I’d come to the conclusion my life was going to be over! I was useless to everyone and couldn’t do much for myself.
My days now filled with daytime TV. Jeremy Kyle was my favourite as I used to think at least my life’s not that bad whilst sat in my tatty recliner.
I was in so much pain but on enough drugs to be spaced out so I wasn’t focused on it.
Gone were the days of going to the gym ,being so active and enjoying life like a normal person being like a normal family.
Endless appointments with different consultants treating different areas of my body all having different theories as to what was happening but nobody co-ordinating my care.
My GP was empathic but didn’t even recieve letters or results from any of the other professionals so he didn’t know what was happening.
I kept looking at my children feeling so much guilt that I had brought such beautiful babies into this world and I was failing them. This wasn’t what i promised them when i carried them around in my stomach for 9 months. Each and every one deserved a childhood of adventure. A happy ,carefree childhood. Outdoors, nature ,camping, sailing…….I broke that promise.
When i got sick ,I tried getting help from community services in our area for the children because they were isolated especially with my Husband working weekends but there wasn’t anything available and it is still very limited. This is something I am going to change as no family should go through what we have.
I continually asked to try different things if there was different tests ,tablets to try and help but nobody did anything.
One day I was watching tv and the tour de France came on. I Just thought to myself stuff this, I’m in pain anyway ,i need to just try and do something.
You see I had plans. I wanted to travel around Europe with the children. I wanted to spend/invest as much time with them as possible before they all grew up and started their own adventures. To start their own adventures they needed the skills and confidence. That was my job.
I begged my pain consultant that my medication be changed and it was . I came of oxycontin and went on Nabilone which has helped me. I found the personal trainer who used to teach me spinning before i got sick and asked him to support me in the gym . He has been amazing as have the other staff at the gym where I go. I couldn’t have gone back to the gym without him being there.
The problem was I struggled to breathe on exertion as part of my illness is that I have Vocal Cord Dysfunction. I had this condition for years but it took so long to diagnose.
I get spasms my throat and my throat actually closes . I choke . I struggle with the rythm of my breathing. I have put on so much weight from being inactive too.
So when im exercising I wear a non invasive ventilator. I have been going to the gym 5 days a week since January. At first I could only do 3 mins at once ,now I can do 20km or sometimes up to 90 mins on the handbike. At first it was awful I was petrified of choking episodes, not being able to breathe but my personal trainer got me through that. This is John Chew
I’m still in lots of pain but I am building up my strength enough to be able to push myself for that little bit so I can do something with the children.
I was really fortunate to acquire a handcycle so I can go out with the children and do a normal family activity. This summer for the first time ever ,I went cycling with my three boys. I’m hoping to try to start up a family cycling club here in Fleetwood as soon as i recover from the Superherotri.
How I first heard about superherotri and TeamBrit……..
I hadn’t been on social media for ages as it upset me seeing how people lived their lives compared to mine. Made me feel like a worse parent as i felt it was pointing out to me what i wasn’t doing.
I joined Twitter to raise awareness about the lack of support in my area for young carers and their families. Then i somehow got drawn into the whole superherotri with TeamBrit. This encouraged me to keep going to the gym.
TeamBrit when i first read about them I cried. I cried because I was so inspired . You see I love fast cars!! I love f1 ! I just thought bloody yeh why shouldn’t we race alongside able bodied . We only lose parts of our body or functions not the person we are ,what we enjoy doing .
Why should /does everything in your life stop when you become disabled? Why do we lose our identity. A lot is to do with the lack of suitable equipment. Why does it seem to cost so much more to make a trike for a disabled person than a bike for an able bodied person? Why is it that any piece of equipment that is associated with disabled people is so much more expensive? Do we require a different metal or mechanics to make things work ?
So to see a racing team competing on equal terms in a car that just may have slight adaptations for the driver to use it brought some hope to me.
Of course I’m never going to be a race car driver but there are plenty of other things that I could try.
TeamBrit asked me to join them for the Superherotri at Dorney Lake Windsor on the 18th of August this year.
My Team captain Jamie Falvey a former Notts marine commando , joined the motor racing team after sustaining permanent hearing damage and tinnitus.
Jamie did the swimming part of the tri ,very brave as even if it was possible to swim with a ventilator it wouldn’t be happening.
I did the 20km handcycle bit. Quest 88 kindly let me use a handbike as I couldn’t have transported mine down on the train. It did need quite a few adjustments ( I was running slightly late from having to ride on my wheelchair from the hotel to the event) I wasn’t complaining as this did involve two superheroes in green masks and green capes with spanners inbetween my legs . They certainly knew what they were doing and managed to get things fitted to me best as possible.
The first lap I thought I would die and probably wanted to. But then found my rhythm and had the huge incentive of finishing quickly because the seat was so bloomin uncomfortable (probably because my butt was too big for it ).
Jamie then had to do the run also as the lady who was doing it unfortunately couldn’t (get better soon).
It was a fantastic day. It was amazing to have finally met Sally from TeamBrit the lady who’s been supporting and corresponding with me .💜
Was sad to have not put names to other faces but this is only the beginning of my journey so I will be back and we will meet. Thankyou to each and everyone of YOU who have given your time and support it means a great deal.
Events like this are so important. People like me gain so much.
Not only was this my first sporting event it’s the first time I’d travelled on a train in my electric wheelchair, stayed in a hotel with support from my daughter’s but I did it.
This potentially opens up many opportunities for my family, just maybe I might get to take the kids around Europe afterall. The possibilities are endless…..
It truly was an amazing day . I am still completely exhausted and covered in bruises but I gained confidence, humility and some independence.
I very nearly lost my life on the way back to the hotel though. I fell asleep on the river path with my hand on the power stick and ended up on the grass verge. I was lucky I went right and not left into the river . I’m sure there would have been a superhero to rescue me.
I also gained friends some sponsorship money for kartforce ( im sorry it’s not more) and my first medal !
Will see you all again soon.