Fatigue

[Piero]

I am 74 years old and when I was 68 I was diagnosed with 'late onset SCA' I have accepted the presence of the condition and its inevitable progress, probably because it emerged towards the end of my life. I receive good care from my local hospital {Cardiff} and my family, taking the lead from me, doesn't make too much of a fuss over my state. The fatigue however, which you all doubtless experience, makes me foul tempered. The sheer exhaustion, the inability to sometimes lift a pen or think through a decision makes me very bad tempered. Its irrelevant to me that others may understand, I have no wish to manage through the forbearance of others. How do you all cope?? I'd be really interested to know and to learn.

[springlove]

I'm 73 and am always tired. Most times I give up and go to bed even if it is brilliant daylight. Not having any family, I don't get visitors so am bored most days. Trying to walk with a stick and dodging all the pedestrians wears me out. But we must persevere. So I do but it's difficult. Sorry I can't be more positive.

Jean

[Piero in reply to springlove]

Thanks Jean for replying. My main concern over fatigue is that I become so unspeakably irritable when I'm really tired and very often I only recognise that in retrospect.

[Libra7]

Fatigue is a well documented symptom of our condition caused in part by having to concentrate all the time when walking in an attempt to not fall over! It’s important to pace oneself and try not to reach the stage of total exhaustion. If I don’t do this I usually find that I get very weary around 5pm - just at the time when I need to think about preparing supper and then I hardly have the energy to eat it. The secret I think is to take short rests - perhaps for just 15 minutes or half an hour 2 or 3 times a day. If I’m going out in the evening I make sure I have a 2 hour rest in the afternoon. I am always in bed by around 8.30pm though like to watch TV or read until about 10pm. Hope you feel better soon!

[Piero in reply to Libra7]

Thanks Libra. I need to address my irritability with others when I'm really tired instead of relying on peoples' good nature. As you suggest, a regime of breaks and rests would take the edge off the fatigue and hopefully make me more amenable.

[ninotchka in reply to Libra7]

Yes! I love napping. I like to take a long nap in the afternoon. It is like sex -- hah!

[Piero in reply to ninotchka]

Thanks Ninotchka. As for what its like ....... I can't remember!

[wibblywobbly]

hi, I have a 2 hour siesta nearly every afternoon. I find I can miss this usually once a week without deteriorating too much.

I just can't function at all otherwise. I feel ill, I start to fall over, I just can't think anything through.

This siesta does change how I organise my life and there's lots of things that I miss out on. But I prefer to feel better so it's worth it

xx

[Piero in reply to wibblywobbly]

Thanks WW. I experience the same symptoms as you when fatigued. Depressingly after six or seven years the downward spiral continues. Ho hum

[Meekster]

I also have a 2 hour nap daily. Yes it takes away my time but on the other hand it akso gives me back a little energy. This way I can still get up and think about what to cook and make dinner. It also makes it possible to have an evening. I get to play games or watch tv with my family and not fall asleeo (most of the time 😉). What I’m trying to say is listen to your body. If it needs a break, give it a break. No use trying to argue. It only takes more precious energy that we need. And like said sometimes a 15-30 min break can give you that little extra that you need.

Don’t get me wrong, I will always find it annoying having to pace myself but it works. And having something that works is better than batteling something that doesn’t work. If I need to lie down to make me a happier and better functioning person then I’ll take it.

[Piero in reply to Meekster]

Very very sensible. Thanks. Perhaps for many of us, including yourself, there are two other factors. Firstly its difficult to opt out for an hour or two if you've always been quite active. Secondly, I feel guilty crashing out, even though its essential. Thanks though for your sound advice

[ddmagee1]

Yes Piero, I have a similar problem. I used to fight getting tired and exhausted, and trying to fight my way through it, unfortunately, getting irritable at times. I realized that I wasn't helping myself and that, actually, I believe my brain needs a rest in the afternoon, from all the work it has to do. So I take a nap most days, and wake up refreshed, rather than keeping on going and becoming irritable. It is just a part of having CA. I also have Parkinson's, and I really do need to recharge the batteries each day, so to speak. Some in my family would criticize me, and say that is why I can't sleep at night, or it's not good for me, but whenever I get super exhausted and tired and can't think well, I do need to rest my brain, and it does help my irritability, and ability to think clearly. So, I do what I have to, and, really, if some people don't understand, well, that's their problem! They don't live with Ataxia and Parkinson's like I do!

[Marz]

In addition to your diagnosis I am wondering if you have considered other things causing the fatigue. I am 72 and have had a bumpy journey with health Having low levels of B12 - Folate - Ferritin and VitD can also cause fatigue and lots of other health issues. These are not routine tests at GP level and have to be requested.

A B12 result over 500 is good - Folate and Ferritin around mid-range and VitD over 100 in the UK... Having been on Thyroid UK for seven years where these tests are suggested on a very regular basis - the results have been dire in so many cases. Sadly even when results are low in the range you may well be declared 'normal ' - but we need to be optimal when unwell or older ! Always worth obtaining results so you can monitor your own health and see what has been missed !

b12deficiency.info/signs-an...

grassrootshealth.net

vitamindcouncil.org

As we age B12 levels drop due to lowered stomach acid and sometimes diet and medications can affect uptake. Also I have lived in Crete since 2004 and after several years still tested insufficient for VitD ! I now supplement VitD and inject B12 as I am without a Terminal Ileum due to surgery - where the B12 is metabolised before returning to the Liver.

Apologies for the enthusiasm

[Piero]

Thanks a lot. Fascinating! I've already spent a chunk of this morning on the vit b12 deficiency page. Thanks. Not just something to think about but something to actually do.

[Veteran250 in reply to Piero]

Hi Piero.

I am 75, and was actively doing walking and backpacking as a hobby, I served Queen and country in the RAF. When I discovered I had Ataxia and difficulty walking and keeping my balance, the RAF benevolent fund gave me an electric powerchair to use for as long as I need it to get out and about...... without it I would be trapped indoors.

As it is, when indoors I have the balance problem to deal with, my chair is beside the door into the kitchen, but if I get up to go into the kitchen, I generally end up on the other side of the room before I can get my balance, but life goes on and you learn to live with it!

Don. 👍😀

[Piero in reply to Veteran250]

Thanks for your response Don and for your sensible advice. Have a Happy New Year, I'm sure your ataxia isn't going to spoil it.

[KERRINGTON in reply to Veteran250]

Hi, I was visiting these posts on fatigue. I'm from the Parkinson's community. You might be interested in checking out HDT( HIGH DOSE THIAMINE ) on our forum. Thiamine HCL tremendously helps those of us with balance problems. There's tons of info on our site. It, the B1, also helps with energy, and feeling of well being.

[KERRINGTON]

Please see what I wrote to Veteran250.