Extreme fatigue

Fatigue can creep up on me when I’m least expecting it. When I feel I have enough energy to do a certain number of activities in one day (lots of planning involved so I don’t do too much), it can come along and just wipe me out. There’s no way of knowing how long it will stick around for either. Physical exhaustion is only half of it – the kind of tiredness where your whole body feels heavy and every step is a mammoth, painful effort. The emotional and mental side is equally tough. ‘Brain fog’ descends and it can be hard to concentrate, with simple tasks demanding more effort than usual.

Doing gentle exercise (walking) to reduce fatigue might seem counter-productive, but it has helped to strengthen my muscles and to improve my energy levels. Muscle wastage on my arms and legs has contributed to my fatigue so I’m tackling that through a combination of physiotherapy and walking. Pacing myself is easier said than done, but I am getting better at judging how much I can do each day. If it means resting during the day so that I can go out in the evening, that’s what I do. Better than going all-out one day, leading to sheer exhaustion and inability to get things done the next day. Although chronic fatigue is ever-present due to rheumatoid arthritis and Ehlers-Danlos Syndrome, rather than waiting for it to envelop me I am trying to minimise its impact as much as possible. Here’s how: gentle exercise, a healthier diet, plenty of sleep, planned (and fewer) activities, pain relief when it gets really bad, mindfulness to deal with stress, and saying no to things rather than overdoing it. Saying ‘no’ to things is the hardest part. It means I still go out with friends but maybe for a shorter time, allowing me to do more the next day rather than feel totally zonked out and not up to doing anything. Fatigue won’t stop me from achieving things: it may take me longer to get there but often the journey is just as important as the destination.

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I’m possible, not impossible

‘Realistic goals’ is an expression you hear a lot when you have rheumatoid arthritis. If you are used to being super active every day it takes a bit of readjusting to the idea that you can keep active, but not as much as before. Articles on walking for fitness often cite the figure of 10,000 steps a day as the ideal for an average adult. But let’s face it, how many people actually a) wear a pedometer to keep track of their activity or b) even manage to reach this figure? It’s more helpful to think about time and quality of movement rather than the number of exercises you perform.

Yesterday I attended a session on ‘Exercise and Rheumatoid Arthritis’ which was fascinating. Even though I knew the reasons why it was such a good thing, it was valuable to be reminded that it’s not just about easing joint stiffness and improving the range of motion in a joint, but also about keeping your heart healthy and maintaining bone density.

Another useful reminder was thinking about the different exercise types: stretching, strengthening, fitness and balancing. Out of all of these, apparently there is less evidence around balancing as being beneficial for people with RA, but it’s still worth doing. With stretching, the key is to stretch ‘to the point of muscle fatigue’, starting slowly with a 5 second stretch and gradually building up to a 30 second stretch 3 times a week. Easier said than done, as I have definitely over-stretched in the past and regretted it later on! The physio suggested Nordic walking, which sounds intriguing, where you walk with special poles (a bit like ski poles). Definitely something I’m considering.

Strengthening can be as simple as bending the arm and lifting it up, starting without a weight initially, then moving on to do the exercise with a small weight (such as a filled water bottle). Or lifting the legs one at a time while sitting down.

When it comes to balancing, writing your name in the air with your hand or leg seems a fun activity to do – I haven’t tried it yet but planning to do so this evening! Fitness is an interesting one because I used to run every day for an hour but at the moment that just isn’t possible (swollen knees, painful hips etc). The key is to make yourself a little breathless so that you can still talk to someone for 5 minutes. I think walking up stairs or walking fast is a good way to do this as it’s a low-impact activity on the joints. Doing 30 minutes of physical activity 5 times a week may not seem achievable at first, but when you break it down into 5 minutes climbing the stairs, swimming, or walking 5 minutes down the road, it soon adds up.

Although it’s obvious, it was useful to be reminded to cut down the level of exercise if I’ve overdone it, and to take a day off if my joints are swollen or painful. Not forgetting non-slip, shock absorbent footwear – often stylish these days as well as practical.

I left the hospital feeling motivated to stick with the current exercise plan and to consider trying other options (Nordic walking is at the top of the list). A few days ago, I came across an apt description for the way I’m feeling now, which ties in brilliantly with what I learnt in this session – the slogan ‘I’m possible, not impossible’.

Keeping active

Watching Andy Murray playing tennis with Novak Djokovic in the Wimbledon final reminds me how I used to play sport regularly and go for a 1-hour run every day. Of course I could only dream of being as super fit as they are, but I was quite fit. Sometimes, I wonder whether all that running did more harm than good to my joints. To begin with, this is part of having Rheumatoid Arthritis – you start thinking what could I have done differently to avoid getting this? I’ve gradually moved beyond that to deciding it’s important to keep active as possible, just a different level of activity to what I’m used to. That’s been hard to adjust to but making sure I do some exercise each day, mainly a mixture of walking and physio, has kept me going. And it does (mostly) reduce the pain, improve my mood and make my joints feel better, which can only be a good thing.

Physio

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.