I’m Back! MS Update

Hi everybody and happy September from a broken MS-Jen.

Those that follow me on my Facebook and Instagram (hop over and say hello if you don’t!) will know that I am a few weeks into a bad fall which left me with a broken collarbone, massive grazes and a broken front tooth. Let’s just say that steps and a dead MS leg don’t mix – my poor kids saw me take the tumble as I was leaving our house and then were complete superstars, getting their Dad from his work across the road and getting me a cold compress to press to my bloody mouth.

The Damage

I’m still wearing a sling to immobilise my arm, but I am able to remove it for a little while every day, hence my ability to write this post from my laptop on my lap. Turns out that I will probably need a tooth implant which apparently will cost me an eye-watering £2000 and I will need to continue using the sling for another 4 weeks or so. As a result, I have been out of the loop with my blog and social media – big apologies if I haven’t replied or commented on the things I have read.

If I am honest, it has been really bloody hard.  The kids are off school with it being the summer, it is my husband’s busiest time, as he’s a wedding photographer and it has been hot. Most of those with MS know just how much the heat can affect us; for me, it is mega fatigue, worsening mobility and significant ‘cog fog’. The kids have had to push me around in my wheelchair when my husband isn’t around, which was difficult for them. I’m dosed up on codeine, even now, and trying to do everyday things like wash myself and make food has been tricky, to say the least.

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The Good News

BUT… there has been some fab news in amongst all this – Tripping Through Treacle was named as number 10 in Feedspot’s Top 50 Multiple Sclerosis Blogs, Websites & Newsletters To Follow in 2019

I am so pleased that my little MS blog – which I started to basically splurge out my thoughts and feelings about living with this stupid disease – lies amongst websites such as Overcoming MS and the MS Trust. I appreciate each and every one of my readers 🙂

On a much more superficial subject – though pretty significant to me – my proper hair is starting to grow back! For those that have seen my Insta account, you will have seen my ‘chemo curls’, which I have as a result of my HSCT Treatment.  As much as I love curly hair, mine is just massive – so unmanageable and grows straight up. My hairdresser, who is also my next-door neighbour – confirmed that the roots are now pretty much back to my normal texture and advised me that I just need to let it grow another inch and a half or so before we can chop out all the ‘chemo crap’, as she called it. I think that having my old hair back will go a long way in making me feel a bit more comfortable in my post-HSCT skin.

HSCT Update

Talking of HSCT, I have had my first MRI since my treatment.  I haven’t yet found out the results, but I have an appointment next Wednesday with my Neuro to discuss them.  Fingers crossed! The aim of my having HSCT was not to fix the damage I already have with my MS – as I am secondary progressive – but to stop the inflammation that was making me continue to have relapses that that could potentially lead to further disability. The closer we get to the appointment, the more anxious I feel. What if there has been new damage since my treatment? What options are there for me after that?

I know that there is no point in me worrying but I can’t help it.  I have been trying to do a bit more deep breathing and meditation to keep me calm, as my usual ‘go-to’ to keep my emotions on an even keel – yoga- is unavailable to me at the minute with my broken collarbone. I hate to say it, but as a ‘spoonie parent,’ I am so looking forward to the kids going back to school next week, even though it means that my oldest is taking the nerve-wracking big step to secondary school before I truly feel ready for it.

Parenting Update

The kids have been brilliant in terms of supporting me since my accident, but…being a parent to tweens is so hard. Sorry to my readers who have younger kids but, although it has gotten easier in some respects, other aspects are so, so hard. Keeping them amused without screens (and the inevitable arguments we have about them), talking back, worries about body shapes, bullying, age-appropriateness… perhaps I am finding it even more difficult because of the limitations my accident – as well as my MS- have imposed, but I have found it especially hard this summer. Any tips from seasoned parents are very welcome!

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And that’s my mini update! As you can see, I haven’t been up to much, but I will be writing soon about my MRI results (good or bad) and getting back into the swing of things with my blog over the coming months, after my recent hiatus.

I really hope that everyone is well, please feel free to get in touch for a chat!

Till next time