Look out for these icons which will direct you to info targeted
Symptoms |
Rosie, 18
"Dazing out"
"I experienced a whole list of symptoms, such as tiredness after physical exertion, headaches, blurry vision, concentration and memory problems, cold fingers and toes, eye pain, very disturbed sleep, painful joints and sometimes muscle pain. ‘Dazing out’ which is kind of hard to explain, but it is like I can’t stop staring at one point for a while. Dizziness. Noise and light sensitivity.
My disturbed sleeping patterns affect my daily life hugely. I can't sleep until early morning hours and wake up at about 12pm to 2pm. Concentration and memory problems mean I find it very difficult to study my courses sometimes. Tiredness affects my social life a lot. Other symptoms are easier to deal with and affect my daily life less. ‘Don’t push yourself’ is the only advice that really helps!"
"My symptoms, as far as I know, were/ are pretty textbook. When I was first ill, I felt tired all the time, had an almost constant headache and was very sensitive to bright light and loud noise. Due to inactivity, I lost a lot of muscle and put on some weight. Thanks to a physically demanding job, I've put the muscle back on and have lost most of the weight.
All my other symptoms have pretty much disappeared with the exception of the tiredness, which while it's not nearly as bad as it used to be, is still noticeable. Ever since I returned to the outside world I have also noticed that I get colds more often than most as my immune system adjusts to the germs of all the people I am around. A healthy diet backed up with plenty of water and vitamin C helps this.
There's not much advice I can give about coping with symptoms - I'm afraid it's simply a matter of riding it out and trying not to get too depressed.
Boredom was a big problem for me and I'd suggest that anyone similar should try and take up a hobby that isn't too physically demanding and can be done without leaving the house too much. I had read a lot before I got ill but did even more afterwards and, of course, films, music and television were also helpful. Lego and Airfix models also proved mildly diverting, but video games were the real godsend. A Game Boy is wonderful if you're bed-ridden and TV consoles and PCs can provide even more enjoyment if you're not."
"Having had ME for nine years now I have got some sort of routine to my life which has only come through a lot of trial and error. The main trial being sleeping! Over time I have managed to discover my best sleep routine. I find it impossible to sleep before 10.30pm, if I go to bed before then I will be awake all night. I go to bed between 11pm and midnight. I get up usually between 9am and 10am. I can get up before that if I really have to, but find I struggle through the day much more.
I still get very disturbed sleep, can lie awake for over an hour through the night. I used to be very light and noise sensitive and would have to wait till everyone else was in bed so all lights were out and house was quiet. This has lessened a lot over the years.
My concentration is poor as is my memory. I currently do a distance learning course which has no time restrictions, so it is great for me as I can do it whenever I am able. Physically I am not well enough to attend college or uni even on a part-time basis so distance learning is ideal. The various aches and pains affect me in terms of making it difficult to walk and stand but like most symptoms, they come and go and you never know how they will be each day.
My main advice is to treat the symptoms. I know there is no treatment for M.E. as such but there is no reason why your doctor can’t prescribe some medications to alleviate some of the symptoms and in turn make it less for you to battle with. I am on anti-depressants for the pain. I take a couple of medications for the dyspepsia (indigestion) depending on how bad it is. Physiotherapy can be helpful with joint/muscle pain. It’s hard to find one who understands M.E. but as there are some it can be worth a try."
Find out more about what it feels like to have M.E.
