Keeping positive in my new normal

Keeping positive when you have a chronic illness can be a battle in itself. It’s no surprise that one of the most common symptoms of chronic illness is depression, either as part of the overall illness, or as a ‘side effect’. For many people, your life completely changes and that is a massive challenge to deal with on an emotional level.

For me, this challenge has been different at different stages of my illness. At the beginning, I was so poorly I didn’t really have the emotional energy to even think about being positive and as things dragged on and I was no closer to a clear diagnosis, there was alot of fear. Fear that either something really serious was going on, or fear that I would end up with a diagnosis like ME/CFS, which to be honest was one of my worst nightmares. The fear can start dragging you down and I found myself seeking out ways to avoid letting it take over, such as keeping a journal and speaking to a therapist which I found really helpful. Figuring out what was out of my control, and what I could do to help myself, was key.

As things moved on with my illness and I got over the initial, acute phase, the battle was about coming to terms with having to pace my activity to avoid a crash, something it took me a long time to get right. Keeping positive throughout this was a massive challenge as I was both frustrated at how little I was able to do, and scared of doing too much. There is also no science to it, something I really hate.

There is something called the spoon theory that alot of people with chronic illnesses use as a metaphor of how they try to pace out their activities – you can read more about it here but the general gist is that we each start out with a number of ‘spoons’ a day. Each activity may use a number of spoons, e.g brushing your teeth is one spoon. For someone with a chronic illness, you may start out with 12 spoons so you have to carefully choose what activities you use these spoons on as once they are used, they are gone. You either go into a deficit of spoons, which means you are heading for a crash, or you are stuck on the sofa already in a crash, unable to do much of anything. The spoon theory works well as a metaphor, but doesn’t help me personally in my pacing, as every day is so different. One day I may use all my spoons just blow drying my hair and driving to work. Another day I may be capable of chairing an all day meeting and going for a drink afterwards. It’s impossible to have any real routine so I have had to make my life as flexible as possible to get around this. Thankfully work have mostly been brilliant in letting me work from home when I need to and my son’s school has flexible wrap around care that I can use last minute if I’m struggling with the school run. It’s hard not to view using these options as failures at times though – I hate feeling like I am letting people down, especially my kids, so I have had to reframe how I think of these decisions – rather than failing, I am choosing to make sure I don’t get any worse and therefore need to take sick leave, or not be able to spend time with the kids at all as I am bedbound. I don’t always quite manage this however, so it’s a constant battle to find that balance.

The uncertainty of this illness can also be an emotional battle. Some people recover, others have a mild version for life, a few spend their lives in a quiet dark room, unable to bear even the slightest stimuli. As I’ve said before, I still believe I will recover one day but I do have to face the reality that maybe I won’t. When I think about the future, I tend to make plans for holidays and for my career as if I am the old me, the healthy me. I think ‘well next year I’ll probably he recovered so I can do that’ but I’m starting to realise that’s not helping me emotionally as I am now approaching some events that I booked a long time ago, on the assumption that I’ll be ‘better’. And I’m not. I am better than I was, relatively speaking, but I’m certainly not able to maintain the kind of energy levels that I used to and I struggle with standing, walking, too much stimulus etc. So I think from now on I will start planning future events with the assumption that I will need to make adjustments for my illness and then if I do hit that magical recovery, it will be a bonus.

Finally, I find that one of the most important things I can do to keep positive is to use some of my precious energy on fun things. Not just work, or surviving day to day, but something that gives me joy. It might be joining the family on a day out, meeting a friend for dinner or going to the cinema. I generally don’t feel well enough to do any of these things, and could quite happily stay curled up on the sofa, but so long as I’m not on the verge of a crash I never regret pushing myself to do something that I truly enjoy and it helps me avoid slipping into negative thoughts and feeling sorry for myself.

I think the battle to stay positive, to not slip into negative thought patterns and head down the road of depression isn’t something I’m ever going to ‘win’. It is something I need to constantly be aware of, and managing, like any of my other symptoms and that management is likely to change and evolve over time. I mentioned on a previous post that I was exploring the mind body connection and have started using an app called Curable, which I will write a post about when I’m a bit further into it, but so far I am finding the meditations and mindfulness part of the app pretty useful and these will probably become part of my toolkit going forwards.

I felt awful on this day and couldn’t really walk anywhere, but still had a great time meeting friends for a picnic

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