MS Life Update: April 2020

Hello everyone and welcome to my first blog post since January! I thought it was time for an MS Life update. I have started this post many, many times over the last month and, over that time, the world has just become so crazy.  I really hope that you are all doing safe and well – thank you so much for sticking with me 😊 I’m not going to talk too much about ‘the C-word’ in this post; if you are anything like me, you’ll want to get away from it for a while. Instead, I’ll let you know what I’ve been doing over the past few months. Please do get in touch, I would love to hear from you.

What I’ve Been Up To…

To say that last year was a difficult one for me is an understatement. It saw me attempting to get my head around not only my HSCT treatment, which I completed in January 2019 but also a change in work practices (having medically retired from my NHS speech therapy job in 2018), personal and emotional issues at home and contending with a new sense of ‘self’ as my MS seemed to worsen and my hair fell out from the HSCT treatment.

When I write it down like that, it is no wonder I’ve noticed that my mood has been a bit up and down!

MS Life: My Health

So, how have I been getting on health-wise since we last ‘spoke’? Well, it’s the case that, though the HSCT has stopped new inflammation (no further evidence of new lesions in my brain, according to two MRIs), it hasn’t stopped the progression of the disease, just as my Neurologist warned me it probably wouldn’t. I feel like I am a bit slower, a bit more unsteady, a bit more ‘unsafe’ in my body than I was compared to a couple of years ago. I still rely on two crutches to walk and a mobility scooter for, well, any distance really further than across the road.

My left leg spasticity has got to a point where I often need to coax it with my hand to bend my knee in order to sit on my scooter or get into the car, otherwise it’s poker straight with spasticity. Unfortunately, my appointment for the Botox-clinic, where my rehab doctor hopes to calm the spasticity with the drug, was sent for when I was going to be away (more on this later), so I am looking forward to getting that done in the future. Have you ever tried to get up from the ground, for example after a fall, with one leg straight out and refusing to bend? It is NOT fun, believe me!

Last month, I spent a bit of time in Australia and noticed that unfortunately, the HSCT hasn’t improved my heat intolerance with my MS, so I spent a lot of time chilling inside when I was there.

All the big things last year have affected my mental health, so I’m grateful for the break I had in Australia and I’ve been using my tried and tested methods of yoga and meditation to help when at home. I also journal every couple of days, which is a good chance to splurge out my thoughts! I still take a low dose anti-depressant which I think helps me to feel a bit more on an even keel.

MS Life: My Work

My independent speech therapy business is up and running! I’ve had the opportunity to see a few kiddies, to deliver some training and, most importantly, I have been able to work it around my health needs. No more getting up at 6:30am to drive to work and I can have an afternoon sleep if I need to. I love using my brain again and working with the parents, children and nursery staff. I feel like a little bit of ‘me’ is back – it’s nice not to think of my MS for a while.

I’ve even started looking into using video conferencing as a way to deliver therapy to children at home during these times of social distancing and isolation. I already have one person who’s interested in trying it for their child, fingers crossed that it goes well – it would be a really useful way for me to see kids from my home.

MS Life: My Spare Time

My MS symptoms over the past few months have meant that I have had to have a nap most days and generally have had to focus on resting my body and mind through lots of telly-watching! I have also been back and forth to the dentist to fix my front tooth after a fall that I had in August broke it in half (cue lots of money spent and appointments every couple of weeks). Those horrid appointments have been juxtaposed with much more pleasant ones with a massage therapist giving me a monthly Thai massage – stretching and releasing my muscles to help with the spasticity. I initially paid for this via a Christmas voucher but it was so nice I funded the next couple by myself!

I’ve read a couple of books (nothing that really sticks out, to be honest) and watched a few films (‘Jo Jo Rabbit’, ‘Green Book’ and ‘Parasite’ were all particularly brilliant) and, other than that, my time has been largely been spent caring for my children. We’ve been to trampoline parks, had pizza nights and done ‘little things that actually feel quite significant’, like opening my son’s first current account so that he can have his own cash card and be a bit more – gulp – independent. They’re growing up way too fast and I just want want to freeze time for a bit to keep them from growing up further.

MS Life: My Travel

One massive thing that has happened over the past month was my trip to Australia to see my sister. This was a holiday that I had planned to take last year, but my plans were scuppered when I had HSCT treatment instead. Because it was a chemo-based treatment, it meant that I couldn’t travel abroad for the year after finishing, hence arranging to go in the March just passed. It was brilliant and so relaxing. My sister was working from home from for much of the time, so I just chilled out at her house and had time to rest, relax and prepare for the activities that we had planned, such as going wine tasting in the Hunter Valley🍷.

 

 

Low and behold, the C-word wrecked our plans and I had to return to the UK after only 10 days in Australia. It felt like the right thing to do – I had travelled out with my parents only and didn’t want to risk not being able to get home to my kids. As it was, we self-isolated on return to make sure that we hadn’t brought the virus with us and I’m happy to say that I am now back in my house.

The 10 days that I had in Australia were brilliant – we made it to the Hunter Valley, went into Sydney city centre and had numerous delicious meals. Best of all,  I was able to see my big sis, give her loads of cuddles and spend my evenings chatting with her and hanging out with her family. We may not have been there for long, but we definitely had quality time together, which was exactly what I wanted – and needed.

Being in Sydney was bittersweet though.  When I was last visiting, in 2005, my MS symptoms were non-existent – no mobility difficulties, no fatigue, no heat intolerance. This time around, I had to use my mobility scooter and carefully plan my journeys into the city centre from the ‘burbs where my sister lives to make sure that it was accessible. It all got a bit much for me and I spent the day after our city trip feeling very low.

My MS Life: What Now?

Well, after the excitement of Australia, it is a case of trying to find my feet in this strange, new world we have at the moment.

The kids are not at school, so I am trying my best to get us through these days with some sort of routine whilst keeping everything chilled and fun. We aren’t going over the top with ‘homeschooling’ (I am definitely not a teacher!) but instead gently encouraging the kids to try and stay off any screens until the afternoon and instead to play outside, bake, help around the house and do crafts alongside the school work that has been set. I have written a blog post for the MS Society all about parenting during social distancing/isolation which has helped to keep me busy and, as mentioned above, I am trying to get my ‘telehealth’ therapy off the ground in terms of work.

I have also recently joined the MS Gym which has been great so far and, of course, keeping up with my almost daily naps.

I have loved having this time with the kids though I have to admit the general messiness of the house is stressing me out! I think that I need to factor in a ‘tidying time’ within our little daily routine in order to keep me sane!

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I really hope that this blog post sees you all well – although I have been quiet here on my blog, I’m hoping that the break has done me good and that I can pick up with my regular posts once again.

Till next time