I think I usually do ok, I am dealing with this illness in my own way, but most of the time I am dealing with it. At the moment I don’t feel like I am dealing with it, my body is rapidly getting worse, my brain isn’t functioning very well and I have the looming thought of breast cancer hanging over my head - at the moment I just feel broken.
That pretty much sums up how I feel right now. I have had a review / manipulation of both my ankles under aesthetic this week, which was water off a ducks back really. The dysautonomia however, is getting worse and I spend everyday feeling like I have the worst hangover of my life. Which means that I am not really getting a lot done at the moment. I struggle a lot to wake up at a normal time and usually end up going back to sleep until half way through the morning. I then feel dehydrated, nauseous, shortness of breath, dizzy and exhausted – just like I have had a really great night out. I end up falling almost unconscious on the sofa in the afternoon, literally in the middle of a sentence or half way through a row of knitting – I have been woken a couple of times by my husband, just checking I am actually breathing. It is utterly exhausting and I don’t even get the fun of a night out or a glass of wine – I don’t drink alcohol, mostly I drink water and usually a minimum of 2 litres a day. My muscles don’t get enough oxygen so walking upstairs mean my legs shake like I have just done a huge leg session at the gym, very frustrating when I know all I have done is slept on the sofa because I have been too ill to move.
The autonomic dysfunction is a funny one as it doesn’t seem to sit with anyone. Nowadays, consultants are so specialised that the only person that looks after the whole body is your GP. I have been in conversations with my rheumatologist about this and about possible treatments and he has recommended a cardiologist in London who specialises in both cardiology and autonomic dysfunctions. I have emailed them for an appointment, so we will see what happens next!
The evening after doing the first draft of this post I ended up in hospital as I was unable to control the pain levels I was experiencing, at home. You know it’s bad when you hobble into A&E and you tell the nurse what’s wrong and what you have taken and she says – I am surprised you are still standing after that lot let alone still in pain. Thankfully they got me sorted out with a few hours on some pretty potent IV medication.
So, onto next week, I have the rapid breast cancer assessment clinic next week.