Hi all. I'm pretty new here, I joined a couple of months ago and I have posted once or twice but never actually introduced myself properly.
I’m 60 and I have ha PA since I was 22. Within the first few months of diagnosis I got the district nurse to train me to self-inject. I was on monthly injections back then and it made sense to be able to do it myself. I’ve always struggled with my energy levels in the last couple of weeks before my injection was due, even when monthly! But then someone (yeah who was that anyway?) decided 3 monthly was sufficient, oh and no they can’t do it themselves, too risky!
Ever since then I have had an ongoing struggle, which has gradually just got worse. This last couple of months I’ve had a lot of stress in my life, illness, with several doses of string antibiotics, and worry over some personal stuff.
I always get a bit clumsy towards the end of my 3 month cycle. But this time has been horrendous, I have dropped every single thing I have touched, some with spectacular results. I attempted to cook Christmas dinner for my parents and ended up badly scalding my wrist, and burning the fingers on my left hand several times.
Then after Boxing Day I was simply unable to stay awake! This lasted for 3 days, and even though it’s better now, I’m still sleeping around a double more time than I usually do.
My B12 isn’t due till 17th January so I rang my GP and asked if I could have an earlier apt. The conversation went like this:
Oh no, we can’t book you in early, you’d have to see a doctor!
Well can I have a doctors apt then?
Oh no, we only have emergency appts.
So, I still don’t have one and I don’t even have a normal apt for the 17th.
I have booked an apt online for the 13th but I want to be prepared for this, I know I am going to come up against a big fat no, but I want to have my injections monthly and I want to do them myself.
I have asked this before, that I be allowed to do them myself, and was told no. It’s a health & safety issue, the nurses are trained, I’m not! Even though I was actually trained by a district nurse, and even though I am trusted to inject myself with insulin 3 times a day.
So, my plan is to write a letter, because I know full well that in a 10 minute apt I am just not going to be able to get everything I want to say across. If the answer is no, I plan to go to see my local MPP, and or the local papers, maybe even national papers. I’ve had enough of living like this. I’ve had enough of not getting the help I need. I’ve just been turned down for knee replacements again because the surgeon did not believe I only smoked 15 a day. OK, I know it’s a bad habit, but did he ask me if I was prepared to give up? No, did he ask me if I was wanted my knees more than my cigarettes? No. He just sat there and said he didn’t believe me and therefore considered me a risk and was discharging me. I’ve also been told I have cancer, and have to have an operation for that. So today, I have stopped smoking, on my own, because I know I need to.
I was confused about the different types of cobalamin I was reading about, but after reading through some of the info o here I think I have that straight now.
But I’m still confused about the readings I hear you all mention. I have never been told my reading figures, never. How would I even get to know them?
Also another question I have is, as my B12 is caused by my body not producing Intrinsic Factor, would B12 patches work for me? I was thinking of them as a temporary relief for times such as now. I could order on amazon and get by Wednesday but I want to know if they’d be any good first. And which are considered the best, if any.