Yes please I will try anything Thank you zzz
Beverley said:
Yes please I will try anything Thank you xxxxx
Bev, do you want to chat? Or email?xB
Beverley said:
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
Beryl Park said:
Bev, do you want to chat? Or email?xB
Beverley said:
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
Beryl Park said:
Bev, do you want to chat? Or email?xB
Beverley said:Sorry Beryl but I am at work at the moment I will be on line later and we can have a chat xx
Hello Beverly,
After my stroke which triggered my ataxia, I could have slept for hours. If it had not been for the therapists and nurses waking me up for my therapies, I am sure I would have slept day and night.
It was weeks before I gathered the strength to limit my sleep to an afternoon nap. Recently, I was able to not nap at all until about two weeks ago when, for no known reason, I became completely exhausted again.
Right now, I am trying to resist a nap, but I am not sure who will win, my mind or my body. Honestly, I feel it is better not to fight it, but sometimes it seems that the more I rest, the more tired I feel. A vicious circle.
So I try to do what I have to do on my good days. On my bad days, I just do …nothing or hardly nothing.
I try not to think of the way I used to be, very active, athletic and always on the good I get depressed.
I used to love traveling. Now I just want peace and quiet.
I feel terribly guilty about having missed my Mom’s 90th birthday in France ( I live in the US), but I don’t know how I would have made the trip the way I felt then.
Try not to think about what people think when they see you walk. Get a cane even if you feel you do not need it. Drunk people do not hide behind a cane 
I walk every day and although I manage to cope without a cane, I take one unless my husband is by my side. It is a security that can prevent falls and broken bones, which would create even more problems than we have.
Try to laugh and find humor at your situation. I know, not always easy, but there are some good laughs that come out of a complete lack of coordination…
This forum is the greatest place to vent. People all know what you are talking about. They are all wonderful. They know more about ataxia than most doctors.
Take care and do what you want, don’t let others tell you what is good or not good for you ( unless they have ataxia themselves. And you know where to find those. 
I have SCA 1, and 2 of my sisters have it also, and we all have the fatigue thing going on. The neurologist at Emory told us that fatigue was the biggest complaint with ataxia.....I believe it, I can do the things I use to do, but get tired so much faster and easier, of course I can't do EVERYTHING I use to do!! :-) wish I could.
You know I slept all the time in the beginning of my disease and no one really addressed this until years later. I didn't know if it was a normal part of SCA, depression, or what? As it turns out I was likely a combination of things, but one of them was definately sleep apnea. I had no idea I had this and only went to the sleep doctor to appease my neurologist who was clearly trying to help me. Turns out apnea is not so uncommon with SCA and other neurological conditions and after 2 days on a CPAP machine, my multiple naps each day disappeared entirely. My neuro-opthamologist says that apnea accounts for a majority of heart disease and stroke in people, and too often no even knows they have it. Get this checked out. If you snore when you sleep, or if anyone notices you waking after falling asleep gasping for air, or stopping breathing at all you should get a sleep study done. Don't let this go by. It can make a huge difference in your life.
O.K I will talk to my Neurologist. My husband says that i snore a bit, but I have never naped in the day or laid in bed after 9am. I want to get up and do stuff but I just sleep for hours. Yesterday after going home from work I fell asleep in my chair for two hours. Never done that before and now I am dreading the weekend as I am offf and don't want to sleep through it again. I have so much I want to do in the garden.
Yesterday I found out that my cousin on my Fathers side is going to see a neurologist and has the same symptoms but my mother has the same symptoms as I do and the neurologist is sure thst it's from my Mums side.Someone slap me please and shake me out of the dolldrums ARRRRRGH .O.K rant over. Back to work. Morning everyone and thankks for listening xxxx
The excessive fatigue/sleep symptom is truely awful. This is a distant memory for me now, most things are!
Although I still get it to some degree. I can empathise with what Bev says about weekends, all week I'd look
forward to my husband being home, then when the weekend came I'd be neither use nor ornament! I think
the sofa has a permanent imprint of my shape on the cushions! Sometimes I didn't even have the energy
to be frustrated, I was just a complete zombie and this was without being on any medication.
I don't think the medication helps at all. I am on lots of anti depressants and pain killers for when it's bad and when the pain is really bad i'm on Morphine. Actually when you come to think of it i'm not surprised i'm always bloody asleep. xx
Sometimes these cocktails of drugs are questionable whether they help or not. My daughter had a car
accident a couple of years ago, still has ongoing issues and pain. She takes a combination of prescribed
medication, it often makes her feel worse but what else can you do? We rely on doctors to know best...?
I don't generally trust Doctors, take this morning. My husband has what seems to be an inflamed Bunion (all the years of riding fast bikes). Doctor tellh him it's gout and to stop drinking beer and eating Yams neither of which he has or even know what a yam is. in the end he said just take paracetemol poor bloke can hardly walk bless him.
There is a big difference than being lazy and extremely fatigued! I want to do stuff, but I have no energy.I sleep all the time! I don’t want to be around anybody! I feel like I’m a prisoner in my own body! I’m too young to feel this old! I’m 39 and had to quit work 2 yrs ago. I hate the stares, just knowing people are trying to figure out if I’m drunk!
Hi Beverley, sad to say alcohol and opiates will make you even more depressed, they don't mix. I used to get leg cramps really badly, I now eat a banana every day and I haven't had them for months, sounds to simple but worth a try. Haveyou tried Marmite? It's packed with B vits which help to cope with stress and depression. I've been there with the depression, it's a great black hole and I really feel for you. Be kind to yourself and you'll find you've got loads of friendship and support here! Take care, Z xx
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Beverley said:
I work 8 hours a day 4 days a week as I am the family bread winner. Id aluso 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
zhez is right, and also, alcohol will destroy more of your cerebellum. Not worth it!
If you feel the combination of your medicines make you more tired, ask your pharmacist and see with him if he could suggest a substitute which would not have this side effect, or at least less of it. Pharmacists are the experts in medications, not the doctors. And sometimes, if you have several doctors who prescribe medicines, they are not necessarily aware of what the others have given you and you end up with two or three of the same kind of medicines, giving you two or three times the same side effects. Not good!
Also, about sleep apnea, ( which I have, by he way, but before I had ataxia) even though it makes you very fatigued, I doubt that it would give you such extreme fatigue as to sleep almost an entire week end. . It could be a combination of ataxia, medicine and sleep apnea… Just my non expert opinion.
I wish you the best ! And as Zhez said, don’t be so hard on yourself!
Thanks to everyone who has taken the time to reply. It makes you feel much better to know you are not alone. Many thanks xxx
Hi,
Morning after a good night’s sleep is cheerful and I exercise and cook. As the evening approaches I am tired and feel like idling. No inclination to socialize but happy to be left alone!!! I am not depressed either. I have learnt to space my activity and carry on.
It's the nature of ataxia, this fatigue thing. Personally, nothing surprises me with ataxia anymore, although it continues to be very frustrating and challenging (I was diagnosed 10 years ago, although i believe I had small symptoms before that). I rest when I can (during the day, if need be) and try to get enough sleep at night. Also, I find doing exercises for strength and balance gives me a bit more energy. Also, I try to eat as healthy as possible (lots of veggies and fruit). Keep a positive attitude, do the best you can! My best to you..., ;o)
zhez & bev,,
I hv sca2 and hv leg (toe) cramps. I take potassium for this. that's the main ingredient in bananas.
mas
Zhez said:
Hi Beverley, sad to say alcohol and opiates will make you even more depressed, they don't mix. I used to get leg cramps really badly, I now eat a banana every day and I haven't had them for months, sounds to simple but worth a try. Haveyou tried Marmite? It's packed with B vits which help to cope with stress and depression. I've been there with the depression, it's a great black hole and I really feel for you. Be kind to yourself and you'll find you've got loads of friendship and support here! Take care, Z xx