This is something I've wanted to talk about/post on my blog for a long while now but I've always put off writing it because I find it quite hard trying to explain M.E and how it makes you feel. The reason I wanted to post this is because I think M.E needs more awareness and hopefully me writing about my experience and how people with M.E suffer will help other others to understand.
What is M.E?
Not a lot of people have heard of this illness or if they have they aren't fully aware of just how much a person can suffer but I can't blame them as it is quite a complex illness that sometimes even I struggle to understand. M.E (myalgic encephalomyelitis) also known as CFS (Chronic fatigue syndrome) is a chronic illness, chronic illness means that it is persistent! I prefer to call it M.E, usually if you say you have Chronic Fatigue Syndrome most people automatically assume that it's a fancy name for tiredness.
What are the symptoms?
There are SO many symptoms that you can get with M.E, not every sufferer will get them all and symptoms can vary between the individual person and how severely they are effected. People who are mildly effected can usually go to work but will struggle with social activities and will have to take days off. Moderately effected people have to quit work and spend a great amount of time in bed and people who are severely effected are bed bound and struggle to carry even simple tasks such as brushing their teeth. The main symptoms are:
Fatigue (main symptom)
I just want to go in to more detail about this symptom to clarify the difference between fatigue normal, healthy people get if they've over worked themselves and the fatigue people with M.E experience. This type of fatigue is both physically and mentally exhausting and is a different type of tiredness from what you'd have experienced before and is hugely overwhelming. Also any type of exercise (when I say exercise I mean just leaving the house or even just carrying out small tasks such as having a shower) causes something called 'Post-Exertional malaise' or 'payback' which is where the fatigue gets worse the day after you've done an activity. When I've suffered this in the past Ive had that little energy that I could barely talk, eat, move or even just watch television. You have no energy at all so all you can basically do is lye there. Also the tiredness doesn't go away after sleep or rest, it's constant. Other symptoms include:
Muscular pain, joint pain and severe headaches
Poor short term memory and concentration, and difficulty organising thoughts and finding the right words ('brain fog')
Painful and swollen glands
Stomach pain and other problems similar to 'irritable bowel syndrome' (nausea, bloating etc)
Sleeping problems such as insomnia and feeling that sleep is not refreshing
Sensitivity or intolerance to light, loud noise, alcohol and certain food
Psychological problems such as depression, irritability and panic attacks
Dizziness and balance problems
Difficulty controlling body temperature
As I mentioned before these are just the main symptoms, I'd be here all day if I had to list them all.
How do you feel if you have M.E?
M.E sort of makes you feel like you have a really bad case of the flu. Anybody that has had the flu or another illness such as glandular fever will understand when I say that you have absolutely no energy at all. Your body aches, your throat is sore and even just trying to climb the stairs feels like you're climbing Mount Everest. You feel dizzy, everything around you feels as though it's spinning and your heart starts racing and your heads pounding. Your body also flashes from hot to cold, one minute you're freezing cold and the next you're so hot you're almost passing out. Imagine you're on holiday abroad and it's 40 degrees and you're in the blazing sun, it's that kind of hot!
This won't happen everyday but the majority of the time it will. People with M.E have 'bad' and 'good' days, when I say 'good' days I don't mean you feel 100% well, you still feel ill but the symptoms won't be as severe that day or you won't feel as fatigued. A bad day for someone with M.E will be spent in bed all day just getting up when needed for a drink etc. 'Good' days will maybe mean going out for a couple of hours for a meal or something that doesn't require too much energy, whilst you're out you have to keep taking breaks and sitting down as you don't have the energy to walk far!
I think the reason this illness is often misunderstood is because one day a sufferer will complain they are really unwell and then the next they could be out looking perfectly fine so people get confused and think the person is faking how bad they can feel. Also M.E is an invisible illness so this means that there is no visible signs that, that person is unwell. When you've got your make-up on, your hairs done and your in nice clothes you look just like any other healthy person. If somebody says they are unwell but doesn't look it never judge them as they could suffer from an invisible illness and actuallybe really unwell even if they don't look it.
Pictures also play a big role in this too, a sufferer could be done up with a face full of make-up out and about and post this on their social media accounts and people think 'I thought they was ill' truth is a lot of the time that person has suffered a lot whilst out and isn't as well as they look. I've had pictures took of me out for a meal for instance and I was only out for about 2 hours and beforehand I was in tears because I felt so ill but wanted to still go out as I didn't want to let my friends down. The picture doesn't show this side though!
|You'd never have thought I felt really unwell that night would you? It looks like I'm going out on a night out- see how much pictures can lie!|
I hope that everybody now understands a little more about ME, if you have any questions then feel free to ask me, I'd be happy to answer them! Thanks for taking the time to read this really important post, Lauren x