If I could have one wish

By panda_eyed

Yesterday, my boss congratulated me on how well I have been dealing with this mystery illness that makes me too tired and achy to get into work sometimes. I was a bit bemused. Sometimes it feels like it is draining the life from me, but I am lucky that my employer is understanding enough to let me work from home when it gets too much.

Reading our lovely Diva's 'M.E. and Me' entry last week, I thought that she's the one we should congratulate for dealing so well with her M.E. It is a debilitating illness, and yet she remains upbeat and determined not to let it take over.

Although I try not to let it, it sometimes feels like it is ruling me. It's no fun at all when you get all excited making plans for the weekend, then realise that, actually, you won't have the energy to do it, and even if you did feel well enough, you'd be so tired that you'd be ill for the next week.

Although my symptoms are very similar to Diva's, the doctors say that all sorts of disorders express symptoms like these, and as slow as it might be to get a diagnosis, they have to work backwards at giving me a diagnosis, by process of elimination.

I can't tell you how sapping this thing is, but worse than having to live with it, is having people around me doubt that there's anything wrong with me.

I have lost track of the number of times that I have been told I need to get more fresh air or more exercise, that I need to drink more water or stop being such a hypochondriac. But the worst one? Rolling their eyes and saying ‘Stop looking for attention’. You may not be able to physically see my symptoms, but they are very real indeed. It’s very upsetting that people I love don’t understand.

Sometimes I’m so frustrated that I wish I could transfer my pain onto them for just a few minutes, so that they can feel exactly what I feel all day, every day. How well would they deal with the constant tired, aching, weak muscles, bouts of exhaustion, muscle twitching, recurrent sore throat and illness, joint pains, insomnia, hair loss, skin irritation (shall I go on..?)? If my boss can understand, why can’t they?'

'This' is not me. I wish that I could wake up tomorrow and feel normal - just like I used to a year ago. Some days I just want to cry…

 

15 comments so far.

  1. nikkipolani 5:49 pm, September 14, 2006
    It sounds a bit like fibromyalgia - I have some friends with this disease (onset often triggered by an injury) and they tell me the weakness and pain is very real indeed. Glad to hear you have an understanding boss!
  2. Flighty 9:40 pm, September 14, 2006
    You have my sympathies Panda. It annoys me when some people say that there's nothing physically wrong! Not only that but they don't want to listen or learn.
    As Nikki says you're lucky to have a boss like you have.
    Take care and fingers crossed(again) that it gets identified and sorted out in the not too distant future.
    Have a good weekend.
  3. Olivia 11:55 pm, September 14, 2006
    You and Diva are stars when it comes to being amazing despite being draged down by the ME.

    Nikki - I think the US equivalent of ME (Myalgic Encephalomyelitis) is Chronic Fatigue Syndrome.

    All I have is dysautonomia, which has the same fuzzy status as ME/CFS had before anyone knew enough to acknowledge it, so it is often diagnosed independently as ME, Irritable Bowel Syndrome, Lupus, etc - and certainly it can be disruptive, but in mild cases (as mine) is nowhere near as constantly pervasive as any of those conditions.
  4. Olivia 11:55 pm, September 14, 2006
    This comment has been removed by a blog administrator.
  5. Olivia 11:57 pm, September 14, 2006
    Woops I just deleted because I posted comment and ended up witha blank page, so I hit back button and posted again...

    nitenite
  6. Jia Li 1:39 am, September 15, 2006
    tuddles

    u need some...
  7. Youngmum 5:03 am, September 15, 2006
    Oh honey, I am so sorry to hear that people have given you a hard time.
    You are a star of a person and I think you are doing just great.
    Big hugs to you ((( )))
  8. Sunshine 1:14 pm, September 15, 2006
    Cry as much as you want to girlie.. its better to just get it all out and have a good ol cry.
    I had no idea that you also have ME it must be awful for you. I know how much Diva stuggles at times.
    Just remember that you have a lot of family and frieds that support you and understand why you are feeling the way that you are feeling. *hugs*
  9. Amy 1:51 pm, September 15, 2006
    Oh honey. It totally sucks doesn't it! I never really realised how bad ME was until I stayed at Diva's one wkend. We had already had a busy night the day previous then we did quite a bit of travelling the next day and by 9/10pm gorgeous Diva was zonked out. She did perk up again after alot of red bull but it was horrid to see how it affected her.

    Don't let silly people who don't understand bring you down honey. We all love you and you're doing fabulously coping with everything.Xxx
  10. panda_eyed 2:23 pm, September 15, 2006
    Hi Nikki, yeah I've had people suggest FM to me before. I haven't had any diagnosis yet though, so I don't know what it is yet. I'm glad I have an understand boss too!

    Thanks Flighty. For a while, I did think I was just a big hypochondriac. I hope you have a good weekend too.

    Livvy, you say 'all I have is dysautonomia' like it's a small thing. You deal with it so well that I bet not many people even know you have it! Big hugs, sweetie xx

    Thanks for the tuddles JL, they were much needed.. :) Hope your project is going well.

    Aww Youngmummy, stop, I'll get a big head soon! :) Thanks, lovely. *hugs back*

    Sunny, I get so frustrated sometimes that it does make me cry. I haven't got a diagnosis of ME, but the symptoms are similar. They say it could be a lot of things though. Thanks for the hugs *feels warm and cosy* :)

    Thanks Amy, you guys are all lovely. I think Diva is fabulous for coping with ME all these years. It can't have been easy at all, especially faced with people who still don't believe it exists as a disease.

    My mum said to me last week "You'd better get over it soon - how else will we marry you off?" Charming..
  11. nikkipolani 4:49 pm, September 15, 2006
    She forgot the bit in the marriage vows about "in sickness and in health" - or is that not in the vows these days?
  12. Weeble Diva (You can't keep her down ;o) 6:43 pm, September 15, 2006
    ME is horrifying and to have people that say those things to you is bloody awful, I've had to put up with it so much and if I had the energy I'd bloody punch the idiots.
    I too think I wish it sometimes had something that 'showed' how ill we are, but since we 'look' fine they assume it's ‘malingering’ and that makes us stress even more which makes us even more tired!
    I did have a nervous breakdown the first time I got ME so I know how upsetting it is when you first contract it. I went from being a total sport freak to being an invalid in one week and it carried on for 8 months until I was able to get around a bit. I now don't ever want it to get to me but I have had 10 years to get used to the idea.
    Don't let those narrow minded idiots get you down, YOU know there is something that needs to be remedied, and ask them if they would be so critical and judgemental if you told them it was cancer? Nto everyone goes bald with that, but a lot of people get on with it day by day and it doesn't show, just because ME attacks everything inside of you doesn't make it less real, so keep your chin up honey, I’m here if you need me, and I do sincerely hope they find out what it wrong with you, and can fix it as soon as poss.
    BIIIIIIG HUGS going out to you sugarpie and don't forget me and nags are working on when to have that party so you can come over and have a laugh with us, you'll get all the support you need from my mates for whatever is making you feel so bad because they've been through it all with me! ;o)
    Oh and big thanks for all the lovely things you and everyone else said about me, *blush* Bless all your bums! :o)
    xxxxxxxxxxxxxxxxxxxxxxxxxxx
  13. Olivia 8:11 pm, September 15, 2006
    Yes yes, see you soon Pandy!!!

    It's odd, the things happen so independently of each other that it could be unnoticed by other people, but from one moment to the next I never know if I am normal or not, equilibrium is such a fleeting thing.

    Only this morning I lost some time feeling sick and wasn't sure I'd make it on time.
  14. Jia Li 10:13 pm, September 15, 2006
    I will blog the photos soon, I have four projects on the go now
  15. panda_eyed 10:59 am, September 18, 2006
    Nikki, not according to my mum.

    Thanks for your support Diva, it means a lot to me. I'm looking forward to meeting you all!

    Livvy, I know what you mean about the equilibrium thing - one minute I feel fine, the next I am half-dead. Hope you're feeling a bit better now.

    Jia, no worries sweetie, hope it gets less hectic soon xx

    I hope you all had a lovely weekend xxxxxxxxxxxxxxxxxxxxxxx for you all xxxxxxxxx

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