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A Balancing Act.

Finding the balance is a tricky business - whether it’s finding the balance between educating yourself and obsessing, or between exercising to support your joints, and resting to let your body heal. Perfecting the balance between being strict with foods and drinks you know make your condition worse, and living life without hesitation, enjoying the things you like. Striking the balance between focusing on yourself, your physical and mental health, and not losing touch with your loved ones. The balance between having your condition under control and letting it control you; between not missing out on life and taking a step back when it’s right. The list goes on…

Within my Physiotherapy course at Uni, a woman with Ehlers-Danlos syndrome came to provide a patient perspective to our class. She told me how she overcame the balance between fatigue and getting on with life; working out how much you can do in a day or week and learning to accept you need to rest. It’s not something that becomes a habit overnight – it takes time and commitment – a habit I’m a way off having just yet. This lady was so helpful and inspiring, and I’m grateful for having met her. I feel that everyone with a long-term condition like this needs that kind of help from others – hopefully, this blog will provide that for some of you.

The problems surrounding RA aren’t just there when a flare-up occurs (which is what I guess everyone around us presumes). Though flare-ups do seem the toughest part of it, I find, in a way, it’s easier when people can physically see your pain – the struggle to move because you’re swollen up. What people don’t see is the struggle in between those flare-ups. It’s not just as simple as being able to do something one day and not the next – it’s the unpredictability that’s really tough. For example, I’ve found that if I take a day off work or Uni because of my RA, and I’m not visibly ‘ill’ then people tend to judge. Maybe I’ll see someone I know in public and they’ll say “you don’t look ill, what’s wrong?” or “did you hurt your knee again?”. As much as it’s just an innocent question, it sticks with me forever; that feeling I don’t deserve the rest or time off that I need. The mental strength required to cope with this every day really puts the pressure on, and of course, it’s not likely to change because people are just curious about things they don’t understand. For me, the only way to rise above this is education. We’re allowed to stand up for ourselves, and the best way to do that is to educate people.

Compassion for strangers…

Personally, I struggle with the balance between wanting to keep my RA quiet, and wishing people knew, so if they’re going to judge, they can do it fairly. You could go into the gym having planned a workout, but do one rep of the shoulder or leg press and have to give up. The mental impact of having to then walk away from the machine after one rep is bigger than you could ever imagine, and we probably don’t give ourselves enough credit for dealing with this. Only lasting 20 seconds on the rowing machine and trying not to care what others around you are thinking when we have to get off it. It’s not because we are not strong enough or fit enough or not determined enough, and it’s not because we’re lazy. It’s because we know our own body and our health is more important than other people’s opinions. It’s another thing that is easier said than done, but it’s an important one, and we must remember to put our health before our pride. We know that if we push ourselves too far, even the slightest bit, that for the next few days, weeks or even months, we’ll have to pay for it!

A gym can be an intimating place, and it’s easy to feel self-conscious in that environment. You never know what someone is working through, what injury they’re fighting or underlying condition they may have, so it’s important to be kind. Everyone there is making an effort to improve their health, in their own way, at their own pace. Life is not a competition and we should never compare ourselves to other people – we are all so different and no comparison can ever be valid.

We go to the gym to improve our physical health, but it’s important to consider its impact on our mental health. Exercise is great for mental health, but if you find the gym isn’t the right place for you, and it’s detrimental to your mental health, it may be best to make a change. Someone that really helped me accept that it is okay to feel this way was @jmfitnessuk on Instagram. On her page, she talks about this and it really hit home. I have asked her about my condition and workouts before and she has been so helpful and cheerful. It's the little things like this that I found were not at the gym and these little things are what I needed. Go give her a follow!

If we compare ourselves to the person on the next machine, or even to each other, it really piles on the pressure, subsequently leading to being stuck in a rut. When living with RA, we can’t even compare ourselves to ourselves, we must accept that we are different every single day. We should use this as an opportunity, embrace it as a positive thing. I haven’t quite figured it out yet, but I am nowhere near done trying – for myself and for as many others I can help.

It’s taken some time, but I have accepted that this is me now. RA is a part of me, but it’s not all of me. I want to use my experiences, make the most of all the ups and downs and turn them all to my advantage. I welcome everyone to share all ideas and experiences, to use this space to help yourself and others. Even the little things – something small and insignificant to you may really help another. It might just be the thing they really needed to hear!

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