Tag: Illness

So it’s just a fatigue thing?

So it’s just a fatigue thing?

by SleepyBookworm94 ♥ 1 Comment

The title of this post is the reaction I often get when I tell people I have M.E, probably because of its other name ‘Chronic Fatigue Syndrome (CFS).  I hate that such a complex and multifaceted illness is always reduced to this one aspect.  It almost feels like I’m being belittled when someone refers to it as; just a ‘fatigue disorder’ and it’s so frustrating because M.E or CFS isn’t just one symptom.

It’s hard to change people’s opinions and the stigma that surrounds this illness.  A lot of people associate fatigue with tiredness and assume I just need to sleep more or take a nap.  I know a lot of people with M.E hear the line “I get tired too” as if we’re complaining about nothing.  Tiredness can be relieved by sleeping, it’s short term.  Fatigue is not relieved by sleeping or resting, it’s just there all the time.  It’s a bone deep exhaustion, a feeling of constantly swimming against the current, a complete lack of energy, a heaviness that doesn’t just lighten after resting.  Fatigue isn’t tiredness, it’s a much deeper and complex issue and it’s only one symptom that comes with having M.E.

A lot of people misunderstand this illness and don’t understand the span and range that it has over our bodies.  So I thought it would be useful to list the symptoms I experience with M.E:

  • Fatigue
  • Post exertional malaise
  • Muscle weakness
  • Sore eyes after looking at a computer or reading
  • Cognitive dysfunction (brain fog, trouble finding words, a difficulty in following conversations or communicating, trouble concentrating)
  • Nonrestorative sleep
  • Widespread body pain (muscle pain, joint pain, headaches, nerve pain)
  • Allodynia (Extreme sensitivity to touch or certain types of clothing)
  • Sensitivity to sound
  • Orthostatic intolerance
  • Poor temperature regulation
  • Flu-like symptoms (headaches, fever, achiness, enlarged and tender glands, sore throat)
  • Inappropriate sinus tachycardia
  • Cold hands and feet
  • Problems with balance and dizziness
  • Restless legs
  • Exercise intolerance
  • Hyperhidrosis

I experience all of these symptoms on a daily basis which is why I become upset and frustrated when people just refer to M.E as a fatigue disorder.  My whole life and my whole body is affected by M.E and it takes a lot of management to live with.  I wish more people knew this, I wish people didn’t hear Myalgic Encephalomyelitis (M.E)  or Chronic Fatigue Syndrome (CFS) and only recognise the ‘fatigue’ aspect.  It’s so disappointing and disheartening to see it referred to this way because it minimises the extent of the illness and plays down the impact it has on sufferers.

I’ll add a link here to a piece of literature on the M.E Association website, which lists all the symptoms associated with M.E, there are a few more listed here that I haven’t mentioned because I don’t suffer with them, but it may be useful to others:

A-Z-OF-SYMPTOM-MANAGEMENT-FEBRUARY-2020.pdf (meassociation.org.uk)

M.E and Winter Illnesses

M.E and Winter Illnesses

by SleepyBookworm94 ♥ 1 Comment

If the covid pandemic taught us anything, it’s how dangerous germs can be; how easily they can be passed on and left on surfaces and how quickly they can spread.  I hoped that this would be a fact that stayed with people after the pandemic and that, people would think more carefully about how they interact with the world when fighting a virus.  Unfortunately I think it’s something that the majority of society has pushed to the back of their mind, ‘now the pandemic is over and done with, what’s the big deal?’  Unfortunately though, covid isn’t the only virus out there that can make people really unwell and there are still people out there with compromised immune systems and those struggling with a chronic illness like I am. 

Every year, that inevitable time of year comes when everyone seems to fall ill with a cold or similar winter virus and I dread it.  I love autumn and winter but winter illnesses can make these seasons risky for me.  My M.E was triggered by a virus 8 years ago, which highlights the fact that although viral illnesses may be short term; they can have real long term consequences on the body.  I used to be a fairly healthy person, I’d catch the common cold and get over it quickly and life would go on regardless.  I miss my body’s ability to fight off viruses so effortlessly and quickly.  Now, a simple cold can be a real detriment to my health, it can cause a full relapse of my chronic illness, it can undo all the work I’ve done to manage my M.E.  It doesn’t matter how much progress I’ve made with my illness because a simple virus can eradicate it all and leave me back at square one, possibly bedbound and unable to live my life properly.

One of the things during the pandemic which I didn’t find novel was the question “any fevers, coughs or runny noses?” when trying to book an appointment somewhere. I’ve asked family and friends a similar question every winter since I became ill with M.E because when living with a chronic illness that makes fighting off viruses and other illness difficult; it’s all about minimising the risk of contracting anything.  I’m sure some family and friends have thought me paranoid or dramatic but I have to do what I can to avoid winter viruses.  I know it’s pretty inevitable that I’ll catch something over winter and more than once, that’s life.  But, I get really frustrated when someone who is evidently unwell takes no precautions to protect other people who may be less overall healthy than they are.  I’m not sure when people became so selfish, where did a thought for others stop entering people’s minds?  Covid should have taught us how easily it is to spread a virus, how badly it can impact some people.  It’s a lesson that I hoped would stay with more people, that would encourage people to think about others, to be more aware of germs and the ways illnesses are spread. 

My blog post today is motivated by an experience at my local supermarket last week, an experience which really annoyed me and made me want to just hibernate away all winter.  Within minutes of walking into the shop I witnessed a woman blowing her nose and coughing.  A fairly normal sight for the colder months but this woman was making no effort to cough into her hands, or sneeze into a tissue.  Instead she was picking up food, coughing all over it then placing it back on the shelf.  She did it dozens of times and she didn’t even seem aware of the fact she was spreading hundreds or thousands of germs over these food items then just putting them back for others to potentially touch. It’s that ignorance that frustrates me because there was clearly no awareness of what she was doing and therefore no attempt to minimise the risk to others. The worrying thing was, I saw a few people coughing and sneezing without an attempt to cover their mouth or nose, there were a few customers who seemed to have a cold or similar illness but not be worried about spreading it on to others instore.  I completely understand that the majority of people have to get on with life when they have a cold or virus, if you’ve got to go out to a public place then you’re entitled to do that.  I just don’t understand why it’s so difficult to carry a mask if you know you are unwell and it may be contagious, we know how important mask wearing was in preventing the spread of covid.  It’s a simple thing to just put a mask on and protect others, it’s a simple way to limit the amount of germs you are spreading when ill.  Even coughing into your hands or sneezing into a tissue is preferred over freely coughing and sneezing into the air; that’s something I was taught when I was a child.  My Mum manages a shop and it’s shocking how many customers come in and when asked how they are, reply; “Oh I’ve got this horrible virus, I’ve been really ill” or variants of it.  It’s scary to me, how many people have no issue going out and potentially passing on their viral illness to someone vulnerable.  I’m not saying that someone with a virus should lock themselves away, I’m saying that the pandemic taught us so many ways of limiting the spread of germs and everyone seems to have completely forgotten them.  Social distancing, mask wearing, carrying sanitizer, coughing and sneezing into a tissue and disposing of it afterwards.  All these things are simple but people just aren’t doing them.

I don’t think healthy people understand how scary a simple virus is to someone with a chronic illness or poor immune system.  Chronic illnesses like M.E are about daily management, struggling with chronic symptoms that affect every aspect of life.  I have to fight so hard to be a relatively normal, functional being and manage all my symptoms and limit the chance of flaring them up.  So adding a virus to that struggle makes management almost impossible and I’m often left bedbound for weeks, relying on other people to care for me.  I’m never sure how badly a virus will effect me afterwards; will I return to my previous level of functionality? or will I backslide and be unable to do things I’d previously started to manage.  Will it cause my M.E to completely relapse and revert to when I was at my worst, how long will this last? A simple winter virus that most people will recover from in a week, or not even know they have; has a huge impact on my life and health.  I just wish more people understood that, I wish more people considered this when going out with a viral illness that could be passed on to someone more vulnerable. 

It’s one of the reasons that people with severe chronic illness feel so isolated; because to keep our health stable, we have to isolate ourselves.  If people can’t take simple measures to restrict how they spread germs and viral illnesses then what choice do we have; but to avoid social contact. 

I guess my advice for chronic illness sufferers this winter is; it’s okay to be selfish if you’re doing it to protect yourself.  By this, I mean, don’t be afraid to ask people you’re meeting with if they have any cold or viral symptoms, don’t be afraid to cancel social appointments if you believe someone there may have a virus.  Don’t be afraid to tell you’re loved ones how detrimental a simple illness like the common cold can be to you.  People may be judgemental and say you’re a hypochondriac, but the people who genuinely care about you will understand and want to keep you healthy this winter.  More importantly, if you’ve got to go out into public places then do what you can to protect yourself; carry sanitizer, carry a mask, distance yourself from people you see coughing or sneezing, wash your hands frequently and try to limit how many public surfaces you touch. Be safe and do what you can to prevent the spread of winter illnesses, because a lot of people are ignorant of the impact these simple illnesses can have on someone with a low immune system or a chronic illness.

(Just a note to say, excuse any spelling or grammatical errors in this post. I am actually currently suffering with a cold and the fatigue and brain fog are currently awful.)

M.E and Medical Test Results

M.E and Medical Test Results

by SleepyBookworm94 ♥ 0 Leave a Comment

M.E is a very under researched neurological disease; because there is no test to diagnose M.E, it’s a condition that’s diagnosed by ruling out everything else with matching symptoms.  I’ve undergone countless medical test; ultrasounds, MRI scans, blood tests, urine tests, ECGs and so on.  Most of these were done when I first became ill with M.E and were used to rule out other serious conditions with similar symptoms.

But medical tests for someone with M.E can produce a lot of mixed feelings and anguish.  I found all these tests to be emotionally exhausting, because they always came back normal despite all my physical symptoms.  Now, tests coming back normal is a good thing, I wouldn’t wish for them to show something terrible or life threatening…but as a person suffering with very debilitating symptoms, to have no answers is frustrating and so disappointing.  Suffering with a neurological disease that is very under researched and carries so much negative stigma is difficult; and deep down I’ve always hoped that some test would give me an answer to why I experience these debilitating symptoms.  Every test that I have done, I’m hoping for some clue or some reason for this illness.  I’m hoping it’s something less else, something that can be easily fixed or cured. 

It’s hard to explain to other people, you always get the “well it’s good your tests didn’t show anything” and “why would you want your test results to show something wrong?”.  It’s a complex emotional feeling because there is relief when tests come back normal, I don’t want them to find something terrible!  But to have no evidence of anything, to have no clue or indication of what’s causing such devastating symptoms is disheartening.  It makes me question and doubt myself and my symptoms and it gives other people a reason to doubt and question me.  That’s the worst part, I have no evidence to give people, I have no proof that my body is physically unwell.  The only thing I have is the daily and constant symptoms that plague my life, unfortunately this isn’t enough for some people. 

I think normal test results in people with M.E make it easy for doctors to put it all down to a mental illness.  I suffered with major depression for years before I developed M.E and there was always a question of my symptoms being a progression of that mental illness, rather than a physical neurological disease.  When a doctor says “your test results all show you’re a physically fit and healthy person” it’s hard not to think it’s all in your head.  I was diagnosed by an amazing GP who has given me so much support.  But I think diagnosing me with M.E was hard for her because as a doctor she wanted to help me, she wanted to give me answers and solutions.  She always commented that she ‘wished she could just cure me and make me better’ and as a doctor, I imagine it’s hard when they are faced with an illness that has no cure or easy fix.  I can’t fault my GP in dealing with my M.E; despite it being a complex illness, she never gave up trying to find ways of helping me live life to the full.  But I have come across doctors who, when faced with normal test results and no physical proof, just place all the blame on a mental illness, or being unmotivated and lazy.  In some ways, they create mental illness in those suffering with M.E by discarding patients’ feelings and experiences, by being ignorant and inconsiderate. 

I guess it’s one of the reasons why M.E is labelled as an invisible illness, because often test results do come back normal; with no clues or indicators of physical illness. But my advice to anyone doubting this illness as physical, or anyone suffering with M.E who doubts themselves is; talk to someone with M.E, watch how they live their life.  Watch an M.E sufferer struggle to fight through their fatigue, watch them try to cope with chronic pain; watch them struggle to do the most basic things, like wash, get dressed or make a meal.  Watch them lose all their friends because they don’t have the energy to socialise, watch them as they lie bedbound, watching life pass them by through a window. Then tell me this illness isn’t physical.  It might be labelled an invisible illness but M.E is very visible to those who actually look. 

My Puppy and M.E

My Puppy and M.E

by SleepyBookworm94 ♥ 1 Comment

All my life I have lived with pets. I grew up with dogs, hamsters, birds, a bunny and ferrets. When I was in my teens I got into keeping rats and this has been a passion of mine ever since. Then I adopted a cat and completed my pet family. My pets are a huge part of my life and they’ve made coping with M.E easier. They provide constant companionship and this is appreciated when I’m housebound for long periods of time. My mental health and motivation is made stronger with them in my life.

This summer I decided I wanted to add a puppy to my life. It was something I had to think on; my M.E fluctuates and there are days I can barely get out of bed. But I’m in a stronger place now than a few years ago, I know better how to pace myself and when to stop pushing myself. I’ve learned to listen to my body more and rest when needed. I decided a puppy would be a new challenge…and it has been in ways I never even thought about!

A few months ago I was approached by a rescue centre who had a 15 week old Maltese puppy. A toy breed was not something I originally wanted, but when I heard this puppy’s story I was committed. This 15 week old pup had been bred in a puppy farm abroad, separated from his mother at 4 weeks; concealed in a lorry with his siblings and smuggled all the way from Romania to the UK border where authorities discovered him. Some of his siblings had died on the journey but he and 2 other puppies had survived. I’m a huge animal advocate and there is no way I could not give this little puppy a better life. So I adopted him after his quarantine, named him Gizmo and it has been a rewarding but challenging experience so far!

I knew a puppy would mean getting up early to let him out but I never thought it would be such a difficult job for someone with M.E. I take regular medication at night before bed to manage pain as it often stops me sleeping. My pain has always been worse at night and restless legs have been a huge problem for me. Taking medication before bed allows me to sleep easier and with less pain and discomfort. But, it makes early mornings extremely difficult. The medication makes me very groggy when waking up, my whole body feels like its been weighed down and it’s a struggle to get up out of bed quickly. Normally this isn’t so much of a problem because I will just lie in bed until the feeling passes and then I can slowly get out of bed. With M.E it’s important to do things gradually and getting up in the morning is no different. I have to do it in steps, get up and wash, take a break, get dressed, take a break, brush hair and teeth, take a break etc. A puppy with a small bladder has no time for this. Suddenly waking with an alarm, getting up and immediately going outside was a shock to the system. The fact it’s winter makes it ten times worse because one of the worst symptoms of my M.E is not being able to regulate body temperature so I’d go out into the freezing cold but it wouldn’t hit me until later and then my bones would be stiff and sore and I’d be cold despite being inside again. The sudden getting out of bed without waking fully made my fatigue a lot worse. My fatigue is made worse by an alarm going off because I’m not waking naturally; my body isn’t ready to wake up, I’m pushing it to get up and with M.E this has consequences. I managed for a couple of weeks but it quickly became apparent that it was having a negative affect on my energy and fatigue levels. It was really frustrating because I felt like I’d failed at the first hurdle. Luckily my parents are really understanding of my M.E; they are my carers and they always come up with compromises that allow me to handle my symptoms but keep a bit of independence and responsibility. So instead, they began letting Gizmo out in the morning, then he’d come back and sleep with me until I woke naturally. It made things a lot easier, because I was rested when I woke up instead of waking up before I was fully rested.

The early morning was the most challenging part of having Gizmo, I didnt realise how important it was for me to sleep until I was rested enough to wake up naturally. Sleep is of such a low quality for M.E sufferers that we need more than the average person. Getting up with an alarm and getting straight out of bed is difficult with M.E, it isn’t just a case of being lazy or lacking motivation. I was hugely motivated to get up and let Gizmo out, I experienced so much frustration and disappointment when I realised I couldn’t manage that. But M.E doesn’t care about how much motivation you have to do something, if the body physically cant cope then you have to accept it; that’s why it’s such a devastating illness. I’ve experienced another issue I never expected when adopting Gizmo. Because he’s such a small breed of dog, Gizmo frequently needs picking up. It took time for him to master going up and down stairs, he can’t get on my bed or the sofa without being picked up, there are times he can’t get over something and like any small animal, he needs help. After a couple of weeks with Gizmo, I started experiencing awful back pain, a constant ache and spasms in my lower back that left me gritting my teeth in pain. Back pain was one of my worst symptoms when I first developed M.E, it took years to learn to manage that pain. It’s a symptom that improved when I started to pace myself, and avoid jobs that involved repeatedly bending; hoovering, lifting heavy things etc. It was something I never considered when adopting a puppy. It took me a while to realise my worsening back pain was due to the repeated motion of bending to pick Gizmo up. He’s a tiny dog, which means he needs picking up a lot! I’ve managed to find ways around this which has gotten my back pain back to normal levels. I make sure when I pick him up, I don’t bend but squat so I’m using my knees rather than my back. I’ve made steps, so he can get on and off the bed and sofa without needing me to lift him.

Since adopting Gizmo, my fatigue levels have been affected. I’m having to get up and move about more, I’m having to remember to feed him three times a day and put time into training him. But over the weeks it’s gotten easier. Animals are amazing, they are so much smarter than we give them credit for. I’m shocked at how Gizmo has adapted to my illness. When it’s time for bed, he goes into his bed and sleeps through the night until my parents get him up and let him out. He then comes back to bed and sleeps until I’m ready to wake up, it’s like he knows I need that extra time to sleep. I often need to sleep for a few hours during the day because of my fatigue and he’s adapted to his, he comes to bed with me and sleeps at the same time. He’s learned that when I’m awake, it’s playtime and it’s time to be active and hyper but when we go to my bedroom, it’s rest time. If I’m having a particularly bad day where I need to stay in bed then he knows that he has to spend more of the day with my parents. Over the weeks, we’ve established a routine and slowly my fatigue levels are becoming more stable. It’s been harder than I expected, but I wouldn’t change it. It’s tested me and in a way, made me more aware of my limits and what factors can trigger my symptoms to flare up. It’s been a hugely rewarding experience despite the obstacles though, I’ve got a new little friend. Gizmo had a rough start to life and I can’t wait to give him a life filled with love and attention. I’ve already watched his confidence and his personality grow, and I know he’s going to make a great little companion. He’s already boosted my mental health enormously, and it makes living with chronic illness that little less lonely.

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

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

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.

When did people become so judgemental?

When did people become so judgemental?

by SleepyBookworm94 ♥ 0 Leave a Comment

Is it me or have people become more judgemental about illness and disability? When I was young, I was always taught that people are all different and some have disabilities or illness, but to treat those people with the same respect.

It seems there has been a lot of headway made in making invisible illnesses more accepted lately, like the new blue badge scheme but it doesn’t seem to change people’s opinions.

I don’t work, I used to work but with my CFS/Fibromyalgia it isn’t possible right now. When people ask and I explain this, they nod and appear to be understanding but then comes the comments;

“You’re young, you should be out working”

“You don’t look ill or disabled”

“You could at least work part time”

It’s these comments that get me down because people seem to think I choose not to work. I don’t choose to live with a limited income, struggling to afford anything for myself, I don’t choose to lie in bed at home, in pain and wishing I could just go out and work like a normal person my age. Some days, all I manage to do is have a bath and then I can’t physically do any more so how am I going to go out and work everyday?

If that’s not bad enough, applying for benefits is the most shameful and embarrassing process I’ve ever been through. When I get assessed, it’s unfairly because physically I look fine. I have to justify my illness, to then be told I got dressed for the assessment so am able enough to work! It’s the pettiest and most depressing system. I don’t choose to go through that, I have no choice because I cannot manage to work but I need to eat.

Older people judge how much medication I take and say I shouldn’t be taking that much medication at my age; like because I’m 25, I can’t suffer with a long term illness. I bought a fold up walking stick this week so I can have some extra support when I go out and have to walk longer distances than the usual. But I am so nervous about using it because I’m afraid people will stare, I’m afraid people will judge me. It shouldn’t be that way. I shouldn’t be embarrassed to do what I need to do to manage my illness.

It seems that people can be a lot meaner now, and that cruel words and comments are muttered too often. Deep down I know I shouldn’t be ashamed of myself or my illness but when I constantly hear judgemental comments and receive judgemental looks, it’s hard to remember that.

My anxiety makes me a bi*ch

My anxiety makes me a bi*ch

by SleepyBookworm94 ♥ 2 Comments

Very often, I’m encouraged and pushed to go out to social places by my family and friends. These social places trigger my anxiety and as a result, I become an irritable, snappy, moody individual who takes it out on her family/friends.

Going shopping is something most women love to do but I hate it, I’m an online shopper all the way. But occasionally I go out with family to shopping centres and spend some time shopping. It should be enjoyable and rewarding but it’s a nightmare for both me and whoever accompanies me because my anxiety makes me crazy. My anxiety gets triggered by the unfamiliar place and unfamiliar people and I attempt to soothe myself however I can, and my family try to make it easier and less stressful for me which I am grateful for. But after an hour, I can’t control my anxiety anymore and I want to go home so my personality withdraws, I become quiet and fidgety. I begin to try and rush my family through things and then I begin to get irritated with them. I love my family and I would never take my mood out on them normally but my anxiety overrules that part of my personality and I suddenly find everyone around me, irritating!

I see my family enjoying being out and it annoys me because I want to enjoy it but my anxiety is taking over and I just want to go home so I start to snap at my family for small things, I get moody and refuse to get involved in conversation. I say horrible things and become like a moody teenager who hasn’t got their way.

That person is not who I am, I hate that version of me but in that situation, my anxiety rules and somewhere in my twisted brain, I believe that being snappy and difficult will get me out of the situation faster. In that situation, everything irritates me and I’m annoyed and scared so I turn into a bitch.

My family are used to this version of me by now and they know it’s a sign that I’m reaching my limit and need to get out of the situation but I feel bad for them because they take my snapping and moody comments without judgement and they change their own plans to accommodate me. I take my anxiety out on my family and they just try to help. Irritability is one of the main symptoms I feel when I’m anxious, it’s an overwhelming feeling and it makes me a horrible person to be around. I wish I could control it better and keep it inside so no one else has to deal with it but in that bubble of anxiety, it controls me.

Just another symptom of anxiety that makes my social life hell!

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.