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.

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This post is already way too long and I’ve only done four! What else did I miss?

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Comments

View Comments (9)
  • anitascott
    8 months ago

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  • north-star
    5 years ago

    1. I’m so glad I didn’t know everything MS could do to me. I knew I had it, saw the MRI results, but I took things a day at a time rather then researching as I usually do. Everyone’s MS is unique, I’d rather not brood about something that maybe could possibly happen while I’m trying to get to sleep!

    2. I’m a two disease person (Crohn’s is #2) and it can be tough to sort everything out. I agree wholeheartedly with Fichendich’s neurologist. A good internist or GP (especially one with a nurse-practitioner) is crucial. Keeping your body in good working order is important. Even if it regularly lets you down.

    3. For various reasons, I kept my MS a secret for ten+ years. It really worked for me. People are unpredictable and as long as I could pass for normal I never brought it up. People do treat you differently once you “come out”. Some are wonderful, others are very uncomfortable with disability. If your workplace doesn’t value its employees, silence may be imperative if you don’t want to experience the job horror stories I’ve read here.

    4. The last thing I wish I’d known earlier was at some point (if you are female) you may need a vibrator to participate fully with your true love. I have a little purple one we named Buzzy. It’s only embarrassing the first time you buy one, I promise.

    That’s my random, very unsolicited, advice!

  • FichenDich
    5 years ago

    My very first neuro said the same thing at the end of every visit. All neuros should be the same, at least at first. “Just because you have MS does NOT mean that you can’t also have _____.” (insert other illness) What he meant was that just because you have MS it does not spare you other maladies that affect the health.

    People with MS can also have diabetes for instance, so watch your diet and try to exercise. What he was trying to instill is that you should stay in touch with your primary care physician. Over the years that has proven to be extremely sage advice.

  • Jeanne
    5 years ago

    I totally agree with you on these. I especially agree with you on the “Blue Badge” (love that). I thought I sure don’t need it but my doctor had me fill out the paperwork and he did too…BOY am I glad I did it. Last July I had a relapse and could not walk very far. I was so glad I was able to park near the front of the door to the grocery store and shop. It helped me keep my independence during that time. I only needed to use it for those two months but was glad I had it and am glad I will always have it when the next relapse happens. Thank you

  • Susan
    5 years ago

    I laughed at the counting backwards from 400 by 3s. Although I don’t (yet) have the bladder issues, I still use this distraction technique during MRIs. I count backwards by 2s or 3s; I do difficult multiplication problems in my head — anything to distract myself during that long noisy claustraphobic experience.

  • PegLeg
    5 years ago

    attitude.. you have to have a good out look on this,or you will do poorly with MS.
    also do not listen to well meaning people, who say,”so and so does this for their , and they are cured” We all wish for a cure,

  • SarahJ
    5 years ago

    I was shocked to figure out that some people with MS have some sexual side effects. I was diagnosed with MS after returning from my honeymoon having seizures. Fun! 😉 Learning the issues were MS related brought huge relief, actually.It would have been nice to be warned of such thing.

  • Christie
    5 years ago

    Your insights were wonderful, thanks so much for sharing. I only wished there was more.

  • Steve Woodward author
    5 years ago

    Thanks so much – I really enjoyed writing it!

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