intense as I recover from this virus (I mean slowly). The church. In terms of the physical space doesn’t exist right now for many of us, if not all of us reading this. But we can still find ways to worship and feel gods presence. I’m going to join an online service at 6pm tonight. Can these online services last pls! Faith is how I stay grounded.

This month has been a weird one. For everyone. But we’re nearly through it. The weather is currently glorious, although I’m currently in a dressing gown with my electric blanket on and my heating on… It’s sunny. And hopefully as spring and summer come in there will be more sun to come!

That’s it from me. How’s March been for you?

 

 

 

This is ME

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I’m gonna use this time of self isolation to raise awareness for ME/CFS. This COVID-19 shit and especially the UK vulnerability criteria and how mine and my GP feel about it has made me realise how little people know about this illness. It’s kinda like the UK doesn’t care that we’re at risk of significant and serious relapse because we won’t die. GPs are also seeming to ignore what the ME association and Action for ME believe about the interaction between COVID-19 and ME/CFS. It’s not hard to google kids.

The sad thing is many GPs are not at all educated about this condition and there was a recent study showing some shocking statistics about what GPs believe about the illness and the people with the illness.  If even GPs believe we’re lazy, we need to exercise more and that it’s not a real illness then how are we supposed to get help and treatment? Now in my personal case it probably doesn’t help that I’m awful at advocating for myself and I never push to get what I want or tell the full story.

But telling the full story is hard. It’s hard to explain what’s wrong when in essence it sounds like everything is wrong.

My ME affects me in a myriad of ways. I get numbness, tingling and even burning in my feet and left hand. It leads to difficulty controlling my hands and my legs will oftentimes forget how to be legs.  I have seizure like shakes which hurt. It’s like a full on core workout. I can’t move throughout them and I can’t stop them. But I’m aware of them. I’m dizzy, even when laying down. I feel intense pressure in my head. Struggle to breath, get heart palpitations. Easy muscle fatiguability, I struggle to keep my eyes open. Nausea, Cognitive dysfunction and full body pain. I have a chronic sore throat and cough and often have a low grade cold. I’m sensitive to light, less so noise and smell but it does happen. My glands swell, my chest hurts. I have visual disturbances, most commonly in my left eye.

Yet I function, or atleast look like I function as the normal healthy adult. Yes I’ve had a lot of sick days lately. ME flares suck. Now I’m self isolating (by choice, sorry finances) and hilariously last night developed coronavirus symptoms. I was coughing more than usual and this morning I spiked a fever so absolutely no work until next friday! I get fevers a lot, and I don’t think it’s COVID-19 but can never be too careful in a global pandemic.

But for 6 years of ME, having never had a sick day from a job until 2 weeks ago is impressive.

What they don’t see is how much I have to push myself to do these things. How unwell I feel doing these things and the state of my flat. They don’t see how unwell I am when I wake up in the morning and the difficulties I have showering and washing/brushing my hair. The difficulties I have cooking or doing a form of exercise that isn’t climbing.

Yes I am well for someone with ME. I’m lucky right now… But it’s still significant. It’s still a significant daily battle with all of these symptoms at varying degrees. I’ve heard that most people with ME who can work full time only feel occasionally ill. I am not one of those people. I push and I fight, because there is nothing worse than feeling like a burden on the world and feeling misunderstood or feeling like your not enough.

There is progress being made in understanding this illness. It just hasn’t reached the mainstream yet and it needs to. We need proper education, proper research and as always more awareness.

 

COVID-19, Self isolation and ME

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I know we are all sick of hearing about it. There is nothing else in the news but this actually quite disastrous global pandemic. Not just disastrous health wise, but disastrous business wise and for individuals job security and financial security. We have seen mass hysteria, panic buying loo roll of all things (Plz send me some if you have some spare) and lots of vague advice. Today I want to write about the effect of the COVID-19 pandemic on me, and more specifically me and my ME.

So in the UK ME is a grey area with regards to the guidelines for at risk people to self isolate and stay away from busy offices etc. We’re not entitled to flu jabs unless we have comorbid conditions that do entitle us to such flu jabs. But the ME association believe we are included in the vulnerable population that should self isolate (https://www.meassociation.org.uk/2020/03/coronavirus-covid-19-latest-government-advice-and-what-it-means-for-people-with-me-cfs-17-march-2020/) and recognise the risk of a significant, prolonged and potentially severe relapse if we catch COVID-19 and I know Jennifer Brea has been tweeting her heart out about COVID-19, neurological symptoms and various post virus statistics for previous outbreaks. We know any virus can cause a flare up. A cold has caused one that I’m still recovering from. It’s been over a month. Now Covid-19 is more comparable to the flu than the common cold – we also don’t know how it will effect people with ME and I myself – whilst I can afford to do so (which won’t be long) am not prepared to take that risk.

It  may be a risky decision. A decision that many in my life will not approve of (My family especially). But it was not a decision taken lightly. I have a full time job, a job I’m in probation for and therefore by doing this I may lose it – which considering the likely economic climate come June when probation ends is a risk. The potential loss of income is a risk considering my mad expensive rent and the fact that I don’t know how my parents would react to me deciding to move home in august, work part time and look after my health. (Yes partly my fault because I don’t open up to them).

But my immune system is down, this morning I came down with what I’m pretty sure is an ear infection. You know that classic childhood middle ear infection. I’m 22. My body is weak and I need to acknowledge that. If the conspiracy that coronavirus went round my city in December/January isn’t true and I just escaped because I was stronger then. In terms of my immunity (and L-Lysine which I’m gonna resolve to take every day again because it definitely meant aside from some tonsillitis in November I had a persistent low grade cold instead of constantly getting sick). I’m also not back from the flare from the cold I had end of January/early February (I didn’t cough much I don’t think it was coronavirus. Started with a horrific sore throat and then materialised).  If I get a virus now it could and likely would knock me out. Not just for a week or two but for months.

Health comes first. It’s difficult, it’s scary. Not only because of financial consequences and peoples perceptions . But because being stuck in the house reminds me of when my ME forced me to stay largely in the house and horizontal. There’s trauma there. Trauma that may need to be worked through if I am to stay sane for however long I stay off work. And not only stay sane but come back to work in a mentally stronger place with higher concentration etc. The trauma is the scariest part of this. Never did I see myself willingly largely confining myself to my flat by choice because life is better experienced outside of these four walls. But I also didn’t forsee a pandemic and to protect my current health and my future health it was a decision that had to be made.

 

 

Injuries, fatigue and new highs

 

This week has been an interesting one and exhausting af. I already started the week quite low on spoons because I haven’t had enough rest at the weekends for the last couple of weeks. Monday, I had work and then went climbing as I had signed up to a coaching session. I found it really useful and after, with the help of some friendly gym people got pretty far up a v3-4 that is soooo not me. Crimpy and overhanging. I blame the attempts on that problem for the state my left hand is in. I also completed a V3-4 which I had literally just been misreading the pervious week! (again friendly people are useful). I also did a few of the comp problems that looked challenging but doable in no more than 3 attempts. It was nice to see that there was a range of problems at a level that I could do in a comp setting tbh. Seeing as I wimped out of the comp for that reason.

So we come to Tuesday when I find all the tendons are sore. In both hands. I’d been struggling a little with my right hand but nothing major and no issues with climbing just tendons overreacting cause hypermobility puts more strain on them. But such is life, hey? We had four hours of no work to do and I legit went crazy and signed up to paranationals. Although I’m not a route climber by discipline anymore and find bouldering way more fun and social despite being more of a challenge I want to get myself back into competing and a) I’m a paraclimber b) I definitely feel more secure competing on a top rope.

Wednesday was a climbing day (and a work day but nothing of interest occurred). Climbing was good and despite my best intentions to not put too much pressure through my fingers I may have but didn’t make the situation any worse and did a V3 I couldn’t do the first move of a month ago in two parts, completed another V3-4 and flashed a V2-3 antistyle comp problem. So it was worth it.

Thursday I climbed again and really did my fingers in on some two finger pockets on a 6b+ I didn’t quite manage. But that’s okay. I couldn’t try it more than once because of my fingers but I know I have it in me. Shame I don’t go to that wall often enough! I think It’ll be a couple of weeks now until my next visit.

The middle left hand finger got destroyed a little more on Friday when I was putting my jeans on. Yes putting my jeans on. I had a rheumatology appointment and H-eds was mentioned for the first time and there was talk about referring me to a fibro clinic. Also had another three viles of blood drawn and was left not feeling at all well and with no head in the game at work but some days that’s how it is. We win some and lose some. I went home after work, rested and ordered wagas cause I was just so dizzy and also deserved it.

Saturday, I worked on an application and rested before I went climbing and despite only intending on 4s and 5s ended up flashing a 6b and 6b+ and finishing off a v steep and elongated 6a+ (I can confirm when the auto belay lowered me I was on the floor. It was exhausting). I also tried a couple of 6cs and got pretty far. One I tried to project a little and got most of the moves down but was just too weak to send. The other I didn’t want to try twice as it was crimpy and although slabby I was conscious of the stress on my fingers. But 6c I will get you again.

Then I got home and realised my tendon was a little more of a mess. So now we are buddy taped and hopefully all will be good by Wednesday (my next climb). My elbow has also been playing up again as I have a loose piece of bone or something in it and injuring it by falling a few weeks ago aggravated that so would rather not one hand climb. Also getting lots of rest as I can barely stand without almost passing out today!

I quit my job because of my health and it’s not the end of the world

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Imagine this. Three weeks ago you were full of life. Doing better than ever. Yes you were still ill. You were still symptomatic but you were full of life – full of hopes, full of dreams, full of excitement and it was foreseeable that you could actually put all of those into action.

Imagine starting a temporary job that you ended up loving. The people, the places, the fact that it was out of an office, the chaotic and varied nature of it. And yes. I was symptomatic. Yes my joints were fucked. Yes I wore braces more often than not but I could do it. I could manage.

I was working over my contracted hours by choice and genuinely loving being able to do all the things.

And then life happens.

And life, as life often does hit me like a ton of bricks.

I had a little crash. Well I say little. Realistically it ended up not being that little. Presumably because it hit in the middle of a full day excursion so I had no choice but to deal. So what actually happened was that I ended up unable to move my legs for two hours which was fun. But anyway – despite feeling beyond dreadful the next day I thought I could push through and work as long as I took precautions and I did – nothing much else to say about that other than looking back I realise how stupid I was.

So fucking stupid. I’ve lived with ME for 5 years, I should have known better.

The next few days featured getting stuck in showers, chest pain, heart palpitations, difficulty breathing, shakiness, dizziness.

All the signs that would let the average person know they had to stop or at the very least slow down. But did I?

No.

Admittedly that’s because I could adrenaline myself up to work and so I felt okay. Not well, but okay. If I really felt that bad at the time,  I would have swapped shifts with someone, especially for excursions. But I didn’t. I never felt that bad at the time.

God do I wish my body didn’t have this magical running on adrenaline power. I also wish I hadn’t gone to Oxford. Everyone said I shouldn’t be going. Everyone who saw the state I was in the night before.

But what did this stubborn bitch do. She went. Because I woke up feeling better than I did the night before and my thinking clearly went no further than that.

And then shit happened. I’m gonna spare medical details because they’re too painful to talk about. But to summarise, I ended up in hospital, and felt no better – if not worse after a day to rest. My body literally gave up on me. And me knowing my body knew there was no way I was finishing the last 2 weeks of this contract. It wouldn’t have been safe for anyone and would have certainty jeopardised any chances of a quick recovery. (Recovery being defined as where I was three weeks ago.)

So I made the brave decision to leave. I’m saying brave because it was difficult and it would have been so much easier to stay. I need the income, the experience and I was happy. I also need to know I can. Which of course I can and if I can’t work full time then that’s just statistics really.

Most people with ME/CFS can’t work full time at all. Very few would be able to successfully activity lead at a summer school – and I doubt any without some degree of payback.

This doesn’t reflect on me as a person or anyone else who has had to do this. It also doesn’t mean those two weeks were wasted.

It’s just life. Yet another curveball, another setback.

Another hurdle. But what I have learnt, is that this is a hurdle I can jump. I will see the other side.

 

 

Just chronic illness things…

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  1. Not being able to brush your hair due to fatigue, dizziness or joint instability.
  2. Being an expert at willing yourself to not vomit until the end of that class, exam, train journey….
  3. Coordination issues and generally feeling unstable on your feet.
  4. Being able to pretend your not in pain and act for all purposes normal even when you have really severe pain.
  5. Your bed is also your work/hobby ground
  6. YouTube and Netflix are your best friends even though you can’t actually follow much because brain fog.
  7. Following on from that, actually physically reading is such a struggle that audible is also your best friend.
  8. “Oh, I get tired to”
  9. “Will you ever get better?”/”Are you feeling better?”
  10. “You don’t look sick”
  11. Payback
  12. Feeling like your neck can’t  support your head.
  13. Your only friends are online
  14. Finding a job in your area that you are actually well enough to do is a challenge!
  15. Naps are life
  16. More doctors than friends.
  17. Questioning whether a bath or shower is the lesser evil
  18. Overdue laundry and cleaning
  19. You experience ALL types of pain
  20. Still havn’t shaved…
  21. Often drops things
  22. “Oh the toaster wasn’t plugged in! That’s why the bread didn’t toast”
  23. Overly sensitive to heat/cold
  24. Money worries
  25. Lives in dresses in summer months
  26. Migraines
  27. Following a recipe takes longer than it used to because brain fog!
  28. You have tried everything! From yoga, to veganism to herbal medicine to essential oils.
  29. Struggle to cross roads and get on the right escalator due to brain fog.
  30. Identifies with the term “spoonie”

ME/CFS awareness month

32466089256_6c0a77e003_zIt’s coming to the end of ME/CFS awareness month and I haven’t been able to do much in the way of awareness since it has been a month of exams for me. Exams now over I thought I’d write this post by way of raising awareness.

I guess the best place to start is ME/CFS stands for Myalgic encephalomyelitis or Chronic Fatigue syndrome, as it’s more commonly known. The first thought that comes to mind is how an illness of such gravity was came to be known as a fatigue illness. This illness causes 25% of it’s sufferers to be housebound or bedbound and has lower quality of life scores than heart disease and other illnesses which many perceive as more seriousness.

It is more than just being tired. It’s more than just fatigue.

It’s feeling as though your bodies shutting down on you, easy muscle fatigability, i.e just getting dressed or hair washing is almost impossible even though it’s a task you do every day so it’s not a result of deconditioning.

We’re not just lazy and we’re not just depressed although I understand that from the outside it looks that way. May of us are perfectionists, many of us have ignored the signals our body has given us to slow down until it just gives up.

We’re not lucky to not have to work or to have all this free time.  With an illness that makes even watching TV difficult all of this free time quickly becomes mind-numbingly boring and painfully exhausting. We have all of this time to rest, but the rest never feels particularly restful, it feels effortful and exhausting to do anything but sleep but hilariously enough many of us have difficulties falling asleep.

I find I often get myself too weak to do anything but not able to drop off to sleep. I find myself stuck in the in-between. And yes I will often have some form of background noise on to keep me company, but often it is just that. Background noise. Some ME/CFS warriors can’t even manage that.

This is an illness that is grossly misunderstood, underfunded, under-taught. It often takes years to get a diagnosis and then the medical profession fails to provide adequate management plans, with specialist centres also being grossly underfunded or completely misunderstanding the illness, seeming to think that if you exercise and think happy thoughts that’s it, problem solved.

If your lucky, you’ll get both.

This is an illness that causes a myriad of symptoms, from heart rate dysfunction and difficulty breathing to debilitating brain fog to visual disturbances. Migraines, muscle weakness, bladder and bowl dysfunction, nausea. There are over 60 different symptoms associated with this illness.

And all the medical community have to call it is fatigue.

Of course not all of these symptoms will affect everyone, and each person is affected differently. But I think that’s another misconception with the illness. Some with ME/CFS can work, run, dance, cook, clean, socialise. Some can study but can’t exercise, clean or have much of a social life. Some can work from home, some can work out of the house. Others can’t work atall yet are still able to retain some elements of what it means to have quality  of life, albeit minor. And then the very worst of us are stuck in dark rooms, reliant on feeding tubes, unable to tolerate any noise, human interaction or otherwise.

Quite literally forgotten about, missing from the world.

After 5 years of this illness I’ve ranged from being very mildly affected to being moderate/severe and everywhere in between. I can also say that this illness has been one of the hardest things I’ve had to go through in my life – purely because it takes so much away and makes everything so difficult. But it has also taught me a lot. A lot about myself, about the world we live in, about other people and how to perceive the world. In a weird way, I’m thankful for it, although if you were to pass me a cure I’d jump on it.

ME/CFS needs more awareness. In it’s very nature and severity many of us cannot do enough to raise such awareness. We need allies, we need people to understand. Although it’s impossible to understand until it’s you… So maybe understanding is not the right word- rather knowledge, care, enough to ask the right questions and provide the right support. Enough interest to increase funding, improve research efforts and improve ME/CFS clinics both within the NHS and around the world.