When 2017, which I can only describe as the worst year of my life, came to an end I was so determined to change my outlook on life and also how I lived my life. My life is so far from perfect but despite everything that still effects make life, mainly things out of my control, I am so much happier now. By making life more simple and taking time out for me I am now much happier in myself and my surroundings.
Ever since I came back to the Midlands from Wales in January 2016 I have wanted to go back. The stupid thing is the reason I came back, my health has taken such a nose dive since. The main factor was when I had a unsymptomatic kidney infection which turned in to sepsis and I ended up in a coma. I truly believe if I hadn’t been in hospital for another medical issue, one which still plagues me every day, I wouldn’t be here now. It really is a daily battte with my health and I see no improvements any time soon and realise that I have to make the most of the ‘good’ days which quite frankly are still rubbish days but slightly better than the ‘bad’ days; I don’t leave the house on bad days, sometimes not even my bed. But despite this I am determined to make the most of life.
The last 18 months I have really seen who is in my corner and more importantly who isn’t. I’ve had to go through some hard times and tough choices but I can see now this had to be done. Monday to Friday seems to be filled with work, medical appointments and enforced rest. The weekend is now my time. I am trying to keep all work to Monday to Friday and I have taken the pressure off myself to complete everything I want to do and to rest when I need to instead of trying, unsuccessfully, to plod on.
Being self employed suits my current health situation and I know for a fact I couldn’t go back to work for someone else. I know my health wouldn’t allow a commute to work or have me sat at a desk for x number of hours a day. Due to issues with my back I need to lie down a number of times a day. I spke a couple of weeks ago to my Rheumatologist about this and she referred my for physio. I’ve had issues now for around 17 years and I’ve had physio before many times and it doesn’t make much difference but I agreed to give it at go yet agin. I saw the physio this week and we spent over an hour going through my medial issues and then he proclained that this was very serious and he couldn’t do ant physio until I’ve had an MRI to rule out something as physio could make the matter worse.
It really annoyed me as I have spoken to so many people about this problem over the years, my GP in Wales sent me straight to A&E in an ambulance at one point. I lay on a trolly for 10 hours and then they discharged me because the problem eased. I lie down and the prolem eases but according to the physio I saw I could be doing irreversable damage to my spine, end up in a wheelchair short of damage. He’s told me I need to call an ambulance everytime this happens. I can just see the faces on A&E staff when I turn up 4 or 5 times a week with the same problem. It annoys me that I’ve been fobbed off so many times and I have questioned if is this serious and to be honest I’ve never really had an answer.
For me the most frustrating thing is the unpredictability of my health. Good days and bad days can’t be predicted and it often means plans have to be vague or I could end up cancelling last minute. The annoying thing is when you have paid in advance to do something and you can’t get your money back but are not well enough to do what you planned. Holidays always seem to be last minute and often this isn’t the most economical way to travel.
Despite everything that has happened and everything that I may face in the future I am determined to live life to the full. If it means I need to take things a little slower, then so be it. If iy means I need to take a nap during the day in order to be at my best to have adventures, the so be it.
The biggest change in my life has been to change my mindset on how I deal with things that are out of my control with my health and others people being the biggest examples of things I can’t control. I don’t think I’ll ever be able to expresss what a huge difference has made.
This is my life now, I know I will never be well but I do what I can to be as well as possible and enjoy life as much as I can. Simple things like eating a bag of chips sat on a bench looking out to sea can be so enjoyable when you are sharing this time with the right people. The ones who understand the things you can’t do and never make an issue of it. The people who support you no matter what. I have realised the simplier things can be just as much enjoyed in you face on the positives you have in your life.
Self care has become an important part of my life and it really does make such a huge difference. Also talking kindly to yourself can help your mindset. For 2019, I am going to continue to chase after my dreams, look after myself and those close to me. I know that removing the negatives from my life can only be a positive move.
What are you doing to look after yourself?
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