Extreme fatigue and loss of balance

[pippa620]

Hi to all suffering from this horrible "MS".  The symptoms are endless but hard to cope with, a day is long when you struggle with everything from going to the loo, shower, dressing and the day begins. What a day it can be, falling, tripping and housebound because the ataxia is so bad anyone who looks on this you've had one over the limit. How do you cope with the symptoms, of which I say seem endless at the moment? Try as I might, some of the most easiest of tasks are downright impossible for me, so bedtime is just a release, even then I feel as though I could fall out of  bed.  Does anyone have any suggestions? Resting is good but so boring, when even reading is difficult.
Daisy

[pippa620]

Hey really kind of you for your advice.  You hear where I am coming from, I'll use this site daily because comfort and support from others in our position is reassuring you are not alone and it just gives me and, I hope you, some positive reassurance that we can fight this, albeit lonely at times.

Thank you so much once again.  You can clearly type quickly and well without errors unlike me at times.  I can no longer work due to CRPS in right upper limb following MRSA bacteria, so really I am lucky to be here.

I'll keep in touch db.
Night night God Bless

[doublevision1]

Hi Daisy!

I posted earlier today asking people what they have done, practically speaking, to adapt to their MS, and added some ideas of my own.  Perhaps you'll find this helpful in terms of finding ways to cut corners and conserve energy.

I can relate to some of your frustration.  I've been off work for 7 months (since dx) with extreme fatigue, double vision, dysthesia.  I recently had a second relapse which was a very unwelcome turn of events.

I've had days where I'm bored nearly to tears.  When I'm working, I'm a workaholic: in the office every day at 7am, rarely stop for a break, and put in 10 hours doing challenging work (mentally, not physically).  Having things grind to a halt has been a huge challenge for me.

Like you, reading was difficult for me too, with my double vision.  However with some improvement I can read a bit more now, and I am so grateful for that. Have you tried audio books?  I haven't, but others seem to like them.

Watching TV gets tired but I have a little routine now of certain shows I watch, then I turn it off so my brain doesn't turn to mush!  

I exercise when I can, which is maybe a few times a week when I'm not relapsing.  With your ataxia, you need to be careful but maybe you can do floor exercises, ie: stretching and light resistance training?  I have a great book, "Exercises for MS" that covers all of this.  

I stay in touch with a lot of friends through email and phone.  I have a friend on maternity leave who visits me often, which is wonderful since all my other friends work full-time.  

I love to cook and do it as often as I can.  I have no ataxia but get tired standing, so I've ordered a bar stool so I can sit at the counter while I prepare food.

Developing a routine of all of the above, and trying to stick to it even when I don't feel like it, has been very helpful to me.  Early on in my illness, before I did this, the days were endless and purposeless and I think I may have been on the edge of depression.  I've had a lot less bad days even though it can be boring and lonely at times.

This forum gives me a constant place to check in every day, and chat, and learn.  I hope you stay on and find it as helpful and supportive as I do.

db