Scleroderma & Raynaud's UK (SRUK)

I hate living like a walking Zombie

I have to go to bed between 6 pm and 9 pm any later I start feeling sick and my body hurts and aches so much. Sometimes, I sleep all night sometimes I am awake for hours unable to sleep. Whichever way I NEVER wake up refreshed. Every day I drag myself about making sure I try to live life as normal as possible ( ha ha what a laugh). The first chore is getting washed and dressed have to rest after the rest of the day follows. Thank god for my animals that keep me going.

5 Replies

I relate totally Anteater, I do the same thing, just lie there at night thinking I need to get some sleep so I am not so tired in the morning, but that never works. And even on nights I do sleep fairly well, I still get tired about 3 hours after getting up. I have found instead of going to bed, unless I am really tired to the point of not being able to function, that if I just sit and allow myself to unwind, that it helps a lot and I dont need my afternoon naps so often. I also try to not beat myself up over it, but it is hard so often I think I am just giving in and if I pushed past it I would be fine. Which isnt true as if I push past it then my energy is completely gone and I am useless from then on.

I was told by my helpline nurse that I need to listen to my body and if I am tired then lie down, which I do...sometimes lol Usually I spend my time telling myself Im really not tired and that I should go do what needs doing, then I start forgetting where things are and dropping things, lol One of those if my head wasn't attached I would lose it moments! I do not like to go lie down during the day and only resort to this when things are really bad, but my little mini breaks seem to help alot.

And I have 4 cats and if anyone was around during the day they would assume I am crazy as they are all I have to talk to LOL I just wish they could talk back instead of look at me like, 'Hey what you want me to do about it Mum?' hehe


Like you when I am tired I start forgetting things, making up words ( so hubby says) and getting clumsy and I always forget where I put things - I try not too sleep during the day but sometimes it cant be helped and I will go off for a good 2 - 4 hours (he he - the dogs wake me up in the end) good job I have them.


Not sure if this helps anyone but I was at the point of having to give up work when I stopped every drug I was taking. Although I'll never fire on all cylinders, I am so much better without anything and coping at work. I know this isn't the answer for everyone but don't underestimate just how much is down to the medication.


Yes I have thought many times about giving up my medication - but I also suffer from Chronic Fatique and also have an underactive Thyroid and have other auto immune diseases which attack the body and all have the draining effect. When I first had the Chronic Fatique I cud not even get out of bed, I had to have help going to the toilet, having a bath etc etc., and if I had to do it on my own I had to crawl and literally drag myself about, even now I still dread having a bath and having to wash and dry my hair . I manage it a bit better now but I still have difficulty walking up stairs and slopes etc. I really have to do what I can when I can and must remember not too do too much.. My memory is awful and I have hardly any concentration whatsover. I was off sick for a year and finally they gave me Ill Health Retirement which was the best thing for me. I was worried at first because I was on a good salary - but in the end I had to listen to my body and try to have a reasonable quality of life. x


I had a similar situation Anteater, I to lost my job to Ill Health. At the time I was devastated as I was making a good salary and really enjoyed my job. I know now if I hadn't of lost it then I would be unable to do it now, so it was for the best. We have adjusted to the change in finances, I have to think if I really want something and not just buy buy buy like I used to. It is a big relief though now that I have so many doctor appts and tests and days where I just dont want to get out of bed, that I do not have to worry about calling in to work and no more guilt about missed time! So there is definetly an upside to it all, although there are days when I find it hard to see them hehe


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