I have recently been diagnosed with SCA6 after suffering with symptoms for about three years. Over the last few weeks every weekend and every day off work, I find that I just sleep. Woke up on Saturday at 8.45 and thought I’ll just have a few more minutes then hey ho my husband woke me and says are you getting up it’s 18.45pm. Same Sunday and then again today my day off. Is it normal to want to sleep so much? I feel that this week I have lost 3 days of my life that I can’t afford to lose. Does anyone else do this ?
Hi Bev!
I don't know what type of Ataxia I have but a few years ago it hit me like that, and it seemed to
drag on for ages. Lethargy and fatigue just seemed to be a way of life. Sometimes I have
weeks when this still happens but for the most part it changed for the better as far as those
symptoms are concerned. xB
I really try to get motivated but have just lost my mojo at the moment and I just want to sleep. I still go to work but have cut it down to four days a week. Thank god I can still work. I feel that I just want to be left alone all the time and do nothing. My kids are suffering as I have no oomph. It’s not bloody fair. Bx
hello Bev,
The tiredness can come & go without any reason unfortunately. Sunday I was totally drained of any energy, by Monday I had it all back. It is very unpredictable. I feel the same way when this happens, as if I let people down.
Take care
No, it's not fair. I try to be "even-keeled" but my fatigue hits at any moment. Like Bob said, "I feel the same way when this happens, as if I let people down."
I understand your struggle.
Lori
Beverley said:
I really try to get motivated but have just lost my mojo at the moment and I just want to sleep. I still go to work but have cut it down to four days a week. Thank god I can still work. I feel that I just want to be left alone all the time and do nothing. My kids are suffering as I have no oomph. It's not bloody fair. Bx
Hi Beverley,
I have really off days and found that it's easier to go with it and just rest or the episodes last longer. If I'm asleep when my PA comes he just gets on with everything until I wake up, bless him. It seems to hit worse about 2pm - 6pm so my days are in shifts, I rest and then get back up and carry on.......Take care xx
Thanks. It makes me feel a bit better to know that i'm not on my own. Had a verry weepy episode last night as I hadn't taken my anti depressants and today is another day. Thanks for listening and geing there xxx
Sorry, meant being there, bloody trembles lol xxx
Get the quivers also.On my course with stroke victims it was explained that the brain has been damaged and needs to rest.Don't feel guilty about excessive rest. Seems common with Ataaxia too.I don't get mental tiredness but I must obviosly get physical fatigue.My speech and mobiklity gets worse in the evening even though it is virtually non existent during the day. The quivers and trembles are worse at night.
It amazes me that my intelligence, rationality etc are not affected. I just thought I had something that had a cure or treatment, not theres nothing we can do for you and oh by the way your children may get it too and my sister and neice.
I have a good job, a lovely husband, no mortgage, three lovely boys and sodding ATAXIA.
Sorry rant over just feeling very low today and yesterday I feel guilty as in the last 7 days I have slept through 3 of them. I have missed things that my kids have done, said, laughed at etc however; my patience is wearing thinner and thinner the tireder I get. Don't even want to go on holiday as it involves walking and people thinking you are drunk all of the time. It's not fair is it?
I get those feelings too.I don't know who I am angry with.I burst into tears at the doctors surgery so he highered the anti- depressants up to the maximum dose ie 40 mg.My intelligence is not affected either. I know what you mean about holidays-too much effort and it does help to rant.It's not a very cheerful disease.I have had more laughs at myself lately.We have good days and bad.On the bad do something nice .
Bev you are a strong woman, a lovely person, try to be kinder to yourself.
I know where you're coming from with this, for a long time all I seemed to do was lie around.
People would come visit and I always seemed to be lying on the sofa, I was a liability working
because concentration was pathetic, self esteem was at it's lowest. I wasn't interested in
anybodys' news, just totally apathetic.
At some point it bottomed out and I managed to rise to the surface again.
It's all swings and roundabouts now, try to just go with the flow, don't let the frustration make
you continually beat yourself up. Do go on holiday, life doesn't have to stop just because you
don't walk in a straight line. xB
Beverley said:
It amazes me that my intelligence, rationality etc are not affected. I just thought I had something that had a cure or treatment, not theres nothing we can do for you and oh by the way your children may get it too and my sister and neice.
I have a good job, a lovely husband, no mortgage, three lovely boys and sodding ATAXIA.
Sorry rant over just feeling very low today and yesterday I feel guilty as in the last 7 days I have slept through 3 of them. I have missed things that my kids have done, said, laughed at etc however; my patience is wearing thinner and thinner the tireder I get. Don't even want to go on holiday as it involves walking and people thinking you are drunk all of the time. It's not fair is it?
Thanks guys Big hugs xxxxxx
Hi all, I always feel tired. I was coming home from the street a while ago. ( I have a scooter) I started to close my eyes. I had to force myself to stay awake. When I got home I slept for 2 hours. Most days I have a nap in the afternoon. I cleaned my carport the other day .I had to take a steroid tablet so I could do it. By the end of the day I was weak and shaky ( not from the Tablet, which my Dr had given me) I have also learnt that I cannot clean my oven. I didn't get to finish it. My knees were aching and I could hardly get up When I finally did get up I could hardly walk. Thank goodness I have a wheelie / rollator walker. When people stare at me when I am walking I tell them "whoops, drunk again" It stops them staring. I'm thinking about printing the facts of Ataxia and hand a sheet to those who stare. Beverley, don't let the few spoil your holiday. Heaven knows we need a holiday. I would have loved to go on one of those river cruises but I have left my run a bit late. I'm 66 so I'll stick to having a holiday in my own area. Stay safe all.
Hi Bron!
Well done for attempting to clean the oven! Mine is built in and I even have trouble with that.
My daughter was once vacating a flat and I went around to try and help clean, more trouble
than it was worth! I spent ages with a Brillo Pad scouring the oven shelves, then someone
came in with one of those oven cleaning kits, where you pop the shelves in a bag of solution.!
My brother and family have been on several cruises (big ships/mediterranean & florida etc) and
are addicted to them, I could quite fancy one myself now! xB
bron said:
Hi all, I always feel tired. I was coming home from the street a while ago. ( I have a scooter) I started to close my eyes. I had to force myself to stay awake. When I got home I slept for 2 hours. Most days I have a nap in the afternoon. I cleaned my carport the other day .I had to take a steroid tablet so I could do it. By the end of the day I was weak and shaky ( not from the Tablet, which my Dr had given me) I have also learnt that I cannot clean my oven. I didn't get to finish it. My knees were aching and I could hardly get up When I finally did get up I could hardly walk. Thank goodness I have a wheelie / rollator walker. When people stare at me when I am walking I tell them "whoops, drunk again" It stops them staring. I'm thinking about printing the facts of Ataxia and hand a sheet to those who stare. Beverley, don't let the few spoil your holiday. Heaven knows we need a holiday. I would have loved to go on one of those river cruises but I have left my run a bit late. I'm 66 so I'll stick to having a holiday in my own area. Stay safe all.
Hi, I am suffering chronic fatigue, often can't get up before 11.00 and then fall asleep again in the afternoon and then again early evening. I am told by associates who also have ataxia they suffer from fatigue, it is a question of pacing yourself. Do you work, if so, it may be that your body is saying there's too much going on in one continuous spell of time. My OT has advised splitting up the day and taking rests after every tiring event, including dressing, making the bed, washing hair. Even little things like that. And the more you try to do the worse it gets. I have found that to my cost. I am having to do very little each day to ensure I get some measure of worthwhile time each day. Otherwise I am in bed all day, sleeping on and off. Give your self some self indulgent time is my advice. Fatigue is apparently one of the symptoms of Ataxia.
I do one project then need to rest. Fatigue is a big factor but I am on disability so I do not work. That would be a huge drain. I sleep about 9-10 hours most bights. Are you on any meds that may be causing the fatigue to be exaggerated?
I work 8 hours a day 4 days a week as I am the family bread winner. I also have 3 kids two of which are disabled so my husband is a full time carer to them. I feel guilty if I sleep as he never gets time off it's either me or the kids he is caring for. I really don't know how he stays with me. I have zero sex drive, apparently that can happen with Ataxia along with everything else and I suffer with Clinical depression. My self indulgent time is when I am in bed. i'm hardly awake for anything else. I take high doses of anti depressants and some opiate pain killers as I suffer from leg cramps that are so painful I could cry. And I probably drink too much alcohol as I feel so low and I know that does no good for me at all.xx
Beverley said:
I work 8 hours a day 4 days a week as I am the family bread winner. I also have 3 kids two of which are disabled so my husband is a full time carer to them. I feel guilty if I sleep as he never gets time off it's either me or the kids he is caring for. I really don't know how he stays with me. I have zero sex drive, apparently that can happen with Ataxia along with everything else and I suffer with Clinical depression. My self indulgent time is when I am in bed. i'm hardly awake for anything else.xx
Beverly,
Bless you! It is amazing what the spirit can endure. Sounds like your husband really loves you and the family. You might be a great gift to him. Service to others is a great way to grow spiritually. You have a lot of challenges but a lot to be grateful for too. If you wish I will pray for you and send you healing energy.