This is Part 2 of Finding the Why.
The previous post talked about why I chose alemtuzumab treatment, and what I hoped to gain from it in terms of long term and (with hope and optimism rather than expectation) short term health benefits.
But just as important is to focus on why those health benefits matter to me. Why does it matter if I have a bunch more relapses? Why does it matter if I can keep on walking well, or if I just toddle around as best I can? Wouldn’t that be good enough? Couldn’t I just live with whatever MS has in store for me? People do.
I’ll just leave this link here, to an article on the MS Gym blog that makes more or less the same point.
It isn’t self-evident that the benefits of alemtuzumab will be truly, viscerally worth what I am putting myself through to get them. Because, make no mistake, when I am going through the treatment, the treatment could well be truly, viscerally awful. There will be infusion reactions, possibly very unpleasant ones. And, even at the best, sitting in a hospital room day in day out for a week will be a challenge in itself – mind-numbingly and frustratingly tedious. When I’m going through that, my guts will be tested, and my courage may fail. And that’s ignoring, for now, the long term side effect risks.
What will I think of then?
Because I know how my mind works, what I need to focus on are short term goals, measurable objectives, stuff I can see myself doing – achieving – enjoying, thanks to alemtuzumab. Things to look forward to.
Item 1. A summer of fun.
I plan to go on adventures. Day trips and weekends with friends and loved ones. New places, new sights, new experiences.
I already have a few in mind:
- Hot air ballooning.
- A camping trip with just myself and the kid.
- Getting some full value out of our National Trust & English Heritage memberships.
- Climbing new hills.
The camping trip in particular requires either a specific mobility improvement (foot drop improves to the point where I can drive our campervan) or a specific lifestyle fix (modified pedals on the van so I can operate them despite my dodgy ankle).
The hills – hopefully – will signal a return to “normal and capable”. To be fair I will be testing this out before I even get the treatment. There is a long-planned trip to Snowdonia to tick “Climb Snowdown” off my bucket list. This was always going to be something of a challenge. But I’ve been working on my fitness all year, up to this relapse, so it is no longer a simple “can I get up a mountain” question. I know I can – we climbed Sugarloaf Mountain in April to practise! Now the challenge is “can I overcome this foot drop enough to get up a mountain?” The answer is, I don’t know. But I’m determined to find out and I’ve bought myself some trekking poles which will help, I hope.
The other adventures are to remind me that, even if my mobility is crap and I’m struggling with fatigue, there is still fun to be had…
Item 2. Get driving.
This links in with the above. I am working on the ankle using the MS Gym. I have also started the process of getting a driving assessment and advice on vehicle adaptations. I’ve also asked at work for advice or help from occupational health as I can’t do my job effectively if I’m stuck working from home. So it’s a multi-pronged attack. I have every faith that at least one of these will bear fruit!
Item 3. A leftover challenge.
I turned 40 last month. In preparation for this moment, and in order to avert any impending mid life crisis, I set myself five 40-themed challenges.
In keeping with my efforts to improve fitness and strength, and my new-found enthusiasm for same, they were all physical challenges that seemed a little beyond me at the time:
- Run 4 kilometres without stopping
- Swim 40 lengths
- Climb a hill with at least 400m of ascent
- Cycle 40 km
- Walk 40,000 steps in a day.
As my birthday approached I had ticked off four out of five, but had yet to do a walk long enough to clock up 40,000 steps. Then my balance and walking started to go downhill and this latest horrid relapse interrupted my plans. I managed to remain in denial about the symptoms until the day after my birthday party (when I finally got my stick out of the cupboard and accepted I needed to call the MS nurse) – but my denial didn’t extend to tackling the necessary Big Long Walk…
So item 3 is to tie up that loose end. I have a walk planned. It’s a circular walk around a loop of the Severn, which I calculate (well, guesstimate) should get me to 40,000 – or at least, close enough that I can make up the difference by walking around inside the house when I get home! That will be very satisfying achievement. 🙂
Item 4. OMG triathlon!
Before this relapse hit, I had entered a triathlon – a mini one, to be clear, but enough of a challenge for me! It’s happening in September and I was very, very wary about entering because in my mind was “what if” – what if I have a relapse and can’t do this? Long term plans seem stupid when you have no idea whether you will be capable of following them through. But nevertheless I bravely signed up and here I am. Had relapse, still doing it?
I am bloody-minded so I think I am still doing it.
The 500m swim will be fine. The 13km bike ride should be OK, although so far I have only just got back on my bike post-relapse and wobbled 2km to the supermarket and back – but I am sure that, if I survive alemtuzumab, it won’t take long to regain confidence on two wheels. The running I am trying not to think about. It’s only 2.5km but at the moment I can barely jog from the toilet to the sofa! I still have 2.5 months though…