As some of you will know I dropped out of my uni course last year after a couple of weeks due to loads of different reasons. I had really hoped that by taking a year out that both my mental and physical health would be better. But that has not been the case, in fact my health is probably in some ways the worst its ever been compared to last year. But my mental health is way better which is why I decided to still go ahead with going to uni again this year with a course better suited to me, amd a uni closer to home with better disability services.
I still have a few things loaming in regard to medical shit, lupus , IBD testing, waiting for treatment for chronic migraines. But my current diagnosis have been helping me get some support in place for uni, enough that I feel well supported in regards to POTS,IST Cluster headaches, chronic migraines and ADHD.
Being Coeliac makes it quite difficult to eat, but Im working on getting used to making my own food.
My whole mindset is different I feel like in the last year I went through all of the stages of grief and I'm at the stage of agreeing this all fucking sucks, but at the acceptance stage of it all. Yes I might be sick, but I'm still going to achieve my dreams and make life work for me.
Being a people pleaser has not been easy, as the most important thing with chronic illness is you have to avoid stress like the plague. This means setting boundaries with people, only messaging back to people when you have energy, cancelling plans, people don't like it. But I've really learnt you have to put your health first, weather it comes off as rude or not. A lot of abled bodied people aren't going to get it, but the few that care will try the hardest to understand where you are coming from.
Ironically this has been the best thing ever for my mental health, having had a difficult childhood with a bully as a parent. I was constantly scared of doing things wrong without realising it, people being upset, I felt my job was to make everyone happy. And sometimes if I'm honest I still do, but the thing is I now have to focus so much on looking after myself and checking in on how I'm feeling that I've finally learnt what it is to put yourself first, its uncomfy at times, you will feel like a shit person but its truly necessary. In fact its necessary for everyone
But especially if you are chronically ill, if you push through something you could flare and end up in hospital.
Another thing I've learnt is that you have to be brave and put yourself out there. My confidence really took a hit and I had to work through a lot of internalised ableism to realise I'm disabled. And one of them was not masking how I'm feeling all the time, being honest with people, not covering up every sore or rash. But also having fun, realising I can go to something and not feel trapped with an symptom and feel like I have to stay, I can leave early as to lay down.
I suppose what I'm trying to say that is the mindset of chronic illness is shitty but my life doesn't have to be really hit me. the last couple of months have been really hard, I've had a lot of tests, been moving for uni, flaring, new ideas for what is going wrong (the worst one has to be the brain mri scan the claustrophobia was not fun).
Love Amy x
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