Jenny Hi everyone, how is everyone doing? I have to apologise for going a little bit AWOL on you, not just in terms of this blog but also on my social media channels – October seems to have passed by in a blur, I can’t believe it is almost the holiday season (quickly thinking of frugal ideas for Christmas as I am SO skint this year)!
I thought that it was time for a brief MS life update, as I have been pretty busy of late and seem to have had loads of appointments to go to, some of which I thought might be useful to tell you about, as I have found them so helpful for me.
MS Medical Update
As is typical in my MS life, I have had a lot of medical stuff going on. Although my MRI scan back in July was considered a success in that they finally found no new lesions after my HSCT, I have to admit that my symptoms are pretty crap at the moment. As you may know, I had a fall and broke my collarbone back in August, which my body is still trying to recover from; I can move my shoulder a lot more now, which is good, but it still makes an awful cracking noise and aches a hell of a lot. On top of that, my legs just feel heavier and heavier and my left leg spasticity is at an all-time high. I am still hoping that this is all part of the ‘up and down’ rollercoaster that is the first 18 months after HSCT, but I am definitely seeing more downs than ups this month.
Physiotherapy
I was referred to a Neuro Physio to help with my spastic legs. She was able to massage them, which felt like bliss and seemed to help the spasticity in the short term. She also provided me with advice on the types of exercises to do at the gym (activities to keep the range of movement going) and the best stretches for me. Ultimately, though, she advised that she would need to refer me to a rehab consultant to look into whether botox was needed to help the spasticity.
Rehab Consultant
Luckily, I was offered a cancellation so I didn’t need to wait long to see the rehab consultant. I thought that he was brilliant, he really seemed to consider my needs from a holistic point of view and even discussed issues such as sex, which have never been mentioned to me by any other professionals. He agreed that my leg was very spastic and said that botox may have a place but explained that it might be better to try different medication first before reviewing in January. He explained that my spastic leg is almost acting as a third crutch, helping me to keep upright and he worried that making it too relaxed through botox might actually make my walking worse. So, the next step is a little adjustment to the amount of baclofen that I have over a day and, if that doesn’t appear to be helping, to consider a small amount of botox in the front of my thigh in January. Has anyone else ever tried botox for spasticity?
Occupational Therapist
My final medical appointment this month was with a Neuro Occupational Therapist. Occupational Therapists help to provide solutions for everyday tasks, such as washing, getting around the home and eating, to keep you as independent as you can be. My OT came to see me at home and has advised me on grab rails for the bathroom, financial support that might be available to me to look into building a downstairs wetroom and also referral to wheelchair services. All scary stuff, to be honest, but I am definitely one who prefers to feel prepared – apparently, the wait for wheelchair services is up to 2 years, so I am pleased I am at least in the system now.
MS Work-Life Update
I am pleased to say that my little private Speech and Language Therapy business has now gone live! I have restrictions on how much money I am able to earn as I now have my ill-health pension, but that shouldn’t affect me too much as I can’t actually do too much work-wise anyway! I am hoping to take on a couple of clients that I can see at home for therapy and that it will help to keep my brain ticking along whilst letting me work around my MS. If I am totally honest, I hate the fact that I have to charge for my services, but the reality is that an ill-health pension and disbility payments do not account for much (no matter what you see in the press!) so needs must.
MS Leisure Life Update
Sofa Time
As the weather gets cooler, it is the perfect time to chill out and start with some cold-weather activities – for me, that means more crochet, more reading and even more telly-watching. I’ve loved starting the ‘Friends’ series from scratch – I think that I already saw every single episode back in the 1990s, but re-watching it as an adult has been fab. It is so funny and my son has even started watching some episodes. Watching it again, you realise how much society has moved on and it is actually pretty ‘un-PC’ at times – it has been good to discuss with my son. For example, at the ‘lesbian wedding’, the guests are exclusively gay females, generalisation or what?!
Sing Time
I’ve recently started attending an informal ‘sing club’ with some mates, which is a chance for me to have a couple of hours to myself, away from the kids, to belt out songs by the likes of Tina Turner and Dusty Springfield. I can’t really sing, to be honest, but that doesn’t really matter when your with friends and doing it for a laugh. It’s a good way to reduce stress and for me not to think of my MS for a while.
Dress-up Time
We have a pub literally two minutes from our house and this lent me the opportunity to get dressed up and go to a Halloween ‘party’ with my kids. I was back in my jammies by 10pm, but it was fantastic taking the time to put a bit of make-up on and get the red contacts out!
Getting Involved with Shift MS
Shift MS is an online community for MSers, which offers support, information and access to MS experts. I am really pleased to say that I have been accepted onto their Buddy Network – here is the lovely Toni, telling you all about it. As someone who was diagnosed with MS back in 1994 when there was very little in the way of help and support, I am excited to be able to help others in this way. I might not have all the answers, but I am definitely a good listener and empathiser. I really hope that I can help to support others in a way that I didn’t have myself. I am at the stage where I am now waiting to be paired up, can’t wait.
In addition to being a Shift MS Buddy, also look out for me taking over the Shift MS Twitter feed this weekend, when I’m doing the Twitter Takeover! Really looking forward to chatting to those who follow Shift MS – come and say ‘hi’, from 5 pm on Friday 1st November 🙂
Till next time
Great post Jen, and loads going on! A lovely post though, and love the idea of the singing group! I truly hope everything sorts itself out with you physically and all the best with the business. Little secret, I’m finding myself watching Friends every arvo, and still lovoling it! And thank you so much for the mention. So sweet of you, and I hope you enjoy being a Buddy and much as I do. 🙂x
I’m sorry the symptoms and issues you’ve been having have left you feeling so rough, and still having such problems with the spasticity too. It sounds like a reasonable idea to up the baclofen a little before trying Botox. I’ve not known of anyone having it for spasticity per se, but it does seem helpful for a range of muscular issues (not just to get the frozen-face look to knock off 20 years!) So is the plan then to see how the baclofen goes and he’ll review in January?
Fab news about your business! That’s amazing, you should be hugely proud. Wishing you all the very, very best with it! And I love the fancy dress; even if it was just a short pop out with the kids, it still makes a big difference to be able to dress up a little and do something different. I’m sure they’ll have fond memories from it, too. Will you be doing a singing video for us any time soon, Jen, to show us what these sing club sessions are like? I hope to hear you belting our some Dusty Springfield in your next post! 😉
Caz xxxx
Hi Caz and thank you so much for your message, sorry it has taken me a while to reply, my wordpress seems to be acting up. I have tried to leave a comment on your CBD post but it says that I already have?! Anyway, just to let you know I have read it and thank you for the fab review 🙂
Yep, the plan is to try a bit more baclofen before the botox, it would be interesting to know if that helps. I don’t fancy having a wobbly leg from too much relaxation, so I need a happy medium. And re the Dusty Springfield songs – I will NOT be harming your ears by posting a video anytime soon, haha xxxxx
Hey Jen sorry you are still feeling somewhat crappy but your other aspects seems great. Love the MS buddy thing and your independent business setup. You have accomplished a lot since your HCST and I love hearing about your journey. Be well.
Thanks Jamie, I’m starting to realise now that my life can be just as fulfilled now than it was before, maybe it just ‘looks’ a bit different x
[…] to contend with both personally and professionally. As you may know, if you have read my previous blog posts, I am now working as an independent speech and language therapist after taking early retirement […]