It often feels like MS is a series of problems that need to be solved and overcome. For example;
- I couldn’t walk well so I got a walking stick.
- I couldn’t get into the bath so I got a walk-in shower.
- I couldn’t move my feet properly so I got an automatic car.
I can cope with overcoming obstacles and consider them challenges rather than problems but what I get frustrated with is the constantly shifting horizon. It would be great to feel like a problem is solved for good rather than temporarily, until the next relapse or progression.
The walking stick, for example, didn’t help for long and I soon realised I needed a more robust solution! I invested in a scooter 3 years ago and it’s been life changing but I rely on it more and more and now can’t function without it.
An automatic car didn’t completely solve my driving issues either and I now use hand controls to drive safely.
The latest problem to be solved is my shower as I can no longer reliably lift my feet over the small lip into the stall. This issue has been temporarily solved by the council as they’ve fitted grab rails to help me get in and out but I’m already looking forward to when this is no longer an adequate solution. At some point I’ll need a wet room to safely keep myself clean but what else might be lurking in my future?
I’ve recently started working from home one day a week and have a special lap top they let me take home. This has solved the issue of getting burned out with mid-week fatigue but is this the slippery slope towards being unable to go into work at all?
I have to look on the bright side really and view these changes and adaptations as there to make things easier but I do worry about the future sometimes. The next problem to be solved for me is the dreaded self-catheterisation but this requires a post all of its own!
This is what I find hard about MS; knowing if things are permanently rubbish and need adapting or temporarily “glitching” and will improve.
I’d love to hear from other MSers. What adaptations have you found the most useful? Which ones have you found hardest to cope with? Are there any you refuse to implement?