The Reality of Living with SPMS

Hello all, and long time, no speak!

I feel rubbish that I haven’t blogged in months but, at the same time, I’ve been feeling so rubbish myself that I didn’t think others would want to hear. The truth is, the reality of living with secondary progressive MS, is hard. Living with relapsing-remitting MS itself is difficult, not knowing when the next relapse is going to come, and what effect it will have in the short and long term. To me, though, the reality of living with SPMS is a whole new dimension. I can’t explain exactly what it is, but seeing and feeling my body fail again and again, with no let-up or periods of reprieve, is definitely part of it.

I was diagnosed with secondary progressive MS back in 2017, but I know it started many years prior. And though it was a relief to finally have that diagnosis, as I knew something different was happening with my body, the reality of how SPMS presents itself and progresses was unknown. All I could do was research everything I could about SPMS, much of which came from reputable charities, such as the MS Society or the MS Trust.  It was bittersweet, in some ways, as many of the articles talked about how disease-modifying treatments (DMTs), taken during the relapsing remitting phase of MS can help to delay SPMS. That’s great for people who have had DMTs, but I hadn’t. I started searching for people who were similar to me on social media, but few could be found.

The Past Year

Anyway, I feel like the reality of living with SPMS has really shown itself in 2025.  Since the beginning of the year, I’ve been living with chronic UTIs, using self-catheterisation, noticing weakening hand strength, increased spasticity of my “good” leg (which is no longer good) and lack of core strength. The impact? Well, I struggle to sit upright on the ground or move my legs when I am trying to carry out yin yoga (the only yoga I was able to practice), I can no longer crochet with ease, which was one of my main hobbies and I have had numerous bladder accidents with all the UTIs. Getting in and out of bed is difficult, as is showering, getting dressed and putting shoes on without the help of my family.

My world feels like it’s getting smaller and smaller with fewer things to enjoy and be happy about. Our house is currently up for sale, and we have our eyes on a bungalow nearby, but nothing seems to be moving in this small market town of ours. Time to reduce the price, I think, but this will then have an impact on what we are able to offer for a new house.

Celebrate the Good Things (no matter how small)

I could go on, but I don’t really want to. I depress myself even more if I really stop and think about how difficult I’m finding everything now. Instead, I’m going to try and focus on the positive things that have happened recently:

My son has just turned 18, which is crazy (surely I’m not old enough to have an adult child?!).

My husband and I have just celebrated our 20th wedding anniversary – yes, there have been ups and downs and there was a little break for a couple of years, but we’re back together and going strong

I am still able to meditate, which I love, and has no doubt helped me to keep calm in the face of both bparenting and health uncertainty.

I love the new song by Raye.

I have completed the reading challenge I set myself on Goodreads.

My husband and I are re-watching one of our favourite series, Mad Men, and it is just as good as the first time we watched it.

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How are you all? I’d love to hear, as I am a bit out of the loop, but I would love to catch up.

Till next time,

SPMS and My Body Image Living with a Progressive Chronic illness…. New Meds, New House, New Feelings about My MS…