Going Stir Crazy and Feeling Guilty

Okay, so first things first. I have had so many messages from everyone and honestly, I've not really replied to anyone. Please don't take this to heart, I think it's just that I know once I start replying, everyone wants to know "the story" and typing it out time after time, isn't really what I want to be doing right now. Living with it is bad enough and reliving it time after time right now; well, I just don't think it'll do me any good.

So I went to see the specialist and unsurprisingly, there were no answers I could get that fast; from a 30 minute consultation. I don't know what I'd hoped for in such a short amount of time but I left there feeling deflated and empty. One thing he said to me at the end of the consultation which left me in tears was, "from the preliminary findings, I don't think you're going to die". He was happy when he said this. All I wanted to scream was "whoop-de-fucking-do, I'm not going to die...but that doesn't tell me what's wrong with me and how to deal with the daily struggles that I'm experiencing NOW". I've made some pretty life-altering decisions since then; none that I really want to broadcast over the internet but all will be revealed in time.

He took me in under his NHS list (this was a private appointment) but now the tests begin again. As soon as I get a referral from my GP, it all starts over. Holter machines, echos, scans, ECGs; you name it, I'll be getting it. I feel like this happens every few years and the whole process starts over, just to be told the same things, with the same outcomes.

Now, realistically, I have known for a while that I have 3 options. Tablets (which my doctor advises against as I'm so young), another heart op or a pacemaker. None of these sounded particularly appealing to me, so for the past year, I've just pretended that I'm normal and that these things don't exist. Silly really, because now I'm struggling to do really simple things like walking to the corner shop without intense chest pains and needing a sit/lie down afterwards.

Which leads me to where I am now, going stir crazy. I am so used to being active. Obviously, I'm usually at work for half the week which takes up a large chunk of my week, which I'm currently not doing, and as I said earlier, leaving the house usually leaves me in such a state, the majority of the time I'm just sat indoors. By myself. Slowly losing my mind. If you live nearby and want a catch up, please feel free to message me; a chat and a cup of tea sounds glorious right now.

I managed to go on holiday! Aside from the travel being an absolute nightmare on my body, laying on a sunbed for about 8 hours a day really helped. Sometimes I have to be forced to do nothing and this really helped.

I have been driving myself mad with guilt recently and last night I came across this quote in a book I was reading (POTS: Together We Stand: pg 411): "Avoid Feeling Guilty. Guilt is a powerful emotion that can strike anyone with a life-altering chronic illness, and it can be particularly severe during a flare-up. If you concentrate on what you cannot physically accomplish while feeling ill, you can easily become overwhelmed, frustrated and depressed. Feelings of inadequacy, envy, anger and family discord may also surface during such a stressful time. When experiencing a flare-up, it is best not to dwell on what cannot be done (i.e. go to school or work, clean the house, cook dinner etc). Instead, convince yourself that you will be able to do some or all of these activities once you are feeling better and look forward to the time when accomplishing what you set out to do is possible".

Naturally, I cried my eyes out reading this. The good old term of "flare-ups". My last one lasted just over two months, this one has only been just over two weeks at the moment. Guilt is such a huge part of chronic illness. I feel guilty for being "lazy" and "useless", when deep down, I know I'm not either of those things: just ill. And envy. I scroll through Facebook, angry at the people posting trivial things such as, "Oh I can't find my car keys" or "Oh, I've forgotten this" and think, "Wish that was all I had to bloody moan about" or seeing someone on holiday (family included) drinking even one glass of alcohol and thinking, "wish I could have one glass and still be able to sit at a table and function normally". Of course, I know this isn't healthy but sadly, I do still have very low moments; especially during flare-ups.

I know I'm a fine one to talk but if you're struggling with an illness, try not to drive yourself mad with negative thoughts, keep your mind motivated on small tasks and be proud of what you have accomplished that day, no matter how small. Today I'm proud that I managed to type up this blog post. Only small but I did something, rather than sat and felt sorry for myself, like I have been doing.

Thank you all for your continued support and here we go again, on the never-ending journey of a chronic illness. Share this post, leave a comment, tell your friends. Lets keep the POTS awareness going.
For now and always,

Zoe x

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