Reading · 📝 Notes from an MS Lifer

Last month, battling heat and exhaustion, I parked my planned post and kept the wheels of my blog in motion by asking if readers would like to ask me anything.

Thank you so much for the thought-provoking questions, the answers to each of which could be posts in themselves.

So as the heat has subsided (for now) and I sit with a blanket wrapped around my legs to keep warm, here they are:

🦸🏻‍♀️ Richard asks: If you could choose one superpower, what would it be? How would it help you to navigate the world with MS?

My first thought was of an MS specific superpower, like giving myself the ability to walk without stumbling or using a mobility aid. That alone would make me feel like Lynda Carter in star-studded gold tiara and knee boots these days. But just plain walking is the average day-to-day for most humans. In that case I guess it’s all relative. One person’s desired superpower is another’s literal walk in the park.

I digress. And so, from all of the cool superhero comic book superpowers, which would I choose?

These would be handy:

The ability to fly, getting from a to b is never straightforward and often needs Olympic grade planning skills; ditto teleportation. Invisibility, I’d love to hide from stares and pity glances as I hobble along. And super strength, yes please add extra power to my weakened muscles.

Coming in way ahead of the others though is time travel. Also useful in a whole host of scenarios, but where MS is concerned, time travel could take me back to an era when my limbs never seemed overwhelmed by what I asked of them. I’d love to visit that place. Experience the things I really miss. Like walking and running on the beach late on a summer day with salty water dancing around my bare toes. Like crunching my boots on quiet snow or wading in autumn leaves. Like carrying a pint of beer in each hand across a lumpy festival field, back to join my tipsy friends.

Would it make me feel sad to feel that level of physical freedom again, knowing I had to return? I really don’t think so. Shouldering MS, as well as making me scream and shout, has helped me grow a little. And if MS has given me anything it’s the ability to be grateful not only for what I have now but for the simple and profound human things I perhaps took for granted in the past. To not only experience those things again but to fully appreciate them as I relive them would be a gift.

Perhaps if I truly evolve I’ll dare to visit the future.

👩🏻‍❤️‍👨🏻 Someone’s husband asks: How has MS affected your relationship with your husband?

Ok, you guessed it, it’s my husband. We’ve talked about writing about this together for a little while. The stories of the impact of MS on partners (and all the other people in our lives) are important ones. But incomplete without both perspectives. And Jase is an amazing writer. Editorial advisor and proof reader of this blog no less. Until a point when we can both step off life’s treadmill to write it, I’ll make a start.

The statistics on relationships and MS are ominous. Only last week Prof. Giovannoni said: “Compared to patients with other chronic diseases, such as cancer, patients with MS are twice as likely to be abandoned by their partners.” (1) And another source: “..separation and divorce are far more common when the wife is the patient” (again a study involving MS and cancer patients). (2)

We’re still here, seemingly against the odds.

MS is rough on both of us as individuals. And on our relationship. Mentally, emotionally, physically. Whatever affects us as individuals, affects the relationship. The negatives and the positives. The constant third wheel affects where we go, how we get there, or if we go at all. It imposes limits on our lives together, when we’re apart, and resets the course of our dreams.

From where I (often literally) sit, one of the most difficult things to manage is the upset to the balance of roles in our relationship. From being a couple who always shared the domestic load, my part in that is drastically reduced. I do what I can, and there is a lot of organising that can be done from a desktop. I’m forever scheming little hacks to try to make things easier. We have a cleaner for two hours a week without whom we may well lose our minds.

But the relentless fetching and carrying, power lifting mobility aids in and out of the car, the household chores, the cooking, the first responder to the irritating “please could you get my laptop/bag/book from downstairs/upstairs/the next room/the other side of the bed”, are all borne very largely by Jase, with little complaint. Did I mention he has a business to run too. And he’s not (with the previous question in mind) a superhero. Better than that, a real, absolutely super human who works hard every day in the rubble of what MS leaves in its path, the impact upon whom should not be overlooked by the gaze on me.

On top of the physical, there’s also the mental and emotional weight of responsibility for doing all the things. And that’s before I mention that watching me struggle can’t be easy. The physical I can see happening. What goes on inside can hide in plain sight when you’re often both too tired to talk about it.

The mental and emotional load is mine too. I know in my heart ‘doing less’ doesn’t equate with ‘being less’, but not being able to do what was once my share, or having to cancel plans can cause guilt, and take a toll on my self-worth and esteem. In turn that can impact how we relate to one another, sometimes because it can transform me into a grouch if I don’t keep myself in check with a reminder that none of it is my fault. And sometimes these wandering thoughts go further. I start to wonder when does ‘doing all the things’ tip the person without the physical limits into the category of carer? Is it when I start to need help with drying my hair sometimes, or putting on my shoes when my feet just won’t cooperate? Both of these humbling experiences happen. Perhaps the categorisation doesn’t matter. Either way all of it puts “in sickness and in health” on trial in marriage.

Conversely, at the core of us, I also think it affects nothing much. After more than 30 years together we still have the most pointless and sweary arguments from time to time. The same age-old themes, with a few MS flavoured ones thrown into the mix. We’ve built a life together that already survived a tonne-weight of challenges. We still support each other, even though it looks more than a little different these days. And together we support our daughter navigate the wilds of her teenage years, we have the best laughs, drink coffee, watch movies and TV, go out to our favourite restaurants (by the way we need to do more of this), and boldly make new plans and dreams.

Above all it feels like it’s a balance of learning how to manage the shitshow one day at a time, not losing our sense of humour, and mining the gems that can always be found. And remembering that just like anyone else’s relationship, it’s always a work in progress.

(…to be continued… )

🏝 Eliza asks: What does travel look and feel like for you these days? I know MS has put a block on some of my wildest imaginary trips (Timor Leste is probably not going to happen). Anywhere you've been happily surprised by?

MS is not the only reason travel has changed for me over the last decade or so. Before our daughter arrived we took a series of annual trips to the USA over three years, rail coast-to-coast, and road-tripping in California. And we loved our European cities. Once our bundle was here we stayed closer to home, trips less than a couple of hours away to the Yorkshire coast became more the norm. In fact we just returned from there, with two teenagers in tow, a bargaining chip now holidays with mum and dad alone are just too dull. And apart from one trip to France in 2018, we haven’t ventured out of the UK since those US road trips.

But yes, MS has played a role. As we settled into more local holidays, my mobility started to cause me problems, then COVID hit, and no one was going anywhere. And along the way, as those things dovetailed, I think I lost my confidence for travel too. As finding accessible spots close to home can be challenging, I imagined the research needed for trips that involve getting to a different country, and that felt draining. At the same time, I’m really glad you’ve asked, Eliza, because it makes me realise I’m not done yet. So perhaps it’s just not my travel era right now, but I hope it will be again in my future.

I won’t be trekking Machu Picchu any time soon, but it was never on my wish list. And of course travelling with a disability can be done, as demonstrated for example by the wonderful Emily Wojcik who also has MS, and writes Wheelchair, Bound here on Substack, a kind of travel blog (and much more) as a recent-ish mobility aid user. I highly recommend this newsletter not only for travel stories and tips, but great, funny and relatable writing about life with MS. I’m already taking notes for a new travel wish list, and Emily’s words are helping me to feel braver as I think about it.

And you asked if there is anywhere I’ve been happily surprised by. That isn’t a place as such, rather having no grand travel aspirations and genuinely appreciating what’s on my doorstep.

🪴Patrick (acknowledging my acceptance of random questions) asks: Do you know any thing about plants? I want recommendations for plants that are happy in a Mediterranean climate, i.e. thrive on not a lot of water. We live in Kent, where there’s a hosepipe ban.

A little. And I can make anything about MS! Before the beast started kicking my ass, I had an allotment (feels like a uniquely British thing, but probably akin to a community garden outside the UK). It wasn’t a very successful one, but sitting in the 10am sun, alone, with a flask of coffee and my harvest of 12 green beans, and unearthing my first pearly white potatoes from the muddy ground, were serene and joyful moments.

These days I tend my little herb garden without much exertion and my rollator seat at just the right height for when I’ve been standing for too long. And unless the watering-can fairies (Jase?) have stopped by without my noticing, most things have survived the extreme heat and dry summer so far. Marjoram, lavender, rosemary, chocolate mint and fennel seem to have done especially well. So herbs, if that’s your thing. I also had a miniature olive tree in a pot that survived for a long time with just the occasional soaking of water, so that could be a good bet. Finally, my gardening consultant (mum) recommends beautiful agapanthus (see pic) for the conditions you describe.

And I’m on my knees… looking for the answer

Comments