Sunday, 12 October 2014

A snippet of my life!

A snippet of my life!
This is not about crafting more of an understanding of me and how crafting plays a big part in distracting me from all the symptoms I have every day.
I'm sure there are many of you out there will have turned to crafting when illness or the stresses of life start to take over your lives.
I saw this letter, on the internet, of a person suffering with fibromyalgia and ME and reading it I found it so true about how I can be every day but more importantly explaining why people should not judge me by my illness but for the person who I am. I still need a 'normal' life and to try and socialise and enjoy life around my illness. I will not let it beat me but some days or even on a daily basis it can get the better of me.
Fibromyalgia and ME (Collectively documented as CFS/FMS) means many things change, and a lot of them are invisible. Most people do not understand even a little about CFS/FMS and its effects.
These are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend all of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body.
I still worry about life's ups and downs, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what CFS does to you. Please understand that CFS/FMS is variable. It's quite possible that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" if you want me to do something then ask if I can.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need to exercise may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you think that I would?
I visit my GP, consultant and physio on a regular basis so I am doing the exercise and diet that I am suppose to do.
Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously CFS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, CFS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
Please understand that if I say I have to sit down/lie down/take these tablets now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever).
CFS does not forgive. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have already tried most of the treatments my consultant, GP and physio have suggested. I have even tried homeopathic remedies. People in general have suggested treatments. I've tried them all, but then I realised that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we'd know about it. 
In many ways I depend on you. I need you to visit me when I am too sick to go out... Sometimes I need you to help me with the shopping, cooking or cleaning etc. I may need you to take me places.
I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you.... and, as much as it's possible, I need you to understand me.

I liken my days as climbing a mount and it's a hard and painful journey but I'm still the same person inside. I won't let it beat me.

I hope you enjoyed reading this as it's not a text book description of CFS/FMS but a true life take on this little known debilitating condition.