I've Lost my voice

A lot has changed since I last posted anything, my health is nowhere near where I expected it to

be by now. This has been the longest flare I have ever had, aside from when I first broke my back.
We are seven months in and to say it’s been tough would be a serious understatement.  

As this flare has gone on I’ve had to let go of so many plans and dreams, I am too ill to take on
the course I was intending to start this September. I’m also too ill to do evening courses at college,
which was my back up plan. Currently my energy is so low that showering takes up an entire day
and leaving the house is hard and mostly impossible on my own. I feel as though I have lost my
voice. I’ve been unable to write anything and feel lost. I’m trying to hold on until next Monday, we
should be finding out whether it is or isn’t POTs and can’t wait to know one way or the other. Either
way we’ll be able to form a plan and move forward with life (hopefully).

I’m struggling mentally as well as physically at the moment. A lot of us are guilty of ignoring
mental health in tough physical health times. It’s easier to focus of what we can see but it is so
important to keep a check on your mental health, especially if you’re unwell physically. It’s been
hard to see so many friends flourishing in their independence recently. Of course I am so excited
and proud of them but I’m also jealous. It can feel unfair that they get a wealth of opportunity while
I’m stuck in this ill body with no independence. Then I try to remind myself how lucky I am in what
I do have. After all, “the only time you should look in your neighbour’s bowl is to check they have
enough”.

In other news, I had the tilt table test the other day and can report that it is indeed a medieval
torture technique. I lasted 30 minutes out of 45 but the test had to stop as I was about to be sick
on the technician. My heart rate went from 90 when lying flat to over 160 when standing. It stayed
at 160 for 18 minutes, which is what it should be doing during moderate to vigorous physical
activity, not standing!

Also, after a 6 month wait I have an occupational therapist coming tomorrow to see what help I
can get around the house. They should be able to help with things like the kettle being too heavy
for me to lift, struggling to get up the stairs etc. I’ll update about what swanky new gadgets they
recommend in my next post.

I know this update is a bit all over the shop and not particularly well written, but I wanted to break
the silence and get blogging again. I also thought I should explain what’s been going on!