Last month I was struggling with a few things that all together were making me feel quite low. Luckily I’ve more or less come out the other side now, but it wasn’t a fun place to be. I’ve since realised that I’m probably not alone in this respect and just wanted to share how these events have impacted on me and to let others with chronic illnesses know that it’s OK for everything to get too much sometimes.
Yesterday marked a year since I set off to America to begin Lyme Disease treatment with the expectation of hopefully seeing some improvement. I honestly can’t believe how quickly that time has gone! A year on I’ve been looking back and reflecting on what has happened since then and making inevitable comparisons between how my health was pre America to how it is currently and there is quite a difference.
I am more poorly now that I was then and have an array of extra symptoms to deal with as a result of the very intensive treatment. Life has therefore become more limited and debilitating. Experiencing what feels like a constant steady decline is hard, especially when others with Lyme disease (or other illnesses) who I know through social media, seem to be making improvements. I am genuinely SO happy to see others getting results – it makes my heart full and gives me hope. I am in no way resentful, but it has been making me feel a little left behind.
Time is ticking on. I have now been ill for almost four years (nine including the amount of time I’ve had chronic pain), and I am getting older. I am approaching 30 (well kind of – I’ll be 29 in February), and want to start doing the things I’ve missed out on in my twenties and looking forward to things I should be doing at this age. For example, lots of people I know are getting engaged and the wedding season has also just begun. I’m over the moon that two of my best friends are getting married next summer! Even though I know there’s no way I’d miss my besties’ weddings, no matter how sick I may be at that time (especially as I’m Maid of Honour at one – EEEEEE so excited) and I’ll push myself to take part in as much of those special days that I possibly can, I just want to be well enough to be able to relax and be a part of these incredible moments without being distracted by pain, fatigue, noise sensitivity etc.
These past couple of weeks I’ve been feeling a lot better mentally and I am feeling more like where I was before what was a rare low point for me. My own personal coping mechanism is to focus on today and live in the present rather than worrying about what might happen in the future. I also realise that making comparisons to how my health was at any given point is not helping the mindset I need to work towards my goal of getting better. Yes, I am feeling more poorly but I need to keep reminding myself that, with all the knowledge we have gained about my illness and the expertise of the specialists we are working with (we have now started working with a Naturopath too), I am so much closer than I was two years ago (when I was first diagnosed) to eventually getting better – and to getting stronger before these big celebrations. Even if I am as poorly as I am today, I will still make the best of it and do what I can and those days will still be so very magical!
It’s important to understand that reading about a few sufferers online who are seeing improvements does not mean that everyone except you is getting better and that you are being left behind. Lots of people don’t want to share the bad stuff or are just too poorly to post and many of those who do share their improvements (and it’s so lovely to see), often relapse and still really struggle day to day but may choose not to share those bad times. It’s easy to get a false impression from social media on just how many people are healing from chronic illness. It isn’t a reliable reflection of how well someone is – it’s a tiny, isolated snapshot of that persons day or week.
Life with chronic illness is tough – the fact that we make it through each day is something to be celebrated. Having a wobbley day/week or month doesn’t make you any less of a fighter; it’s ok to not be ok sometimes, especially considering what we deal with!