“Ten men waiting for me at the door? Send one of them home, I’m tired.” – Mae West
October 6, 2012 § 18 Comments
When my daughter was born and until she was about two and a half, she hardly slept. Well, she did, but it felt like she hardly slept. She definitely woke at least four times a night. I was exhausted all the time, it was horrific and I was desperate for rest.
I am now experiencing my second bout of extreme exhaustion, this time through illness and not children. Since before I was diagnosed, probably around May of this year, I’ve been experiencing, extreme, all encompassing tiredness. At one point I was sleeping between 14-18 hours a day. The tiredness has decreased with my treatment for dermatomyositis, but it hasn’t abated: And this week, I’ve been particularly bad.
“Oh, but you’ve got enough energy to write a blog post, etc.”. I hear you say. True, I am able to sit and slowly type, but only after a long afternoon sleep. I suppose at least I can have an afternoon sleep, you can’t, often with small children around.
My neurologist said to me the other week when I saw him, that I must not do too much, because the exhaustion you will feel will set you back. He’s right, I’ve been a fool and done way too much this week. I have been working (from home, part time, but still it’s very tiring). I spent time with my daughter and grandchildren (such wonderful, happy times, but small children are so tiring) and I had friends stay over for a few nights (good friends who did my garden and entertained me – I did ask them to wear clown suits too and sing, but they refused, tch (selfish friends).
The exhaustion you get with diseases like this is all encompassing, I’ve never experienced an intense tiredness like it – it is actually worse than the tiredness of motherhood.
I, like many others, try to fight it. I am sick and tired of having this disease control my movements, so I try to pretend to myself and others Im not so bad and then I crash, literally, its like a sudden crash where you feel physically sick with the tiredness and HAVE to lie down and sleep.
I’m still sleeping about an hour during the day at the best of times anyway, but when the crash comes, wooo, it’s sleep as much as possible.
So, carers and friends and family of the ‘diseased’, if one of us sick people say we are tired and aren’t up to, what must seem to you like the most trivial of things, such as a phone call, it’s not that we don’t care, or are being flippant about our friendship, etc. it’s because we are really, really unable to do it.
(Well unless i just can’t be arsed and you’re getting on my nerves this week – JOKING!!!!) I LOVE you all!