I usually join in with Sheryl’s writing prompts each month but I know she’s having a rough time at the moment and she hasn’t given any prompts yet for May. I did want to update you on my chronic illness though and one of the main problems have been migraine related.
I guess my main issue the past few weeks are migraines. I had one after my IVIG in April which is quite normal. The immunoglobulins make my blood thicker and can cause migraines. The key is to keep well hydrated, but even on 3 litres of water a day I still managed to get struck with a migraine. Then just a week late I get another one and again this last weekend.
Now, I’ve suffered migraines most of my life. I knew they were hormone related as they would arrive shortly after my monthly period. I didn’t get them during my pregnancies! They were awful and I tried all sorts of treatment. Sumitriptan worked the best but it did put me out of action for a couple of hours. It was worth it, much better than two days of pain. The migraines stopped with my menopause. It’s been talked about a lot lately about the struggles of the menopause and how people talk about it. I almost feel guilty because my menopause was the stopping of my periods and migraines and that’s it. But, I had so many other illnesses to deal with I guess it could have been worse had I been well ?? (work that one out!)
But now, the migraines are back with a vengeance.
On Friday last week I was feeling okay, but around 4pm my head suddenly started to bang. Then I was hit with the migraine from hell. I was completely debilitated by it, unable to do anything. Graham had to cook dinner and I just waited for bedtime. With all my medication I slept well. I did wake up in the night and popped a few more pills because I was still in pain, but then I went back to sleep again. Both Saturday and Sunday I just felt so weak. I did try to do a few things, help with dinner, put some washing on, but I still wasn’t well. At least it took my mind off the rest of my pain.
I’m popping this in because I’ve taken part in a couple of research studies in past month. I had blood taken at the hospital for research into auto-immune conditions. I had to sign a form which allowed them to freeze my blood and use it for future research. I’ve a feeling my blood samples will be around a lot longer than me! I won’t benefit from this but hopefully, they’ll be able to find ways of helping others in the future.
I was also asked to take part in a cancer research campaign. Again, giving up my blood, this time in a van in a Sainsburys car park! They want to test the genetic properties of cancer and if they can detect it sooner with blood tests. Imagine how good this will be in the future, cancer could be found a lot sooner and treated quicker and more successfully! There will be no direct benefit to me but if I’m not put in the control group (Which is randomly assigned) and I do have cancer signals in my blood they will refer me to a specialist.
I’m happy to help with all sorts of medical research. I doubt my body will be of any use to anyone after my death even though I am down as a donor, but at least I can say I’ve done a little to help other’s in the future.
My Blood Tests
I’m still waiting for the results of my blood tests from my consultant. They don’t usually take this long but I guess with the Easter holiday and bank holiday, plus all the back log in the NHS I just need to be patient. My consultant is considering applying for another drug, Rituximab, if I have the rogue anti-bodies in my blood. He doesn’t think I would be accepted for it if I don’t have them and the last test I had was negative. The IVIG is used to remove the anti bodies, so I guess it’s working. It’s like being stuck between a rock and hard place. If the anti-bodies come back they could do more damage to my body, if they stay away I’m not suitable for new treatment. The treatment I currently have is keeping the anti-bodies away but not making me any better. The new treatment could possibly make me better, but I can’t try it unless the current treatment stops working.
So, in simple terms:
Current Treatment – stay stable, not get better
New Treatment – possibly get better, but I can’t have it unless current treatment stops working.