Well once again there has been a big gap since my last blog. I guess I’m just constantly all over the place at the minute and continuously searching for motivation.
I started writing this blog two days ago and got as far as the first two sentences. Since then I’ve been thinking a lot about why I have this website, why I blog, and what purpose it serves. Ultimately I think the purpose is to highlight invisible disabilities and try to convey the impact they can have, but also to try connect with others who may be in a similar position; if I can help some people along the way know that they are not alone and give them comfort in some form then that would be mission accomplished. It has occurred to me that maybe my posts can come across somewhat self indulgent and personal, however I can only write from my perspective and I aim to be as open and honest as possible, so maybe personal is not a bad thing. What I’m learning about chronic illness and my disabilities is that they are ever changing, and I don’t mean physically, although that often is the case, but more so for me is the mental aspect of it all; sometimes I feel like I have everything under control, I’m ok with where I am and what is going on and sometimes not so much. I think the latter is where I am now.
I feel somewhat lost. Even as I type those word I am wondering what I mean by them, I shall do my best to try and make sense of my thought process surrounding this. I don’t know what the future holds, yes I know that no-one really knows what the next day will bring but there are normally some solids that are more than likely to happen. I have worked for the same company for over fourteen years, and was fairly confident that I had built a solid career. Now I am unable to complete that role, I have discovered another role which I enjoy and is actually a welcome change however, I have no idea how long I will be able to continue doing this current role and what future employment will look like. In my last blog I discussed being able to see my family and how much that meant to me but how the weeks after leaving Somerset were difficult, adjusting back to London life when I just want to move on now, yet for various reasons we are no closer to making that a reality. We have recently returned from Somerset and again that feeling rings true. Previous to our week in Somerset we had a week in Wales, and it was so lovely to escape the city, to be in rural Wales and indulge in a hot tub with amazing scenery and beautiful sunsets, and yet, somehow, I didn’t feel refreshed after that week, I just didn’t feel how I normally would after a holiday.
A life is ultimately constructed of memories, of moments lived, It’s not built of material things but of experiences that shape us, help us to grow and evolve as individuals. The thing with chronic illness and all things associated with it is it’s very isolating, even if you are surrounded by loved ones I find it’s a constant battle within my head; do I talk it about it too much? Am I boring people? Am I still the same person? Are they noticing my tremors and if so should I address it? Oh good I can’t get my words out again! Honestly it’s relentless and frustrating and the good old anxiety makes sure to no let you forget about it. Actually as I’ve been writing I realise where a lot of these feelings stem from. While in Wales I had an assessment for PIP followed a couple of days later by a Rheumatology appointment. Not only did this mean that two of our days were dictated by telephone appointments but also that I was delving a lot deeper into the affects of my conditions on my life than I normally would. To go into depth about the effect chronic illness has on your everyday life and to acknowledge that, rather than using humour – my chosen way of dealing with things – is extremely draining and forces you to reflect on how things have changed.
Perhaps I’m just feeling as though I’m at somewhat of a standstill right now, an impasse if you will, this feeling won’t last forever and I do know that but right now it’s hard to not feel a little lost. I’m sure with how the world has been recently I am not the only one feeling this way, chronic illness or not.