When I first realised how sick I had got, I was in disbelief about how sick I had got. All summer I had tried to think my way out of it, because that's what I had done for every situation in my life. When I had to drop out I had these dreams that travelling would cure what I thought was depression. But when the doctors wouldn't sign me off as fit to travel my hopes were dashed. I thought oh well I will work, then I had to quit because my health just couldn't cope with even a 4 hour shift let alone 10 hour shifts. When I thought that a cardiologist would have answers for me, but all he did agree was there was defo something wrong with me, but he didn't believe in treating pots syndrome patients, my hopes were also dashed. That's one thing I have learnt about being chronically ill, is everything feels like a set back, one stpe forward and like 5 steps backwards.
It changed me from being this optimistic person who would laugh at life, to becoming a person who felt like there whole life was crumbling down. It was frustrating as I had spent so much time building my life up so I would never be that scared little girl locked in the bathroom trying to stop them self from crying while my dad punches the door. But yet here I was, a drop out, I couldn't even enjoy my gap year. I was suicidal, but I also really wanted to live, a very odd feeling, and you could say but how can you be suicidal but want to live? I wanted to live but in a different body, a different circumstance. I wish I could tell you that my life is different because you know I did this and that, but really my life is different now because of medication.
I was listening to a podcast by Paula Sojo (really would recommend following her), she was talking about how even though being chronically ill feels like a set back, its actually a re direction. And I truly belive that. Even though some days it doesnt feel im out of the woods yet (this a taylor swift refernce to all the non swifties out there).
What happened to me was a re direction, before finding out how sick I was, I had this life planned out in my head. I would do media production, build up a skill, get a job, have a family, then I would retire and travel. But becoming ill, all od the sudden I had to learn to do nothing, to just simply rest. My priority became to look after myself, I started reading again, i built up this blog that I had always wanted to create, I started a podcast that I had always dreamed of. I spent my day deciding weather I would write or read or watch tv today. I gave myself permission to rest as Im extremely priveldged that I had a roof over my head and a mum who understand my medical condions and was willing to support me. Before my worth had been based over how productive I was. I had been working towards something my entire life, I was working from a young age at the guest hosue my parents ran, working for my dad in the garden and woods, working on our small holding, working at stables, then working on our house and garden so we could move, working on finding a place to live, working on my a levels,working on surviving pandemic. I felt like maybe I was justified to take a break from school and work, and I know u dont ahve to justify work, but this way of thinking made me realise what a privledge being given time is like, I could work out what I really liked and disliked. I found I loved wriitng so much, i found that I like reading wlw romance books. But at times espeically back then it didnt feel like time, laying there in pain, feeling like im not alive simply watching life go on from my bed.
It was a dark times, and even though i feel "better"now, I still have nightmares of how sick I was, insane amount of anxiety over doctors and medical stuff which just comes with medical gaslight and chronic illness, I still struggle with some symptoms that I particularly bothersome for me- faitgue, brain fog, joint pain and stiffness, throbbing leg and back, shoulder pain, so the war is not over yet and probably will never be. But I truly don't think being ill has set me back in any way. Life will be harder going forward, but as I make small steps out of my comfort zone Im realising I dont ever have to lay on a dirty Sainsburys toilet, as my vison and , hearing goes and being so afraid and in so much pain, I dont ever have to be ashamed of being ill and alone. My therapist once asked me "what better would look like to me", and if I was to reply it would look like this being able to feel 30% less bad. So though these last year would not be something I would like to re-live ever and will truly be some of my darkest days with no exaggerations, it gave me space.
Love Amy
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