Tag: Fatigue

What’s in a name?

What’s in a name?

by SleepyBookworm94 ♥ 1 Comment

Myalgic Encephalomyelitis (M.E), Chronic Fatigue Syndrome (CFS), Yuppie Flu, Post-Viral Syndrome; all names for the same condition.  So why do I use M.E? 

The main reason I use M.E to refer to my illness, is probably one of the most common reasons; and that is because it doesn’t just refer to one symptom of the illness (Fatigue), it doesn’t describe it as a flu (short term illness) and it doesn’t imply you can only get it after already being unwell (Post-Viral Syndrome).  Although Myalgic Encephalomyelitis is a mouthful, it doesn’t just refer to a single symptom or indicate a single cause.  The majority of people I speak to, recognise my condition as CFS, even health professionals; it’s difficult for me when I hear this name because it doesn’t fully reflect the range of symptoms that come with this illness, it doesn’t consider the multiple bodily systems that are affected by this disease.

I couldn’t count the amount of times I’ve heard “Oh, Chronic Fatigue Syndrome…so you’re tired all the time?” as a response when I tell people about my illness.  You can’t blame people for recognising the most common name for the condition, but it’s disheartening and frustrating to have a life-limiting condition reduced down to a single symptom that most people assume is just ‘being tired’.  I’m going to use the brief description used by the M.E Association here, as it’s the answer I usually supply when someone assumes ME/CFS is just being ‘tired’: “ME/CFS is a complex, chronic medical condition affecting multiple body systems. It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity”. 

The issue with the name ‘Chronic Fatigue Syndrome’ is not that it only identifies one symptom of the illness, but that people wrongly assume fatigue is the same as tiredness.  It’s something I would have done before I became ill so I understand the mistake.  I’m going to use a couple of quotes here I’ve found online to describe the difference between tiredness and fatigue:

“Tiredness is the way we feel when we don’t get enough sleep. Fatigue is a daily lack of energy that can’t be solved through greater sleep alone.” – The Difference Between Feeling Tired & Fatigue – The Sleep Matters Club (dreams.co.uk)

“Fatigue is more than being tired or sleepy. People who have fatigue feel so drained that their exhaustion interrupts their daily life.” – Fatigue (clevelandclinic.org)

“Fatigue is that feeling of dragging a ton of bricks behind you, having no energy, no gas in your tank,” – Fatigue vs tired: what’s the difference between the two? | Well+Good (wellandgood.com)

Even in clarifying how fatigue differs to tiredness, it still doesn’t address the issue that fatigue is just one of many symptoms that affects someone with ME/CFS.  Not only does M.E/CFS refer to a condition with a number of symptoms, but it can also lead to secondary conditions.  Since being diagnosed with M.E, I’ve subsequently been diagnosed with Fibromyalgia, Inappropriate Sinus Tachycardia and chronic vitamin D deficiency.  So M.E/CFS has a widespread affect on the body, not just on energy levels.  Below is a list of symptoms that I experience with M.E to highlight the various symptoms that can be attributed to M.E/CFS:

  • Joint Stiffness/joint pain
  • Muscle pain/muscle weakness
  • Sensitivity to light or sound
  • Non-restorative sleep
  • Fatigue
  • Insomnia
  • Hypersomnia
  • Post-Exertional Malaise
  • Headaches/Migraines
  • Cognitive difficulties (issues with memory, word finding, sentence construction, communicating, difficulty focussing or taking in information)
  • Sensitivity to infections or viral illnesses
  • Flu-like symptoms (sore throat, swollen glands, blocked nose, fever, achiness)
  • Orthostatic Hypertension
  • Temperature regulation dysfunction (hot flushes, hyperhidrosis, heat intolerance, trouble warming up)
  • Allodynia
  • Exercise intolerance
  • Muscle twitching
  • Nausea

Sometimes it feels as if there isn’t a part of my body that isn’t affected by M.E/CFS, which is why I prefer not to use the name that only refers to one aspect of my illness.  There are those affected by M.E/CFS who are completely bedbound, it’s a debilitating illness and I think it’s important to make people aware of this.  It’s all too common to tell a health professional; “I have M.E”, and receive the reply; “You mean Chronic Fatigue Syndrome”, like I’m trying to make it sound more serious than it is, like my illness isn’t valid, like it doesn’t affect every inch of my life.  There are some health professionals completely ignorant of the fact M.E is categorised as a neurological illness and not a psychiatric illness.  I have a psychiatric illness and I can’t stand M.E being compared to it, or being likened to it.  They aren’t the same, they both affect me in different ways and shouldn’t be lumped into one category. 

So yes, I prefer the term M.E because people are more likely to inquire what the condition is and allow me to educate them; rather than hearing the word ‘fatigue’ and assuming the condition is just fatigue based and assuming I need a better nights sleep.  I’m not offended by those that use CFS or Post Viral Syndrome, and I mostly enjoy raising awareness for this condition, under any name; but it is frustrating when people only focus on an individual symptom rather than the whole illness.  Hopefully some of this post will be helpful to those struggling to explain this illness to others and I hope it highlights why a name can be so important when identifying an illness.

A Disaster of an Appointment

A Disaster of an Appointment

by SleepyBookworm94 ♥ 2 Comments

I think everyone who suffers with M.E or other chronic illnesses, experiences the frustration of not being ‘normal’ or wishing their illness would just give them a day off.  I experienced that feeling this week at a hospital appointment and I’ve never felt so defeated and fed up with my body. 

For the last year I’ve been undergoing medical tests for a heart problem, my heart seems to want to beat as fast as it can all the time, even when I’m resting.  It’s caused symptoms like; palpitations, chest pain, syncope, postural hypertension, sweating, dizziness and left me even more debilitated than usual.  Luckily, I started a heart medication this year which completely rid me of all symptoms and reduced my heart rate to normal.  However excessive activity still flares the symptoms up and the chest pain occurs periodically so I’m still having tests to rule out various conditions. 

This week I was sent for a cardiac exercise test which brought dread to my mind immediately.  Anyone with M.E will understand that dread because with M.E; exercise comes with consequences (post-exertional malaise).  There’s also that uncertainty that comes with M.E or any fluctuating condition; ‘will I be well enough to do it on the day?’.   I’ve never realised how quickly M.E can shift and completely wipe out the body until this test, and it wasn’t even the test itself that did it.  I arrived 45 minutes early to my appointment, it’s a large and busy hospital so I must factor in the time it will take for parking and for the distance and time It will take me to walk to the right department.  It’s normally fine, my Mum parks and we find the department with time to spare.  This week however, it was like the whole world had descended on that hospital and it was pure chaos.  The disabled parking lot was full and with a queue of cars waiting.  The main car park was so full that cars had taken to parking on grass verges and in completely obscure places.  The overspill carpark and drop off points were also all overrun.  The queue to park anywhere near that hospital was a mile long and every car was like a shark looking for its prey, every car for itself.  There were arguments over who was first for a space, people would drive like lunatics to beat someone else to an open spot.  I’ve never seen a scene like it, and as an anxiety sufferer, I was horrified by how selfishly and carelessly people will act when there’s not enough of something for everyone.  I was in that queue for 50 minutes, moving at a snail’s pace.  It got to ten minutes before my appointment, and I was still at least half an hour away from finding a parking spot.  When I rang the department to explain the situation and inform them I’d be late, I was told it didn’t matter if I was there 45 minutes early and stuck in a queue for 50 minutes; if I wasn’t there within 15 minutes my appointment would be cancelled.  That would mean an hour’s journey to the hospital and 50 minutes sat in a queue would be completely wasted, for something that was no way my fault, or within my control. 

I’ve always noticed that my anxiety levels can impact on me M.E; panic attacks are physically and mentally exhausting and, energy levels quickly become depleted.  Sitting in that queue for 50 minutes worrying and stressing; then being told my appointment would just be cancelled if I couldn’t park in time…. was completely draining.  At ten minutes past my appointment time, the nurse in charge of my test rang and gave me permission to park at the back of the staff carpark.  It was then a 15-20 minute mad rush to the department; I’ve never moved quicker.  The issue with that mad rush is that I arrived at the department sweating profusely and out of breath…to then begin an exercise test.  I was determined despite my M.E to complete that exercise test but I hadn’t anticipated an hour’s stress and anxiety before and a 15-minute run beforehand.  I got on that treadmill and as soon as it started, I felt like crying because I knew I wouldn’t manage it.  I’ve got short legs and it takes me twice the number of steps to match someone else’s stride; and that treadmill was fast.  I hadn’t expected to begin at jogging speed, and I knew at that moment I wasn’t going to last long.  I’d just run from the furthest carpark, through a busy hospital; after an hour’s stress and anxiety and, I was then expected to exercise for half an hour.  I managed 4 minutes on the treadmill before my blood pressure shot to 210/100 and I started to see black spots overtake my vision, at which point the test was stopped.  I’ve never felt more defeated and embarrassed.  I felt like I’d wasted the nurse’s time, my Mums time because she taken a day off work to take me.  I’ve never felt so upset and frustrated with my body.  It’s a horrible feeling to mentally want something but not physically be able to carry it out.  I felt completely useless, worthless, and deflated.  Despite the nurse trying to reassure me, I felt like such a waste of space in that moment.

That’s one of the worst things about having M.E; it can completely defeat you some days.  I’d started with the determination and energy to do that exercise test, and that energy was depleted before I even got to the treadmill.  I hate disappointing other people and taking up people’s time but there’s also that disappointment in myself and my own ability.  There’s also that fear of being judged as lazy or as somebody who hasn’t tried hard enough. Having to stop that test and admit defeat completely devastated me and my mental health.  That’s another challenging part about M.E, it’s often unpredictable.  M.E is a fluctuating condition, and it can be affected by the smallest triggers.  I might be able to walk for 30 minutes next week but on the day I needed that energy and ability, it wasn’t there.  Life with M.E is a life of uncertainty and that’s one of the hardest aspects of the illness for me.

M.E Awareness 2022: 10 things I wish people understood about M.E.

M.E Awareness 2022: 10 things I wish people understood about M.E.

by SleepyBookworm94 ♥ 6 Comments

1. Despite the other common name for the condition (Chronic Fatigue Syndrome), fatigue is not the only symptom of this illness. M.E/CFS is a multisystem disease and affects various areas and systems in the body.  There are a number of symptoms that affect someone with M.E; widespread pain, stomach issues and food intolerances, sleep disturbance, post-exertional malaise, autonomic dysfunction, cognitive issues, sensitivity to light and sound, orthostatic intolerance, tachycardia, flu-like symptoms, swollen glands etc.  That’s just some of the symptoms!  M.E is so often thought of as ‘just a fatigue disorder’ and that’s wrong, it influences multiple areas of the body. Also, worth mentioning here is that fatigue isn’t just tiredness.  Fatigue in a person with M.E isn’t just ‘being tired’; it’s full body exhaustion, not being able to physically function because your body can’t produce the energy.  Not being able to eat, move around, wash, and sometimes even not being able to get up to go to the toilet.  It’s an exhaustion that leaves severe M.E sufferers completely bedbound.  It’s not just tiredness, it’s overwhelming exhaustion that makes functioning impossible, it’s debilitating and very life-limiting, it shouldn’t be trivialised or underplayed.

2. M.E is a fluctuating condition.  That means symptoms can change on a day-to-day basis and the severity level of symptoms can also differ from day-to-day or week-to-week.  For example, one day I might be able to walk my dog for half an hour or go out and do some shopping, but the next day I might be so overrun with pain and exhaustion that I can’t get out of bed or manage my own personal care.  It doesn’t just differ day to day either; M.E can leave me housebound for a whole month and then I might have a good week where I have the energy to get out a few times and exercise or socialise.  There are varying levels of M.E and sufferers can go from mildly affected to severely affected or the other way around.  Some M.E sufferers experience years of hardly any symptoms but then relapse and are severely affected again.  It’s not a predictable disease.  There is also the issue of post-exertional malaise which refers to the consequences of using energy.  M.E sufferers experience a kind of payback for activity, it’s hard to understand if you’ve not experienced it.  It’s a flu like feeling after activity.  So, I might have the energy to go out, socialise and go shopping but within 24 hours I will experience a crash for expending that energy and it could leave me bedbound for days.  It’s why M.E sufferers must be very considerate about what they use their energy on, because doing so might cause a huge flare up of symptoms that lasts 48 hours or more, which leaves us unable to function normally.

3. There is no cure or definitive treatment for M.E.  I can’t just take a ‘magic pill’ and make M.E disappear.  There have been various treatments recommended for people with M.E and some of these have been more harmful that helpful.  The important thing to note is that M.E is an under-researched disease with no definitive cause or explanation for why it develops, so it’s about managing symptoms rather than treating the root of the problem.  So, management of some of my symptoms are done by medication, pain killers, antidepressants, stomach tablets etc.  I’ve undergone a few courses of CBT (Cognitive Behavioural Therapy), been to physiotherapy, had lidocaine infusions, done acupuncture sessions etc.  But all of this doesn’t fix M.E, it doesn’t make it any less debilitating; it’s a crutch not a cure.

4. There is no time limit with M.E.  There’s no window of recovery or limit to the illness.  M.E can affect some people for 6 months; it can affect some people for 6 years and it can affect some people their whole life.  I’ve been on the receiving end of questions like: “well, how long are you going to be like this?” and “shouldn’t you have recovered by now?”.  There is no ‘time’ I should feel ‘better’ by, M.E isn’t governed by a time limit, it affects everyone differently and for various lengths of time.  It’s important not to make someone with M.E feel like they haven’t ‘recovered’ quickly enough or put some made up time limit on their condition.  M.E has no expiration or ‘best before’ date, it’s not a condition that will miraculously disappear after a few months.  The body takes as long as it needs, M.E doesn’t just expire.

5. M.E makes planning and socialising very difficult.  M.E doesn’t notify me when it plans to have a good day or bad day; I can’t predict how I’m going to feel tomorrow, let alone next week.  As a result, I have to cancel a lot of my plans last minute and I hate it.  But it’s not out of laziness or rudeness.  I’m not cancelling because I’m being rude or can’t be bothered.  It’s worse with social plans, I hate cancelling on friends and family.  I hate to think that they believe I’m just being antisocial or blowing them off.  The reality is; I’ve woken up that day and the energy just isn’t there, the fatigue is too severe for me to wash, get dressed or even get out of bed.  I might not always make that clear because it’s embarrassing to admit and I’m ashamed to reveal that weakness.  Like I said in my first point, M.E affects multiple areas of the body; but it also affects multiple aspects of life and socialising is one of these.  It can have a huge impact on mental health, not being able to see friends or family, not being able to attend events or stick to dates is devastating.  I wish more people understood that cancelling isn’t me being rude or neglectful, it’s out of necessity because I have an unpredictable disease.  Just know that someone with M.E might cancel on you, but it doesn’t mean they don’t want to see you or aren’t interested. Support and friendship are extremely important to someone with M.E because it’s a very isolating illness.

6. While advice and suggestions on my M.E are appreciated when they come from a place of care and concern; judgements and criticisms of how I manage my illness are not appreciated.  I’m sure the majority of M.E sufferers have heard the typical: “you just need to get out more”, “you just need to do more exercise” and “you just need to try harder”.  I can’t begin to express how upsetting those types of comments are.  If you haven’t suffered with M.E or had any experience with the condition, then it’s hard to understand how it affects someone with M.E, so be considerate when making comments and giving advice.  There’s a difference between constructive suggestions and unhelpful criticism or judgements on how that person with M.E manages their illness. For example, telling me “You just need to get out and exercise more, get some fresh air” isn’t helpful to me because I’m not choosing not to do those things, my illness makes it extremely difficult.  All that comment does is make me feel lazy and ashamed and more frustrated with my illness.  Getting outside and being active is so beneficial for mental health when it comes to living with M.E but it’s not going to make me ‘better’ and suggesting it’s that easy just trivialises my suffering.  Instead try encouraging and supporting someone with M.E to do these things.  My Mum is a pro at this, when she realises I’ve been stuck inside a lot, she suggests we go somewhere for a short walk and makes it easier for me by bringing fluids, a camping chair and; just makes it a positive thing rather than just criticising me for not trying hard enough to get out.  Advising someone with M.E is about support and understanding, not just pointing things out and telling them to change how they cope.

7. Sleep doesn’t make any difference to someone with M.E.  A ‘good nights sleep’ is not going to miraculously cure my fatigue; because like I’ve said, fatigue isn’t just tiredness.  A very prominent symptom of M.E is unrefreshing sleep.  When the average person sleeps, their brain and body go through a sort of, restoration process.  The body recovers from the days activities when you go to sleep at night.  But with M.E this doesn’t happen.  I wake up just as exhausted as when I went to bed the night before.  People with M.E suffer with nonrestorative sleep which basically means, the body doesn’t recover normally during sleep, it doesn’t restore energy properly.  So, I can wake up with absolutely no energy even though I’ve not done anything yet, I don’t wake up feeling refreshed and ready for a new day.  It’s an ironic aspect of M.E that I sleep so much yet don’t feel any relief from sleeping.  Someone with M.E might have to sleep during the day for example, but that sleep won’t fix most of their symptoms.  For me, my mental and cognitive abilities begin to decline very quickly in the afternoon, I start to lag and struggle to stay awake or function so I will have a nap, and although it helps short term, physically it doesn’t change my symptoms. It doesn’t matter if I sleep too much or not enough, I still feel the same exhaustion. 

8. M.E can affect anyone, there is no criteria for this disease.  M.E can develop in a completely fit and healthy person, it doesn’t just affect people who may have other health issues. Some people can identify a trigger; for me it was glandular fever but in some people it just develops over a period of time with no clear cause. There is a misconception that M.E only develops in people who already have certain health problems but that’s not the case. M.E doesn’t just affect a certain type of person, it could develop in someone with previous illnesses or it could develop in someone who’s never been seriously ill and is in peak health.

9.  M.E is not a psychiatric disease!  M.E is too often put down to psychiatric issues and labelled as a mental illness.  This is false.  M.E is classified by the World Health Organisation as a neurological disease. This is because of the number of neurological symptoms an M.E sufferer experiences; autonomic nervous system dysfunction, cognitive dysfunction, hypothalamic dysfunction, sensory disturbance etc.  The misconception that M.E is a mental illness, or a psychiatric issue comes from very outdated opinions and ignorance.  This hasn’t been helped by the fact that cognitive behavioural therapy was flagged as a treatment option for M.E for so long.  While someone with M.E might also suffer with mental health problems, these are two different health conditions.  So many people who suffer with M.E still experience doubt that M.E is real because they are told: ‘it’s all in the mind’.  It’s a horrible misconception and can be really distressing for someone living with M.E; to be told their physical symptoms aren’t real.  For so long, people with a diagnosis of M.E were referred to psychiatrists and I still see it happen now, it’s just ignorance.  M.E is a physical, neurological disease and it’s not something that can be cured with psychological therapy or antidepressants.

10.  There’s no diagnostic test for M.E.  A lack of research in M.E in the past has meant, there isn’t a definitive marker associated with diagnosing M.E.  When I was going through the diagnosis process, a lot of people said: “can’t you just have a blood test to confirm it?” and it was frustrating.  It almost makes it seem like there’s no proof and people then wrongly label the M.E symptoms as psychological.  Diagnosing M.E is done by ruling out other conditions with the same symptoms, it’s a process of elimination.  As a result, it can take a long time to be diagnosed and this can lead to the misconception that it’s not a real, physical illness.  The truth is, there’s just not enough research to produce a definitive test for M.E, I hope that this is something that will change soon, as more research is undertaken.  But just because there is no particular blood test or scan that can identify M.E, doesn’t mean it isn’t a real, debilitating illness. 

Choices and Sacrifices when living with M.E: Driving.

Choices and Sacrifices when living with M.E: Driving.

by SleepyBookworm94 ♥ 1 Comment

With a chronic fatigue disorder like M.E there are personal choices which are made, and they are not always understood or accepted.  I’m 28 and I’ve not passed my driving test or made any great attempt to begin driving.  I did lessons when I was 17 like most teenagers, excited about the potential freedom.  I unfortunately had to cease having lessons when I was 18 and started to experience severe social anxiety.  Then at 21, I developed M.E and I’ve never considered restarting my driving lessons.  One of the biggest criticisms I face from family and other people, is my inability to drive.  I get very frustrated by it at times because, for me it’s not an option.  It’s not that I’m being lazy or can’t be bothered, it’s not because I like being chauffeured by family and friends.  It’s because I genuinely think I’d be an unsafe driver.  You see the signs all over the motorway: “Don’t drive tired, take a break”, well, I’m permanently tired.  The very nature of my illness is overwhelming fatigue and it’s not just a feeling of tiredness but a fatigue that effects my whole body and my mental and cognitive abilities. 

The thing about M.E is, it affects everyone on different levels.  I’m sure there are people with M.E who do drive and I have no issues with it, I’m envious.  But for me, it’s not worth the chance.  There are days that fatigue fogs my mind so much; I forget to eat.  There are times my brain is so foggy that it doesn’t perceive danger like normal, I can touch a boiling hot pan or baking tray without oven gloves because I’m too fatigued to take precautions.  Fatigue puts me at risk and often leaves me feeling like an idiot, because my brain processes things so slowly and it takes so much effort at times just to remember simple things.  So, do I think I’d be safe behind the wheel of a car? Absolutely not.  More importantly, I wouldn’t just be putting myself at risk but everyone else on the road.  It’s easy for me to laugh off comments like “When are you finally going to be an adult and drive yourself around?” or “when are you finally going to pass your test and get out there”.  As the eldest child in the family, it’s often pointed out that all my younger family members have learned to drive while I just sit around putting it off.  I laugh it off and make excuses like “I can’t afford it” or “It’s just not something I’m interested in” because it’s easier than admitting to people, that I don’t feel well enough physically and mentally to drive.  It’s hard.  Most people’s judgements fall on not understanding M.E, at not understanding it as more than a simple tired feeling.  People are ignorant of the countless effects M.E has on the body, it’s not just one symptom.  M.E affects my fatigue levels, my quality of sleep, my mental and cognitive abilities, my autonomic nervous system, my immune system, my pain levels, my ability to heal efficiently, my reflexes, my senses…It’s a multisystem disease, not just being tired. 

I’ve made a choice not to drive, if my condition improves or I get to a point where my fatigue isn’t so constant and overwhelming then I would consider it.  Who wouldn’t want that freedom to go anywhere?  But I choose to sacrifice that element of life because as a responsible person, I realise that I wouldn’t be a good driver.  I accept that my illness would make me a less alert and safe driver.  M.E means making choices and accepting certain limitations.  I make a similar choice when I decide I don’t want children, despite people telling me I’m 28 and my clock is ticking!  It’s not that I don’t want these things in the future or am discarding them forever; it’s just me accepting that right now I’m not in the position to do these things.  So, I’m grateful to my parents for driving me around whenever I need it and I’m grateful to my younger sister for letting me spoil my nieces and treat them like ‘surrogate children’.  But most of all, I’m grateful for those that accept my decisions and support them, those that understand it’s not easy to make these decisions and live with these limitations.  I choose to listen to my mind and body and let it guide me in what I can and can’t do, that’s how I live with M.E, by making the most of small joys and accepting that there are sacrifices when living with a chronic illness.  But it doesn’t mean I’m not living life; I’m just living it at my own pace.

2021 NICE Guidelines for M.E/CFS

2021 NICE Guidelines for M.E/CFS

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.

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

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

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

Brain Fog

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!

The guilt of cancelling plans.

The guilt of cancelling plans.

by SleepyBookworm94 ♥ 1 Comment

One of the things I find most difficult about living with a chronic illness is cancelling social engagements. Before chronic illness I was a very reliable person when it came to making plans and sticking to them.

Chronic illness has made me this unreliable person who might cancel plans an hour before or rearrange plans a dozen times. The most important thing I try to get across to friends and family is that I’m not trying to be difficult, I’m not cancelling because I can’t be bothered or don’t want to meet up. Sometimes I wait until an hour before to cancel because I’m praying and hoping my body will just cooperate and allow me to socialise and be a normal 26 year old.

I had plans to see my sister yesterday and she was going to do my nails and I was looking forward to it! I woke up exhausted as usual but hoping some energy would appear from anywhere. I got dressed, I ate breakfast and did normal things about the house. An hour before I was due to leave, my body just switched off. I hate that about M.E, one minute my body is coping and managing my fatigue and then it just switches off and all I can do is go to bed because I don’t have the energy to stand up for more than 5 minutes or even lift my own arms and head.

Then comes the difficult part which is letting the other person know I’m not well enough to meet. I try to get across how disappointed I am in myself but it always falls flat and feels like I’m making excuses. I feel like I’ve let my friends and family down and I hate it. I hate feeling like I’ve let someone down and it affects my mood so much and is one of the main triggers for my depression.

Eventually I just stop getting invited to socialise and it’s both understandable and devastating because I want to see my friends and family but my body betrays me. I see pictures online of all my friends meeting up and feel sad that I wasn’t invited but also I expect it because why bother inviting someone who is going to cancel 90% of the time. It’s a very isolating and lonely experience.

I wish people could experience just one day in my body, so they’d understand the strength and exertion that goes into just doing basic things like getting dressed and taking a bath. I wish people would understand that I don’t cancel because I’m a bad friend or because I can’t be bothered; but because my body is too exhausted to leave the house.

It’s inevitable that I feel guilt for being so unreliable and that guilt is like poison; it infects the brain and makes me feel worthless and hopeless. I can only hope that my friends and family take a minute to think about how cancelling plans affects me and how disappointing it is to be stuck in bed instead of being out, socialising ad enjoying myself.

Sleeping Beauty without the beauty.

Sleeping Beauty without the beauty.

by SleepyBookworm94 ♥ 0 Leave a Comment

This past week, the fatigue has been awful. I’d compare myself to sleeping beauty but there is nothing beautiful about me when I’m sleeping! I’ve been sleeping a good 8 hours at nights, waking up at about 9am and I’m in and out of sleep until around midday when hunger and thirst forces me to get up. Two hours later I’m aching and my head feels foggy and drowsy so I have to go back to bed. I sleep for around 4 more hours, get up to have my evening meal with family and then a couple hours later I’m back in bed watching tv until I fall asleep again.

It all adds up and I’m sleeping about 16 hours+ every day which is mind boggling to me because I didn’t know it was even possible to sleep that much. What’s worse is, I don’t feel better after sleeping; I am fatigued constantly and I am asleep within half an hour of hitting my pillow. I don’t know how I’m still sleeping when I’m sleeping that often.

I’ve got my final assignment to write for Uni and my head is so foggy and sleepy that I can’t concentrate for more that 10 minutes, my eyes start stinging and burning and I have to give up. I’m hoping it’s just a crash and if I rest when my body needs, I will start to feel a bit better eventually. I’m worried it might be a complete relapse to the beginning of my CFS/M.E when I was practically bed bound for months. The heat isn’t helping because that increases my fatigue anyway but the weather is supposed to cool down a bit over the weekend, I’ve never wished for rain more!

Also I apologise for any spelling, punctuation errors in this post, It’s the cotton wool in my brain!

How a nice day out becomes a nightmare.

How a nice day out becomes a nightmare.

by SleepyBookworm94 ♥ 0 Leave a Comment

With ME/CFS, a nice day out like I’ve had today with family makes me really happy but I know that once it’s all over, I’ll experience a night and day of punishment for my enjoyment.

I had a lovely day today with family, it didn’t involve a lot really, a trip out in the car to feed the ducks with my niece followed by an ice cream in a small village and a trip to a local farm shop. The whole even lasted a few hours and with the sun shining brightly and surrounded my family, it was a happy and enjoyable trip out. But the whole time I’m out, I have the knowledge in the back of my head that I’ll pay for my activity and the longer I’m out, the more I acknowledge this.

I’ve been home now for a few hours and the first feeling I get is of exhaustion and fatigue that forces me to sleep for a couple of hours. Then the pain sets in, I’ve got pain in all my lower joints and muscles; my legs ache terribly. Then my joints begin to stiffen and this is the point where my pain becomes a lot worse, my whole body feels like jelly because I’m extremely fatigued but my joints have seized up and whenever I move slightly, the pinch and stiffening in my hips and knees is awful. My lower back is always the centre of my pain and right now it feels like it’s cramping up and spasming on and off so I can’t just sit comfortably.

My body feels heavy, like its weighted down and my eyes are constantly drifting closed as my brain craves more sleep. It feels like I’m being punished for enjoying a day out, for enjoying activity and it’s a horrible feeling. I want to be active, I love being out in the countryside and experiencing the outdoors but my body doesn’t allow me to enjoy it fully because I know it won’t be enjoyable for long and the next day will be spent suffering the after effects.

Tonight will be the worst, I’ll have to take my Tramadol which leaves me feeling high and knocks me out the next day, but that’s what I need because the next day will feel worse. CFS/ME is a horrible illness, mainly because of the delayed reaction of the body when it’s been active, I may feel fine today and think I’ve escaped the punishment but the next day will always remind me that activity comes at a price. I’ll ache all over, feel like I’ve got the flu, I won’t want to eat or drink; all I’ll want to do is sleep and a lot of the time, all that can be done is to try and sleep through the pain and the fatigue.

It’s sad that a lovely day out has to turn into a horrible experience, I feel like I should regret my activity but I never do because the moments I can get out into the country and enjoy the fresh air, sun and smells is worth it. I know I might have to spend the next two days in my stuffy bedroom, in pain and wishing for it to end but I’ll never regret what made me feel that way.