Being a sufferer myself i now understand how hard it is to live with M.E/Chronic Fatigue syndrome. It is one of those illnesses that you really will never understand unless you have experienced it yourself. I thought i would share with you my 10 Top hates about living with CFS/M.E! Some funny, some frustrating.. And not in any particular order. I am sure you have your own so feel free to add them!
2. Even the smallest noises can frustrate me to the point of tears.. If someone had said to me before i was ill that the television being a little too loud, or someone speaking a little too loud or dropping a heavy item could make me feel as though i wanted to cry i would have laughed my head off! Unfortunately that is the case! My ears are now so sensitive to loud or unexpected noises and it seems everything is ten times louder than it actually is.
3. Most painkillers do not relieve the tension headaches/migraines. I have always been one of those people that if i have a headache or a bodily pain i reach for the painkillers, quite simply because they work and provide fast relief. This is now not the case! The awful migraine type headaches i experience on a daily basis are rarely relieved by even the strongest painkillers.. Paracetamol.. Co-codamol.. Ibruprofen.. Even those special tension headache tablets.. They will either provide mild relief or work for an hour and then the headache comes back!
4. A lot of people do not understand how exhausted i am. I have always been a sociable person and before i got really ill i enjoyed going out with my friends and socialising.. However now i often have to decline offers of social events and even 'catch-up's for i just don't have the energy to do this. Even a two hour 'catch up' could make me even worse. But what is more frustrating is the amount of people who just don't seem to understand how ill you are.. "Oh it's only two hours" or "Have an early night and you'll be fine".. What people need to understand more about M.E sufferers is that no amount of sleep or rest is going to magically make us better for a day, and pushing ourselves too far could end up making us worse in the long run.
5. Having to explain to people what M.E or Chronic Fatigue Syndrome is. The few people who i have told about being ill, most of them say straight away 'What's that?!' and having to explain over and over again what it is. I appreciate it is not their fault that they don't know what it is but M.E/CFS is a disease that is as debilitating as most other serious medical conditions in the world, and the fact is that people can, and have died from it. More awareness needs to be raised on this matter!
6. People saying "You look well".. It may be a compliment but the fact is that most M.E/CFS sufferers do 'look well' - however inside they are profoundly ill and you just think 'If only you knew how i FEEL'!
7. Fuzzy/groggy head moments.. These can be ever so frustrating, but also rather funny at times too. Like the time i went to pour the kettle onto my dinner, or brush my teeth with the toothbrush i use for exfoliating my lips.. (Ew!!) Annoying on a daily basis but provides light laughter in times like this!
8. Mixing words up.. So many times i have been half way through a conversation and then as quick as lightning completely forgotten what i was going to say! Or times when i completely get my words confuddled.. Sometimes you wouldn't think i was 24, but 4 haha! However i know this is just part of the illness, as frustrating and embarassing as it is!!
9. People asking how you feel or if you are feeling better.. Obviously you don't always want everyone to know about your illness for fear of having to explain it all over again or people feeling sorry for you, but sometimes people know you are not well but do not know the nature of it. The amount of times people hav asked me 'Are you feeling better now' and i have just replied 'yes thanks' as i can't be bothered to explain it all is unbelievable! Sometimes it is just better to not say anything,
10. Fatigued constantly.. But often you can't sleep! I am sure every sufferer straight away knows what i am taling about here! You spend all day/evening feeling so fatigued you can barely do anything, and all day your eyes are just begging to be closed.. But when you hit the sack in the evening.. Sleep is so hard to come by!! The headache, the grogginess, night sweats and the general feeling of being 'unwell' make it so hard to relax enough to sleep, it's like a catch 22. The way i deal with this now is to literally snatch sleep when i can.. Whether that be 12pm.. 4pm.. or 9pm.. If it means getting some of what is so important to us CFS sufferers then so be it!
No comments:
Post a Comment