The Frustrations of knowing the benefits of exercise and good sleep in inflammatory arthritis, when you can’t do it and sleep constantly evades you

Blog by Ailsa Bosworth MBE

I’m normally a glass half full, optimistic person and I still am in spite of the rant I’m about to have! However, listening to Dr. Michael Moseley talking on Radio 4 this morning in his programme ‘Just one Thing’ –(to keep your heart, brain and immune system healthy), I wanted to scream at the radio. This morning it was about doing push ups (or press ups) and squats –apparently you need to do 40 press ups to have real benefit –I felt like shouting ‘I can’t even get on the floor, and my wrists don’t bend’. This programme comes with all the benefit of the science, proven research, and careful explanation thoughtfully delivered by medical experts, but that doesn’t help! I know the research into exercise in people with RA and I know how very beneficial it is, I know it reduces your risk of cardiovascular disease, boosts your immune system and I knowthat strengthening exercises will benefit the muscles round the joint!! I just can’t do it in the way in which I would like to. By the way, if you are reading this and have only recently been diagnosed or diagnosed in the last 20 years since the advent of biologics and advanced therapies, it is extremely unlikely that you will experience the levels of damage that I have sustained after 40 years. We didn’t have the drugs available today back then, and you were not treated immediately with high doses of DMARDs (disease modifying anti-rheumatic drugs), so please don’t assume you will experience the problems I’m talking about in this blog! But there will be many of you out there with long-standing disease who willundoubtedly recognise what I’m ranting about!

In another recent ‘Just one Thing’, episode, Dr. Moseley explained that turning the shower onto cold after having a warm or hot shower, for 90 seconds, boosted your immune system. ‘OK I thought’, that’s something I could do which doesn’t involve getting on the floor or jumping/running/fast walking (also things I can’t do). Wild water swimming does seem to be very popular nowadays, but having done a littleGoogling, it seems scientists think it might be thecoldwater rather than the swimming that’s giving the benefit. One study found that having 30-secondcold showersevery morning for 60 days could decrease the number of sick days by 30%. ‘Hurrah’ I thought, let’s give this a go. So, for the last week I’ve been turning the shower down to 30% (that’s cold but not freezing and the shower won’t go any lower anyway!) after my usual hot shower in the morning and so far I’ve managed a fast count to 20, front andback. I can’t tell yet whether this is having any beneficial effect, but I do get out of the shower feeling a bit more awake and alive.

And if I read one more article telling me about the negative effects of poor sleep on practically every system in your body …… in fact it wouldn’t surprise me to hear one morning on the news that poor sleep also makes your teeth fall out! We all know the health-related impact of RA includes joint pain and stiffness, which often lead to poor sleep pattern and depression. Infact, the impact of insomnia and sleep deprivation as a health hazard is now well recognized but no-one seems to help us with this relentless problem.Sleep is considered an important predictor of immunity, and sleep deprivation has been linked to increased susceptibility to infection. There is increasing evidence that sleep deprivation may in fact be a driver for the development or progression of inflammatory joint diseases, including RA. I think what I have is insomnia rather than sleep deprivation (which is different) but once again, knowing all this stuff doesn’t help when you can’t get to sleep AGAIN. I’ve tried going to bed at the same time every night, not watching TV in bed, having everything dark and warm, but not too warm, and end up tossing and turning as usual. In the last year or so I’ve taken to listening to sleep talk down recordings on YouTube and sometimes they do get me off to sleep whilst practising slowed, deep breathing exercises, but it doesn’t last. An hour later I’m staring at the ceiling again and it’s only 3.05 am! I’ve also spoken to my GP on occasions, but she won’t give me sleeping pills and doesn’t seem to have much alternative advice. So, what do you do when your shoulders are painful and you need to lie on your side because youcan’t lie on your back, you have restless legs and can’t stop thrashing about desperately trying to find a position in which you can be comfortable?? Ah yes, tune into Dr. Michael Mosely telling you ‘just one thing’ –the importance of getting a good night’s kip. Hmmm….

I would like to be able to walk more but with all the surgery I’ve had to my feet and ankles over the years and the fact that most of the joints in my feet have spontaneously fused, there are many days when they are too painful to walk. Itdoes vary and on a good day I can manage to walk for maybe 30-45 mins. which does make me feel better. However, after over nearly 14 months of shielding and spending most of my time either sitting in front of my computer working, watching some TV in the evening and then in bed, not sleeping, I feel de-conditioned. Not that I was in great condition before COVID happened! I desperately feel I need to do something.

One beneficial thing I do is sing, and it really boosts me when I hear ‘experts’ talking about the physical benefits of singing. So, even though my choir hasn’t sung together in person since the beginning of last March, I have attended every Zoom choir rehearsal since then and we’ve done some Zoom choir projects which have been published on YouTube. Singing is good for me and it’s something I CAN do! Hurrah. Perhaps that’s my ‘Just one Thing’.

Maybe it’s the frustration of the above situation that drives my passion for supported self-management and raising the profile of the need forholistic annual reviews which measure things like lipid levels (cholesterol), blood pressure, cardiovascular risk, osteoporosis, diabetes and is an opportunity to discuss sleep problems, mental health etc. This disease takes it’s toll over many years lived with it and catching these things early when something positive can be done rather than

allowing them to become critical is super important. Read the article on Cardiovascular Disease in our Spring magazine by George Kitas –knowing about how you can help yourself be as heart healthy as possible is important, even if, like me, you struggle to do some of the component parts of keeping fit!So, what am I going to do about the problems with exercising and sleep? Well, having worried about it for ages, I’ve now found a personal trainer who lives not far from me who has RA herself and I’m going to talk to her next week and see what she can do to help. Watch this space!