my daughter is leaving the country soon to start a new life in rural Sweden, so she came for her final visit this week to say goodbye to family and friends. I will miss her terribly but I know she is going to have a fantastic time with lots of clean air and exercise. We’ve had a great couple of days and celebrated my sons 21st at the same time, not too exerting and a quiet pub lunch was had. But now she’s gone home (she lives two hours away) I’ve slept and slept and feel completely drained, I had a full nights sleep and have had a good four hours today. It feels like I’ve been out drinking (I don’t touch a drop of alcohol) and I’ve had the most awful headache all day. My balance is way off today too and im assuming it’s because I’m so tired. It’s times like this that I get upset as it’s obvious I’m able to do less and less as time goes by. I hate feeling this way
Hi Gail tiredness affects my balance to and about one a month I get a headache that lasts all day. I can understand where your coming from saying you can do less and less as time goes on, it makes me sad too but it’s part of this horrible disabilty and I try not to think about it too much I just wish there was a drug to delay the symptoms or even better a cure .
This does get worse with time. It’s 10:30 am and I am going back to bed. Maybe I’ll sleep all day. What can I do? Nothing, SLEEP. HOpefully tomorrow or even later today I will feel better. I also have a lot of muscle pain. So I’ll have some protein before I sleep. I hope you are exercising without over doing it, it really helps with the fatigue. Listen to your body, it knows best!
Hope you feel better soon.
Hi everyone, I understand so well what you are feeling. I have leg pain that wakes me up several times a night. I am always tired. Exercise makes my legs hurt (I still do it). My vision is different every day and I blamed that for the headaches but maybe headaches are part of this. My balance gets worse with tiredness. I feel so useless. I have elderly parents that I cannot help with even small things. This is horribly depressing. Thanks for listening and thanks for sharing, it really helps.
Gail ! Do you think these are signs of something serious?? Maybe you should seek some medical advice and tests b/c fear of not knowing can cause malaise and tiredness..Your Dad would agree,I'm sure..:-)
Take care Ozzy
Tiredness is part of the game. The doctors will tell you that. I have slept 24 hours at a time. Just a part of SCA. Don't let the disease rule you. If you feel like going out and enjoying an evening GO! If you spend the next day asleep don't worry about it that is part of SCA. You have to learn to live with it.
Dear Gail2014, Ah yes. fatique is a common theme with ataxia, especially if we over-due! I just try to live my life the best I can and rest in between! For instance, my husband and I had our four adult children, three grandchildren (son's), daughter-in-law and three daughters boyfriends over for dinner last night. I prepared a bit at a time in advance, and, of course, my husband helped as much as he could. In spite of my advanced efforts, I had a back-ache all evening from moving about, etc. No one knew, as I didn't say anything. Feeling a bit better today, although tired! But all was worth it, as getting everyone together is truely priceless and definitely worth a back-ache and fatique, at least for me! Today I'll rest... Hope you feel better! ;o)
Thank you all for listening to my rant and sharing your experiences. I felt much better yesterday and the sun was shining so I thought I’d go and do a bit in the garden. Ollie my one year old cat came with me, the first time he’d ever been out and he was having a great time. I didn’t over do it and listened when my muscles told me to stop so i sat and watched Ollie play, he chased a huge queen bee which managed to get away. We went in to have a sleep and he stayed in his bed after id woken up for tea. He came downstairs a few hours later and his paw and leg were massively swollen! The stress and upset sent my balance off straight away and I could hardly stand as my husband rushed him to the emergency vet. Turned out the queen bee had stung his paw and he’d had an allergic reaction, he could have died. Today he’s less swollen but very tired
Oh my, Gail, and you and Ollie were just having a good time! Glad he'll be alright and kudos to you for getting outside in your garden! ;o)
I think you also need to remember the effects stress can have on us, as a mum I know I would be like you and wish the best for my daughter but that wouldn't stop me from firstly, worrying about her and secondly missing her like mad. All these thoughts will be going around in your head using up lots and lots of what little energy our bodies can muster.
So allow yourself to rest up and remember how hard emotions are on our systems.
I hope Ollie is feeling better soon poor little thing, x
No Gail, I don't think you have been overdoing it. I am in the same situation here, Our son is about to leave to travel low-budget the Latin American countries: Panama, Costa Rica, Peru, Cuba and whatever else crosses his path. He is leaving for an indefinite time, doesn't know when he will be coming back. And this all on his own. I'm not too happy about that but you have to let go, right. They have to follow their OWN path. All we want is our children to be happy..happy AND safe. The last is the one that's worrying you. It keeps spinning around in your head..and already tired as we are, this emotional thing of letting go is exhausting. I truly hope that things will get better once he has left and hopefully having skype contact on a regular basis to only hear that he's doing great out there. Same counts for you when your daughter is in Sweden.
Mums huh:) really time to cut the biblical cord once and for all.
Thanks for your reply Elle and i totally agree with what you are saying though my daughter left home six years ago to live in a different part of the country which is a two hour drive away. Ive got over the part of missing her with the help of facetime and skype but it’s the thought of her being in a different country. She’s always been the adventurer of the family and I knew from when she was young that she wouldn’t stay in one place for too long. I really admire her zest for life and love to hear her stories of her travels but the one nagging thing that is stressing me out big time is that she will be riding all the way on her motorbike which will take two days at least. She’s never ridden that far before and the worry is unbelievable
Same here Gail. Our son left last week on a roadtrip to the south of Spain, not the touristic east coast, but to western Andalusia. Two days drive. He wanted to take more stuff with him than possible on a plane: guitar, books, laptop etcetera and the adventure of a roadtrip 2400 kilometres triggered him. You can't believe how relieved I was once he let me know he arrived at his destination:) yes YOU can! He'll be staying there till beginning of April to cross the Atlantic beginning of May and once there low-budget backpacking the Latin American countries. Brrrrrrrrr..
And I know exactly what you mean: our son left home in 2008 BUT was still IN the country, helluva difference than being abroad huh. We'll keep in touch, okay. Strength and trust we need here..not to be bought in any local supermarket though, darn shame!