This weeks photo may be a little strange but I really wanted to express how lucky I feel to be able to have my treatment and how amazing our NHS is.
For the last two months I’ve had two five day treatments of IVIG at my local hospital. I have a rare, incurable condition. No-one really knows how to treat it, but I do feel as though I have a really good consultant who listens to me. And the help I get on the NHS has been invaluable, I really do feel lucky.
The Ordinary Moments – Lucky
My life has been anything but ordinary, but usually the not so ordinary stuff has happened to family members. Then five years ago (and 10 months) I was struck down over night with a really rare condition that left me in constant pain and unable to walk unaided. Even with aids I can’t walk very far. My life was turned upside down and everything changed.
I was first told that I would recover, but later given another diagnosis which was progressive. So I won’t recover but I will get worse. Its a lot to digest, but what can I do? I have done a lot of research, I speak with my consultant. There is still one drug that he won’t agree with me on, but he’s in charge of my medication. There is still a very risky treatment that I could try which may or may not work, but I doubt it would be approved and even if it was I don’t know if I would be willing to take the risk (or agree to not be with my family for months especially with no guarantee that I would be cured afterwards, or even survive.)
So, I consider myself very lucky, not because of my crippling illness but because of the care I receive. I get care from my family who look after me, I get care from my consultant who listens to me and I get the most lovely care from the hospital staff. Honestly, the staff in the day ward I attend are really, really lovely. They listen, they care, they help and they make me feel comfortable at all times.
So, I may spend four hours a day on a hospital ward being hooked up to the machine above. I may suffer massive headaches, severe tiredness and coldness while the treatment continues. And I may have another darn side affect of intense itching this time. But it does help stop the progression of my condition. I won’t be cured, but I’m lucky that I have a way of stopping me getting worse.
Three Link ups today: