Hi Everyone,
I’m hoping to get some advice but mainly just to get some bits off my chest so apologies in advance.
I wondered how everyone deals with symptoms when they flare?
I have been really struggling over the last few months, I am a self employed trainer who trains young people and new trainees that would like to teach/further their qualifications. Over the last few months I have found myself tripping, stumbling and limbs slowing down. I have managed to get round this so far however the last couple of months I have started mixing up words or not being able to find them at all. Again I managed to get round this for a while however now it is becoming noticeable as several clients have mentioned in passing about being forgetful or ‘having one too many last night’
I am not offended but I have not started to lose my confidence in my teaching. I first thought I would give up training advanced clients and keep to beginners but this last couple of month has really got me thinking.
What happens if I feel I cannot keep training? My job is my life and all I know would I then need to get employment elsewhere to cover the bills?
I have spoken to my MS nurse who is organising some medication so thing may I hope go back to know email but what happens if not?
Any similar stories both positive or not would be great as I would like to be prepared.
It’s difficult being self employed. You can’t very well expect adaptations and occupational health to be available to you.
I was a trainer in my former life so can understand exactly how you are having trouble.
What might help massively for the cognitive issues is a drug called Modafinil. It’s not that easy to get nowadays, but it might be useful if you could try it. It’s actually licensed for narcolepsy and often people with MS fatigue used to be prescribed it. But it sometimes also sharpens up cognitive processes. Which would (if you could get it and it worked the way it does for some people) help.
If your GP or neurologist is unable to prescribe Modafinil, you could try Amantadine. It is easier to get prescribed for MS fatigue. And that in itself could help with your cognitive difficulties.
Talk to your MS nurse about drugs for fatigue. You might feel you don’t have significant fatigue, but cognitive problems are definitely made worse with fatigue. And the drugs to help fatigue can help cognitive processing.
The physical problems you perhaps won’t be able to do much about, but I would suggest you get a stick or a crutch. Even if you think you don’t need them, it would at least signal to clients and trainees that you have a physical problem and stop them thinking you’ve had too much to drink the night before. Getting a crutch in particular might actually help you to be more stable.
I should imagine training without confidence in yourself is difficult and not as successful.
I do hope you find some way of regaining your mojo. If it’s a job you’re normally good at, and enjoy, not to mention getting paid for it, then you need to find some way of doing it effectively.
Hi syd. Not sure from your post if you are newly diagnosed or its new systems.
But their are solutions to most things ! I am rubbish at names - name badges
I am dislexic as well as having ms,
lol what a combination.
Its probably quite relevant what you are a trainer in.
power point presentations are great. If you lose your words you can put it up & turn it into an interactive session.
It may well take a lot of thought, but having issues with words is possible to get around. It’s all about excepting your own limitations and then you can find solutions. Rather than getting cross with your self, except, use your skills to find yourself solutions.
Don’t lose respect for yourself or give up! Also, you are a trainer, you could give up in case you are ‘judged’ or you could help educate. A lot of people with ms ‘wabble’, and have talking issues, how great to just tell your trainees, to explain the things ms has done to you, but, you ‘still’ know your stuff.
its a big big thing to accept our disability, I had already developed a thick skin being dislexic.
So yes the drugs may help. But personal exceptence and the strength to share what you may not want to I personally believe is even more worth while.
feel free to ignore my comments, these are things I am very passionate about.
good luck with finding a solution that works for you