Whether you have been officially shielding or not, we, the so-called “Vulnerable” (with a capital V!) understand in an almost visceral sense, the importance of keeping ourselves and others safe from this virulent, threatening virus. We therefore appreciate more than most that lockdown has been not just necessary but vital in the bid to save lives. However, that doesn’t make it easy.
Indeed, the impact of lockdown on many of us with muscle-wasting conditions has been immense, not least in regards to access to healthcare, physio and exercise. Whilst we understand the cry of politicians and watch social media influencers encouraging people to “get out daily into the fresh air! Go out for a run or a bike ride; meet a friend for a walk; log on to PE with Joe Wicks; heck, go crazy and take up wild swimming in your local river!” our hearts sink as we feel trapped in our houses and, increasingly, in our bodies. Many of my friends from within the neuromuscular community have reported similar challenges to the ones I’ve faced this year and it is a battle that is as much psychological as it is physical.
Pre-covid, I swam 3 - 4 times per week, religiously, something I’ve done for years. I’m even ashamed to say that I regularly bemoaned the effort of this rigid but vital regime, especially during the winter months with the additional struggle of extra layers of clothing. But oh how I miss the water! How I ache for the freedom of movement, for the (albeit short) cardiovascular activity, the opportunity to physically “play” with my child and the release on tight muscles, leading to a lowering of pain levels. But perhaps above all, I miss the sense of knowing that I am doing everything within my power to keep my body as strong as possible for as long as possible, within the constraints of this degenerative disease.
For me, like for many of us, the first lockdown was about day to day survival, putting one foot in front of the other, working, homeschooling and just getting through. The sun was out a lot, which helped of course, as did the daily “walks” on my mobility scooter and the fortune of having a garden. In all honesty, however, I didn’t manage much else. Whilst I didn’t feel guilty about that at the time – I knew I was doing my best under the circumstances – 6 months of no swimming had a huge, negative impact on my body. I have lost muscle. I have lost strength. I have lost fitness. I was just beginning to get back into some kind of pattern again in September and October (lane swimming three times a week by ‘appointment’, at my very well organised local pool) when everything had to shut down again.
When this current lockdown was looming, I felt a sense of panic and even despair. I was not only freaked out at the thought of getting Covid-19 (haven’t we all?) but I was also freaked out about increased deterioration / more rapid progression of muscle wastage. And, let me be frank, this fear DOES lead to feelings of guilt. “I should’ve done more in the first lockdown!”; “it’s my fault that I’m worse!”; “why am I not more motivated!?; “get a grip” etc, but I have found that these feelings can spiral and, ironically, lead to a LACK of motivation and a sort of “I give up” response. It took a good friend of mine to give me a serious kick up the backside about this negative self-talk. She motivated me to take action.
So, over Christmas, I requested a video appointment with Jane Freebody, neuromuscular physiotherapist at the John Radcliffe Hospital in Oxford. I’ve known Jane for several years and she knows my body and limitations as well as its strengths and possibilities. She guided me through a realistic set of daily exercises to focus on strengthening my main muscle groups and also advised me to purchase a pedal exerciser and some theratubes with handles to aid these exercises. I also made an appointment with a local physiotherapist who, under Covid guidelines, is open to see people face to face. Upon Jane’s recommendation, she has been working with me on anti-gravity exercises and PNF (you’ll have to ask Jane what that actually stands for because I don’t recall and, honestly, I’m not even that bothered – I just know that it seems to be helping!).
For the past three weeks or so, I have been religious about completing my daily exercises for approx 15-20 minutes per day, prioritising that time for myself between work, homeschooling and rest. I would be lying if I said I was enjoying it but I AM enjoying the sense of control that it gives me and the sense of knowing that, once again, I am doing everything within my power to maintain as much muscle strength as I can within the constraints of these difficult circumstances and despite the limitations of this disease.
I’d love to hear how others within the MD community are doing with this. I’m sure many of you have managed a lot more successfully than I have and those who have had more focus and motivation throughout this difficult year but I do know that I really have tried my best. I really am very tired and I really cannot wait for the pools to reopen. If ONLY they could be opened, safely, for those of us who RELY on them for our physical and mental wellbeing... In the meantime, I feel I need to make a public statement – on the record.
I, Louise Halling, hereby solemnly pledge that when pools reopen and I can return to my swimming routine, I will never complain about it again!
Louise Halling has limb girdle muscular dystrophy and works as a counsellor and therapist as well as being a mum to a nine-year-old boy called Jacob.
For help staying active, you can see our new Exercise advice for adults with a muscle-wasting condition guidelines.