"All our dreams can come true, if we have the courage to pursue them"
MY AUTOBIOGRAPHY OF MS
The dates on the links below are when the updates to my autobiography / health diary
were completed. The updates usually cover the time period since the previous one.
There is overlap in what I wrote, as the health diary updates were originally written
for a different site than this one. There are some specific topics which are named
rather than dated, and these have been put in approximately when I was doing them
/ they occurred.
Firstly and most importantly I’d like to say thank you to all of you who have purchased
a copy, it means a lot to me. I really appreciate it and thank you for the positive
feedback, especially on the poems and their introductions. I realise the jokes and
riddles can be hit and miss depending on ones tastes.
Secondly, I need to say thank you to Dee, who edited the book, and brought it up
to a condition in which Bill could do the typesetting and front and back covers for
me. Thank you Bill. They’ve both made me a very happy lady. You’ll see at the back
of my book a list of novels Bill (Allerton) has written and self published, amazon
link here. When you have time please have a look at them, as he has been very helpful
to me, he even let me pay for me the work he did in dinosaurs,
to the delight of his grandchildren, I think they might like this too.
I still have further plans related to the book. I am looking to make it into an audio
book so people like me who’s eye sight is too poor to be able to read it can enjoy
it. The feedback on this plan is that the audio book should probably just be for
the poems section of the book as the ordering and timing of the jokes and riddles
part would be extremely difficult to do. This is a little disappointing for me, but
Marcus, who is exploring how to record it all, has promised to record the jokes and
riddles just for me, so I can listen to and continue to remember them all. Be warned
I won’t ever forget any of them.
Marcus has the time to do this at the moment as he has just finished taking his GCSE
exams, we’re hoping he did well in them.
I am also hoping to get an article about my book, and me, in MS-UK’s New Pathways
magazine, we’ll see if this pans out long term but currently it seems promising unlike
the local paper which disappointingly was a dead end.
The book has been the definite positive of the last 6 months, other things have chugged
along generally, apart from one hospitalisation when another Kidney Stone dropped
I told you in a stop press of the January 2022 update that a District Nurse had pulled
my Nephrostomy out. This meant the Urology consultants and I had to have a rethink
in strategy. The decision was made that it would be lowest risk to not to put another
Nephrostomy in but to run me on low dose antibiotics to help sterilise the urine
and prevent infections building. This strategy worked well until a 17mm Kidney Stone
dropped and sent my body balance out of whack.
Kidney Stones dropping are an extra big problem for me because I have only 1 Kidney,
which means the body can’t compensate by kicking the other Kidney into a higher gear,
so all my vitals get out of balance very quickly which also aids the spread of infections,
not a good combination.
Again it happened at the weekend, and on a bank holiday too boot; my brother says
I deliberately choose these times, I don’t! It was on the long Jubilee weekend when
the stone dropped. My pee had been getting discoloured for about a week before, which
must have been due to Kidney Stone debris moving down my system; but it was only
on the Bank Holiday Thursday that I was put onto preventative antibiotics by my brother
and carers as it seemed to clearing up less and they were concerned about a UTI occurring.
On the Saturday, Cheeryn was concerned enough about my behaviour to ring my brother.
Once he arrived at the house, he agreed that it was worth ringing 111.
We rang around 10.30am, had a call back from the local GP collaborative around 11.30am,
and a doctor out visiting by around 12.30pm. A good turn around really. The doctor,
after consultation with the hospital microbiologist, prescribed a different antibiotic
in case I was becoming resistant to the low dose one, and the preventative one. I
took the new antibiotic mid afternoon. By evening 6pmish Yvonne, who was now on shift,
was concerned enough to ask my brother to come back down. This was possible as grandma
had already gone to bed.
Once back down my brother saw that my condition was worse, so he rang the Urology
Assessment Unit, with the hope of getting me straight on there without going through
A&E; unfortunately they said no and told my brother to ring the doctors back. Rather
than do this he rang 999 as he judged my condition would likely to deteriorate more
quickly than it would take a doctor to attend. As it was Jubilee Saturday, the demand
for Ambulances was acute, and we were told we’d have to wait at least 50 minutes
even as a priority. After about an hour or so they rang back, and the lady stayed
on the phone as my condition was variable and I was at times, non responsive to questions.
The ambulance arrived about twenty minutes later, they did all their monitoring and
agreed I needed to go into hospital. Due to my history they also rang the Urology
Assessment Unit, and the answer to them was yes bring her directly here, so I was
able to avoid A&E and get straight to treatment. All in all the whole process went
Once in hospital I had a new Nephrostomy put in, on the Sunday. This allowed my body
to try and recover and get back into balance. This took longer than it often does
and I was in the hospital for over a week, coming out on Wednesday 15th . During
my time in there my mind was very confused at times, mixing up different things I’d
heard and knew into a new reality of memories that weren’t actually true to fact,
though very real to me. That’s what an infection on top of an out of balance body
chemistry will do to you.
We’re not sure what the plan is going forward, to leave the Nephrostomy in or to
take it out, but given there is another Kidney Stone potentially loosening, I think
I’d prefer to keep it in, on balance. This has been agreed at least until October.
Apart from this hospitalisation I’ve generally been healthy, in fact I gained weight
in the first 6 months of the year to 9 Stone. I think this may have in part been
due to all those Christmas Maltesers, as I was adding them to my drinking chocolate
each night. My weight has stabilised since I switched to Maltesers flavoured drink
chocolate, which I recommend if you haven’t tried it.
It’s good to have, good carers who know me and who know the difference between when
I’m being a moaner and when I am becoming seriously ill, I consider myself lucky
that way. I was recently saddened to hear that my former carer June passed away.
Cancer again, that bastard.
I am still simplifying matters following Steve’s passing, I can’t believe it’s nearly
2 years ago already.
I recently sold the Florida property as I wasn’t ever going to go there again and
it was in needs of repairs.
It is a place that holds many fond memories, including so many stories blogged about
on this website, but it was time to let it go.
There are still lose end to tie up in the US, but it will all be sorted legally and
financially by the end of 2023. Yes things take time, but we get there, or out of
there in this case, in the end.