Out of control

I'm sitting here with my laptop, trying to figure out what to write, and even where to start. I've been wanting to write something for the last few weeks, to try and formulate how I feel and express the many emotions that have been surfacing.

An intensely dark period followed my last post Of determination, dreams and despair. The boundary between being confined by overwhelming illness and the prospect of some improvement is a delicate one. Improvements may appear minor to the outsider - for example being able to get up, take a shower, and make breakfast in one go without becoming breathless, having palpitations, and needing to rest - but for me they are huge. 

The trap of overdoing things is still real, because being a 'doing' type of person means I automatically fall into my M.O. of going for it, even after all these months. Nowadays, this could mean getting up, taking a shower, making breakfast, and then something else on top - for example walking to the shop around the corner - instead of taking a rest break. After so many months of forced confinement, it's hard to avoid the pull of doing things you haven't been able to do for a while.

The reality is that these minor improvements mean that I am only just getting back to a normal routine - so adding another activity (going to the shop) on top is actually pushing me beyond my capabilities. It seems so clear on paper, but in real life, you want to feel some normalcy after being so ill for so long. So, pushing beyond my capabilities is only using up energy that I don't have to spend. In this case, it leads to a setback.

I feel stupid explaining it like this, because it makes me feel like an idiot for not being more sensible and knowing that I need to be measured and more careful. There is a great analogy for those with chronic or autoimmune illnesses like mine, called the Spoon Theory (READ IT!). Essentially we only have so many spoons to allocate to tasks in a day, and we need to choose what we spend them on wisely. After all these months, I don't have additional spoons; I should know better. 

Or should I?

Light and shadows - Loch Morlich, Aviemore 2015 ©

At the moment, recovery/slow improvement is a new phenomenon in my life. It's hard to get used to in the sense that it is so delicate, and it will be undone with the most minor extra exacerbations. I can't get too excited about it. Setbacks have occurred a couple of times since the New Year, and mentally they are very difficult to cope with. They feed the fear that I won't ever get better, to a state more closely resembling 'normalcy'. I suppose they also highlight that I still haven't been able to fully accept my illness. I still steadfastly believe that it will go away. I want it to go away. I want it to stop.

For someone who likes to be in control, this is a super challenging situation to be in. At the moment, it makes me feel out of control, in every sense of my life: work, relationships, health, dreams, future options, resilience...you name it. I am not in control; my illness is. It's made me feel like a walking emotional mess, particularly with the added extra stressors of dealing with the inhumane benefits system, pressures to return to work quickly, and question marks hanging over my future (can I ever cope with having children? Will I always be in this awful limbo of an existence?). 

Every day of the last eight weeks I find myself having a moment where I feel a flash go through me, when my being screams for it all to stop, wishing to just disappear. It's scary to feel so out of control by such an invisible force, and I really don't wish for it to win or conquer over me. The support of others to just be there, listen to my worries, or even to hold my hand through the challenges, breaking them down into manageable pieces, is invaluable at this time.