If you can do it ducky, so can I

It gets very frustrating, being ill, regardless what you suffer from. Even just having a cold is enough to annoy anyone, and quite understandably, I think. Regardless to what degree, it restrains you, and we humans love out freedom.


I keep reminding myself - or try to, at least - how lucky I actually am. I have a home, a crazy but caring family, clothes to wear, food to eat, and, although I'm not rolling in money, I at least have enough to survive. Things, although they do feel crappy, could be so much worse. People starving in Africa blah blah blah ...

Woke up this morning, feeling rather optomistic, it must be said - my legs aren't quite as shakey as they've been for the past week, I have a semi-date thing with a dear friend of mine tonight, and I was mentioned in a letter from the concert the other week as being a "Credit to the Corps", because I had such a lovely manner and smile whilst I was in the chair. Go me!

I'm still completely shattered, but thats a normal occurence now, isn't it, really? I've been asked to go shopping with a bunch of friends from my old school, which would be nice, but I'm worried about keeping up with them. Even with my stick, I walk quite slowly. I don't think they would do it deliberatly, but I would get left behind. Feels a bit as though I'd be holding them back by going. Also, I get even more tired out than normal, in a large group of people.

See, its a delicate balance. Its a very isolating situation and condition, not only because of peoples reactions, but because of ones own feelings. I've been invited out, but know, realistically, its not a good idea. I'll be tired tomorrow, and then the next day, and then Friday. I should use my rest days for resting! But, especially when you're feeling good, like I am today, the temptation is to just go out and do everything. Its a dominio effect, and the more you do, the more dominios you topple over.

Bloody dominios, knew there was a reason I couldn't play ...

Well well well ...

Its Friday, and nearly mid-day ... Told myself I should probably get out of bed.

Things have been kinda crazy the past couple of days. Some nasty comments, some painful thoughts ... But, on the upside, I met Dame Vera Lynn (!!!), earned £30 for helping with interviews at the hospital, and have gained a new friend. Isn't it curious the circamstances that can bring people together?

I need to decide what to do about college, and about September in general. Got some very difficult decisions to make. And it is relevent, because the ME is whats making the decisions very difficult to come to! Blasted medical conditions...

Sunday and Monday I was stuck in bed, because I over exerted myself on Friday and Saturday. Was well worth it, though, as far as I'm concered, because the Royal Marines Band were fantastic, and the wedding reception was lovely.

Things like that tire me out so much! Its crazy, thinking about how much I used to do, and how little I can do now. People not understanding, and being cruel about it, really doesn't help, and, nasty as it may sound, I really wish sometimes that they could suffer from all this, just for a week, to see how hard it really is.

I've been invited out to go to a beach party this afternoon - not only is it raining, but how on earth am I supposed to walk across the pebbles?!? Could be a very interesting day, if I decide to go.

I've been advised to send off for Disability Living Allowence. I don't know how I feel about that, really. Don't appricate being told I could be registered disabled. But at the same time, I'm not working, can't get EMA because I'm not at college, and I don't like having to ask my parents for money. So it IS sensible I guess. The form is a mission though - its like 50 pages long!!!

x x x

Hello!

Hello to anyone reading this. My name is Erika-Maye, I'm 17 years old, and live in the South of England. I teach Physical Training and Rowing, have an interest in Ancient History, and have a tendancy to burst into song on many occassions.

Oh, and I have ME.

This is here for anyone who has ME, knows someone who has ME, or simply wishes to expand their understanding of the world, if you will. It is also just to prove I am a completely normal person, regardless of a condition that I am labeled with.

The first thing I would say to anyone in regards to ME is this: It is very real. The painful thing for me, when I first went to see a doctor at the hospital, they couldn't find anything wrong, so OBVIOUSLY it was all in my head. I still struggle with that every day.

I have also been accussed of just being lazy, because I am so tired, find it difficult to read and write, and struggle to walk. It is infuriating and hurtful to hear people I consider to be friends of mine react like that. So! Here's a list of the symptoms that ME/CFS sufferers have to deal with:

• CFS/ME is defined as a condition that involves severe fatigue that usually has a clear starting point, often after a bout of illness, and that doesn't improve after rest. It makes you less able to cope with levels of activity in your work, school and social life that were previously normal for you. CFS/ME isn't the result of over-exercising; even normal physical activity may make you feel very tired.

Common symptoms of CFS/ME include:

• Muscle and joint pain, but with no swelling
• Fatigue that lasts more than 24 hours after exercise or exertion at a level that you normally used to be able to manage without feeling tired
• Forgetfulness, memory loss, confusion, difficulty concentrating - "brain fog"
• Sleep disturbances - waking up feeling tired, or unrested, or having trouble getting to sleep
• Flu-like symptoms which don't seem to clear up
• Palpitations
• Sweating
• Feeling faint, or problems with balance
• Painful glands in your neck and / or armpits
• A sore throat
• Headaches
• Feeling sick
• Panic attacks
• Mood swings

Personally, I also have a lot of trouble reading and writing. I described it to a friend recently as that there was a wall in my brain between what I was reading and what I knew. As an example, I can read Heirogyphics, and I used to be able to translate them without needing to look anything up. Now, if I look at a page full of them, my mind will just not connect with what I know. It can be very frustrating, and has a tendancy to occur during speech and writing as well. I use the wrong word, forget I've said something, or even forget the subject of the conversation! Typing this out, I keep using the wrong word, or forget spellings.

Depression can often, understandably, occur in connection with CFS/ME. But, again, from my own experience, I would like to say that you CAN have both. I was already diagnosed with Depression when I began to suffer from ME. If they tell you that what you are going through is purely related to any mental health condition you suffer from, and you're sure its not - you do know inside yourself, if it is - stand your ground. Many people have a bad idea of anti-depressants, but they are part of the solution, and they may help you. Forget what they are called, and simply accept that as something that could help you get better, or at least come to terms with your condition in a better way.

Right, well rant and introduction over. I'm completely knacked now! Take it easy everyone

x x x