"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.
I haven’t mentioned my physical health much in this update, that’s because it’s mainly
been Ok, with your little daily or weekly peaks and troughs.
I have agreed with Dr Thumbikat that I am going to have the tendons behind my knees
cut. I made this decision even though it will mean 3 weeks in hospital and it is
difficult to reverse because my leg muscles are starting to tighten again and will
just continue to do so if I don’t.
Weight-wise I’m heavier than I have been for years thanks to my Fortisip feeds, so
much so that I’m a little worried about getting overweight. Family and dieticians
says there’s no worry on that front yet but, for me, to be even thinking that way
is astounding, as I’ve always been underweight, if anything, due to struggling to
get enough nutrition on board at times.
In summary, overall I’m Ok at the moment and looking back over my life really see
how important Marcus has become to me. He’s my driving force for living now. I also
see how important Steve was as such a force in the past. Steve enabled me to access
sunshine and a positive attitude through his love and the Florida Keys, which together
with swimming (exercise), and to a lesser extent, diet gave me so many more opportunities
and experiences than I would otherwise have had. Even with modern medicine I believe
that without Steve, Sunshine, Swimming, a positive attitude and Marcus, I would not
be here. Saying this is not negative. It’s positive, as I am here and persevering,
and still attempting to make the most of my life and the opportunities it presents.
That’s all until the next update
My evolving life - December 2013 to May 2014.
It’s now the beginning of May 2014, in the last four months things have changed,
but not hugely, so in many ways they ways stayed the same. I suppose what I am saying
is that my life has continued to evolve over the months since December, with changes
yes, but without any major hiccups.
Just before Christmas Steve and Marcus came back from Florida having enjoyed their
time there and on their cruise prior to that. This cruise included another visit
to Hell for them, Hell on Grand Cayman, that is.
Once Christmas was over, they both settled back into the routine of life, going to
school, playing computer games, mending American classic cars, running our business
and, of course, living with me. So it got me back into my routines, including continuing
to pick Marcus up from school and going to Balti King on Curry Night.
I don’t think I previously appreciated how important their part in my routines is
to me, how much they themselves help me, by being there and giving me the structure
I need, not just to live within but to live well within.
I knew structure and routines were important. That’s been obvious for ages. It’s
what has held my life together for a long time. My meeting before Christmas with
the hypnotherapist was meant to be adding another plank to this structure but unfortunately
this did not work out, more due to my and his personalities not being compatible
than the hypnotherapy being wrong per se. We didn’t really get far enough along with
it to say that. I’m not giving up on getting this extra plank in my routines and
structures, which would be gained by conquering my anxieties. I’m currently working
with my local psychologist to try and reach the same aims, I’m still a ‘work in progress’
we’ll see how it goes.
Getting back to the importance of Steve and Marcus in my structures, I guess I should
have realised their importance, Marcus’s especially, as he is my son. I should have
known that, like any mother, I need him to be there with me in my life. He gives
me more drive, purpose and laughter. With Steve, I think, this reality was less obvious,
as he can be more than a little annoying at times when he’s here. I think with him
it comes down to the fact I know his and my expectations when he is here, all of
which is thrown out when he goes on his holidays; so even though we both benefit
from the breaks, I do wobble when adjusting to his leaving. I’m just over a minor
wobble, as he’s off in Thailand again at the moment.
I’m glad he’s gone to Thailand as it gives him and Wan time to see each other properly.
I’m happy that they can have a loving relationship both spiritually and physically.
I know it sounds weird for a wife to say that about her husband and his girlfriend
but it’s true for me.
Steve and I wrote articles for New Pathways on the evolution of our physical relationship.
Unfortunately they were never published. Why? Well, in my opinion, it’s because the
MS-UK’s ethos now is different to the ethos it had when it was founded as the MSRC.
As a charity it is now more interested in its national profile - hence the name change
and a change in what it allows to be reported in New Pathways. New Pathways now seems
to me to be more repetitive science reporting and positive news stories, more prudish
too, with less challenging articles that may help some people because they may /
will offend others’ sensibilities. It’s not as bad as the MS Society yet, but sadly
moving that way, prioritising corporate image over people. Many of you may disagree
with this opinion and I hope I’m wrong, but I’ve had to post both articles here on
my site as the bigwigs at MS-UK are too weak to publish them.
It was through Pat at the café that I got my newest PA, Emma. My brother had been
my full time PA for 7 days a week for 6 months and by January it was getting a bit
much for him - well, for both of us, if the truth be told. I took a chance and opened
my mouth and asked Pat if she knew anyone who might be able to be my PA. She did
- her daughter-in-law Emma who, as an added bonus, also had experience working in
care. Emma has now been for working for me a couple of days a week since January.
It’s working very well so far.
Emma is the first female carer I’ve had and it’s great. Ok, we have to use the hoist
as she cannot physically lift me out of bed but I can adapt to that and its more
than compensated by the fact I can talk to her woman to woman, men are Ok to talk
to, but they can’t totally understand important things that Emma, as a woman, can.
There is also the bonus of her also liking similar TV programmes and going shopping
for those bargains at the real bargain shops.