"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’m Anxious about being too Anxious - February 2017 to August 2017
Time for another update, on what has been a tumultuous few months since my last update
back in February and I think this time the starting point for the update has to be
my health. The reason for this is that back in April I came down with a bout of pneumonia,
which definitely was not a good thing.
Why did I come down with pneumonia? That is not something that’s easy to pinpoint
precisely but it was probably a mixture of the fluctuating temperatures of the spring,
my body being unable to regulate its temperature - a minor issue causing me to create
phlegm which then seeped down into my lungs, plus plain bad luck.
Fluctuating temperatures of spring are bad, as they mean my body has even less clue
than normal about what’s going on around it, plus its harder for me and my carers
to get the amount of clothes on me correct all the time than it is during the more
consistent temperatures of summer and winter. If we get it wrong, well my carers
get it wrong, as honestly I have little clue as to what is right anymore as my body’s
feedback to my brain on the matter just isn’t there. I’m more likely to get a chill
from cold or from overheating. I’m not blaming my carers for getting it wrong. I
can’t because, unfortunately, I am nowhere near an exact science when it comes to
care needs. It comes down to experience with me and educated guess work.
I usually don’t know there is a problem before there is one, I am therefore reliant
on my carers being constantly on top of checking everything to make sure I don’t
become over or under heated. The reality is the MS has completely knackered that
part of my body’s communication and feedback system with my brain, and this is now
something we all have to cope with.
Minor issues causing phlegm are many and varied, from a bit of food or irritant stuck
near the voice box, a slight head cold, a minor upper respiratory infection, me panicking,
my anti-saliva patch not working, plus many more that come and go.
Bad luck comes in a number of steps, firstly with getting the phlegmy mucus for some
reason, secondly through the phlegmy mucus migrating to my lungs, thirdly through
the phlegmy mucus getting infected once it is in my lungs and fourthly on the virulence
of the infection. You’ve guessed it this time I had bad luck on all four stages as
I went from having no phlegm on the Friday to having infected phlegm on the Sunday,
and a temperature of 39C on the Monday before there was any chance of us treating
and beating the infection with antibiotics at home. Instead it was off to hospital
with me, and an intravenous aggressive anti-pneumonia antibiotic treatment for me.
I probably overheated a bit in the sun in the days before I got the infection, as
it was the first real hot weather of the spring / summer and I was sun and shade
bathing outside. This may have been a contributory factor, but overall I think that
it came down to the bad luck of a very active bacterium beating my respiratory system
up. Maybe also it may come down to the fact that I am now at the stage of MS, after
23 years, where it becomes inevitable that I will occasionally get infections and
pneumonia because of the damage MS has already done.
Fortunately the proactive decision from my local doctors to send me straight up to
the Northern General Hospital for tests, x-rays and admission meant that in the range
of how bad pneumonia can be, we caught it early which meant it didn’t get as bad
as it can, nor as bad as the previous two times I had pneumonia in 2013. I was more
with it this time and did not hallucinate that people, including Marcus, were drinking
cups of tea in discos.
This time I was aware of what was going on, but me being me I was not happy with
that. No. I complained that I wanted the pneumonia to be worse, because then I wouldn’t
be aware that I was ill. That’s mad isn’t it, wanting to be more ill with pneumonia,
but that’s me and my logic - bonkers. Actually what I think it shows is that the
pneumonia, the infection, was still quite strong and affecting my brains computing
power, although my brother might disagree and just say it was me being me. I think
it was the infection, because in the first five or six days in hospital I was also
in overdrive mode in telling riddles and jokes to everyone on Brearley 1 ward; yes
in overdrive mode telling riddles and jokes. Can you believe it, given how much I
tell them normally.
In the end I was in the Northern General for just over a week, coming out on the
Wednesday of the week following the one I went in on. I was a little surprised they
let me out as quickly as they did, as I still had some phlegm in my lungs, but they
released me as the infection had cleared. Actually I was probably happy they’d released
me, as I was going home, but also angry and annoyed as I still had phlegm in my lungs
which I was very anxious would become re-infected, despite the doctor assuring me
it would dry up.
To prevent re-infection and to help get rid of the remaining phlegm in my lungs,
I was referred to the Community ‘Respiratory’ Physiotherapists. I can’t say that
my relationship with the Community Physiotherapists was the most amicable because
I got it into my head that because they were moving the phlegm from my lungs, where
it could do most damage, to the upper respiratory system, where I could hear it more,
they were actually causing me to have more phlegm and making me more ill. Mad but
true. When they came to see me I would get emotional and panic, which didn’t help
with the breathing exercises and the Physiotherapy. Despite this, I have since managed
to kick all the phlegm and mucus from my system and been signed off by both the Respiratory
Clinic and the Community Physiotherapists.
Being on the ward was a bit of an experience as the other people on it, like me,
also had other medical needs on top of their respiratory needs, including one lady
who didn’t really know 100% that she was in hospital. This lady kept planning to
leave, having supposedly just driven in that day, rather than having been in for
weeks. The nurses also had to keep an eye out so that she didn’t escape off the ward.
The world is full of all sorts of different people - it really is!
One of the effects of being in hospital with pneumonia was that I lost weight. I
went from approximately 7 stone 10 pounds before it, down to 7 stone a couple of
weeks after coming home. This had Sean my (Stomach) Peg dietician a little worried,
so we reviewed my food intake and decided that rather than trying to force my entire
calorific intake into a few hours during the day, it would be better to have me drip
fed a good proportion of it during the night. I readily and wholeheartedly agreed
to this change as I wanted to put on weight - and because I had been getting very
anxious about having any Fortisip feeds during the day - something that could now
be done away with as my daytime calories would now come solely from eaten food.
The good news is that I am now back up to 7 stone 10 pounds, so it looks as if the
only worry now is that I don’t get too heavy, but nah that won’t happen because Sean
will reduce my intake at night to make sure it doesn’t happen if I were to continue
to pile on weight at the current rate.
As you would probably guess, I regularly access a wide range of NHS services, recently
I have been getting help from The Neuro Enablement Service (NES) Physiotherapists
who have been working with the District Nurses to ensure that I have supporting cushions
that meet the needs of my body as well as complementing the work my beds air mattress
does. This means I now have a starfish cushion which supports my head positioning
much better than an ordinary pillow. This is because the starfish legs can be folded
and attached to triangular wedges with Velcro, thereby propping my head up away from
the direction it tends to lean.
I also have a banana cushion which helps tilt my body so I don’t get sores from lying
in the same position all the time.
Banana Back Pillow
Unfortunately it has also meant I have got a new improved bean bag for my legs, I
say unfortunately because I still prefer the older one. The new one has memory foam
inside and is made of a material that will rub against my legs less, and - don’t
get me wrong - both of these things are good, but unfortunately the material is less
breathable than that on the previous bean bag.
New Bean Bag
Old Bean Bag
Overall I prefer the older one, this means Lisa the physiotherapist, who helped me
get both bean bags, has now lost the goddess status she attained for procuring the
first bean bag. Sorry Lisa, you are now demoted back to Apprentice Goddess status.
Before I forget to mention it, Sean is now at God status for producing the night
I have also been working with the Occupational Therapists who have procured me a
head support for my shower chair, so I no longer practically lean out of it. They
also procured new hoist slings, which support my head much better.
They’ve also replaced my bed air mattress with a much better one, as the original
was not pumping up properly, so it wasn’t doing its job; in fact I was settling into
a depression within it.
Also through NES I have got a new push button system that does more than just replace
my current alarm buzzer, which I was looking to replace as it was getting too hard
for me to press and activate. The new system has a new bigger button which, as well
as being easier for me to press for help, also allows me to find out the time, turn
my TV on and off, turn my fan on and off as well as currently enabling me to turn
my CD / radio player off. This is because the CD player is so old it doesn’t have
the remote capacity to play the CD again once it’s been turned off. Despite this,
the new system will be a great improvement on what I have now; maybe once I have
a new cd player that can be restarted I’ll promote Nicola, who is sorting this out
for me, to goddess status, just to make Lisa jealous.
Unfortunately the great progress you can see with the above services can’t be said
to be happening with the mental health side of things - help I need because at times
my anxiety is running riot.
I have started to work with another Nicola from NES to look at whether due to MS
progressing, there is a cognitive change in the way I am thinking and remembering
- one that has led me to be more prone to being anxious and panicky. It will be interesting
to see if there has been a change or not cognitively or whether my increased anxiety
and panic is just a compulsion, just a learnt behaviour. It is in this area of combating
my compulsions, my learnt compulsive behaviour, that I am getting NO help. Nicola
has been trying to access other services for me but it’s as if my needs are too complicated
for the entry level services but I’m not manic enough for the advanced level services.
It seems I, along with a high percentage of the population, do not fit into a neat
mental health box and therefore we miss out on help, proving what is generally known,
that the mental health service is one of the, if not the, weakest area of front line
The problem with anxiety and panic is that when you are gripped by them you can’t
emotionally see how ludicrous what you are saying and doing is - something you can
see at least to a degree, when you are not in its grip. Recognising its lunacy, however,
is a very different thing from being able to deal with it when it arrives or being
able to prevent it arriving, especially when you are tired. This is where the help
from outside services, married to a want to change things, is important. The current
problem is even at the times when I want to make this change, the support is not
there to help me make it.
The problem of anxiety and the reactions it causes in me are big, as it causes emotional
repercussions for all my family and carers, which is not what I want at all, but
something that at times I can’t stop at all.
Things have got to the stage where the amount I am anxious is different, with different
people in the family and with different carers. I have got myself into the position
where I am winding myself up and am more anxious on the days my brother does care,
so much so that he has said, for my own mental health, that he will in the near future
give up doing care on a regular basis for me. After 4 years he is saying enough is
Unfortunately he hasn’t been able to step back from doing care as immediately as
he / we would want because it turned out that some of my carers didn’t care. I can’t
really go into too much detail, because as an employer I always have to consider
how any potential employment tribunal might interpret things.
What am I dancing around the houses, in my wheelchair, about? The fact that we have
for various reasons, none of them my fault, ended up with both Natasha and Lisa stopping
working for me recently, so we are now in the process of my having to yet again recruit
If I can get carers who are able to stick around and work with me in the way Vern
and Yvonne do, I’ll be laughing. If not I’ll be recruiting in 6 months again.
Talking of care, leads me onto my care funding, remember that,
Well shortly after the last update, Clinical Health Care (CHC) finally made a decision
on how little of the joint funding from them and Social Services, they should pay
They decided that my health needs only account approximately 20% of my overall needs,
Me, someone who is bed ridden and is susceptible to pneumonia, to bed sores at any
moment and who is also monumentally anxious, has only 20% of her needs related to
Can you tell if I agree with them or not?
Fortunately Social Services have really stepped up to the plate and though my care
funding budget has dropped, it could have been much, much worse. Social Services
have filled the most of the funding gap that the CHC had left, a gap of around £500
a week. Social services have done this by allowing me one of their biggest budgets
for any one person. Thank you Sheffield Social Services; with your funding and with
my family putting in some extra ‘top up’ money, I’ve been able to keep my current
number of care hours going, a level at which I cope.
So how about that re-assessment from CHC, that was due last July, I hear you cry,
well, what about it? Naturally given that the CHC is tasked with doing it, it hasn’t
happened yet, 12 months on and not a squeak of communication about it from that
They don’t even bother to respond to emailed queries you send them. Actually
too kind a word to describe them, as they are
We’ve decided that instead of chasing their incompetent asses, we’re better off getting
on with life, as chasing them will make no difference, as chasing imbeciles is not
fair on them, plus the fact they might cut my funding further if I do see them. What,
I hear you cry, well why not, they have already proved themselves
Talking of incompetence, no let’s not, let’s talk about something positive and good,
let’s talk about Marcus. Wow I can’t believe how tall he is, how old he is, how mine
My boy just got a report card from his last year at junior school, on which the head
teacher wrote he was one in a million, wow.
Not only that he has solved the 2x2x2, the 3x3x3 and the 4x4x4 Rubik cubes
In the last 6 months Marcus has also taken up the Trombone and he regularly gives
me Trombone practice recitals and I must honestly say he’s progressing very well.
He’ll be continuing his lessons when he goes onto Silverdale Secondary School in
And what of my book?, well due to lack of carers caring, it’s been on hold since
my last update, but at least I’ve still managed to do more poems and get them up
on this site during the last 6 months. If you haven’t read them already, they’re
available through these links.
In the Mainly Marcus Poem there is a line about Steve where I say “And to Marcus
he can be a bitch”. Marcus has told me I should change it to,
“And to Marcus he can be a b****”. (Censored by Marcus)
Maybe I will, do you think I should?
Talking of Steve and Marcus, they have just got back from another camping holiday
Since then my TV had a major malfunction, which I’m really pleased about as it means
that I’ve got a brand new flat screen TV with a much better quality screen and picture.
My eye sight is not as bad as I thought it was, the new TV I love it.
I’m now nearing the end of this update but there’s still time for a joke I made up
Q: Why can’t Santa be fired?
A: Because he already has the sack and is still in his job.