Catherine has joined us today, to talk about her Hidden Illness, M.E. The message, as always is; just because you can't see it, that doesn't mean it isn't causing massive problems for the sufferer. Read on to find out more and perhaps help someone you know with this horrible condition.
Ok where to start? I'll start with telling you what it is I have got and that is ME or to use it's technical name Myalgic Encephalomylitis. Some people also know it by the name CFS aka Chronic Fatigue Syndrome.
I was first struck down by this illness at the age of 16. I went to my first day of college and got a virus which I didn't recover from for the next 7 years. I had it at the extreme end back then and I was virtually bedbound and housebound for that time, not leaving the house once and spending most of my time sleeping. In turn this lead to me having another invisible illness, anxiety and panic attacks. The last 3 years indoors was down to me developing agorophobia because of being ill and stuck indoors so long. I started going back out at 23 after 7 years of not seeing the outside world or anyone outside of my immediate family. It took me a long time just to be able to be ok going out and then going out alone and inside I was a nervous, anxious, terrified wreck. But I pushed and fought, and I mean I put up a hell of a fight to try and get my life back and I did to some extent. I started a volunteer job for the British Heart Foundation which I absolutely loved. I did this for 18 months until it all started to come tumbling down again.
Last year I started to feel very unwell, but struggled on until finally, in the July, I went to my GP and had a ton of blood tests done; ecg, chest x-ray and all came back normal. Then the dreaded ME was mentioned again. I tried to pretend it wasn't that and tried so hard to carry on probably for a lot longer than I should, as pushing yourself with ME is the worst thing you can do. That on top of stresses I had going on at the time lead to this relapse. In January this year I had to give in and say enough is enough and I gave up my volunteer job indefintely as I needed to focus on trying to get myself better. This has been a very hard 9/10 months to get my head around and the different way of living or, as I say right now, exsisting. Doctors can't diagnose ME until the symptoms have been there for at least 6 months and all tests comeback clear. Then you may be referred to an ME clinic or rheumatologist for official diagnosis and help. No one knows for sure why ME starts but it's thought to be when the immune system has come under attack, ie; after a virus.
Under huge stress levels, etc, some people's immune systems decides to stay down
With ME, a lot of people say "oh you're just tired or been doing to much" or "you need a holiday to recharge your batteries and you'll be fine" or "you just need a few good night's sleep and you'll be fine". Yes, ok, these people maybe trying to "help" but because ME is so invisible, people don't/can't understand. On the outside, at the most, you look tired, but in reality each day is a struggle. It's way beyond tired, it's utter physical and mental exhaustion from doing just little things, like showering or hoovering. The exhaustion levels with ME has been described by an ME specialist that someone without ME would have had to stay awake 3 days/72 hours solid, then at the end of those 3 days awake see how they function, to get the full effect. Except, with ME we aren't awake 72 hours. We either sleep too much in the day, so we can't sleep great at night, or we sleep all the time but never feel like we've had sleep. The main symptom is unrefreshing sleep; so I could sleep 12 hours and feel like I've had none. Add on top of that the swollen joints, the pain you're in every day, how doing anything like walking to the loo makes your heart pound and you feel breathless, your memory is like that of someone 90, feeling like you've permanant flu, ibs symptoms, digestion problems, depression, anxiety and the post exertional crash.
So, please, if someone says they have ME don't make them feel bad and say they just need a rest or there is nothing wrong with you. Just because you can't see it doesn't mean each day is a just a struggle to get through for that person mentally and physically.
Here's a few links to help people out who think they may have this or just want to read up about it;