Question: You're suffering
from a long-term illness and working out the best treatment plan. What do you
do when your Head-voice and your Heart-voice are at war in your head? When one is saying... 'Do
it, do it!' and the other is saying “You stupid fuckwit of a woman - don't even
think about it!"
Answer: Get yourself a therapist
This one is hard to write. I've been putting it off for a while.
But as I started this blog as a sort of therapy, I always promised myself that
I'd write honestly about the ACTUAL therapy I've had this year. So here
goes....
When I became unwell last year, the hardest part of the initial
journey was that I didn't know what was wrong with me. Lying in an MRI scanner
and listening to the mechanical beeps for an hour, I was mentally writing my
will and thinking about leaving my 5 year old boy without a mum. But once
diagnosed (with a Vestibular Dysfuction*) I was able to concentrate on getting
physically better. Knowledge is power as they say. Once I knew what I was dealing
with, I could fight it.
*Vestibular Dysfuction - when the brain can't properly orientate
and you feel constantly dizzy, sea-sick and can only move about slowly, looking
as if you are seriously drunk - without actually drinking. It's shit!
For the next six months I had a goal, a plan and a belief that I
could return to 'normal'. I made steady progress through Neuro Physio
(re-training the brain to balance) and I could cope. I was absolutely
determined to become me again, and be
able to do everything I previously could.
Having that vision and that belief was, I'm sure, a contributor to
me making such great progress.
So when I had a relapse in February and started getting worse
again, I hit a new low - possibly worse than my first MRI, because I was back to
having no knowledge. Now I was wondering if this was going to be an on-going
cycle – did I have to accept that I may never get better? It hit me really
hard. My Neuro Physio told me that I needed to come to terms with the fact that
this could be it. Even with all the brain training, I may only ever be able to
do 80% of what I could before. The idea of living with this illness forever was
just heart breaking. The idea of not being able to do everything that I could
normally do, and everything I had planned for my life, was overwhelming.
One thought kept coming back to me - Disney Land. It's been my
dream for most of my life, and I've promised myself that I will go as soon as
my boy is tall enough to go on all the big rides.
I couldn't accept it. Mentally, I just couldn't cope. Micky Mouse
became a symbol of everything I was losing. The me I was losing. The me my
family was losing and the limits that would put on them too. I lost my will to
fight, and just became sad and angry. I didn't know whether I needed to keep
fighting to get better, or to accept defeat and make new plans - ones that
wouldn't ever involve Micky fucking Mouse. (I also started swearing a lot more, and taking my anger out on
fictional mice!)
I realised that I needed help. My Neuro Physiotherapist was a
wonderful woman helping me retrain my brain and make physical brain progress,
but I needed help with the emotional side of my brain too. I needed to sort out
how to THINK - how to DECIDE - how to KEEP GOING mentally.
So a made an appointment with a Counselling therapist, and it's
possibly the best thing I ever did. To be honest, for the first 3 sessions, I
really wasn't sure! I felt that she didn’t understand the problem. But to be
fair to her, it was ME that didn’t understand my own emotions. I wasn't giving
her the right details. I was still too angry at my situation. I was linking my
physical condition and my mental state too closely together, I couldn't
separate them - when I felt physically poorly I was sad, and when I felt physically
OK I felt... well, OK, but overwhelmingly frustrated by my limitations.
The regular fight in my head was:
Physical Brain: I'm so tired. The more your push me, the more I
need to rest. You can't do everything you used to - accept it; do less; enjoy
the quieter life. Let's sit on the sofa and have a brew.
Emotional Brain: But that's not who I AM! I'm missing out on LIFE.
I don't enjoy quiet, I NEED the variety, I need the party, I need to be who I
WAS.
My Emotional Brain thinks in shouty capitals a lot!
The break-through happened in my therapy session after I did the worse
thing I could have possibly done as a person with balance issues - I went on a
roller coaster. It was definitely an act of rebellion. I knew it was an
absolutely stupid risk that could totally fuck up all the neuro-physio progress
that I'd made. But I also felt that I was leading a restricted life, and it was
breaking my heart. It was head versus heart, or my Physical Brain versus my
Emotional Brain, and Emotional Brain was now calling the shots. It wanted to
know what would happen, like a child pushing boundaries... I needed to know if
the Disney dream was ever going to be achievable.
I picked a day when all the circumstances were right - I was
feeling reasonably good, I had people with me who could look after me if I
crashed into a spinning nausea, I had the next 3 days off work if I needed to
recuperate. I was still scared shitless though! Physical and Emotional brains
were battling in my head as I queued up:
EB: It's the Dora the Explorer roller coaster, it's fine for a 6
year old - how bad can it be?
PB: You absolutely crazy fuckwit of a woman - there's a sign that
says 'Not suitable for people with motion sickness' - that's an understatement
for what you have!
But because I'm either feistily determined or stupidly stubborn
(you can decide which), I did it. And it wasn't at all as bad as I expected.
So... I went on three more, each progressively bigger and faster.
I'd love to say that was the moment when I realised I was better,
but oh no, I just got the consequences later. Somehow the adrenaline must have
kept me going, but later that day I was crying, and the next day I paid the
price properly. I felt awful. I could hardly move off the sofa. I thought I'd
broken myself and I had a new reason to be angry - at myself - for being a
crazy fuckwit of a woman (PB: Well, I told you, didn't I?!) However, by the next
day I felt a lot better, and the day after that, better again (EB: Ha. I knew
it -it was worth the risk)
And this is where my therapist, Jeanette, comes in. She helped me
realise that instead of being a straight battle between Physical and Emotional
thoughts, I'd rather cleverly brought in a third voice in my head -
'Intellectual Brain'. IB was the one who made sure I took the risk at the right
time, considered the consequences, and made sure I was ready. It sounds so
simple, but she was right. She helped me to think about other times I'd used
this third voice to make decisions, and that this was the voice I had learned
to trust. I needed to listen to them all, but IB was like the mediator.
This was my turning point. I started to feel more positive about
making decisions, taking risks, testing my physical limits in a sensible way, and keep my emotional side happy that I was making progress.
When Jeanette and I booked our last session I said that I
wanted to do some drawings as a way of remembering what I'd learned, and to help
me easily recall the concepts of balancing my physical, emotional and
intellectual voices.
This is what I drew...
1. I need to stop looking back at who I was, and understand who I
am now, and what I'm capable off.
Being able to do 80% of what I could before may be true, but are there new
things I can do too? If I'd lost a leg, I wouldn't try to grow it back!
I'd work out how to live the best life I could with one leg.
2. My roller coaster rebellion taught me how to push my physical
limits to allow me to have fun, but in a safe way.
3. I had felt restricted by my illness, like I had tethers holding
me back. Jeanette helped me to see those more as a harness, which helped to
keep me safe. And when I was seeking to push the boundaries I was using
intellect to 'measure' how far I could go.
4. I finally accepted that resting is not lazy - it's essential. I
can still do almost anything I want to as long as I accept that my body will
pay the consequences, and I make time before and after to give it chance to do
that.
Will I get to Disney Land one day? Yes, I absolutely will. Maybe
not for a while yet, but I am still a determined / stubborn bitch, and I will not give up that dream. I know
that it's possible, as long as I plan ahead, take sensible risks and make time for the
consequences.
Mickey, I'm coming to get you!
(Thank you Jeanette)
