Missing. Inaction …


This relapse (spike in symptoms/exacerbation/whatevs) has drained me.

After falling face-first into some gravel, things have progressed steadily downhill.

Plates have been flying, I’ve become intimately acquainted with every wall in my house – and discovered every sneaky cobweb – and to top  it all, vertigo descended yesterday and has been plaguing me ever since.

These last two weeks have been an exercise in containment – getting away with as little as possible to keep up the facade that I’m ‘doing OK’.

I’ve cancelled meeting up with friends. I have a birthday present to deliver that’s now three weeks overdue. I won’t be taking guitar lessons for the foreseeable (long story). Life, for the moment, consists of a need-to-do basis.

I had an initial meeting with my dissertation tutor and I agreed to hand in 7,500 words of a novel by mid-September. Lol. I’ve written just over 100. To be fair, they are excellent words and it’s just a shame there’s not more of them.

I’m becoming a little fed up of lying on my sofa after work with a Dulux paint chart, eyeing up the walls, just to pass the time of day. I’ve bought a tonne of gossip magazines, caught up on my Sky Planner and watched a wide range of subtitled films. My head aches.

I hate being forced to do the minimum; I am a doer, not a wait-er. I would rather drag myself to work than lie in bed. However, I might just be made to do that very thing, and fairly soon. The endocrinologists agreed today that after two years of yo-yo medicines, I will have an operation to remove my thyroid, as I developed Grave’s disease, a 1-in-3 chance of having Alemtuzumab treatment.

It was a chance worth taking, but the logistics will take a little working-out. Two weeks off work, unable to move my head and the possibility of a husky voice; the last one seems a fairly benign symptom though. Mariella Frostrup?

Anyway, as always, life has to go on and I am co-ordinating from The Sofa HQ. I watch the hours passing on my clock. I go to work, get home, collapse, go to sleep, get up and do it all again. Why? I don’t have a choice.

Today, I met a new endocrinologist. He was reading through my file as he ushered me into the non-soundproof clinic room.

He said to me, ‘Wow, for someone with MS, you do a lot, don’t you?’

‘Yes’, I answered.

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18 thoughts on “Missing. Inaction …

  1. Tricia says:

    Wow your amazing. Keep on fighting. Xx

  2. Tamara says:

    All credit to you that, ‘for someone with MS, you do a lot’.
    I realise it is only one thing on your list, but your posts have really got me through since my diagnosis. A big thank you.
    I hope this period passes soon for you.

    • stumbling in flats says:

      That’s really lovely of you to say, thank you!
      Having a slightly better day today than yesterday, so fingers crossed 🙂

  3. Rob Denholm says:

    I like a lot of what Wayne Dobson says about his MS. “Everyday is 100% average,” is my favourite.
    Being positive is the only way forward in my opinion and I tip my hat to you again. My teaching career is coming to a stumbling halt on the 31st August but positivity is a must. Can’t do carpe diem as dexterity issues won’t allow it.

    • stumbling in flats says:

      I love that!!
      Having a positive attitude definitely helps – I remember only too well the dark days following my diagnosis and am so glad I’m through that stage

  4. With the beneit of hindsight ……. Why can’t we have some foresight for these sort of issues then lfe would ve a lot easier.

  5. Rob Denholm says:

    Post diagnosis sucked! It felt like everyone I spoke to knew someone with MS and they were really keen to tell me how much they suffered! Hey, thanks for helping me out but if you could just poke me in the eye instead, next time, it wouldn’t be as uncomfortable.

    • stumbling in flats says:

      That happened to me too! So many people seemed to have an auntie with the most dreadful MS. Just dreadful.

      • Rob Denholm says:

        Haha! The second ‘dreadful’ brought a tear! Words of near strangers, could be such a comfort. The, “It’s not that bad; it only comes in waves.” was also particularly helpful.

        • stumbling in flats says:

          That’s so true. And it really is like that. I think I’ve learned to roll with the punches; yesterday was a good day, today isn’t shaping up too well. I guess it makes us appreciate the simple things so much more!

  6. Rob Denholm says:

    Day trips used to be fun, now I have to factor in recovery time. Took the family to the beach today (because the weather sucked and it meant less people for the dog to harass ) and I am now well and truly paying for such an unwise decision! I’ll stop spamming your comments section now!

    • stumbling in flats says:

      You’re not spamming!!
      I know what you mean about recovery time and you’ve been very brave going to the beach – I haven’t been near one since my MS diagnosis. Thankfully, The Teenager goes with friends 🙂

  7. Rob Denholm says:

    It’s the third time since 2006 and it’ll be a nice break, until I go there again! Fortunately the beach I went to is OK to get across as the sand is nicely compacted, as opposed to the Sandals holiday type, where it’s like talcum powder.

    • stumbling in flats says:

      The beach near us has a whole load of huge stones before the sand. Just won’t happen without a huge mishap!

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