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For months now I've had an abundance of ideas for blog posts on chronic illness. For some reason I've just found myself reluctant to write about any of them, as much as I've been enthusiastic about the topics when they first sprang to mind. I can't really say why I've felt so opposed to writing anything on the matter, maybe I have just felt the need to escape something that is currently controlling my everyday life. Last night this unwillingness to write about anything chronic illness related finally dissolved. I felt an impetuous urge to write about something that I hadn't even thought about before.
That something was brought to light by the fact that this weekend happens to be the annual weekend of a fair night in a local town. The realisation came to me that this weekend seven years ago was the weekend that I had attended the fair with my friends for the first time, at the age of fourteen. Believe it or not, this was the first fair I had been to and I absolutely loved it, however, towards the end of the night I began to feel very unwell. I was staying at one of my friends houses that night and after complaining to her that I was feeling ill and wished I was going home to my own bed, she had told me not to worry and had made me a special camp bed. The following day (Sunday) I was still feeling unwell, I had a sore throat and generally felt exhausted and like I had a virus. Of course I had done the classic leave my homework until the day before it's due in and ended up sitting up quite late attempting to do some folder work for textiles. I eventually shared my homework woes with my mum, saying that I had to get it done but just felt so ill that I could barely do anything - her response was that if I really was that unwell I wouldn't be able to go to school the following day anyway. I remember feeling relief at this and feeling glad that my mum could actually see how ill I was - as her response was usually 'well go in and if you're feeling that ill I will pick you up'. This relief at my poor homework organisation skills being saved by a virus would probably not have existed if I had known that I would soon be diagnosed with glandular fever and then CFS/ME and not return to school properly for another two years. As it turns out my textiles coursework was never completed as I ended up having to drop all of my GCSE's but four.
Seven years on and my life is still being severely effected by catching that virus and as a result developing CFS/ME. I had no idea that in seven years time my day to day life would be dominated by crippling exhaustion and pain, I would need a wheelchair for anything that involved more than five minutes of walking or standing and would genuinely be jealous of elderly peoples social lives. I've never really stopped and thought about how my life changed so much over one weekend. In all honesty I do feel incredibly lucky for how much I have achieved and recovered despite being diagnosed with a chronic illness. Up until just over a year ago I had managed to recover to a point where I had almost forgotten about being ill. I went to University, I could occasionally exercise, I could socialise and go on nights out with friends, I could walk long distances and I could concentrate for much longer periods of time. I no longer had to think about the consequences of doing things before I had done them or say 'no' to things because of my illness. My illness no longer controlled me or my life.
Unfortunately it's safe to say that for the mean time, those days are over. Over the past month I have begun to slowly make progress and improve the amount of time I am able to be out for, the distance I am able to walk, and the times per week I am able to leave the house but I am still mostly housebound, unable to shower daily and unable to walk unaided for more than about five minutes. Leaving the house is precarious and I have to make plans with designated days before and after to rest and recover, I have to take painkillers and heat or ice packs wherever I go and am only able to hold conversation with people for a limited time before it leaves me exhausted. I don't want this to be a negative post or something that leaves me feeling depressed. One thing that living with an unpredictable and often debilitating illness has taught me is that despite how bad one day may be, you never know what you will be doing or achieving in a month or year's time. When I first became ill and had to drop my GCSE's to four I never would have imagined that I would achieve an A* in art at A level or be at university and living on my own one day. It has also taught me to be grateful for every little thing that I am able to do. A few weeks ago I couldn't even handle sitting in a car, but this week I have been out of the house three times (the most in months) and been able to be in the company of my friends for more than an hour. I may be unable to leave the house today or at some points even stand up, but I have had an amazing week and am grateful for what I have been able to do. I am also grateful that today I don't need to be in a dark room and am able to sit in the lounge rather than my bedroom and have felt well enough to go downstairs and make myself food.
I think that when it comes to chronic illness, something very important not to forget is your worst point. Don't forget how far you have come and that you are able to do things today that at one point may have seemed impossible. I feel strongly that no ones problems are irrelevant and am not a fan of the saying 'there is always someone worse off'. Not allowing yourself to feel upset isn't healthy, but once I'm finished feeling upset I'm going to remind myself of what I can do and how the way I feel today isn't permanent. I am also never going to take for granted anything I can do on my 'better' days.
