I’m one of the more optimistic people I know and if I’m being honest there are no good days.
The bad just range from not so bad to terrible
However having a Neurological Condition that constantly has me on a fair ride followed by a red eye flight after a hangover…
If you are dealing with the loss of function or weakness you have your hands full! To add this brain vertigo nystagmus discomfort and constant body/head stress I do feel may be the reason for NO good days.
Anyone out there feel similar? I hope to make sense.
Love them in your heart and wish them understanding then let that go. They don’t have a clue. Period.
I go through so much the same. This is isolating. I feel for you xoxo
It’s always them, repeat it to yourself. God bless them and all that stuff
They are showing clearly they can’t be leaned on, don’t try to convince or WISH them to know. Just go, you’ll find the ones hopefully who can be leaned on.
It’s not fair though! Not at all.
Also, I let the house go to Hell all around me for a couple years. My brain was just like NOPE we can’t do that, feels bad lol.
My little bit of advice is get a routine, get it done, then rest. It hurts but it can help you mentally in the long run. IF you can do what you can to get mini tasks done for 3 days, see if it helps mentally which can lead to physically being better in the long run xo
Louise, go to Walmart or wherever, and just try walking around holding onto a Rollator. You wouldn’t believe how much it frees your mind, grounds you and enables you to focus properly on your surroundings It’s gives you the same sort of confidence as holding onto a supermarket cart but with more manoeuvrability I often get by using my walking stick, because like you I have an aversion to been seen using the Rollator, unless it’s I’m having a bad day and then there’s no option. And quite frankly, on those days, been seen with the Rollator is the least of my problems
Re getting into a routine. I think you hit the nail on the head Louise, it helps me enormously if I can get up in the morning with a plan of sorts in place. This may need to be flexible depending on how focused I feel but it definitely helps psychologically, and ultimately increases my motivation Of course this is definitely interspersed with regular rest periods xB
@Louise78 I have a 4 year old son who is abnormally large and strong (picture Conan the Barbarian as a little boy). He is already stronger than I am and can easily push me over.
I used to have some friends who would say to never run downhill with dogs if you had ataxia. Now I know the real danger. Bending over a bathtub with ataxia trying to wash the hair of a struggling little boy. Basically, you could do a mad libs here and insert any activity with the ending of the sentence being “…with/of/to a struggling little boy.”
Thank you, I might try that. My family physician’s mother had MSA, so he knows first-hand how to treat my symptoms. I guess that makes me lucky in some ways. I will be sure to mention Adderaral on my next visit.
I have to say, using a walking stick/cane/rollator lets others know we struggle to navigate entrances etc. I have made a special mental note of the kindness I have recently received in public from others. Holding doors, moving things to make room for me, and he list goes on. I am really surprised and in awe by the compassion and generosity of others. Maybe it’s just the area I live in, an area with thoughtful, kind souls. (I live 2 hours north of Toronto Ontario, Canada). What a good day is.
Yesterday afternoon was one of my good days. After I went to the gym I felt like my balance and equilibrium were much better. I went home fell asleep for about an hour watching TV and when I woke up everything was back to where it was as a bad day. What a strange disease this is.
It’s a great feeling when you can still recognise you’ve had a good day. On Saturday morning I went for the winter Flu shot, and after last year’s experience I was prepared to feel a bit flu-ish afterwards.
But I ended up having 3 shots…Flu - Shingles - Pneumonia And by Saturday evening I was starting to feel poorly, with Sunday passing in a bit of a blur.
Finally yesterday I seemed to have come through it…and today has actually been a great day
Now that is a serious accomplishment. Filling a wheelbarrow even once and making it to your destination without tumbling and losing the contents would be an awesome day in my book. I have an acre of yard, wanna come help .
As it happens, yesterday wasn’t a good day…My ataxia seems to worsen in cycles, and yesterday had every sign of being one of them…
As usual it kicked off with a bout of heavy sneezing and worsening balance…
But today…I feel so much better
I keep thinking…roll on Spring, when I’ll feel more inclined to get out for much needed fresh air…Being bundled up in heavy Winter clothes is so restricting. We’ve had some beautiful bright days (today included)…it would be nice if it was warmer
I hope you don’t have any lasting effect…
Falls really do knock the stuffing out of you…they effect confidence.
My most recent aggravation has been a change in eye
problems…These go hand in hand with poor balance.
A few months ago, I saw a Specialist who told me my blurriness could be Cataracts, but he wouldn’t recommend surgery since I had a history of Iritis. Instead, he recommended tinting the lenses of my glasses, and adding an anti glare film. I did this, and found it didn’t help at all with blurring. It was an expensive exercise
Now, I find vision is much improved wearing an old prescription of glasses …
Constant fluctuation in symptoms is so confusing …
Thanks for your concern. The eyes are the windows of the world. Those folks with their health do not understand what that means. My eyesight is pretty good (except for reading) but bright sunlight affects them because of sensitivity. I have to work with that. My vision glasses have transition lenses that get dark but not in the car. In the car I also have sunglasses. Some times I feel like I’m falling apart
Symptoms, and the limitations they impose, can be almost overwhelming at times. I have ‘episodes’ when this happens, and then I just can’t rationalise the situation.
Despite the fact that I’ve been experiencing my specific symptoms since the 1990s, I can’t say that I’ve ‘accepted’ the situation. Getting used to something is totally different. But I still go to bed and wonder if things will be different the next day…
My two main ‘stumbling blocks’ are changeable vision and dizziness affecting my balance…if only one of these could be dealt with successfully…When I’m on my feet I feel so disorientated, and there are times when I wonder if a wheelchair is the answer…But obviously I want to walk…