Thursday, 24 May 2012

Tired of being tired

Am I taking three steps forward and two steps back, two steps forward and three steps back or am I actually not going anywhere at all? I'd like to think I am gradually seeing progress but at times I feel so shit it's hard to believe it.

The good news is, I have had some treatment for the genetic disorder I was diagnosed with in January and now my tests are showing that my blood is normal at the moment. I'll be getting more treatment in the summer but for now things are OK. The bad news is, I'm still having a lot of symptoms of chronic fatigue syndrome. I knew that fatigue is a symptom of the genetic disorder but I was told that my symptoms were likely to be due also to CFS. I had just hoped the doctors were wrong and that once my blood was back to normal I would feel great. I don't think my doctor could quite understand why I was so disappointed when she felt she was giving me the good news that my blood is now OK.

No, it's not all bad. There has been overall progress. In general, I have more physical energy. I am learning, with the help of New Psychologist (Yes, I'm as surprised as you are: she has actually helped me), the importance of pacing myself and not overdoing things on days where I feel good. I don't always succeed with this. Recently I went to a wedding and Shan came out. She's one of the other parts and is pretty much the polar opposite of me: extroverted, energetic and carefree. The switch lead to three hours solid of dancing... and I'm not talking about swaying from foot to foot to pass yourself. Shan loves the feeling of knowing that people are watching her. She likes the eyes and the expressions of admiration and the comments about her being a real party animal. She knows how to move in a way that looks good, unlike me. She likes the attention. I can't imagine anything worse to be honest. My ideal day at a wedding party would be to be completely invisible. It does amaze me how there can be someone in me who feels so differently than I do.

I was back in control a few times during the evening and while out getting a pint of water to try and replace the gallons I had sweat out on the dance floor, people I didn't even know where making comments. Some guy walked past while I was talking to a girl and said "Now there's a girl who can dance". I'm sure he wondered why I look at him so quizzically, but I was thinking to myself that he must need his eyes tested because I would never put dancing on a list of things I can do. People who know me but obviously only know 'me' were surprised at that side of me. Adam, who was not so much into dancing said that a lot of people were commenting to him how surprised they were at me and some people said it to me: things like "You're crazy Candy" (don't I know it!), ''You're a party animal" and "Are you running on batteries?" Someone also suggested that they thought I might be on drugs. I'm not, by the way. I don't even drink alcohol.

Anyway, I digress. I knew I would pay for Shan's fun the next day and boy did I pay. By seven am I was up puking my guts out and every muscle in my body was aching. I spent the next day alternating between puking and lying on the sofa moaning. It's not fair to suffer for a night out in this way when I don't even drink. I know not one sip of alcohol crossed my lips, even as Shan (Goodness, imagine what she'd be like if she did drink).

So yeah, pacing is important. Thanks New Psychologist for enlightening me about that. It seems so obvious to me now but her analysis of my charts where I recorded fatigue, stress dissociation, pain and what I was doing each hour for two weeks really did show me how badly I have been going wrong with my boom and bust tactics. She has now set me daily goals for maximum amount of time I can do activity for and I am to break things up and take regular breaks. I am not always succeeding, as you can see, but I am seeing that it really does help. It doesn't take away the chronic fatigue but it is helping me manage it. Sometimes there is a benefit to being told what seems obvious.


Ruth said...

Congratulations on finding something that helps. I sure understand this feeling. I am working at learning to pace myself too. Take care, Ruth

Justine said...

Hi Candycan

I really relate to this. Over the last couple of years it's something I've worked hard at and it's helped a lot in reducing the highs and lows. It does bring about a lot of grief though as I realise my life is never going to be 'normal'. One part of me at the moment is really grieving over the loss of her freedom to be over active and driven. I know it's necessary to share out the body's energy but it's hard!!
How are you finding it emotionally having the rest time?

Candycan said...

Hi guys, thanks for your comments.
Archi, I don't think I have accepted that my life may never be normal. I know logically that it's very unlikely that my energy is never going to be top notch but I live in hope, otherwise I don't know what would keep me going!
I think having time off work allowed me to be a bit more tuned into some of the difficult aspects of my life which has meant emotionally it has been a bit up and down, but I think this has been a good thing. My tolerance for discussing difficult topics has dramatically increased. I hope things are going better for you now.