Thursday, 17 May 2018
Effects of ME
In my last blog I wrote about ME & how I wish people would try to understand it better. To understand you must be educated so I’ve decided to make a list of my ME symptoms & some of the feelings I have experienced during this journey. In hope to educate anyone who might read this. but I would like to point out everyone is different & these are just the symptoms & feelings I have experienced or still do
♡Light & noise sensitivity: This is pretty self explanatory, I'm talking about any light or noise especially very bright lights & really loud noises. Neither one is as bad now but in order to cope with this I do sometimes have to use ear defenders, look away or close my eyes to avoid discomfort. This also means I can't go to concerts or anything of the sort like most people my age do.
♡To much noise: On the subject of noise I'm also not very good with more than one noise at once so people talking whilst the TV is on really bugs me or any multiple noises at a time really stress me out
♡Pain: the online definition of chronic pain is any pain that last longer than 3 months that can become progressively worse & occur daily.
I'm in constant pain 24/7 some days are worse than others,somtimes I can be up all night with it & its still as bad during the day, I do things on a pain level that most people wouldn't dare get out of bed on but I cant lie in bed all day feeling sorry for myself, I have to make myself do things or I'll feel worse
Its also not just one pain at once but lots of pains all feeling different in completely different parts of my body
There isn't a definite cure for pain, pain killers work short term but I’ve also found that Heat & Ice work really well for me as well as various holistic treatments & oxygen therapy that I have once a week.
♡Fatigue: Again for me this isn't just tiredness its pure exhaustion I can spend hours or days asleep but I don't wake up feeling refreshed I wake up feeling worse than I did before. its also makes you completely weary & out of it as if you have a hangover.
♡Friendships & Loneliness: Not being able to get out & seeing the same people day in day out makes you feel really trapped people also stop inviting you to stuff because you always cancel.
Its not my fault I always cancel on people, I'd like them to still invite me so I feel thought of. I get very lonely sometimes no one really gets how isolating illness can be.
So many friends forget about you & move on it makes no sense to me because I'm constantly making sure everyone is okay so I never understand why it does not also work the other way.
♡School/Education: Ive spoken about this alot but T.K were absolutely dreadful with they way they delt with me. they just gave up & its clearly had a massive effect on me because I'm constantly blogging & talking about it. I also have school related dreams alot so that’s obviously connected.
One of the biggest things I feel towards my education is that everyone no matter what ability or illness deserves to be educated & not given up on & also that not having completed my education makes me less worthy than others even though it really doesn’t. I also feel stupid because of this alot of the time, it also means that if I do ever want to do higher education I will have to do my GCSES older than 16 which is kinda weird to think about doing at a older age than normal.
I also know alot of people have had similar experiences with school so its always something to be wary of
♡Migraines: Migraines usually start in one part of your head then spread its as if there is a tiny person is inside your head setting it on fire.
♡Boredom: I have always got really bored even when I was well, Ive never been able to focus on one thing. I have to have multiple things going so having nothing going on really gets to me. I can't sit & watch TV all day it just irritates me after a while.
my need to learn has meant I’ve spent most of the time at home on the sofa watching shows on the law or fines do I now know alot of information that I don't really need to.
I also went through a faze of making alot of stuff up to entertain myself but you need to be really careful not to get to carried away & I did so that caused me many more problems.
♡Seeing others do stuff I cant: This is a massive one, in a way it comes into friendships but seeing other people be out having fun & living life sometimes really upsets me because I know I can't do any if the things they are doing. its really hard to watch people live life when you are stuck in one place in horrendous amounts of pain with nothing ever changing.
As I come to the end of my gigantic list
Another really obvious thing that needs to be mentioned is being allowed to sleep & not get woken it sounds so obvious but if I get woken up whilst fast asleep there is little chance I will fall back to sleep because the pain will probably kick in & make everything so much worse for me to handle. Then there’s little to no chance of me sleeping at all.
I hope this is helpful to people, I know there’s other things people face but these are just the ones I have had the most difficulty with.
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