Last year, I wrote a blog post for the OMS Whatever it Takes newsletter, Don’t Stop Moving, advocating housework and general ‘life stuff’ as a good substitute for formal exercise. I still stand by that, but this year, I have been focusing more on ‘proper’ exercise, and have begun to appreciate the need for specific, targeted exercise to help overcome some of the problems MS has thrown my way.
In 2016, I had had a rather unsatisfactory physio appointment, followed by an equally unsuccessful referral to council-run gym sessions, the trainer being totally befuddled by my condition and unable to put together a suitable exercise plan for me. After a few weeks of training my upper body (as I wasn’t able to climb on to the lower body machines), I gave up. Not because I couldn’t be bothered to exercise, but because I knew that the exercise I was doing wasn’t benefiting me as much as I would have liked. I decided that it was time to employ the services of a personal trainer.
My personal trainer, Abbie, has been well worth the money. We started with a frank discussion; Abbie knew very little about MS. However, she was willing to be guided by me in terms of what I could and couldn’t do. Unlike the council-run gym sessions, I see Abbie for an hour a week on a one-to-one basis. She is able to assist me onto the gym machines that I struggle with; picking my legs up if necessary, or placing my feet correctly. Because she doesn’t have any preconceived ideas about MS, she tends to push me further than my NHS physios have in the past. Although progress is slow – I have good weeks and bad, as is the nature MS – I do feel that I am making headway.
“She asked me what my goals were. They were to be able to walk to the local bus stop more easily; to be able to walk with just one stick; and, to walk the mile across the Humber Bridge. Most importantly, she showed real belief in me.”
In the summer of 2017, I took part in a trial for a new spasticity drug. A double-blind trial, I still don’t know if I was taking the drug or the placebo (my thoughts are that I was on the placebo). But, more exciting than the drug taking, was the fact that, once a week for two months, I was monitored by a physiotherapist. We developed a good relationship, and she could see that I was desperate to improve my situation. At the end of the trial, she told me exactly which of my muscle groups were not working properly due to spasticity, and gave me some ideas of how I could counteract this. She asked me what my goals were. They were to be able to walk to the local bus stop more easily; to be able to walk with just one stick; and, to walk the mile across the Humber Bridge. Most importantly, she showed real belief in me. For the first time since I became disabled, here was a medical professional saying, “yes, you can.”
I went back to Abbie, armed with the info about my dodgy muscle groups. “Great!” she said, “We can work to improve this.” I was sent home with the instruction to buy some resistance bands so that I could begin the new exercise regime she created for me. Yes, spasticity drugs are all well and good, but after a few days using the resistance bands, I could feel the improvements occurring, as my weaker abductors strengthened, taking some of the strain off my spasticity-bothered adductors. Finally, I felt that I was making a break-through.
A couple of weeks ago, I got a call from my local physio team. The physio from the drug trial (let’s call her ‘Positive Physio’) had referred me to them. Unfortunately, not all physiotherapists are created equally. It began with a visit to me at home, where the physio (for the purposes of this blog post, ‘Negative Physio’) scoped out potential storage space for me to have a wheeled mobility frame, apparently ignoring my desire to cut down on the mobility aids, rather than add to the armory. Her second visit involved me walking to the local post box and back. Slowly. “Well, you can do that,” Negative Physio commented. “I don’t really see that there’s anything I can do to help. Just keep practicing.” She also suggested that I move into a ground floor flat where I could stay for the next thirty years. I’ll be 70 in thirty years, and I’d like to think that I’ll still be managing the stairs. Though if I’m in my ground floor flat I won’t get much chance to practice…
“I know that I will have ups and downs, thanks to the nature of my condition. But doing something is better than accepting there is nothing that can be done. To paraphrase Barack Obama, ‘Change is hard. Change takes time. But change is possible.'”
I appreciate that I need to look at my life realistically, and no doubt that’s what Negative Physio was trying to make me do, but I’m also pretty determined, and I’m not going to give up without a fight. I’m not willing to accept that this is what life has to be like now I have been diagnosed with MS.
Every one of us with MS has different needs and different abilities when it comes to exercise. The sentiment of my previous exercise-related blog post was that it doesn’t matter what you are doing, as long as you are doing something – no matter what your ability or bank balance. In my case, that was doing the housework, and not feeling guilty if I didn’t find the time to fit in a quick yoga session as well. This year, I got a cleaner. I figured that, as several of my able-bodied friends were using the services of a cleaner, I had every excuse to get one too. Now, my days off can be put to better use – namely gym sessions, home exercise sessions, and doing something more interesting with my life than laboriously vacuuming my flat.
I have come to realize that fixing me is down to me. Due to money, time constraints and – possibly – preconceived ideas about MS, I know that I am unlikely to get the support I need from the National Health Service, no matter how well-meaning their healthcare professionals are. What I need are people who will encourage my determination to improve. I know this will take time and dedication to the exercise. I know that I will have ups and downs, thanks to the nature of my condition. But doing something is better than accepting there is nothing that can be done. To paraphrase Barack Obama, “Change is hard. Change takes time. But change is possible.”
Other blogs by Rachel