Random Unsolicited Advice for the Newly Diagnosed
Or things I wish I’d been told…
1 You have been diagnosed with a disabling health condition. To put it bluntly, you are now a Disabled Person. And, unless some scientific miracle occurs, so shall you remain. It's not a great position to be in but this is where we are. It might even turn you into a better, less self-obsessed, more empathetic person. Certainly worked for me!
(And as a related aside, some people around you can handle what’s happened, while some can’t. You’re better off without.)
Nobody told me I was Disabled at diagnosis. It took the daughter of my parent's neighbours (a health worker) to say that I was and therefore entitled to apply for...
2 A Blue Badge (or Disabled Parking Permit).
First up, anyone who views this or Accessible Parking Spaces as some kind of a PERK is a moron.
I think of it more as a LEVELLING OF THE PLAYING FIELD.
For example, if somebody without a health condition like MS wants to go shopping, and they live close to the city centre (as I do), they have a couple of transport options - they can drive or walk in. If I tried to walk to the shops, I'd be exhausted before I’d even begun to start complaining about having to go shopping.
Quite frankly, my parking badge is a total life saver, although it took me quite a while to get over the weirdness of using it for the first time.
The few times that people have looked at me accusingly for parking in an accessible space, I’ve smiled sweetly at them and gone about my business. Life’s really too short.
3 You may find that you need to use a Walking Stick at some point in the future. This can easily turn into one of those "Woe is me" moments - it did for me when the first stick I had was a stripy cane that Willy Wonka would have called "a bit over the top". The first stick I stuck with was actually a hand-me-down from my 92year old Grandma, which was quite the slap in the face.
My current stick is one I was actually measured up for at the hospital at my annual MS check-up. TOP TIP: If you stand up straight with your arms flat at your side, the handle on your stick should come up to your wrist.
I guarantee that if/when you do start walking with a stick, you'll be amazed by the amount of otherwise healthy-looking people you'll see going around with walking aids. Plus a stick is pretty handy for pointing at things in the distance.
A walking stick – or a wheelchair – is a tool that helps you to engage with your life. No more, no less.
4 You’ll read a lot of stuff online about Bladder Issues – you may have them, you may not.
This is one of the cruellest tricks that MS can play. Most people are diagnosed in their 20s and 30s – not really the time of life where anyone thinks they need to be worrying about wetting themselves in public.
I’ve gone through a couple of medical interventions (Oxybutynin [like having all the moisture sucked out of your body] and Solifenacin Succinate [MUCH BETTER]) and done a whole bladder retraining program. It really is a thrill-a-minute (especially measuring all my INPUTS and OUTPUTS to fill out a Voiding Chart) but now I can (pretty much) control my bladder like a ‘regular’ human adult.
Another TOP TIP: if I’m walking or driving anywhere and I get the urge, I distract myself by counting down from 400 in 3s. Sounds mad, actually works.
This post is already way too long and I’ve only done four! What else did I miss?
How many specialists did you see before finding "The One"?