Hi guys
i have had m e for 3 years now, in the beginning I had a good job with loads of respond ability , I now no longer work at the moment I have relapsed badly I have now been in bed for 4 weeks, only getting up to use the bath room. Yesterday was my grandsons first birthday and I was woke up by all the grandchildren of which there is 9 and friends and family singing happy birthday I just cried as normally I do all the food and make the cake and this time I did nothing.
I sleep for 17 hours at a time and my gp Said there is good days and bad, right now I feel if I was not here people would not notice as I have lost contact with the out side world.
but on a good note I have finally got my blue badge for when I can get out.
sorry for going on but I felt like a moan and new you guys would understand.
cheers
I know the feeling Deb - I hate this illness and would do anything to get rid of it. Its there all the time. Everytime I smile or laugh I'm quickly reminded of it and the smile soon goes. I struggle for sleep - how about you give me some of your 17 hours ? I think you're being a bit greedy having all that !
I'm sorry that you're having such a rough time now. It's most likely a relapse and you will experience improvements. I've had ME/CFS for 17 years and finally seem to have reaached a plateau, but I have to be very mindfull of pacing still. Yesterday I was tired and slept 14 hours - but that's an exception.
Since I am feeling better I will attempt a walk today and get out in the sunshine. Not being able to exercise or, exercising and crashing is one of my biggest peeves -
I hope your bedridden state will change soon. Some people are affected by relaspses more in the Spring - I know it's difficult to stay positive when you're stuck in bed - but we all have positives (sometimes it takes digging). I sounds like your grandchild's birthday was joyful, even if you couldn't contribute as you have in the past. Maybe next year you can make the cake.
It is a very frustrating illness, but this a good place to come when you are feeling down, or have a success. We understand.
One thing that I do we'll is sleep, but you feel like your life has no meaning , if I could pass some on to you I would lol.
Hi Deb, Yep you are certainly not alone. I have suffered with M.E. for just over 7 years now. I was looking forward last year to a nice 50th Birthday celebration, possibly a party. I had major relapse in 2013. I thought party was a bit too risky so opted for a nice family meal. You guess it! I was that ill I never even made my own 50th Birthday celebration. It would of meant a lot to me as my Mother died shortly after this celebration. I was the only family member not there. This is an awful debilitating illness that does not just affect those with it but all their family and friend too.
On a positive note, there will be better days believe me. I went out last Thursday the first time in over a week and half, that was just to see my elderly aunt, mum's sister. I was out for a couple of hours, but then bedridden for two days after. It is so difficult to know what will set you back and why, but hang in there for the better days and enjoy every second.
I understand it is difficult with friends. What I do is invite my girlfriends around to me one night during the week, but making sure they text or phone before they set off to check I am still up for it, and fully understanding a cancellation may be on the cards.
I feel like I have lost contact with the outside world as I have not worked since my relapse in 2013, but hey we are all here, at some point when we can be, so chin up and look forward to what we all hope to be a better future.
All the very best.
Tx
Hi to you all; I don't know if there are any of you who have read of one of our contributors' input/research into ME/CFS re there being a related incidence of undiagnosed decrease in the T3T4 uptake, that is becoming more prevalent in today's treatment of this debilitating condition...apparently a Dr Skinner, in the UK, started treating patients with a low dose of Thyroxin (as he felt that all of our symptoms directed towards under-active thyroid, even though the Thyroid tests were coming back NORMAL)....I, and my Rhuemy, have been convinced that this is a REAL possiblility, and I now am having bloods checked for "specifically" my T3T4 Uptake....if this can give me the slightest bit of "more energy", I will be Very Happy, and make it easier to cope with any of the other issues that inflict my body....how about you all try researching this/or reading some previous blogs re ME/CFS from a Sylvia???? Bron