Sunday, 13 June 2010

Just a quickie!

Thought I would post a quick one whilst I wait for tiredness to set in so I can go to bed.
The past week as been a tough one energy wise. I've spent most the week in bed and have slept through an entire day twice.

I had planned on watching the all important England game on saturday but after sleeping for most of the day before I was still exhausted by 3pm and decided to have a quick nap. I work up 21 hours hours later, the next day having missed the game altogther.

However I think I've finally caught up and fully recharged. Today took a while to get going (thank God for the comedy channel on sky tv!).
But once I got moving I managed to get a little housework done, had a shower and got to church.

I'm now suffering the after-effects of so much sleep-insomnia! grrr.

But Iv managed to get alot of bloggging done while I wait for my body clock to catch up.

I have to apologise for my previous post. Those who know me well will know I very rarely moan about my condition and certainly not to the extent of explaining in such details the not so good parts of EDS. However rather than delete the post like I usually do when I write something I later regret, I'm going to leave it just in case it helps someone else. A few of my bendy friends have told me they are passing my blog onto their friends and family to help them understand how hms/eds affects them so hopefully that post will help explain the nasty bits.

So from now on I am hopefully back to my normal positive self. No more winging or complaining and focussing on the bad bits.

I expect by the end of the week I will have done something wonderful or experienced something humerous or embarrasing with my hms/eds that I can tell you all about.

Till then, happy bending!



  1. "The past week as been a tough one energy wise. I've spent most the week in bed and have slept through an entire day twice."

    Damn, I thought I was the only one who experienced this with HMS... to the point that I feel like I am lazy (especially after a friend said that I was just being slothy, whatever that means heh).

    Some days I fight just to keep my darn eyes open and will read a few pages of a book, have a sleep for an hour or two then a few more pages, then another sleep... repeated all through the day (like yesterday in fact).

    Basically I feel like someone has borrowed a few of my batteries and I'm running on empty!

  2. Yep the energy/fatigue problems affect me more than the dislocations. If i didnt have such severe fatigue i would probably be able to work at least half a week.
    I have phases as well where my energy is none existant for a couple of weeks and Im stuck in bed sleeping for most of the time. Then i might have a few weeks where my energy is really good and i manage to get through most days without needing to nap.
    I have really bad insommnia which doesnt help (Brad Tinkle says in his book on hms that insommnia is very common in hms). I tend to just get 1-2 hours sleep which obviously makes the fatigue much worse.

    My specialist wants in increase my amytriptaline again to help me sleep better but it makes me more tired during the day so im reluctant to do this as it will mean I;l be comatose most of the time.

  3. I had to give up work as a programmer because I just wouldn't know what I was going to be like from one day to the next. Some days I would be raring to go... others I would be stuck in bed and just going to the loo felt like a trip to the north pole.

    I have just got off Amitrip because it was making me too damned dopy all the time... I used to take it to help stop migraine as well but recently been having painkiller rebound headaches... so taking painkillers causes migraine... you just can't win!

    Here is what I did to counter not being able to get out of bed... I installed a 2x4 piece of wood on the side of my bed and fitted a flexi mount and a 23" monitor which is attached to an Acer Revo 3610 PC. With a wireless mouse and keyboard it lets me keep in touch with the world while my body is "out of phase" as it were...

  4. Oh and one other thing... do you find it is CHANGES in the weather that affect you more than what the weather is like? I swear it is air pressure changes that affects my HMS more than if it is rainy or sunny. If it changes from one to the other it knocks me on my back about 36 hours before the change.