A while ago, I promised to start talking about my experiences of living with MS. The series of posts was going to be called ‘If You Love It So Much, Why Don’t You Marry It?’ *
However, this post is a positive post about how I have managed to keep going in the 15 years since diagnosis (so I have changed the title for this one).
I have been really lucky during the lockdown because my physiotherapist has adapted and is providing sessions by Skype. You might not think these work as well, but they do! One to one sessions prevent me from moving my limbs incorrectly (which I think can stop the exercise from working and sometimes can lead to aches and pains later). My physiotherapist has brilliant observational skills and can spot a slumped shoulder or a sagging hip – even from behind the screen. Anna has worked on my core, balance and strengthening muscles that (I think) will help me keep on my feet. I can’t tell you what the exercises are – I am writing this post to tell you my experience that physiotherapy has worked for me more than anything else.
Poor motivation has been a real problem for lots of people I know during the lockdown, including me but physiotherapy has kept me going. I have got a few bits and pieces of gym equipment at home because I use the advice I have been given each month and do a bit of physio-designed exercise every morning.
Look there is a picture of me doing my exercises! (NOT REALLY LOL!)
I haven’t taken any photos obviously during my remote appointments with my physiotherapist, Anna because I am busy paying attention and moving my limbs…
SP Therapy Services in Bury town centre. If you live in the Bury area and have a neurological condition, I think SP Therapy Services can really help you.
I usually attend Hydrotherapy once a week, this has really helped, my physiotherapist put me on to this. I can’t even swim and am not confident in the water but the benefits far outweigh the… I don’t know how to describe it actually – I think I am frightened of letting go of the side and lying on my back. However, lots of people told me that I seemed much better for trying hydrotherapy. And I am actually missing it!
I used to do seated yoga for people with mobility problems that was really good. Obviously, these activities are not on at the moment because of lockdown. Better to be safe.
During the time I have had MS
Strategies to manage the condition have popped up. And, at times I have been asked why I’m not taking CBD oil (because it doesn’t treat the symptoms I have). Or, why I am not following a strict diet… I have nothing against nutrition therapy, good for you if they work. I did try the diet and I felt great for a short period. Then I had several really bad relapses including the one that made me lose my job. That is just what happened to me.
Instead of being told what I should do, I want to ask something:
Are you doing physiotherapy?
Physiotherapy is the one thing that has consistently kept me going for the past fifteen years. When I started going to the physiotherapist that I still attend now, I could not bear to lift my head up straight without a sensation of hot pins and needles shooting through my neck. Because my head was permanently slumped to the side, this affected my posture. The knock-on effect of this was a nasty, achy pain just under my left collar bone. Although there is no cure for MS, I have been cured of pain in that specific part of me. But there are always little niggly things that crop up because of my condition. Blurred vision and sensitivity to light can affect my posture because I hide from the light. I am slightly weaker on one arm and one leg. I can’t stand up for long, I feel like I need to lean on something or sit down (urgently). I walk with a stick outside because I feel like I need something to lean on. I feel dizzy in wide-open spaces. Too much distance and I use a scooter. The benefits of physiotherapy are longterm. They are not a quick fix but for me, this works better than anything else.
I don’t mind putting a bit of work in to stay well because:
Before MS, I used to run ten miles per week.
I started running during my late twenties to try and improve my health. I was surprised how well I took to it, although I never saw much of a speed improvement I did feel better after a run. However, I was diagnosed with MS just before my thirtieth birthday and everything changed. I didn’t stop running immediately but I noticed that I didn’t get the ‘good feeling’ after a run anymore. Plus I fell over a few times. Cut my knee and wet myself. When I started to try and find a way to look forwards, I searched for a way that I could physically move – to make myself feel better. Physiotherapy has achieved this for me (even though I am shattered afterwards and have a lie-down!)
I have never had much stamina. I remember growing up I always felt weaker than all the other children in school. PE in the 1980s included ‘picking teams’. I was always picked last.
I couldn’t catch I couldn’t throw and I wasn’t much better at running. I was a weakling!
Then, during my twenties, I had multiple periods of sick leave from work. I was a staff nurse and then a ward sister. It seemed I picked up every bug going. I cringe now at having to ring in sick. It was embarrassing and eventually, I was asked ‘Is there a problem?’ The only problem was, I think stress was playing a part in my poor health. Nursing can be a great job…
It can also be a physically draining job.
Now I don’t have a job, I was retired on ill-health in 2014. But I have an occupation. Number one is keeping myself as well as possible. I cannot thank my physiotherapist for all the help over all the years.
Number two is writing… I write this blog and I write books. I am an independent author with eight titles available on Amazon. If you want to find out a bit more about that then sign up for my mailing list: https://landing.mailerlite.com/webforms/landing/d0q2h7 or follow this blog!
Thank you for reading this post on my experience of living with MS, I think next time I talk about MS I will talk about why I use a walking stick. Happy reading and stay safe, Samantha xx
*The reason for the title ‘If You Love It So Much, Why don’t You Marry It?’ is I am not keen on being asked questions about MS when I am socialising. It does my head in. You wouldn’t ask someone who’s got asthma if they are still taking their inhalers, would you? Don’t get me wrong, I don’t care who knows I’ve got MS and I don’t mind being asked how I am, as you would ask anyone. BUT stupid questions about ‘How does my scooter fit in my car?’ and ‘Are you on benefits?’ I find intrusive and are not helpful!
I wrote these books