The last month has felt like me going through the 5 stages of grief. I think I am coming to terms with the fact I have POTS a chronic illness. It comes in waves as does most of life. Some days I think I'm capable of living as long as I'm careful and have support. Some moments I can forget about it and feel entirely in the moment. It's a brief moment in time, but those are the moments Im living for, laughing with my friends, eating fudge, watching films with my friends. But other moments the crushing realisation of being sick, swallows me whole. Its a suffocating scary feeling, yo know that I might never be able to climb a mountain again. That even if I wanted to, i would never be able to compete with horses again. There are certain jobs I cant do, someday I'm content this is my life, because in a way nothing else materiel so concerned with keeping myself alive. Other days I'm angry, angry at the world nothing in particular just the reality of this. Someday Im content with the knowledge that having a fun day away seeing friends will bring me pain, its worth it to see them. But its such a frustrating reality that this is it, this is my life at the moment. Its tiring managing your life, so you can stay alive. Its tiring thinking over which activity, food could trigger a flare up or episode. When I mess it up and make a mistake I used to beat myself up. I'm soon learning that sometimes threes nothing I can do, sometimes it just happens. And I'm trying my very best, to manage a illness that not many doctors even know lots about. All I can do is try.
I'm also learning that I don't have to be productive all the time. I was brought up in the idea that rest was earned, i could only sit down and take a break for water once all the chores are done. TV was only allowed once everything was done. I learnt that I had to earn the right to exits. Where in fact Mi learning, that I can just exist, I don't have to be doing something to be worthy of my place here. I've recently quit my job, and am not planning on having one till next year because of doctors' appointments, and it was making my symptoms worse. And when people mentioned that I should not work for a month, it made me so scared. This was new to actually have no responsibilities to anything, or pressure to do anything. I am in a privileged position to have a mum who truly understands so I can take this break.
Medical gaslighting is a totally real thing. I plan on doing a whole article on this. But i also wanted to add this in. As I am angry, angry that for months ive been told. That I look and sound healthy, that this is probably a me thing, that I'm just underweight, its just IBS, just anxiety, just need to exercise more. I'm angry that I wasn't taken seriously, that I began to doubt myself. That I thought I was being lazy, or going insane. I'm angry that I thought i was failing therapy (a ridiculous notion). Im angry that it took seeing over 6 health professionals before someone mentioned that I had a serious heart problem that needs looked at. I'm angry that I had to see another 2 doctors, before I found one who was willing to do anything about it. I'm angry that in the last few months I've had over 4 blood tests, over 6 ecg, all the same tests. I'm angry that its taken months of me and my mum saying something isn't right to be listened to. Don't get me wrong Im totally grateful for the doctors who have looked after me, explained everything and helped me. The first out of hours doctor who was appalled how many people had looked over my symtoms, who had pushed me to get it looked at. To the urgent appointment doctor, who took me seriously, when me and my mum mentioned weather i could have pots, who recommended some self-treatment while I wait on cardiologist. To mu current gp who finally didn't dismiss my pain and symptoms. As well as grateful for the kind receptionists, who helped get the appointments i needed. And countless other workers. But I will forever be angry, that I felt like I was going insane for months.
I'm learning to not be as anxious over life, or as controlling. One thing about being sick, is I've really learnt that you cant plan your life out. And that maybe life isn't actually meant to be planned out. Maybe its just meant to be lived. The thing with being ill, is that takes over. Nothing else matters as much, your life is just consumed by looking after yourself. Which in a way sounds kind of sad, but its really made me focus on myself. In a way that I never have. Don't get me wrong, it comes with a lot of worrying, but I've become so much kinder towards myself. For example, I no longer beat myself if i have to say no to something or recognise I cant do something, so this weekend i needed to get to the train station but my whole body was very painful, so i decided rather than push it, to spend that £7 on a taxi. Past me would never have done that, but now me realises that my health comes first. Past me would never have called quits on anything, past me would never have quit her job, past me would never have dropped out, but now me realises the fact that Im in my body for teh rest of my life, work and uni is still there and always will be.
Im learning to be less insecure over friendships or relationships or the way people perceive me. I went through a stage of being ill where I thought no one would want to be my friend or date me. Because there is going to be or is going to be days where I cant move, cant text back. And there are days, where the brain fog is so bad that I want to cry because I genuinely can't keep a conversation going. I was so worried how people would see me now, would they think i was lying? would they abadon me? But Im learning that it casutrophic thinking, that actually hasnt come true. And if it did that would reflect them, not me. I think in a way being ill, is also making me be vulnerable, show people parts of me that i would never usually show. The side I would usually hide away safely in my room. I always described my personality as having a happy side and a sad side, and people rarely got to see my sad part. But in a way being ill, isnt something I can hide, the grief, stress and worries that come with it, cant be hidden. In a way Im probably the most authentic Ive ever been in my entire life, the most honest Ive been with people.
Im learning finally that its okay to be upset, its okay to want to cry when I feel in so much pain I feel like a shell. Its okay that sometimes it feels like I'm wasting away in my bed or sofa. Its okay that i get anxious before doctors appointment, its okay that I'm scared for what the future holds for me, its okay that every time I think of all the things that even with treatment i may never be able to do that I cry, its okay to cry to my mum, its okay to not have it all together, its okay to sit down and rest, its okay that i get sad even with painless procedures because the wires bring me back into reality, its okay to actually not speak to a therapist about all this, its okay if i just want to read a book and spend time with friends and family and just exist for a while.
Being told I have pots has changed a lot of my life. Generally, think January 2022 me would be shocked where I am now. But even through all the grief i still have some hope, I've finally found a gp team that is helping. Ive just had my 24 hour ecg fitting and getting referred to a cardiologist, hopefully finger crossed.
Love Amy x
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