I sometimes wonder if people who read my updates, really understand and appreciate
how limited I am in what I am able to do myself nowadays, how much I struggle day
to day in life to keep living for myself and for Marcus.
I know that if people don’t fully understand it, it’s partly my own fault for the
general positive persona I deliberately put out into the world to update my lovely
friends about how life is treating me. I really don’t want to give you the nitty
gritty of my life all the time, and I really think you don’t want it either. There
is however a time and a place for reality and my brother has been encouraging me
to do this type of update for some time, but to be honest I have struggled with getting
a lot of the yuck of life recorded onto a dicta-phone so this update is a result
of my and his thoughts, though nothing I REALLY don’t want is on this page.
Reality is, in case you didn’t realise it already, that all the updates are typed
up and put on the web by my brother after the updates have been printed and read
to me for my approval. I may add in things that have been forgotten, but generally
the updates are initiated by my brother, though historically, over ten years ago,
I did it all myself and after that recorded my thoughts onto tape for my brother
to interpret and communicate onto the web.
This is the reality, because I can now hardly do anything physically for myself,
that is the stark reality of my life now. Some people might feel sorry for me, being
in this situation, and sometimes I do feel sorry for myself, I hate it, or to be
more accurate I dislike my body and what it has become. That is not the same as disliking
myself, it’s just that sometimes my god damn body is such a ……, well you’ll see more
on that as the update progresses.
My Reality
My Reality
- I’m physically severely disabled.
Those statements are stark but they don’t really tell you a lot. The statement that
I am physically severely disabled covers up so much, it doesn’t even mention the
huge mental impact that the disabled body puts on my life.
I think it’s easiest to start by talking about the physical side of things in my
life, as its practical and stark, messy sometimes; but not as messy as the emotions
and mental struggles and screams can be.
My Reality
The reality is that MS has robbed me of the ability to control any of my body below
my neck in a real or reliable way.
Yes, it is that stark, I have the near equivalent of a broken neck in terms of what
I am now prevented from doing. Fortunately I can move my neck, left more easily than
right, but it’s something at least.
The key to the above statement is that I can’t do anything with my body below my
neck in a reliable way, I can’t get it to do what I want. That doesn’t mean it won’t
do what it wants, in a way that I don’t want it to. My arm muscles will spasm and
jerk moving things placed on me within reach of my mouth, out of position from where
I need them, which is so ……..
Think about it, having an out of control body, what that means. It means.
- Not being able to feed oneself let alone prepare ones meals.
- For safety when swallowing not being able to eat foods that are not soft, fortunately
I’m not restricted to baby food, but it is all soft mashed food in consistency.
- Not being able to read a book.
- Not being able to move my arms to touch my son when I want to, as a mother will want,
even if the son doesn’t necessarily want it that second.
- Being reliant on another to do my physiotherapy exercises for me.
- Not being able to control my bowls or clean myself up afterwards.
- Not being able to get out of bed whenever I want.
- Not being able to walk.
- Not being able to guide a wheelchair or mobility scooter myself.
- Not being able to get anything I want when I want it. TV channels have to be programmed
and or changed for me.
- Not being able to go out without someone else,
- Being reliant on others for more or less everything.
I can get Alexa to play music etc by asking verbally, and ring my brother and others
through Alexa if needed, which is great, but if my voice is weak compared to the
volume of the TV and Alexa together, then I can struggle to even have that under
my control. In the day I am left to having to ask my carers to do things again and
again, or if it’s night I have no control, as there is nobody there. I am left to
myself and coping with the mental impact of my physical limitations.
My Reality
If I am being honest this is the bigger battle than the physical side of things,
you can cope with the practical physical loss, but the impact it brings on top of
ones already complicated mental thoughts, that is the big whammy of an impact.
Starting at midnight, or a few hours before, my mental battle starts with getting
to sleep. I realise that sleep should generally happen as you drift off, but for
me it doesn’t. This is in part due to my not using enough energy in the day, through
being bed bound, or even from dozing off in bed but it is also down to me worrying
about falling asleep. I make it a battle to get to sleep, rather than allowing it
to happen. I’m often too wound up or tired, or both, too mentally undisciplined to
relax and let sleep arrive.
The impact is that some nights I keep myself wound up with anxiety and don’t sleep
as much as I should which impacts onto how I feel and behave the next day. Whether
I have a good day, bad day or an ugly day. On these nights I generally try not to
ring my brother in the middle of the night and disturb his sleep, and I’ve generally
got good at disciplining myself not to do this, but very occasionally I have to ring
him, it’s better than disturbing Marcus’s sleep.
In terms of what a good day, bad day and ugly day is, well, I can agree with my brother
and carers about when I have a good day, it’s when I’ve had a good nights sleep and
am chatty with them and don’t constantly go on about my hobby horses, all the time.
More on these in a bit. It’s a day on which we can have a good chat, we can enjoy
going out, when we can have a good positive or at least neutral time together.
When it comes to bad days and ugly days, well in my mind I really only have good
days and ugly days but this is because what I call an ugly day is what my brother
and the carers see as a bad day. It is only a bad day to them as it is a day on which
I can recognise I am not doing well and my behaviour is not as good as it could be,
it is a day on which I am battling with myself to do better. This kind of day is
ugly for me but only bad for them.
For my carers, an ugly day is a day on which I can’t, or seemingly won’t, regulate
my behaviour at all and keep going on and on about things, repeating my demands requests
and questions seemingly ad infinitum. It is a day on which I can’t, won’t, take anything
onboard and can’t, won’t ameliorate my behaviours in any way. These days can be very
testing. These days are usually the result of lack of sleep doubled with anxiety,
they are not usually a sign of infection unless extra confusion is thrown into the
mix.
My Reality
- Anxiety
- Trying to control everything
My reality is a constant battle against anxiety and to stay in control.
To stay in control of what?
To stay in control of as much as possible.
Staying in control is part of my innate personality, I am a bit of a control freak,
hence wanting to control as much as possible. I think what gets to people who know
me, my brother especially, is that I seem to want to control things that I could
or should delegate more, whilst not wanting to try and control things about myself,
which I maybe could, should be able to control, ameliorate, fix. This is where lovely
mental blocks come in, where I have the personality traits now of an addict, who
can’t, won’t, is unable to adapt their behaviours, however disruptive and negative
they are.
An addict can’t adapt due to habit but also in my case due to the anxiety change
causes. They, I have a blind spot that prevents change, I know I do, but that doesn’t
mean I can change my behaviours right now. Why? Because I don’t REALLY want to, until
I do you won’t stop my habits, addictions, behaviours, because I don’t want to stop
them.
What are these behaviours, controls, anxieties that I cope with every day but don’t
want to look beyond and deal with?
- Knowing the time
- Knowing what is happening next
- Knowing how much water I have drunk
- Knowing how much water I have left
- Knowing if the TV programme has finished.
- Burping
These are the main headlines, there are more, but most pale in comparison to them.
Knowing the time allows me to know, what is next, what to expect next, what to ask
for next. It enables me to feel in control even if I can’t do what is next myself.
It is also what can make me more difficult to care for as I can be asking for something
the second I think it should be happening and not giving my carers time to do it.
Usually they are about to do it, so my asking is irritating, but to me its almost
an uncontrollable thing I have to do, to enable me to have control, or a least the
perception of control.
If I get the time wrong, an hour out, and then forget the time and ask again early,
that can be equally if not more irritating, as it seems as if I’m being deliberately
obtuse, but I’m not, I’m just trying to stay in control and have things as I want
them. For example it maybe that my drugs are due, my food is due, my TV programmes
are due to have switched channel. I can be on at my carers to do it even though they
are just about to do it, or I maybe jumping the gun, being impatient, and the TV
will in reality switch over in another minute; but I have to ask now, to be in control.
I really can be trying, I know, but I’m just trying to be in control.
Another thing I’m trying to stop is asking for things as soon as my carers have left
my side; instead I am trying to ask them before they go to sit down or to do another
job, as this removes another potential irritation, especially if I am constantly
doing it.
Those are issues on which I stress my carers more than I do myself, the biggy that
does my own head in more, and probably subsequently the carers also is my water consumption
fixation. Before going onto its impact now, I probably need to go into its background.
I have for 10 years or more had a kind of oral fixation, a need to have the sensation
of something in my mouth be it water or food, It is something that enabled me over
the years to feel in control, even if the reality was different. Initially I drank
a lot of water through a hydrant tube, though this was removed when I started chewing
the plastic mouth piece ends. After this it was water in bottles, with straws, lain
on my body; firstly tap water but later tonic water.
It was probably a mistake to switch from tap to tonic water but we did so because
I was worrying about not burping enough and I thought increased burping would decrease
my feeling sick. The reality is that the tonic water just fed my need to want to
burp all the time, another oral fixation.
I eventually moved on from tonic water to eating lots of grapes, as my oral fixation,
but these rotted my teeth, so I moved onto water melon, better but still not good
for the teeth as with both I was hoarding pieces in my cheeks. Eventually both were
banished and it was back to water.
Years of over drinking water led to my hospitalisation in August /September 2019
with very low sodium levels, as I’d washed it out of me. Ever since I have been on
a water restriction. It is of 1.8 litres of fluid a day, enough to keep my supra-pubic
catheter running and keep my sodium levels ok.
Since then I have been able to drink only a certain amount of water daily orally,
its around 600ml. This amount of water has to be consumed in a managed way between
approximately 7.30am and 9pm. As you can see, it’s not that much water for so long
a period and huge window for me to get more and more anxious within, wondering about
how much I have drunk already, how much I have left. It doesn’t help that I tend
to speed up my drinking rate later in the day as I get more tired; it’s another thing
to be factored in.
Even on a good day I will be constantly checking water consumption all day, probably
under drinking earlier in the day, but if I am in an ok mood, its usually manageable
for me and the carers. I ask, let them take the water away at certain times and get
it back later. I trust my carers always, and I have enough self-discipline on these
days to recognise this fact.
On other days it can be an obsession, an uncontrolled obsession, something I will
go on about constantly and do the carers head in, about, and not just in a mild way.
This onsession overrides my knowledge that I totally trust my carers as on such a
day, my time fixation, my water fixation and my burping fixation all increase and
override everything else. I manipulate, play with half truths and lies to stay in
control. The reality is I often half recognise or more what I’m doing, but do it
anyway. It usually backfires on me as the carers pick up on the manipulation. Playing
people against each other isn’t in my interest but it happens, I do it, even though
I know I shouldn’t.
Wanting more and more control, acting out, is a sign of less control in reality.
My days are a battle, my nights are a battle to be in control, but not over controlling.
To not be anxious. I often fail, my habits and addictions often win out but I do
try and be myself as much as possible and not the sum of the habits and addictions.
I don’t know if this update has given a better insight into my difficult reality,
or if it is just a kind of waffle around my real life. The reality is it’s not easy
but I’m very lucky to be here after all I’ve been through. I’m still here living
for Marcus, living for myself, living for my mum, my family, my friends and carers.
I am not planning on going anywhere else anytime soon, my inner life drive pushes
me on through each day to continue to enjoy life’s experiences to the best of my
ability.
Going forward I must convert MS into Mental Strength, every day. I must be stronger
than now to make things easier for me and for others. I may well fail, but I must
try hard, harder to succeed.
