Over a week ago I watched an amazing TV programme called Fabulous Fashionistas, following 6 women between the ages of 73 and 90, who were all stylish (in different ways). They shared a positive attitude and approach to life and enjoying it. As 75 year old Bridget said: “I don’t give a damn what people think about me or the way I dress. I dress for myself because I love style and design and colour.” And I wondered whether dancer and choreographer, Gillian Lynne, 87, had either hypermobility syndrome or Ehlers Danlos syndrome because she had such great flexibility, and is still working: “It’s all about having a purpose. And that’s why I think to retire is dangerous.” Her morning routine includes 40 minutes of stretching every day, which makes me resolve to keep going with my physiotherapy routine although my energy-levels are at an all-time low. I thought Daphne Selfe, an 85 year old model with striking, almost waist-length silver hair, summed everything up perfectly: “Enjoy it as much as you can. After all you don’t get a second chance.”
The fashonistas’ ‘joie de vivre’ shone through and it was an incredibly feel-good film. So feel-good that I’ve watched it again, as their energy and enthusiasm for life is inspirational. It’s been a tough few weeks as I’m still in limbo, waiting to start anti-TNF treatment for rheumatoid arthritis (Humira), so I need all the positivity I can get! I’m hopeful that once I find the right drug for me (hopefully this one), I’ll be able to embrace as many challenges as possible – starting with a 5k run.
Yesterday, when I went for a physiotherapy session, I was offered the chance to try hydrotherapy. As luck would have it, although there is normally at least a 4 week waiting list, amazingly a slot was available the same afternoon. So I turned up a few hours’ later and got into the pool with the physio and one other female (older) patient.
Being immersed in hot water relaxed my joints immediately. The water was warmer than I expected (about 34 degrees celcius). Our physio spent time with each of us in turn to run through exercises, which we practised on the spot. One of these was ‘cycling’ while sitting down on a special underwater seat; another involved walking from left to right while holding the bar. I have a tendency to over-extend my joints (due to hypermobility) so had to work hard to avoid that. By the end of the session, I was exhausted as you don’t realise how much energy you’re using up just doing what initially seem like simple exercises. At the same time, it was fun and we had one or two laughs along the way.
Although it’s too early to say what difference it’s made, my joints did feel less painful while in the pool and I did feel better afterwards. As I’m waiting to go on another drug (Sulfasalazine) which won’t be for another few weeks (I need to have an MRI first), it will be interesting to see what impact this treatment (and other non-drug options) have in the meantime.
For the past few months I’ve been having regular physio sessions at hospital. Because I have Ehlers-Danlos Syndrome Type 3 (hypermobility) on top of Rheumatoid Arthritis, this means my legs and arms are more bendy than most people’s. Plus, apart from chronic pain throughout my body, my back feels ‘floppy’ as my core stability (if that’s what it’s called) isn’t great.
The first time I went, I was given a back brace which I wrapped round my lower back. It looked strangely like a corset. Amazingly, as soon as I put it on I found it easier to stand and move around (normally it takes so much effort just to stand still). Wearing it has also helped alleviate lower back-pain. It’s easier to wear out and about in winter than the summer as I prefer to wear it under my clothes than on top!
When it comes to the exercises, I always want to push myself harder. So the physio will ask me to lean against a wall and slide down to a 45 degree angle, rather than 90 degree angle, and hold the position for a few seconds. Another exercise I’ve been doing while making herbal tea is ‘gluteal strengthening’ – in other words, clenching the buttocks. Also walking backwards, sliding each foot along the floor. Using a bottle of shampoo in one hand and conditioner in the other instead of weights to exercise the muscles in the shoulders (deltoids) and arms (biceps and triceps). These are just some of the exercises I’ve been doing. Although at first it doesn’t feel as if it’s achieving much, I know that cumulatively it’s starting to work as I feel like I have more strength in my muscles. Not sure if there’s a definitive way to measure that though.
One hazard of sliding up and down the wall and holding the position is that if you’re wearing blue jeans (or anything with a strong colour for that matter), it will rub off on the wall. This happened when I stayed with my sister for a few days and her boyfriend noticed a vertical mark in the sitting room, saying: ‘What’s that blue line?’ I was mortified as I suddenly realised that was due to my exercises! Luckily we all saw the funny side and it came off easily with water. I’m looking forward to seeing which exercises I’ll be trying next, as I find it helps distract from the chronic pain as well as there being something slightly comic about the whole situation. It really is a laugh or cry situation when you have multiple chronic health conditions, and my mid-year’s resolution is definitely to do more non-medical things and have more fun.