Ever since my MS diagnosis in 1995 I have had to struggle
with periods of dependence. My very first hospital stay when I received my
diagnosis was for a fortnight and I arrived looking like I’d had a mild stroke.
My notes read ‘Hayley is very keen on keeping her independence and has high
standards of hygiene and appearance which she should be encouraged to
continue’. It was strange to see someone assess and describe me in that way. I
had always assumed everyone was concerned about their personal appearance and
independence. I started to re-evaluate what I thought about me, but also about
how I saw other people.
I have always submitted to different degrees of dependency
when I needed to. I hate taking help in the bath or the shower but sometimes my
illness has made it necessary. I’m not very good at being naked with other
people in that context, probably because I am vulnerable and haven’t made the
choice personally. Usually others have made the choice for me because of risk
or I have been worn down enough by pain or stiffness to have to accept. It does
not come easily and I would rather take a small risk here and there. This need
for independence has led to falls: I fell in the bathroom and hit my head on a
radiator, I fell down a flight of stairs and broke my collar bone and I fell
when walking the dogs and dislocated my ankle.
The one thing that is very important to me is my driving. I
am lucky to be using the Motability scheme so have a lovely car to zip around
in. I grew up so far into the country that the only option was to drive or stay
home. There was no public transport and it was too far to walk anywhere. It
took me 3 tests to pass my test and I was never the most confident of drivers
until I moved to Milton Keynes. This was a huge test of my driving ability
because I was moving to the town of roundabouts from a market town that didn’t
even have one when I passed my driving test. In order to get to university I
had to take the M1 every morning and drivers were so aggressive. I soon grew in
confidence and started to love driving. When I moved back to my home town we
had a Kangoo which is a specially adapted van that my husband could wheel
straight into. We explored all over, from Colchester to Ambleside to North
Wales as we tried to cram a lot into his last years of life.
I knew I could never be without a car when a few years and
one husband later we bought a huge Nissan truck as our joint vehicle. We were
living in the country, at the top of a hill that would need four wheel drives
through the winter. I gamely drove the truck for weeks having traded in my
Toyota Yaris for it and being determined to master it. It was tough to park and
get around the more medieval parts of town, but worse than that there were days
when my husband used it and I was at home with no way of getting out and about.
This may seem normal to some people who had this arrangement all the time, but
for me it was hugely difficult. I had never been without a car sitting outside
the house waiting to be used. My husband said I was spoiled and he was probably
right, but I became miserable and depressed because I felt trapped. I don’t
know whether it was a case of what I used to or a more psychological reaction
to offset the trapped feeling my illness gave me. Eventually we caved in and I
had a little second hand VW Beetle to potter in and now I have a new one on
Motability because a little bit of money set aside helped I afford a down
payment for the car I really wanted.
Lately I have been struggling with my driving. I can pop
about locally quite easily on good days, but I have been noticing small
changes. No matter how much I change my driving position it seems to impact on
my right leg and lower back, I cannot drive at all when fatigued and certain
medications make driving impossible. I have been building up to driving longer
distances again and seem to have mastered the 60 mile round trip for my
counselling supervision once a month. My other work is only 20 minutes away
along with college so I am not being stretched as much as I might be. Then
going on holiday came up.
It had been planned that we would have a family holiday in
August in North Wales where we always went as children. We had a very
successful holiday last November and decided we should try it again. It was
assumed we would all arrive in separate cars so we could go our own way and do
what we liked. Yet, as time drew nearer I had not had chance or a long enough
period of good health to practice driving. A couple of weeks before I had
driven to supervision as normal but then came home and slept for three hours in
the afternoon. It seemed excessive for such a short drive but simply could not
keep my eyes open. I was fighting my eyelids while trying to type up notes and
kept experiencing double vision. One of my knees was very swollen and had been
aggravated by the drive and I had pain from my lower back down to my right knee
and through my heel. I chatted with a friend who was coming with us, a fellow
MS patient, and although we had agreed to share the driving we were both
worried about sustaining our concentration on the long 4 hour journey. We felt
that if we drove there we would not be fit for a couple of days to do anything.
My brother had spaces come up in his car so we agreed to pay for petrol if he
drove.
For the last fortnight we talked ourselves into the idea
because the cottage was at the edge of a seaside town so we could walk
everywhere and only go further afield if invited by the others. We were taking
a bag of sewing, sketchbooks and colouring books to keep us occupied as well as
a fully charged and bolstered Kindle each. However, the journey still exhausted
both of us being closer to six hours and a very warm day. We arrived feeling
dehydrated and floppy. The holiday was good but I really felt the restriction
of not having my own car. On previous holidays my friend and I would zip around
little seaside villages and pubs or restaurants for tea. We didn’t always go
out every day but at least could make our own choices. I was chafing badly at
being dependent on someone else for a whole week. I realised how much I liked
zipping around under my own steam. I decided when I wanted to leave the house;
I decided where to go and when it was time to go home. Now we were both
dependent on others to negotiate who was leaving and who would look after the
dogs, or we would be dropped off somewhere for a few hours until we could be
picked up. I love the holidays I have with my friends where we can go to the
beach with the dog and then decide whether to have lunch somewhere or vegetate
back at the cottage with a great book. Having very little say brought home to
me how much I value my independence and what a huge loss it would be to me to
lose my ability to drive.
This has been a good experience because it made me think
about my priorities. I want to participate in the world and not be hidden away
all the time so I have to prioritise and make this possible into the future. I
have to think about what I need to make this happen. It made me realise I need
to focus my money on experiences rather than things so that’s a change I need
to make in my spending habits. When I am asked by the rehab team what I need
from them, I have to ask for what I need to access my favourite things like the
theatre, galleries, and concerts. I need to use my wheelchair more and book
assistance every time I go somewhere further afield whereas now I might just go
for it and hope I cope. I need to accept that I am at that stage of my illness
where my life will change again but that does not always have to be bad. I need
to employ the state of mind that my late husband Jez had – instead of looking
at a wheelchair as giving in he saw it as a tool to make him more independent.
I need to stop thinking that I’m giving in and accept that I am carrying on –
whatever it takes to get there
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