Back to Blogging

After what feels like an age, I am now back and really want to blog again.  I can’t believe that my last blog was in November… don’t ask me why I haven’t. I suppose I have just reached a “meh” phase of my MS, where I just completely lacked any motivation.  And silly me didn’t read any of my previous blog posts that covered what I used to do to get my mojo back.  It was actually an email from a lovely blogging friend wishing me well in my absence, that has made me motivated to share my experience of living with progressive MS once again. Thank you (you know who you are).

Living with Uncertainty

One of the things that people often say about living with Secondary Progressive MS (SPMS) is that it takes the uncertainty out of MS.  Uncertainty is definitely something that I lived with when I had relapsing-remitting MS – when will my next relapse come? What part of my body will it affect? How long will it last?  My “mild” MS meant that I didn’t take any disease-modifying drugs (DMDs) or have any MRI scans (which, in hindsight, is not the way that my RRMS should’ve been treated). I imagine that those who are on DMDs also live with the constant uncertainty of whether the medicine that they are taking is actually helping.

However, uncertainty is definitely something that those of us with SPMS live with too…well, I do. But instead of wondering when my next relapse might be coming, I wonder about how much worse my disability will get. Just when I think that I can handle living in my body, I notice another aspect of it failing – my weakening core strength, for example, means that I struggle sitting up in bed and I rely on cushions behind me whilst I sit on my sofa.  My fingers are now finding it more difficult to do up buttons and put my jewellery on. Thank goodness I have a daughter who happily helps me.

Longtime readers will know that I had HSCT – a stem cell transplant – to try and halt the active lesions that were continuously occurring in my brain in 2019. All the MRIs I have had since then have indeed shown that the treatment seems to have halted any active MS, which is fantastic. However, that doesn’t mean that the previous damage I had wouldn’t get worse and I guess it has.

I Took a Step-Back From Healthy Living

If I’m completely honest, I think my trip to Australia in October/November, a holiday to go and see my sister, is what started me on the path to feeling a little bit “meh”. I didn’t keep an eye on my diet when I was there and my regular MS Gym workouts were put on the back burner. I was so keen to do as much as I could with the children on their first trip out to Australia to see their cousin that I prioritised seeing the sights and making it easier for me and others (for example, eating what everyone else was eating) over my usual “self-care” strategies to help me feel as well as I can be with MS. Meditation, yoga, strength training all went out of the window. And, if I’m honest, have pretty much stayed out since I got back from Australia! Is it really any surprise that I physically feel worse?

I think not prioritising my health, along with struggling with my ongoing and changing symptoms, is what made me lose my motivation to blog. I am so conscious that many other MS blogs and accounts on other platforms, such as Instagram, are either much more positive than mine or don’t reflect my day-to-day experience. I suppose I don’t want to be constantly complaining about my MS as that will just bring me, and others, down. I  am an “oldie” when it comes to MS – I was diagnosed 29 years ago this month, having had my first symptom/relapse two years earlier. My experiences of diagnosis and (lack of) treatment all that time ago, often seem quite different from what more recently diagnosed people with MS share on social media.

So, What Now?

I ask myself: “Does my experience of living with SPMS still have a place within MS and chronic illness blogs?” I’ve been spending a long time thinking about it and I’ve come to the conclusion that, yes, hopefully, it does.  When I first started blogging, I did so because I was really starting to feel the effects of my worsening MS – I had not yet had a neurologist say to me that I was indeed SPMS, even though I suspected it. I needed somewhere to get my thoughts and feelings out and I think I still do. I hope that sharing them will help not just me, but also people who are out there, living as I live, to help them feel not so alone. If I could reach just one person, it will all be worth it.

So, with that in mind, my plan is to continue blogging as a way to share my experiences of living with progressive MS. Perhaps doing an update to my “This is my MS” series of posts that I wrote several years ago? I have also had the opportunity to try a new “tool” to aid my mobility – Functional Electrical Stimulation (FES) – and I’m in the process of getting my first car through Motability. Not to mention living with a physical disability. So I have plenty that I can write about; I just need to get to it!

If you have stuck with me through my quiet period, thanks so much. I really do appreciate everyone who reads and comments on my blog posts. If you would like to ask me anything or have any particular blog post ideas, I would love to hear.

Till next time

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