My husband has been a motocrosser since he was a kid, it’s in his blood. I’ve been a “motocross wife” since we’ve been a couple, it was quads when we first got together but he went back to two wheels about 5 years ago. An unfortunate accident, not involving him but a member of his family, put the frighteners on him and, given my physical condition these days, he sold his bike in a bit of a knee-jerk reaction. A decision I was firmly against and knew he’d regret – which he does.

This past weekend was a big motocross event which he has ridden for the past few years but, being bike-less, wasn’t able to this time and boy did I know it. Combined with the fatigue from driving hundreds of miles last week for work and the impending FOMO he was a very grumpy boy indeed. He had organised a ticket so he could attend should he want to but that wasn’t good enough, not for him and certainly not for me. Told him when he got home Friday to pack his shit, get in the motorhome and piss off down the track for the weekend. I’m a good wife like that. After this brief exchange he insisted he just needs time to “adjust” to not being a motocrosser anymore which got me thinking of all the adjusting I’d been forced to do over the past 4 years…

To start with I had to adjust to walking with a stick, hated every second of it. I was 37 for fucks sake! Then it was TWO walking sticks as my balance became even worse. Great. Plus I had to “walk” the dog on a mobility scooter.

The real kick to the gut came when I had to change from driving a manual car to an auto. I could no longer safely lift my left foot to the clutch so I knew it was the right thing to do but by fuck it stung. I still hate it to this day, people are always surprised when I say “if I could, I’d go back to a manual in an instant!” To me it’s a downgrade, a flaw, another thing I CAN’T do and an adjustment I do not like.

After that it was adjusting to spending a lot more time on the floor, for example I can’t rearrange the throws and cushions on the sofas from a standing position so I have crawl around the lounge like a bloody toddler. Same with hanging the washing on the airer. Had to adjust to not being able to peg it out so now have crawl around on the floor – it’s so degrading.

Devising a new way of getting up the stairs – this is ever evolving as my legs become less and less functional and let me tell you, it ain’t pretty, nor is it safe really. I’ve had to adjust to sleeping downstairs. I like co-sleeping with my husband but I just can’t get up the stairs every day, so the sofa has become my bed for now.

Now. If adjusting to driving an auto was a kick to the gut then having to switch to hand controls was a full on running kick to the fanny! That was a very real adjustment. Luckily I am a quick learner and please don’t misunderstand – I am grateful that I can still drive. Otherwise I’d have to adjust to EVEN more daily drugs as I’d absolutely need some anti-depressants.

Just lately I’ve had to adjust to using a walker/rollator instead of walking sticks. I’m 41. Forty-fucking-one. I ordered a wheelchair last week (to the tune of £3800 – that’s right, we don’t get given those for free) so I doubt it’ll be long before I have to adjust to that.

This doesn’t include all the small adjustments like doing everything one-handed because I HAVE to be holding on to something all the time. Sitting while showering. All the meds I have to take just to resemble a normal human being. Working from home full time because I can’t be accommodated at work. Having to ask for help with stupid things like getting the roast potatoes out of the oven! Also living almost 100% of my life within the 4 walls of my unsuitable house. It’s soul destroying if I’m honest.

Life with progressive MS is just years and years of making adjustments and then adjusting those adjustments and so on and so forth. You’ve got to be tough, resilient and imaginative because nobody tells you what to do or how. This is not a pity party, just reality. And the reality is if I only roll my eyes 342 times a day I’m not doing too fucking bad!