Here we are 4 months into the New Year, 4 months since my official diagnosis, Spring is springing, life carries on around us but not quite as we knew it. I still can’t come to terms with what is happening to me, walking isbecoming a real problem for me, I applied and was granted a blue badge for the car, PIP granted.
I accepted an invitation to attend Bedford daycare Hospice, after a short visit and look round, I decided it was not for me, not at the moment, not ever, who knows. I have to say that Lesley and I have attended some horrific medical appointments, my GP, young inexperienced in all MND matters (I am his first MND patient), as soon as i was given the diagnosis he wanted to know where I wanted to die and did I want a DNR (do not rescucitate) putting on my notes. We’ve cried, sobbed at the callousness of some of these professionals bedside manner, we also occasionally laugh, our black humour gets us through sometimes. He was bloody determined to give me a DNR form, he handed it to Lesley who put it away somewhere safe, its not been read by either of us, it’s too painful, however Lesley did threaten that if I annoy her she’ll whip it out, black humour gets us through...
I reluctantly gave in and borrowed a mobility scooter for our recent visit to our holiday caravan in Cromer. The whole process of getting it out of the car and built is down to Lesley, while i sit and wait, me the big strong man who would never even let her carry a bag of shopping from the car! It served a purpose and i do realise it gives me a certain freedom but at the moment I hate it for so many reasons!
Good days, bad days, my recent visit to Papworth Hospital to see my respiratory consultant, was positive, every 5 weeks i attend a 3 hour appointment where im put through a series of breathing tests, blood gases measured and i was happy to hear im fairly stable with not a lot of difference since my last appointment in February. We came out of the hospital, floating and even pushed the boat out and visited the local Tesco for a celebratory lunch!
The following day i was invited to attend an appointment at Kings College Hospital in London to be considered for inclusion on a medical trial. After a few hours of tests i was devastated to learn i would not be accepted as my lung capacity is only 60% just not good enough for that trial. I can’t explain how crushed i felt, as i said good days, bad days.
Had a very scary incident of not being able to breathe one tea time, it just suddenly felt like my throat was closing up, after a sudden coughing fit i couldn’t get my breath. Lesley rang the dr’s (unhelpful), the MND nurse (didn’t answer), 111 (put on hold)..finally after she begged me I gave in and agreed she should call 999. About 10 mins later, after first knocking at the wrong house, 2 teams turned up, at one point in our bedroom their was a police officer (don’t ask), a nurse and 3 paramedics googling why MND patients shouldn’t receive oxygen, (google it). Anyway full praise for the wonderful paramedics who calmed me down, did all the checks and packed me off to the hospital out of hours doctor for a dose of anti-biotics, I’m not being overly dramatic by saying a chest infection to me would be very bad news and something I must avoid. Anyone thinking of visiting me if you’ve got a cold you’re seriously not welcome.
Good news we finally got married, all arranged in around 5 weeks, easy peasey! It was a small wedding with just our families present, but it was the most perfect Spring day. I worried beforehand that I would not be well enough, or something would happen...thats the thing with this dreadful disease all your plans have to be able to be broken, the uncertainty of tomorrow is a given. Our honeymoon plans were interrupted by hospital appointments but we still managed a couple of days away in Cromer.
Lots happening in the next few weeks, my youngest daughter is getting married, i will be walking her down the aisle. We are sharing the evening of her special day with a joint wedding party for all our families and friends. Then after that i am still hoping to do the Camino Way bike ride, still in the planning stage at the moment, although I have been cleared to fly by my Consultant the thought of struggling to breathe 35000feet in the sky is worrying me slightly!
So thats it for now, Life with MND sucks, true fact!