Over the years, as I have become more disabled and the strength in my legs and arms has become less, it has been really important to go back to our physio service to ask for their help and advice. We have a self referral system, so we can just call the service and ask to be seen.
This is what I did over a year ago now and I'm so glad that I did. I was booked in with an Physiotherapist, called Zoe. She is a neuro physio which means she specialises in neurological conditions.
I am very lucky because I have actually had various sessions with Zoe, on and off, over several years and I was delighted when I was paired up with her again this time. She is very understanding, practical and totally understands my way of thinking......which can be odd at the best of times! 😂
I remember several years ago, she came to our friends swimming pool to help me with exercises to guide me with the best way to build up the strength in my legs. That was so valuable to me because, not only did we have the use of a private pool, but I had a physio come and show me what was the best way to help myself.
The sessions I have been having this time, have been to help keep me as independent as I can be and to keep me using my legs, rather than a wheelchair, for as long as possible.
I have always seen using a wheelchair as a negative thing. My view was always that "I'm giving in" or "I'm being lazy". I guess it is what has kept me using my crutches for all these years. I actually couldn't have been more wrong though because using a wheelchair is just another aid, like the crutches are, but I just couldn't see it that way. Now though I have been shown that using a wheelchair is a way of helping my body to save it's energy, which is so important as there isn't a lot to be used in the first place!
Using my wheelchair occasionally through the day means that I am able to manage things later in the day. I always struggled to get into bed because my legs were so tired but if I use the wheelchair sometimes then I find that getting into bed is easier because my legs have more energy in them.
It makes total sense to me now, I've always been a bit slow to catch on! 😂
Zoe, the physio, has given me several exercises to work on and over the past year, where I feel I haven't made any progress but she has been able to point out how far I have come.
One of the first exercises was just to stand up and balance with only one hand holding on. I couldn't keep myself upright, my stomach muscles would collapse and I would just bend forward. Over the year I have built myself up to be able to stand, with only one hand holding on, for thirty seconds. This really helps my posture and it takes me back to all the years I was a dancer, I know what and how I am supposed to do it, it's muscle memory that just needs to be woken up!
I like to think I am a positive person and I try really hard to do all I can to help myself but I am also very good at putting myself down. I don't know why I do it, I guess I want to get in there first before anyone else does it! But I am also very determined to help myself and I've never wanted to let the MS take over. It's a double edged sword because I need to stay positive and pro active in staying on my feet and doing all I can, but because of the the symptoms you get with MS, they need to be managed. You have to find a balance between keeping active and busy but doing it within your own limitations. This is where I have always struggled, my head tells me there are things that need to be done but then I stand up and my body says "not a chance!" It's incredibly frustrating.
I am working really well with Zoe and I am trying to keep my body as strong as it can be.
It's been really difficult over the past few weeks because of getting COVID and the negative impact that has had on both Martin and I, but we are slowly recovering and even though I want to throw myself back into doing as much physio as I can, Zoe pointed out that it's going to take time so don't push myself too much.
Unfortunately this is another thing I am very bad at. I want to be able to do everything now so why won't my body let me? For me, having a chronic condition, like MS, is as much a mental battle as it is a physical one and that is another area that I struggle with. I am constantly beating myself up about what I can't do or I'm getting frustrated because I want to do things that I just can't manage. Why do I do this, I know I have MS and I know that I have plenty of limitations but I still convince myself that I can do everything, when I know I can't. 🤔
Talking things through with Zoe has helped me realise that I need to be kinder to myself. I need to give myself a break and not be so hard on myself but I find all this incredibly difficult. The way I have always thought is that I need to push myself to keep me going. If I'm kind to me and don't push myself surely I am giving up and I will end up in a wheelchair more quickly? But by pushing myself so much, to do things that I know I will struggle with, not only am I in danger of causing injuries, which would be the last thing that either Martin or I need, but it exacerbates the fatigue I feel and if I can't do something maybe I need to accept that rather than pushing myself into trying and not succeeding?!
All this thinking is starting to hurt my poor little brain but it has been a good thing because I am slowly realising that being kind to myself isn't "giving up" it's just another way of being practical. Using my wheelchair isn't "being lazy" it is helping to conserve my, already low, energy reserves. I need to stop beating myself up and give myself a break but it's easier writing it down than it is doing it, so thank you Zoe for helping to keep me on my feet but also for helping me to see things more clearly!
Please keep your fingers crossed that I can put these thoughts into practice and keep your positive thoughts coming too, thank you! 🥰
Love & hugs
XxXxX 💕
Oh and some much needed Rosie love! 😻
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