MS Life Update! June 2021

Long time no speak!

I thought it was time to catch up and give you an MS life update of where I am with life in general – I’ve realised that I haven’t actually posted a blog post since April this year. Can you believe it’s already June?! I think it truly is the case that time just flies by faster and faster the older you get.

2021 has been a tricky year for everybody so far, I’m sure. Here in the UK, we are starting to come out of lockdown with a gradual easing of restrictions but the government have decided to be careful due to a new variant of Covid sweeping the country. I’m pleased to say that I’ve had both of my vaccinations now, as have my parents, which makes me feel much more relaxed (though obviously we still need to be careful).

MS Life Update – Work

For those that don’t know, I’m a speech and language therapist who gained early ill-health retirement from the NHS due to my progressive multiple sclerosis.  I really struggled with carrying out the full days and higher number of contacts that were asked of me in the NHS, along with the managerial and admin duties I also had. Despite my retirement, I do feel like I am able to do some work– just on my own terms, seeing fewer clients and working around my health.

Over lockdown, I’ve been seeing clients via Zoom teletherapy and, since last week, I have also just started seeing children face-to-face from my home. I’m lucky that I have set up one of my downstairs rooms as an office to see the kids.  I’m now at the stage where I’m having to put a halt on any new referrals and I’m just finding my feet with trying to balance my home/work life again.  I really have to make sure that I don’t see too many children as the effect it has on my fatigue is massive. I think just having to be “on the ball” (as opposed to being able to rest and switch off on my sofa!) and interacting with others takes up so much energy. I am conscious that I won’t be able to do paid work forever and, as a single-parent, I’m aware that I need to save and put money aside for my kids if possible. Working is also good for my brain – it feels so nice to be using my skills again! So, it is just a case of making sure I find my balance, which is a work-in-progress and I’m sure I will get there.

MS Life Update – Home

One of my biggest stresses at the moment is my housing situation. I live in a Victorian semi with my two kids (ages 13 and 11). We have a large courtyard garden and one bathroom, which is located upstairs. Healthwise, I have to ‘wall-walk’ around the house and use a walker in the garden. I’m so grateful to my mum for helping me in the garden! Planting my pots has become such a struggle for me, so being able to look out at the lovely flowers my mum has potted for me whilst having my morning coffee outside in the cool is something I really appreciate.

The reality is, I have a progressive disease that I’ve definitely felt getting worse in the past year. People often tell me to get a cleaner to help manage the house, but the cleaning isn’t actually that much of a problem for me – it’s the tidying. The kids, especially my daughter, do help me to a certain extent… but it is a constant source of stress.  To be honest, the house is so big that I really just need a bungalow. I would feel so much safer in a bungalow with a downstairs bathroom and I have seen ones on the market that have small courtyard gardens that would just be perfect. But how does someone who is on a small ill-health pension afford to buy a bungalow?!  In my area, they very easily sell for about £70,000 more than the value of my house. And, when I sell my house, half of its value will go to my ex.  There is no help to buy schemes currently in my area and there are no schemes to help physically disabled people get into a home that they can more easily access. Any mortgage I can get will be based upon my small ill-health pension rather than my previous Highly Specialist NHS job salary. I honestly don’t know what to do or what the answer is :(.  If anyone has any experience or solutions, I’d be so grateful to hear!

MS Life Update – Health

As stated before, I feel like my secondary progressive MS is worsening more quickly now than it ever has. Most will know that I had HSCT treatment – a stem cell transplant to try and reboot my immune system – back at the beginning of 2019. The two MRI scans I have had since then have shown that I have had no evidence of new lesions, though I am conscious that I haven’t had an MRI in over a year now, due to the pandemic. I am booked in for one at the end of July and it’ll be interesting to see what it shows… I have noticed more differences in skin sensation on my body (numbness) and I don’t know whether this is old damage showing up again or whether there’s new activity going on.

My biggest challenge health-wise at the moment is my spasticity, which has led to lots of pain and difficulty walking. I still carry out activities to try and help and I’ve got myself a new deep tissue foam roller which is a torture device in disguise! It really works but it’s soooo painful. I have had my first dose of Botox put into my left leg which, to be honest, hasn’t helped at all – they did say they were being conservative with the amount they had to use first as understandably they don’t want my leg to go the other way and be all floppy! However, I had that first dose back at the end of February, so I’m definitely due a top-up. Unfortunately, my spasticity is definitely worse in my left leg (thigh, calf and foot) but I can feel it now in my right leg as well. Sleep is getting even trickier!

Foam Roller – aka ‘Torture Device’

When I saw my neurologist, he said that I should up my Baclofen (a muscle relaxer) to 20mg 3 times a day which I have been doing, but unfortunately, it’s not making a difference. If I’m honest, I’m aware that I’m struggling so much more now and that frightens me. I have a new leg brace which I attach to my shoe but the reality of being single person living with a physical disability means that using a device, such as an brace that is meant to help you walk, is tricky when you are by yourself and trying to get your foot into it and can’t!

MS Life Update – My New Wheels!

Because walking has become even more difficult for me, I decided to bite the bullet and buy myself a power chair that I can use at times instead of my mobility scooter. For example, at my local Boots store, there is not enough room for my scooter to get around. I used to leave my scooter outside and walk inside with my crutches but this is getting more difficult for me. I was also aware that the wheelchair will make it easier for me to have more than one drink at my local pub up the road 🤣 . Alcohol seems to affect me so badly now–after just one drink my brain is fine but it feels like the connection to my legs has been completely severed!

My new wheels have so far allowed me to visit a local nature reserve with my children and it fared so much better than my portable scooter usually does on the forest terrain. I just need to get used to steering it using the joystick as it feels so fast at the moment.

MS Life Update – Lifestyle

Yoga

As I mentioned, I’m trying to balance out my work/life priorities at the moment but I am continuing to use yoga as the way to stretch out my spastic muscles and also chill out mentally. Because of my worsening mobility, I find that the best type of yoga for me to be doing at the moment is Yin Yoga – this is holding a stretch for up to 5 minutes in order to loosen the muscles and relax. I’m really loving yoga practices by Yoga with Kassandra particularly, here is one of my favourites that she does on YouTube, though I do sometimes have to use props in order to not stretch too far and hurt myself.

Art

I recently purchased a virtual course on using watercolours to paint. I have absolutely no experience but I really like the idea of trying something new and having something relaxing to do away from my phone! I haven’t started yet but I’m hoping that I will gain a lot from it and think that my children might quite like to have a go at doing the course themselves once I have finished – my son has decided to take art GCSE and my daughter has always been a crafty sort. I’ll let you know how I get on and maybe share some of my pictures if I’m not too embarrassed by them!

Life By Design – Watercolours Made Simple

Books

I have then been continuing with my GoodReads Reading Challenge of reading at least 25 books this year. Apparently, I’m already six books ahead of schedule, which is great. I tend to do my reading before bed, but I have also used Amazon’s Audible since the beginning of the year.  I had a code for free membership for a while and that really made me realise how nice it is to have an audiobook that I can play whilst cleaning, cooking or even just sitting down and resting. Sometimes my hands get tired even from holding my Kindle so an audiobook is a great way to get the reading in.

Here are some of my recent favourites (affiliate link):

Have a look at the Audible Memberships available here – you can have one month for free then cancel it or continue for £7.99 per month.

Getting Used to Being Just Me

If I’m being completely honest, a huge part of this year has been spent getting my head around my life now, as a single person with a progressive illness. My ex and I officially broke up last year and he still helps me a lot and is a great dad to the kids, but I’m still trying to find my ‘new normal’.  Things are harder for me at home physically, because of my MS and I guess mentally because I am the main carer for my two kids. With one teenager and one ‘tween, it isn’t always a bed of roses, that’s for sure!

It’s really hard when you thought that you would have both physical and emotional support at home for life and as your symptoms increased… for it to then stop.  Don’t get me wrong, I know that I have so many people that I can rely on, including my kids, my ex and our extended family.  But the thing about being alone means that you have lots of time to ruminate on what once was and what is.

When it comes to living with a chronic illness, one thing I’ve learnt over the years is that, at least here in Britain, you often have to fight and advocate for yourself when it comes to getting care and support from the medical profession.  Which is so hard when you’re just… tired.  I remember when the specialist OT came to see me at home to see if my house could be adapted easily – she said it couldn’t and that I would just have to get a bungalow (how?!) – life just goes round and round in circles.  I just want it to be easy, but it gets harder and harder each year.

So, for the last few months, I’ve really been trying to make peace with what my life is now and how I can make it the best life it can be. I know that I’m a strong person and I’ll get there, I’m just aware it’s going to take time and I guess I can’t rush myself.

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I really hope that everybody is okay and staying as healthy as possible.

Love and light