MY FIGHT TO BE HEARD
I married Jackie in 2010, so never knew him when his stomach caused him so many problems as a much younger man, but was on hand when things became worse in 2011. I am ashamed to say, I allowed myself to believe his GP when she made such a light thing of what was wrong, and it wasn’t until 2013-15 when things became really bad that I got to work properly using the internet to find out what I could.
I avoided the usual suspects such as Wikipaedia because it can be so easily edited by the general public, and I also avoided any sites set up to sell products as they were biased. I used sites such as the NHS’s own website, and the British Society for Haematology whose guidelines are out there to be seen by anybody. I subscribed to medical journals for a while and read articles written by learned scientists and consultants who had conducted research surveys. I also consulted the World Health Organisation and the Centre for Disease Control. All of them were irrefutable, all of them truthful, unbiased and incontrovertible. So, when we finally got to see the haematologist that Jackie talks of in his story, I sat open mouthed as she came out with absolute rubbish! I knew we had to do something drastic, and it was then that I sourced the syringes, needles and B12 in 2 forms (hydroxocobalamin and methylcobalamin) that we needed. I then had a more experienced person teach me how to give an injection.
The change in my husband was astonishing. On an almost daily basis, things improved. When we got to see the neurologist, he was almost blasé about it! He was certainly very supportive but admitted he was unsure why very large doses seem to work. We didn’t care, hubby was getting better and that was all that mattered!
When Heather asked us to help her form a charity we leapt at the chance to actually DO something! It means a lifelong commitment to something so huge, so important and so exciting, but I am very conscious of the fact that although my husband seems to have made an almost total recovery, both Heather and Cindy have long roads to travel and that’s the amazing thing. This initiative is being undertaken by people who are, for the most part, very unwell. Some of them, and their global supporters, are unable to supply their own B12 therapy and are totally reliant on the NHS or the health system of whatever country they live in, and some countries make life almost intolerable for B12 deficiency sufferers.