I went to the Paralympics in 2012, at the
Olympic Stadium, I was offered an Electric chair as the park was large. I
always thought people would look at me funny using an Electric Chair. I was
pleasantly surprised at how people treated me, always smiling and talking to
me, I had an amazing time at these games. All the Volunteers made it a really
special time, giving everybody high fives, it would be low fives these days, as
I am unable to lift my arms at the moment.
When I arrived home from the Paralympics my leg Muscles were all tight when
lifting my legs, so I decided to start using a wheelchair now, I have had a few
falls lately. I was still concerned what my friends would think but I need not
worry, as I inspired them even more, great friends at my Gym.
The Paralympics really inspired me, it got me thinking that I wanted to achieve
something, I bought a manual wheelchair I found it difficult to move the chair
at first as there is a small hill outside my property, I use to self propel my
self up the hill most days a couple of times before going to the gym. I used a
hand bike, and concentrated on doing arm weights whilst at the Gym.
Near the end of 2012 I was having difficulty to lift my right foot off the
pedal, I thought it best that I give up driving. I knew I would find this hard
as some of my independence was being taken away from me but I did not want to
hit something or someone.I did a search for Disability sports in Kent, on the
Internet, discovered a man who Coaches disabled people on Saturdays. I trained
in my chair at first, then started to use a racing chair, I did not have much
strength when self propelling my chair. I’ll give you an example; there were
two people in chairs, he would go from the start line, I would go from 100
meters start line, he would still beat me to the finish line. I needed to do a
lot off work to improve, just the way I like it, I did start to see some
improvements.
I wanted to do other sports, to see if I like them, so I joined the UK charity
called Sport ability
www.sportability.org.uk they provide sport for the
disabled person. I really enjoyed the sports I took part in, they provide good
support whilst there, like aid you to get into sports equipment etc. I did various
sports like, Canoeing, Quad biking, Water Skiing, Gliding, Sailing. I really
enjoyed the Water Skiing, I could never believe I would be able to do this when
I use my wheelchair all the time. I paid to do Land yachting near Dungeness,
where you are close to the ground in a buggy, with sails .
At
the beginning of 2014 I had to use a Conveen when I was going out, it was
taking me too long to transfer from the car seat to the Wheelchair etc. There
had been a few times that I had not got to the toilet in time, so I use them
all the time now as my bladder is getting weak.
I went to a Paralympics trials day in Guilford soon after Paralympics where I
tried a sit Ski. I felt comfortable in this sit ski, so I Joined Disabled Ski uk
www.disabilitysnowsport.org.uk
I went to my nearest dry slope that had a Sitski, I went every 2 weeks. I
enjoyed myself Skiing so much that I booked up an activity week with Disability
Snow Sports in Sestriere Italy, where some of the winter Paralympics were held
in 2005.
My Parents were concerned about me going alone, I was reassured by my
Disability Snow Sports coach that I would get my own helper when on this
activity week so we were all reassured. I was told by a Nurse that I may have a possible
Blood Clot as my calf was all swollen. It was confirmed that I had a Blood Clot
in my right leg, I was prescribed Warfarin. I did not have much energy whilst I
took the Warfarin, but non the less I was determined to go on my skiing holiday
in 2 weeks time.
I flew out to Italy 2 weeks later where I met up with my helper and the rest of
DSUK crowd at Gatwick. I really enjoyed myself Skiing, met some really nice
people, the helpers were great, you get great support whilst on these Activity
weeks. I went on the baby slopes at first, where I went skiing with the Tevers,
only fell over a couple of times, this was going to be fun, only the first day.
The DSUK instructor took me for some fun higher up the Mountain, there were
some fantastic views from the top of the mountain.
A few weeks after coming home from my skiing holiday, I gave up the idea of
getting better at Wheelchair racing. It may have been causing the blood clot in
my leg due to being cramped up in an awkward position. I needed to start going
to the Gym every day again, get my circulation moving again, get my muscles
strength back the way it was before my bad idea of getting better at Wheelchair
racing.
In June 2015 it was taking me over 2 hours to
shower myself and get ready. My parents spoke to my OT (Occupation Therapist)
about getting Cares to help, I did not want to at first, as I believed if you
do not use it, you will lose it. I was finding it difficult to transfer between
my chairs and bed, slipped a few times and ended up on the floor, I had to
press my life line to get help. After this I thought it best if I did get the
Carers after all, parents normally right, I had to get some help in the end.
In 2016 I became very weak, I was finding it difficult to view the TV, when my
Carers arrived I was able to hear them but I was not able to respond, best way
to describe myself...I was all delirious. My Carers phoned for an Ambulance,
the medics did the normal tests and they decided to take me to Hospital where I
stayed for 7 days, I was diagnosed with a chest infection.
The Speech and language Specialist at the Hospital wanted me to have thickened
fluids and a Soft Diet for my food, thickener is not the best taste, so I added
Ribena to make it bearable.When I got home from Hospital I was very weak, I
was finding it very difficult to propel my wheelchair. I could not stop myself
leaning forward, some times my head would end up in-between my knees . My Core
strength was very poor after this infection, my arm strength was no better, I
knew I was going to find it difficult to regain my strength.
My speech was badly affected as well, I had speech Therapy, which helped at
first, then it got worse again.
My (MS) Nurse referred me to the Communication Assistant Technology (CAT)team,
they gave me a device called a Gridpad and Head mouse. I control the mouse
cursor from a dot on my forehead, this device is running software called Grid3.
I am able to communicate by typing messages, I can read books using the Kindle,
watch TV and control various functions around my house. This has been brilliant
for me, I would not be able to write this Blog without it.
I was struggling to use the Gym, I was also finding it very difficult to access
the swimming pool and get dressed. I was not able to use much of the Gym
equipment, so with a heavy heart, I had to give the Gym up.
I loved going to the Gym, I was a different person since I joined and so much
more confident. I gained loads of amazing good friends there, I know I am their
inspiration, but they also inspire me.
As I was really struggling to propel my
Wheelchair, my MS nurse got me an appointment with the Wheelchair Service, to
apply for an Electric chair. I did not want to use an electric chair but I had
no choice, I was finding it so difficult to move the chair.
I had to use my Disability Living Allowance (DLA), to apply for a Wheelchair
Accessible Vehicle as I was struggling to transfer, I had been using a Taxi for
3 years now. I receive Direct Payments for my Social care, which I use for the
carer to assist me at the Gym and go to different places.
I had been getting a lot of fluid in my mouth since my Chest infection earlier
that year, I was prescribed some Hyoscine patches to help dry up the fluid in
my mouth. That evening I was finding it difficult to view my TV and my
communication device, I was very weak. When my Carers came to put me to bed, I
could here them, but I was unable to respond. My mum came down, she removed the
patch as she was concerned that the patch maybe increasing my body temperature.
An Ambulance was called, they decided to take me to Hospital where I was
admitted to hospital again for 7 days.
I started to recover straight away. I was diagnosed with a chest infection so I
was advised by the Speech and language Specialist that I will need to start
having Puree food and add more thickener to my drinks.
My right arm was causing me a lot of pain, so
much so I was unable to move it, this was a big problem as I am right handed.
My Neurologist referred me to the Doctor who gave me a Steroid injection for my
frozen right shoulder.
I was unable to exercise whilst my right Shoulder was so painful, I had the
Steroid injection 3 months later, which helped a lot with the pain. I got my
Carers to exercise my arms everyday, like moving above my shoulders then above
my head when my shoulder was more flexible.
I started to go to a Gym where they have MEDImotion bikes, they are powered
assisted bikes. They have different Weight machines you can use whilst in a
Wheelchair, I found it difficult to use these weight machines at first, it had
been six months I’d been out with my shoulder injury.
Later that year my Occupation Therapist had 2 Ceiling Track Hoists installed in
my property, 1 in the Front room and 1 in the Bedroom, I did not want to use it
at first as I was able to stand tall using the Standing Hoist. A few months
later my (OT) stopped me using the Standing Hoist, this was because I was only
able to use my left arm, I was upset at first as this was the only way I was
able to stand.
I am not able to do much now, I’m unable to move my legs and my right arm, I’ve
not got much Core strength. I am however exercising them to maintain them, even
got a slight improvement, I really enjoy exercising.
When people are talking to me or I am looking up at someone/something, my
shoulders become very painful. I have a Hot Stone Massage ever week, this
really helps relax my shoulder muscles, as they become very tight during the
week.