My 4 Year Anniversary
Today marks the anniversary of the day I fell sick. The day I went from being a healthy, normal(-ish!) 24 year old, to living a life restricted by crippling fatigue and malaise. It seems an odd day to notice, but we tend to remember key dates that have changed our lives, it’s just usually these are positive events.
Many doctors believe that if you haven’t recovered from ME/CFS within 5 years, you are unlikely to. This makes every year feel like a countdown: another year lost to illness, another year unable to work, another year of hoping, another year closer to finding I’m a hopeless case.
I try to stay hopeful. A while ago I wrote this blog about hope in uncertainty, and I try to hold on to the message from that. It’s not always easy though. When the days feel endless, when my health declines again, when it’s been months and nothing has changed, it’s hard to keep hope.
To me, it feels like I have no alternative though. Falling into despair isn’t an option. Therefore, the only course I can take is to stay hopeful, and keep trying to put my health first. It’s a constant juggling act of trying to not do too much, trying to maintain whatever activity I can manage without pushing myself over, and trying to do activities to help my mental health without them wiping me out.
These are not things that come naturally to me. I’ve always been very driven and very eager to do things and stay busy. Before I was sick I was working full time and out most nights of the week doing one hobby or another. I was cycling or walking everywhere, which in Bristol means a lot of hills! I seemed unstoppable, until I was forced to stop.
Learning to pace myself and to say no to things has been challenging, but I’ve been trying my best and constantly learning. From the start I’ve been trying to put my health first and do what will give me the best chance of recovery, but the never-ending sickness doesn’t seem to respond to this as well as hoped. For 4 years I’ve been trying to put my health first and to get better, and for 4 years I’ve been disappointed. For 4 years I’ve spent every day feeling unwell, unable to do the things I want to do, and watching my friends live their lives while I feel like I’m stuck in a bubble. For 4 years I’ve been desperately trying to reclaim my health, and frequently reminded that I am not in control by regular setbacks.
I feel like I’m an object bobbing in the ocean, desperately trying to reach the shore, but unable to control the direction in which I move. Sometimes the shore seems to get closer, and I think I’m steering in the right direction, but then a wave will come and wash me back adrift. This wave can be anything: sometimes it will be a period of insomnia, sometimes it will be because I decided to try and attend a social event, sometimes it will be a virus, and sometimes there seems to be no obvious cause.
It is easy to lose hope; it is easy to think that this is forever for me. But a life like this is difficult to consider a life, as it is so far from the life that I wanted for myself. Therefore, I have to hope. I have to keep going, keep trying, keep believing that recovery is possible, keep trying different treatments and keep swallowing the disappointment when they don’t work how I hoped they would.
I spend a lot more time now appreciating the smaller things in life. When I am able to get out the house for a short while, I gaze around in wonder at the world outside. I notice the flowers that bloom in the neighbour’s garden, the way the leaves change on the trees, the bees busily buzzing around. I notice people: the way they charge through life and don’t stop to breathe and enjoy it, the small ways in which people are kind to each other, and they way everyone is glued to their phones! I spend more time trying to make a positive impact in people’s lives any way I can: whether that’s through my writing, sending a card when they’re having a hard time, or ensuring I remember Birthdays and other events – thing’s I was often too busy for before.
My life may seem small to those outside, and it is a life I struggle to be content with, but it is still a life that is worth living. I can still have a positive impact in the lives of others, and try to make a difference in any small way I can. I have met some incredible people as a result of this illness, and they inspire me to keep going and try to spread kindness, even if it has to be from my house.
So today marks 4 years since I got sick. 4 years of struggling, suffering, disappointment, striving, and hoping. I know that doctors aren’t always right, so I try to not think of 5 years as being the end of hope for me, but next year is looming ominously for me. Here’s hoping that this year is the year I do it, the year I recover. If not, I will try to keep hope, try to keep going, and try to make a difference in any way I can.
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