2014 has been one of the toughest of my 25 years. I have been ill with postural orthostatic tachycardia syndrome since January and the journey to a diagnosis and acceptance was incredibly difficult. From January through to July – I had no idea what was wrong with me and I was having countless tests and seeing lots of different specialists to try and find out. It was a very scary time filled with hope and lots of disappointment. Lots of different conditions were suspected but then quickly ruled out – rheumatoid arthritis, connective tissues disease, lupus, and more. Then I was tested for Lyme Disease and the test came back positive. I was so happy to have a diagnosis and relieved to have finally found out what was wrong with me. But then I had further testing which came back negative and I was devastated and lost again. We did some further research on Lyme and discovered that the testing in the UK is very unreliable and that we would need to get tested abroad which costs a lot of money and even then isn’t anywhere close to being 100% accurate. Lyme disease is a minefield.
In the meantime I was doing some research of my own. And from reading several blogs and websites I discovered an illness I’d never heard of before that matched my symptoms exactly – POTS. I asked to be tested and referred to a POTS specialist which later lead to me being diagnosed with the illness in July. Finally I had my answer. Although we don’t know the cause of my illness (I need further testing for Lyme next year as that is a potential cause), it is so nice to know what’s going on with my body. Knowledge is power. When I was diagnosed I felt lots of mixed emotions – I was devastated to find out that I had another chronic illness that doesn’t have a cure, but also happy to know what was wrong with me. It took a little while for me to get my head around that.
Towards the end of this year I have felt a lot more positive. Although I know that its going to be a long ride, trying to find the right medication to help me manage my symptoms, I am hopeful I can gain some quality of life back in the future. I can also see that good things have come out of me being poorly. I now have a new perepsctive on life – see my post; With Gratitude, Comes Happiness – I am grateful for the simplest things in life now. I am also even closer to my family and my boyfriend that I ever have been. They have all been such an amazing support to me, and there isn’t a night that goes by when I don’t lie in bed and think about how lucky I am to have them. My illness has shown me who my real friends are and those that have stuck by me have been incredible.
I also started my blog this year and my clean eating journey (you can read more about this here) which has helped to give me a purpose again as I had to give up my job and my life in cornwall when I became poorly. Blogging has enabled me to meet some amazing people; others suffering from the same/similar illnesses who I now consider my friends. One special lady in particular, Faye, who I actually knew from uni, got in touch with me as she is also poorly with ME/CFS and we’ve since become very close which is so lovely! You must check out her wonderful blog – it’s so inspiring and is guaranteed to make you smile.
I didn’t do new years resolutions this year as there isn’t much I have control over in my life at the moment, but I do have a few hopes for the year. Obviously my main hope is for my health to improve, and the health of my spoonies friends. I am planning on spending a lot more time in Cornwall this year; I adore it down here so in-between appointments in Gloucestershire I’m going to go home to Cornwall I also hope to be able to go on some little getaways this year with Paddy – he has just learnt to drive so we want to explore Cornwall and go on little adventures to different beaches. If I see some improvements with my health I’d really love to go to Paris as I’ve been dreaming about going a lot recently!
Thank you for all of support in 2014 and I hope in 2015 beings you good health, love and lots and lots of laughs!
What are your New Years Resolutions or hopes?