Imposter Syndrome with M.E – My recent experience with the booster jab.

November 17, 2021 by SleepyBookworm94 ♥ 1 Comment

I’ve been feeling very down this past few weeks and dealing with a lot of ‘imposter syndrome’ feelings. ‘Imposter syndrome’ is a mental state in which you experience overwhelming feelings of self doubt and you question your own knowledge and experience. I think it’s a very common feeling with a chronic illness, especially one that is often viewed as an ‘invisible illness’. The feeling of being a fraud, doubting your symptoms, believing it’s all in your head. The majority of this comes from other people’s opinions and judgements of chronic and invisible illness. Sufferers like myself, of chronic or invisible illnesses receive so much criticism and doubt, harsh judgements from people who doubt our illnesses and believe us to be inventing illness or exaggerating. All of this judgement and lack of understanding leads to this ‘imposter syndrome’ where we begin to question our own experience and we end up feeling like frauds because that’s what so many other people think.

My recent experience with imposter syndrome was triggered by the need for a covid booster jab. I received my first two covid vaccines in group six, the vulnerable group. Group six of the JCVI priority list included people with neurological illness, which M.E is classified as. Despite this, thousands of M.E sufferers were refused because M.E was not on the list of example neurological illnesses and many health professionals don’t know M.E is even classed as neurological. I used a letter composed by the M.E Association to inform my GP of why I should be eligible for a priority covid vaccine and my GP instantly agreed and I was booked in that week. I was so surprised to receive that understanding and agreement, I’d convinced myself it would be a fight for acknowledgement, like so many things with chronic illness are. I’m still extremely grateful for that understanding, and I felt extremely lucky to have my covid vaccines despite my young age.

Now over six months has passed and the booster jab has become available for those who had their initial vaccines in the ‘at risk’ group. I’m eligible with a long term neurological illness once again, but I’m refused at every turn. The NHS booking system won’t allow me to book a booster jab because I’m only 27. Despite it clearly saying any adult can book who has a long term illness and is at risk of developing serious illness from contracting covid, I cannot book a booster appointment. The system just keeps repeating that I’m not eligible. I’ve rung 119 who had no interest in my eligibility, who repeatedly told me I’d have to go back to my GP and have them arrange it. I’ve spoken to my GP who says I am automatically eligible because I was included in the ‘at risk’ group for my first two vaccinations, but who has no ability to book me a booster appointment. The 119 NHS advisers send me to my GP, who sends me back to 119 and it’s this vicious circle that doesn’t end or have any conclusion. I’ve been going through this vicious circle for 2 weeks and the whole experience has left me ashamed, disappointed, and devalued as a person. It’s triggered an ‘imposter syndrome’ feeling because it feels like at every turn I’m denied, I’m ignored and I’m left feeling like a fraud. Because every time someone tells me M.E isn’t one of the listed illnesses, every time someone says they’ve never heard of M.E or it doesn’t make me eligible; I start to believe it. I am eligible, I have a right to get my covid booster but I’ve been refused so much that it’s left me feeling like I don’t deserve the booster, like I’m not eligible and I’m a fraud for trying.

It’s reminds me of my first experience and diagnosis process with M.E; of continually being told I was healthy and my symptoms were in my head, being unbelieved and ignored. It causes this feeling of shame and self doubt that is so destructive. I see thousands of other M.E sufferers experiencing the same fight and it just breaks my heart. We spend every day fighting fatigue and pain; we shouldn’t have to fight for acknowledgement and acceptance. We shouldn’t be refused and ignored because we don’t have an illness that is always physically visible; we shouldn’t be denied because of ignorance. Once again, M.E sufferers have to fight for something we are eligible for because our illness is misunderstood and not as well known. It’s extremely frustrating and I’ve felt like screaming numerous times in the past weeks. My GP has suggested I now go to a walk in clinic and I have an appointment booked for that in a couple of weeks but until then I won’t find any relief. I’ll constantly be worrying about getting there and being turned away because the system tells them I’m not eligible. I’ll worry and rehearse the argument and proof that I am eligible. I’ll have endless nights worrying that I will be refused, ignored and treated like a fraud. It’s ridiculous that in this day and age, M.E is still an illness which requires so much argument. It’s unacceptable that M.E sufferers are denied something because a computer system doesn’t recognise M.E as a valid illness. It’s unacceptable to be ignored and discarded because it’s too much effort to change the system. It’s unacceptable that we’re still so disbelieved and disvalued. I feel extremely let down by the NHS, by the government and society. Having M.E should not be a life sentence to fight for recognition, it shouldn’t be a constant struggle to access treatment and understanding. M.E and other chronic/invisible illness sufferers shouldn’t be made to feel like ‘imposters’ or frauds. We deserve the same understanding and attention as anyone else with a long term illness.

2021 NICE Guidelines for M.E/CFS

November 1, 2021 by SleepyBookworm94 ♥ 0 Leave a Comment

Do not offer people with ME/CFS:

any therapy based on physical activity or exercise as a cure for ME/CFS
generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

https://www.nice.org.uk/guidance/ng206

The NICE guidelines for the treatment and care of people with M.E were published last week after months of delay. It feels like a big win for M.E sufferers and supporters, Graded exercise therapy has finally been removed from the recommended treatment for M.E/CFS. I was prescribed graded exercise therapy 2 years after I developed M.E, I knew nothing about this treatment or what it would entail. The whole experience is something that has been engraved in my memories and just thinking about it still brings feelings of anxiety and depression. In my first appointment I met my physiotherapist who wanted to know why I’d been referred; when I told her it was because of M.E she just stared at me blankly. She had never heard of M.E, had no idea what the symptoms were or what kind of illness it was. I had to explain myself and my illness, when I barely understood it myself. That initial meeting left me with a lot of doubts because I couldn’t understand how anyone could help me manage a condition they’d never heard of. I was given exercises that I performed for the physio and then had to continue and gradually increase every week. I remember thinking it sounded easy, that it sounded gentle and the word ‘gradual’ made me feel like I had time to improve, there was no pressure. I was completely wrong about all of that. It wasn’t easy, initially it was just a few exercises to fit into the day but every week I had to increase the amount of times I did the exercises and new exercises were added. Every week I increased the exercises was met with pain and overwhelming muscle fatigue. My fatigue worsened and I was told to push through the pain, that it was in my head and I just had to get past that block. Every time I went back I had to perform the increased amount of exercise and when I couldn’t complete the amount of reps or do all the exercises, then I was made to feel like I was being lazy, like I wasn’t trying. I dreaded those appointments. I dreaded going in and not being able to perform all the exercises and I dreaded when I’d be sent home with a list of more exercises to add on to the ones I already couldn’t manage. There was no patience, there was no understanding. When I expressed the amount of pain and fatigue I was feeling, I was ignored and told it would fade and eventually my body would get used to the new levels of exercise. The whole experience was so disheartening, it was mentally and physically damaging. For a year after, I spent the majority of my time bedbound because my body had just crashed, I’d pushed and pushed my body when I should have listened to it’s warnings. But when a health professional is telling you it’s in your head and it will get better then you’re inclined to listen because they are the professional. It was at that point that I realised, not all health professionals knew best.

The update to the NICE guidelines for treatment of people with M.E/CFS was delayed due to the response from health professionals who were adamant that they knew better; Doctors who supported graded exercise therapy and claimed it was a useful treatment despite the scientific evidence stating otherwise. That’s the most frustrating part for me. Doctors and health professionals are in a scientific field, medicine is science. Yet when science proved that graded exercise therapy was not beneficial in the treatment of M.E; that it was actually harmful in the majority of cases; a whole lot of doctors and health professionals refused to listen. They made their feelings known, that despite the scientific proof, they wanted to continue prescribing a harmful treatment. It defies all logic, but there are a number of doctors etc who believe they know better, who believe their opinion overrules the science. In this day and age it’s ridiculous that there are doctors out there who would ignore, not only the science, but patients actual experiences. This update to the NICE guidelines is a win but the fact it was delayed so long and fought against by so many health professionals proves that support for this disease still has a long way to go. There are still too may doctors who are ignorant, who have never been educated on this condition. There is still the misconception that it is a psychological illness instead of a physical and neurological disease. For me, a sufferer of M.E; it feels as if we’ve won a battle but we’ve still not won the war. There is still a lot more fighting to do.

Creative Writing

October 19, 2021 by SleepyBookworm94 ♥ 0 Leave a Comment

A bit of a different post today. I spend a lot of time writing and journaling so I thought I’d share a piece of my creative writing along with photographs that inspired it. I’m a very creative person and despite huge changes to my life because of chronic illness; being creative is the one constant in my life and something which makes me feel productive and lifts my mood.

Trees in the Wind

Leaves fly from the branches and across the ground, as if fleeing from some unseen horror.

Wind chimes sing all around me loudly, as if their voice has been silenced for too long.

The overwhelming rustle of trees sweeps over me, like a wave slowly building in strength.

Trees move all around me, swaying to and fro, as if they are dancing to Earths hidden music.

I stand amid the gales, taking strength in the fact, that although the wind blows against me

I will stand strong, an unmovable force.

I will not be knocked down, for I am as resilient as the trees that dance in the force of nature’s power.

My roots grow stronger with every breeze and bluster, centering and grounding me.

The wind will always blow and I will always stand, for I am one with the wind; my chaotic companion.

To nap or not to nap; that is the question.

October 16, 2021 by SleepyBookworm94 ♥ 2 Comments

Napping. It’s something I never imagined doing before I developed M.E. The thought of taking a day nap was ridiculous to me, why sleep when I could be doing so many other, fun things? Now it’s an important part of my day, it’s a necessity if I want to remain active and get things done.

Among health professionals and doctors it’s a subject that gets a lot of negativity. When my M.E developed after Glandular Fever; I was told to rest as much as possible, give my body time to recover. I was advised to sleep when I needed it and not push through the fatigue. After about 6 months this advice changed; I was told that napping would knock my body clock off, that humans had evolved to sleep at night and be awake in the day for a reason. I was told to push through the fatigue, ignore the urge to sleep or rest, distract myself with activity. It was like the doctors had decided six months of constant fatigue was enough and that suddenly it was a mental issue rather than a physical one. Every time I returned to a doctor I was told my body would reset itself, to stick with avoiding sleep in the day; it was the only way to recover, I’d be back to normal in a few months. It’s been 7 years. For half of that I struggled against overwhelming fatigue and pushed myself to exhaustion; trying to avoid any sleep or rest during the day. When I was overcome and fell asleep, I felt ashamed, I felt lazy.

One of the major factors of M.E is that sleep is unrefreshing and not restorative. A normal, healthy person sleeps and their body goes to work recovering from the days activities. Their energy levels get refilled and they wake up ready for another day. A person with M.E wakes up with the same level of tiredness as when they went to bed. I don’t remember what it’s like to wake up refreshed; I wake up every morning and I’m already exhausted. The ironic thing is; no matter how unrefreshing sleep is, my body still demands more and more. Because I have constant fatigue, my body feels the need to sleep constantly; even if it doesn’t erase the fatigue or refill my energy levels. I could sleep 12 hours straight, wake up for an hour, then sleep for another 12. The only way I’ve managed to avoid sleeping my whole day away is by taking a short sleep in the afternoon. It’s something I’ve been judged for, something I’ve been criticised for. But I’ve tried fighting through it, I’ve tried distracting myself and using every ounce of willpower to stay awake and it always ends up with me becoming bedbound for an extended period of time because my body just crashes and becomes unwell.

I usually take a 2 hour nap in the afternoon, sometimes I don’t actually fall asleep, I just lie down in the quiet and close my eyes. That two hour rest is what gives my body the energy it needs to get through the rest of the day. If I can’t take a nap in the afternoon; if I’m out or busy then the effects become noticeable quickly. I become slower and clumsier, I end up dropping things or having accidents because my fatigue clouds my head. I become very short and snappy with people, I’m irritable because the energy just isn’t there and it’s a horrible feeling, running on empty. I become very forgetful, and I start to lose conversation, I don’t hear people talking to me and I can’t hold a conversation because the brain fog is so bad that I forget words and get things confused. I can’t eat and I forget to drink because the fatigue is so overwhelming by this point that all I can do is sit and stare vacantly at nothing. I become a zombie and it’s the worst feeling I’ve ever experienced. So I take a couple of hours to rest because the alternative is being a zombie. Some days are good days and I can get through them without that rest, some days I might only need an hour of rest or half an hour. On bad days I might go to sleep for 3 hours and still not be able to do any more activities or jobs for the day.

The one thing I’ve learned is; people will have their opinions on this subject and they can be really hurtful. But they are not the one experiencing the illness. Someone else can not feel what I feel. It’s easy for people without chronic illness to make judgements and give advice, whether with good intentions or not; but if they have no experience with a chronic illness then they have no idea how much it takes out of the body. They have no idea how depressing it is to wake up everyday feeling exhausted, and having no energy, the physical toll it takes on the body and on the mind. They don’t understand the disappointment and shame I feel whenever I have to admit defeat and go back to bed. It has a huge impact on my mental health, I still feel guilty and lazy when I have to go to sleep, I feel like a failure. I watch people go out to work and I feel useless and lazy because I can’t do that. But none of that changes what I have to do to get the best out of my life. When someone has the flu or another viral illness, they’re told to rest. It’s not something they are made to feel guilty about or judged for because it’s what the body needs to recover. So why is a chronic illness any different? Because it has no end date, because it isn’t temporary? A chronic illness is chronic because it doesn’t get better, there is no cure. So I continue to rest and take my naps when my body needs them. That is one of the ways I manage my chronic illness, I shouldn’t feel ashamed or be judged for that.

Brain Fog

October 12, 2021October 13, 2021 by SleepyBookworm94 ♥ 4 Comments

Brain fog is one of my most frustrating symptoms with M.E. I hate the feeling of not being able to think clearly, forgetting words, trying to remember facts or recall something. People can talk to me and I just don’t take any of it in, sometimes I don’t even register that someone is talking to me. Some days I notice it a couple of times and other days; it’s there every time I try and think or focus on anything. It is something badly affected by my fatigue, when I’m exhausted or having a low energy day then it is almost a constant presence.

It’s called brain fog because people describe it as being stuck in a fog and unable to see or think clearly. I agree with this comparison but I describe it differently. When I try to recall something or focus on a particular thing; it’s like my brain becomes filled with cotton wool and I have to fight through it all to find what I’m looking for. It’s something that exhausts me. Over the last 3 years I’ve been studying for a degree and it’s really highlighted the issue. I never realised how badly my cognitive abilities had declined, I was always a very enthusiastic learner, I enjoyed school and learning new things and I was good at recalling information. I could memorise essays and lists of questions. My experience of studying after I developed M.E has completely changed. I would read a paragraph and then realise that I’d just read it without taking any of it in, I couldn’t absorb information as quickly and my focus was limited. Some days I could read a question and answer it in detail, recalling information I’d learnt; other days I couldn’t put words into a sentence or make any sense of what the question was asking. One of the worst parts for me was the word recall, I studied Language and Literature because I love words, I think the written word has the power to change so much, to improve and inspire. But I found myself unable to recall the meaning to words, I’d be given a definition to a word I knew, but for some reason I couldn’t recall a word that I knew was in my head. It’s like constantly having an answer on the tip of your tongue, I knew that I knew something but in that moment; my brain was completely blank. It’s quite a scary experience, and one that chips away at your confidence.

I managed to complete my degree and get a 2:1 but it wasn’t easy and there were days where I just had to admit my brain wasn’t working. It was a matter of making the most of my good days to study and breaking revision into smaller parts. I had to repeatedly rewrite information to take it in and to write essays, I had to have a detailed plan to remind me of how I was answering a question. I was very surprised to see how much my study pace had changed since before I had M.E; it was slow and steady with frequent breaks and whole weeks where study was just not possible. There were days I honestly thought about giving in and quitting because I felt like an idiot, I felt like I wasn’t smart enough. My own stubbornness kept me going and eventually I accomplished my goal, despite the challenges. The most important thing I learned studying; was not to be so hard on myself. Yes, I took longer and sometimes fell behind but it’s okay to learn at a slower pace. My intelligence didn’t just disappear, it was just fighting through lots of cotton wool!

Coffee with a friend.

October 4, 2021 by SleepyBookworm94 ♥ 2 Comments

As a person with a chronic illness, my social life has become difficult. I’ve lost a lot of friends because I have had to cancel and rearrange so much because of my health. When you have to turn down or take a rain check so many times; people eventually stop inviting you to stuff. It’s disheartening to watch your friends move on and get on with life without you. I’m lucky enough to have a good friend who doesn’t get mad when I have to cancel and who doesn’t mind short meet-ups and infrequent visits. Today it was the first time I’ve seen my best friend since January; with moving house and other personal challenges it’s been the first chance I’ve had to go out and socialise.

Before I developed M.E I used to love getting ready to go out, I used to take my time doing all my makeup and straightening my hair. It’s funny the things you don’t realise you missed doing until you do them. I still buy new makeup and I love picking new colours of lipstick and eyeshadow, I buy all the brushes and concealers but they inevitably end up in a drawer because most of the time I don’t have the energy to use any of it. The truth of the matter is, if I’m going out; after picking out clothes and getting dressed, brushing my hair and teeth, eating breakfast and taking my medication; I have no energy left to get all my makeup out and be enthusiastic about it. Today I left time to rest in-between so that I could get dressed and eat, then do my makeup a bit later. It was fun to try out all the new make-up I’ve bought over the months, and although my tastes aren’t as wild and bold as they used to be, I enjoyed making myself up, although I’m sad to say I’ve forgotten how to use eyeliner properly!

I only met my friend for a couple of hours, we had a coffee and chatted. It might seem like a very boring social event for the majority of people my age but it means a lot to me. To be able to get out and socialise for a couple of hours is a huge mood booster. It’s easy to get used to the isolation of chronic illness and anxiety, there are times I avoid going out simply because I don’t want to see people. The easier choice is to stay inside my home, where I feel safe and hide away from the world. But I know that sometimes you have to leave that comfort zone. I enjoyed my coffee date; I was anxious and already quite fatigued from the travelling but there is nothing better than seeing a friend and having a gossip. The mood boost is worth all the anxiety I felt and the post-exertional malaise that will hit me tomorrow. For a few hours I wasn’t cut off from the world, I didn’t feel lonely or isolated from friends; and it’s surprising how long that feeling will last me.

Now the day is done, all the make-up is off and I’m back in my pyjamas. My body is starting to feel the kickback, I’m starting to ache and my head’s feeling foggy but that’s chronic illness; it doesn’t like activity. But for a few hours I felt like my old self; enjoying make-up again and letting my hair down from it’s usual messy ponytail!

The Joy of the Countryside

October 1, 2021 by SleepyBookworm94 ♥ 2 Comments

Life with a chronic illness can be an isolating experience in more than one way. There’s the social isolation, the emotional isolation and the physical isolation. Living with a chronic illness leaves me housebound the majority of the time; which is why photography has become extremely important to me.

When I’m having a good day and manage to get out, even just for a small walk; I take my camera and just photograph the world around me. I’m lucky to live in the countryside where I’m surrounded by nature and wildlife. I spend most of my life confined within my house because of fatigue and it’s hard when there is so much to be explored and appreciated outdoors where I live. So when I can get out, I photograph everything, things other people wouldn’t find interesting or beautiful. So many people take the outside world and nature for granted because they always see it, it’s always there. Since developing M.E I’ve learned to appreciate nature and all the small wonders of being outside because I don’t get to experience it all the time. Photography has become a hobby that not only stimulates my creative side, but improves my mental health in so many ways. The act of being out and photographing nature makes me appreciate my good days, days where I’m strong enough to almost be normal again. Then when the inevitable bad days return; I use those photographs to remind myself of the beauty in the outside world; I can edit those photos and take myself virtually out of my four bedroom walls. It’s an escape when my illness confines me to the house; it’s freedom. There’s a sense of accomplishment capturing nature and finding new things to photograph. I might exhaust myself getting out and taking those photographs but the post exertional malaise and the payback on my body is worth it, for those few snapshots of life outside.

Even stuck indoors, I find myself taking photographs of pets and things outside the window; walking round the garden snapping pictures of whatever I can see. Looking through that camera lens makes the world seem like a brighter place, it highlights the uniqueness and beauty in the world. So I wanted to share some of my photographs with you, to share that sense of wonder and freedom. Because when your life is spent battling chronic illness indoors, it’s nice to be reminded of the beauty that exists outside in the world.

Hyperhidrosis – It’s just embarrassing!

September 29, 2021 by SleepyBookworm94 ♥ 6 Comments

Hyperhidrosis is probably one of the most embarrassing symptoms I suffer with. It’s a symptom that not only affects me physically but mentally and emotionally; it crushes my self confidence. Hyperhidrosis is a symptom attributed to two of my health conditions; M.E and IST and it can be made worse by my medication. Hyperhidrosis is a symptom that is defined as excessive sweating without physical exertion or excessive temperatures. It doesn’t matter if it’s the middle of winter and snowing outside; I will still be sweating. It doesn’t matter if I’m bundled in clothes or wearing a cami, I’ll still sweat. For me it’s a symptom that has worsened my mental health considerably and flared up my social anxiety.

Minimal exertion makes me sweat horribly, today I changed my bed sheets and by the end of it I looked like I’d just showered. I climb the stairs and I sweat, I clean and I sweat, I stand up too long and I sweat. Even showering causes me to sweat which is the most annoying part because I’ll shower to clean the sweat off my body and I end up getting out the shower and feeling like I shouldn’t have bothered. It’s one thing to manage it at home, in private but a whole other experience to manage it in public. I’m extremely self conscious about it because one of my worst affected areas is my face. I didn’t even know faces could sweat but they can and it’s a miserable experience. Social anxiety makes going out in public hard enough, but constantly worrying about if others have noticed the sweat dripping from my face is all consuming. Every time I walk into a shop I’m instantly wiping my face with my sleeve, I’m constantly checking my face to see how bad the sweating is. I try thinking cool thoughts, thinking of cold things like that will somehow help, if there is air conditioning in a shop then I’m standing under it. I wear waterproof makeup and it still ends up running down my face.

I’ve had a few comments on it in public, not nasty comments but concerned ones. People asking if I’m alright, people commenting that I look really warm or flushed. The thing is, facial sweating in particular is associated with illness in people’s minds so a lot of people have thought I’m unwell. With the Covid pandemic this has been a nightmare because one of the main symptoms is a temperature and people see sweat on my forehead and inch away like I’m contagious. M.E/CFS has made my temperature regulation malfunction so I do constantly run hot and have fever like symptoms, this exacerbates the sweating. With so many places taking temperatures as you enter, it’s been hard and embarrassing. My family have all commented that it doesn’t look that noticeable, that I just looked flushed but no amount of reassurance helps because I’m constantly aware it’s happening. The truth of it is, a lot of the time I don’t think it’s noticeable unless pointed out; but the anxiety over it makes the sweating worse and then other people start to pick up on it.

I’m just tired of constantly having to plan public outings, days before I’m looking through the wardrobe for clothes that I can’t sweat through, clothes that are more airy and loose, I’m planning whether I need to take tissues to dab at myself, I’m planning what makeup has the best chance of staying on my face. For once I’d just like to get up, get dressed into whatever I can find first and go out without worrying how much I’m going to sweat that day. With winter approaching it’s nerve wracking because if people see me sweat in the summer then I can use the excuse the weather as an excuse; but in winter it just seems more out of place and it’s when I think I start to look out of place. I’ve got coffee planned with a friend next week and there’s a huge part of me that just wants to cancel because it’s easier, because I don’t want to have to worry about embarrassing myself or the person I’m with.

It’s a symptom that isn’t painful physically but has real mental implications. The facial sweating doesn’t smell or cause me any physical issues but it’s mentally damaging. It wears away at your self esteem constantly and it makes you paranoid. I’m constantly thinking that when someone is looking at me it’s because I’m sweating, I’m looking out for people noticing it and it’s tiring and frustrating. It takes the enjoyment out of socialising and being out in public places, it makes me feel ugly even if I’m wearing clothes I love and I’ve spent hours on making my makeup perfect. I can’t put into words how emotionally and mentally damaging this symptom is, it ruins my body confidence and the impact on my body image is extensive and very hard to cope with at times. It’s a physical symptom that impacts the whole person and not just one part and there definitely needs to be more understanding and support out there for people who deal with hyperhidrosis.

Post-Exertional Malaise with M.E

September 20, 2021 by SleepyBookworm94 ♥ 0 Leave a Comment

Today I’m covering one of the most annoying and unfair symptoms of M.E: Post-Exertional Malaise (PEM). PEM was one of the first symptoms I experienced with M.E and a defining factor in my diagnosis. PEM refers to the worsening of symptoms after minimal exertion. In simple terms; it’s payback for activity.

PEM is a major symptom of M.E. If I exert myself, even minimally then in 12-24 hours I experience a huge increase in my symptom severity. I’m sure it can be different for everyone but in my experience; my fatigue overwhelms me, my body feels heavy and weak, to the point I can’t get out of bed. I experience noise and light sensitivity, my whole body aches and my joints become stiff and painful. I experience huge cognitive issues, my brain feels like it’s been wrapped in cotton wool and I find it hard to say what I mean, I become extremely forgetful and blank, I struggle to communicate or hold a conversation. My temperature doesn’t regulate and I can go from having hot flushes one minute to shivering with cold in the next. I become out of breath just walking a few feet and my legs can give way or become like jelly. A lot of people call it a ‘crash’ and that’s a good descriptor because it is like my body is breaking down and crashing into physical and mental exhaustion. This ‘crash’ usually happens to me about 12-24 hours after an activity and it can last a couple of days; or it can last all week. It’s really difficult to describe the feeling of a ‘crash’; it’s like my body has run out of energy completely, I feel debilitating exhaustion and fatigue. I have to fight to keep my eyes open because the fatigue is like a tidal wave that just drowns me and pulls me into sleep and unconsciousness. My whole body feels like it’s been battered and every muscle feels strained and achy, every joint is stiff and painful. It’s like being hit by a sudden flu that just flaws your body and shuts you down completely so that all you can do is rest and wait for it to be over.

A lot of people don’t understand how minimal activity can be, to trigger PEM. I could take a ten minute walk and 12 hours later, I’m unable to get out of bed. I could clean one room in my house and the next day; my pain levels are high enough to need opioids. I could spend a couple of hours socialising with a friend and then need to sleep for 18 hours straight. These are activities that normal people do without consideration, without thought; it’s easy and there are no drawbacks. I have to schedule activity, taking into account that 24 hours later, I might be unable to get out of bed. If I want to go out for coffee with a friend; then I have to leave the next 2 days free because I’ll be dealing with PEM. I have to space activity out so that I always have at least one rest day in between. PEM isn’t always predictable though, I frequently do activities I don’t think will trigger PEM and then the next day I’m stuck in bed wondering what happened. Other days I can do multiple activities in one day and then feel alright the next day; those are the cruel days because I hope that suddenly I’m cured and I don’t have this horrible neurological disease that punishes me for living my life.

One of the hardest things about PEM, especially in M.E is other people’s opinions. People think it’s an overreaction to leave days free for rest and recovery, people have told me to fight through the PEM and even to ignore it. The consequence of fighting through or resisting rest during PEM is a huge relapse in my condition. If I ignore my body’s need to rest and recover from minimal exertion then I cause a huge relapse in my M.E that can leave me bedbound for weeks or months. So it’s frustrating when people tell me to exercise more and be healthier by moving around more because I’m trying my hardest. Exercise is a huge trigger for my PEM, half an hour exercising means a day resting and recovering. Most people feel that ache and fatigue after going to the gym, multiply that by 10 and then you understand the effect of exercise on someone with M.E. I’m not being lazy, I wish I could go to the gym like I used to, I wish exercise was something I could just do without planning or payback. Yet people continue to tell me to exercise more, go for a walk everyday or do yoga or pilates because its just stretching. Graded Exercise Therapy is still something prescribed for patients with M.E despite research showing it to be harmful. I did Graded Exercise Therapy and it was one of the most depressing and damaging therapy I’ve ever done. I was made to feel lazy and guilty for not being able to do daily exercise, for not managing certain exercises because of the pain. I ended up being practically bedbound for a year because I listened to other people instead of my own body. That therapy made my illness unmanageable and eventually my body couldn’t cope and broke down; I spent 90% of my time stuck in bed, in pain, on medication and completely isolated and alone.

After that experience I learned that no matter how stupid it may seem to other people, resting after minimal activity is the only way my body can cope with day to day life. PEM is the cruellest symptom because it punishes you for doing things you love. I love walking in the country but I have to accept that if I want to do it then I might be in bed for 2 days after paying for it. I love my pets but I have to accept that an hour spent cleaning out the rat cage = the rest of the day in bed. I used to read for hours with no care for anything else but now I have to accept that if I spend too long reading then I’ll be too mentally exhausted to do anything tomorrow. It’s a difficult way to live and there are days when I don’t know why I continue on, why don’t I just give in and live my life from my bed? But I carry on and do the things I love because I am not my illness. Yes, I have a life-limiting illness but with balance and acceptance I can still live an enjoyable and worthwhile life.

Allodynia – Everything Hurts.

September 17, 2021September 17, 2021 by SleepyBookworm94 ♥ 0 Leave a Comment

I’m going to be covering some of the main symptoms of my illness over the next couple of weeks.

Today I’m starting with Allodynia which is a type of nerve pain in which pain is caused by a stimulus that doesn’t usually cause pain. Basically things that don’t usually cause pain in the body cause a pain response. I developed this symptom a few years ago and it’s been attributed to my M.E and Fibromyalgia. I first noticed it when I started to feel pain when being touched. Hugs were painful, people slightly knocking into me or grasping my arm would cause pain. In the summer; just applying sun lotion was painful. I’d never heard of Allodynia before and I thought it was all in my head for a long time. I finally got some clarity when it was picked up on at a pain clinic; the doctor noticed I would flinch and grit my teeth when he touched certain areas of my body. When he mentioned and explained to me what Allodynia was; it was a relief because I realised it wasn’t imaginary. It was challenging to accept a new symptom developing from my M.E but it felt good to be told it wasn’t in my head for once.

The worst of my Allodynia pain is in my back and spinal area. I use arnica gel for muscle pain and when I apply it to my back, the act of massaging it into the skin is painful and it has to be done as quickly as possible. The pain is difficult to put into words; it’s similar to the feeling you get when pressing firmly on a bruise. My whole body feels like one huge bruise and any pressure causes a pain response. Even wearing certain clothes trigger it. I used to live in skinny jeans and now I can’t tolerate them at all; just the denim material rubbing against my skin or putting pressure on my skin causes pain. Underwire in bra’s is a huge trigger and when I shop I have to walk past all the beautiful, colourful and lacy bra’s. Instead I have to manage with sports bras and comfort bras without wire; it definitely makes me feel less feminine and womanly which is sad. I have to buy all my clothes in a bigger size because I need them to be loose an airy. I feel like one of the worst things about this type of pain; is it changes your whole lifestyle. I have to look and consider how everything that touches my body will affect me and it puts limits and conditions on how I live my life.

Although my back is the worst affected area, my whole body experiences this pain to different degrees. My pain response can be triggered by the most random stimulus. When my cat climbs over my legs or up my legs to lay on my lap; it’s like she is leaving bruises with every step. When my one year old niece climbs onto my lap or grasps me for support; the pain makes me grit my teeth. Wearing jewellery hurts, wearing tops without adjustable straps hurts, wearing clips in my hair hurts, clothes labels hurt, wearing socks without elastic hurts; even writing this post which causes my wrists to rub against the laptop is enough to cause a pain response.

Allodynia is one of the worst symptoms of my chronic illness because each exaggerated pain response wears away at my willpower, there are days I don’t get dressed or brush my hair because I just can’t handle the pain. I have good days where the pain is manageable and less debilitating and bad days where I can’t move without something putting pressure on my skin and causing pain. But the truth is, a lot of people have never heard of Allodynia and I imagine a lot of people with M.E and other chronic conditions experience this symptom and just attribute it to being all in their head. I wish I’d known about it a lot sooner so I didn’t question and doubt my own body and brain; but as with most symptoms of invisible illnesses, it just gets ignored and overlooked by most health professionals. To me; it just another example of how chronic illness symptoms can be vast and misunderstood.

The Sleepy Bookworm

Tag: M.E