In The Long Run....
Donation protected
This page has been set up to raise funds through sponsorship of my husband who is going to be running a series of ultra marathons over the next 18 months, culminating in a100k race in 2020.
He ran his first ultra marathon, Vale coastal ultra, in May of this year, he plans to run the following ultra marathons (more will be added at a later date)
1st June -Vogum (Vale of Glamorgan ultra marathon)
August - Bath two tunnels ultra marathon (tbc)
October - Merthyr trail 50k or if not held (not yet confirmed for this year) the Gower ultra
His progress (and some lovely pics of the south Wales valleys) can be followed on his Facebook page here https://www.facebook.com/50kat50y
The fundraising is for essential mobility and daily living aids and for access and bathing adaptations to my home, to help me regain some independence.
Backstory- beware long long long essay ahead!
In 2007 I was studying for my environmental geoscience undergraduate masters degree as a mature student. I had always wanted to go to university, but life got in the way and I had to leave school at 17 to work full time. So this was huge to me, I was proving to myself that I could do this, even if my brain had been in hibernation for two decades .
I woke up one morning during my second year to excruciating pain in my left leg, leaving me struggling to walk and unable to sit or stand for more than a few minutes. After investigation it was discovered that I had a single prolapsed disc in my lower spine, compressing the root nerve, after surgery and recovery I was thankfully able to go back to my normal life and studies.
18 months later, I started, towards the end of my degree to get pain down my left leg again and also down my right arm, struggling to write notes in lectures and finding stairs too difficult to use. Things rapidly deteriorated and I was forced to end my degree six months early and graduated with a first class honours BSc rather than a masters (but I got that degree!)
It was eventually discovered that I had multi level disc failure in both my lumbar and cervical spine, and I was diagnosed with degenerative disk disease. This has led to a progressive deterioration in my mobility and leaves me in constant pain, which has in turn caused me to be in constant tachycardia (my heart rate does not drop below mid 80s even in deep sleep and in the day averages to 100/120 when at rest), my cardiologist called it "sympathetic overdrive", which comes with its own additions to my physical limitations.
Over the last few years we have both managed to emotionally come to terms with the impact that this disease has had on our lives. We were always very active and I prided myself on my ability to push my physical boundaries, that's changed, just a tiny bit .
It's been a huge adjustment for us both and we have developed a pretty unique coping strategy. We are disrespectful to the disease, we constantly poke fun at it, robbing it off its psychological power over us. We both definitely think that it's better to laugh at it than cry because of it.
~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~
About 2/3 years back we went through the insane amount of assessments to look at having adaptations to my house to allow me to regain some independence. After six separate assessments it was decided that I needed as well as various aids adaptations which included a stair lift, wet room, doors widened and safe wheelchair access to the house. But, because my husband works, we are ineligible for a grant to pay for these adaptations (the formula that they use to calculate disposable income is insane, it allowed for something like only ~£120 a week for the two of us to cover mortgage, utilities, food and all bills including council tax for etc, everything else was classed as disposable income).
We have over the past couple of years looked for other ways to fund this but because we don't claim income assessed benefits we always fall short. And being a single income household there is very little disposable income and that bit tends to get eaten up by emergencies.
The things from the assessment that will have the biggest impact on my quality of life are making the house wheelchair accessible, and providing bathing facilities. I did a lot of research on these and the ideal options for these two things are prohibitively expensive.
Turning the utility room into a wet room would cost in the region of £12/15k and altering the rear entrance to the house to allow me to drive the power chair into the house would require substantial alterations to the kitchen, again looking at £10k upwards (when combined with regrading of path and widening of doors etc.)
So, after a lot of thought and research I've come up with alternative options that are much more affordable and added in with this some aids that would make a big difference, I'll explain and list below.
Wheelchair access and secure storage £4,000/£4,500~
Regrade and make safe the path at the side and back of the property, making sure drainage system is not compromised, small ramp needed to bridge the two halves of the rear, provide a secure, waterproof outside storage area with power, capable of allowing the chair to be driven into it.
Prices for regrading the access with concrete or tarmac are estimated to be between £2,500/£3,000, depending on which material is most suitable. There are secure storage units which are specifically designed to store and charge power chairs and scooters, prices start at £1,600, the work to install and connect to the power supply would be a couple of hundred pounds.
Bathroom facilities - £3,250~
As an interim measure and as a therapy aid a bath lift would make a huge difference, allowing me to get in and out safely and be propped in a suitable position to minimise the pain and allow me to soak muscles in hot water (£250)
Instead of a wet room, if the old (non functional) bathroom suite was removed from the downstairs bathroom (very small bathroom) , with some building work to repair plumbing, brick up window, tile it etc., it would be of a suitable size to install a toilet and a large walk in shower cubicle (double size) fitted with grab handles and a wall mounted shower seat. (£3,000~)
This would answer all my bathing needs, access to it would be through my downstairs bedroom as it is directly behind it (next to my utility room), so would mean I would no longer need a commode.
Additional daily living and mobility aids - £960
Manual wheelchair with suspension - this would minimise pain from uneven surfaces and would mean I could to out for longer periods as the accumulated pain is one of the major reasons we cut outings short. This could be used in anyone's car where the power chair is restricted to our car only (£350)
Powerstroll attachment for manual chair - this would mean people who don't have the strength /stamina to push me around in the manual chair don't have to. It would allow myself and my carer to go to more places than we currently do. Again will mean it can be used with any car /any person as it's only 7kg in weight. (£415)
Pressure relief mattress and bed support - for the downstairs bedroom, will allow me to comfortably sit up in my bed downstairs as currently I can only lie down due to pressure on base of spine (£195)
This all comes to around £9,000 I do expect it may go upwards in cost as building works often do, but we hopefully will be able to save enough for any shortfall. An extra added bonus has been that In doing my research I've come across a huge amount of small aids that will improve small parts of my life hugely, like accessories for the Wheelchairs to keep warm /attach crutches etc, rotating cushions for car seats and handles you put in the car door to help with getting in and out, portable ramps, pressure cushions etc that I'm going to save up and buy, so it's been a good thing doing this research as I wasn't aware of any of these products.
Thank you so much for reading this, if you reached the end you need a medal as it's a huge essay
He ran his first ultra marathon, Vale coastal ultra, in May of this year, he plans to run the following ultra marathons (more will be added at a later date)
1st June -Vogum (Vale of Glamorgan ultra marathon)
August - Bath two tunnels ultra marathon (tbc)
October - Merthyr trail 50k or if not held (not yet confirmed for this year) the Gower ultra
His progress (and some lovely pics of the south Wales valleys) can be followed on his Facebook page here https://www.facebook.com/50kat50y
The fundraising is for essential mobility and daily living aids and for access and bathing adaptations to my home, to help me regain some independence.
Backstory- beware long long long essay ahead!
In 2007 I was studying for my environmental geoscience undergraduate masters degree as a mature student. I had always wanted to go to university, but life got in the way and I had to leave school at 17 to work full time. So this was huge to me, I was proving to myself that I could do this, even if my brain had been in hibernation for two decades .
I woke up one morning during my second year to excruciating pain in my left leg, leaving me struggling to walk and unable to sit or stand for more than a few minutes. After investigation it was discovered that I had a single prolapsed disc in my lower spine, compressing the root nerve, after surgery and recovery I was thankfully able to go back to my normal life and studies.
18 months later, I started, towards the end of my degree to get pain down my left leg again and also down my right arm, struggling to write notes in lectures and finding stairs too difficult to use. Things rapidly deteriorated and I was forced to end my degree six months early and graduated with a first class honours BSc rather than a masters (but I got that degree!)
It was eventually discovered that I had multi level disc failure in both my lumbar and cervical spine, and I was diagnosed with degenerative disk disease. This has led to a progressive deterioration in my mobility and leaves me in constant pain, which has in turn caused me to be in constant tachycardia (my heart rate does not drop below mid 80s even in deep sleep and in the day averages to 100/120 when at rest), my cardiologist called it "sympathetic overdrive", which comes with its own additions to my physical limitations.
Over the last few years we have both managed to emotionally come to terms with the impact that this disease has had on our lives. We were always very active and I prided myself on my ability to push my physical boundaries, that's changed, just a tiny bit .
It's been a huge adjustment for us both and we have developed a pretty unique coping strategy. We are disrespectful to the disease, we constantly poke fun at it, robbing it off its psychological power over us. We both definitely think that it's better to laugh at it than cry because of it.
~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~
About 2/3 years back we went through the insane amount of assessments to look at having adaptations to my house to allow me to regain some independence. After six separate assessments it was decided that I needed as well as various aids adaptations which included a stair lift, wet room, doors widened and safe wheelchair access to the house. But, because my husband works, we are ineligible for a grant to pay for these adaptations (the formula that they use to calculate disposable income is insane, it allowed for something like only ~£120 a week for the two of us to cover mortgage, utilities, food and all bills including council tax for etc, everything else was classed as disposable income).
We have over the past couple of years looked for other ways to fund this but because we don't claim income assessed benefits we always fall short. And being a single income household there is very little disposable income and that bit tends to get eaten up by emergencies.
The things from the assessment that will have the biggest impact on my quality of life are making the house wheelchair accessible, and providing bathing facilities. I did a lot of research on these and the ideal options for these two things are prohibitively expensive.
Turning the utility room into a wet room would cost in the region of £12/15k and altering the rear entrance to the house to allow me to drive the power chair into the house would require substantial alterations to the kitchen, again looking at £10k upwards (when combined with regrading of path and widening of doors etc.)
So, after a lot of thought and research I've come up with alternative options that are much more affordable and added in with this some aids that would make a big difference, I'll explain and list below.
Wheelchair access and secure storage £4,000/£4,500~
Regrade and make safe the path at the side and back of the property, making sure drainage system is not compromised, small ramp needed to bridge the two halves of the rear, provide a secure, waterproof outside storage area with power, capable of allowing the chair to be driven into it.
Prices for regrading the access with concrete or tarmac are estimated to be between £2,500/£3,000, depending on which material is most suitable. There are secure storage units which are specifically designed to store and charge power chairs and scooters, prices start at £1,600, the work to install and connect to the power supply would be a couple of hundred pounds.
Bathroom facilities - £3,250~
As an interim measure and as a therapy aid a bath lift would make a huge difference, allowing me to get in and out safely and be propped in a suitable position to minimise the pain and allow me to soak muscles in hot water (£250)
Instead of a wet room, if the old (non functional) bathroom suite was removed from the downstairs bathroom (very small bathroom) , with some building work to repair plumbing, brick up window, tile it etc., it would be of a suitable size to install a toilet and a large walk in shower cubicle (double size) fitted with grab handles and a wall mounted shower seat. (£3,000~)
This would answer all my bathing needs, access to it would be through my downstairs bedroom as it is directly behind it (next to my utility room), so would mean I would no longer need a commode.
Additional daily living and mobility aids - £960
Manual wheelchair with suspension - this would minimise pain from uneven surfaces and would mean I could to out for longer periods as the accumulated pain is one of the major reasons we cut outings short. This could be used in anyone's car where the power chair is restricted to our car only (£350)
Powerstroll attachment for manual chair - this would mean people who don't have the strength /stamina to push me around in the manual chair don't have to. It would allow myself and my carer to go to more places than we currently do. Again will mean it can be used with any car /any person as it's only 7kg in weight. (£415)
Pressure relief mattress and bed support - for the downstairs bedroom, will allow me to comfortably sit up in my bed downstairs as currently I can only lie down due to pressure on base of spine (£195)
This all comes to around £9,000 I do expect it may go upwards in cost as building works often do, but we hopefully will be able to save enough for any shortfall. An extra added bonus has been that In doing my research I've come across a huge amount of small aids that will improve small parts of my life hugely, like accessories for the Wheelchairs to keep warm /attach crutches etc, rotating cushions for car seats and handles you put in the car door to help with getting in and out, portable ramps, pressure cushions etc that I'm going to save up and buy, so it's been a good thing doing this research as I wasn't aware of any of these products.
Thank you so much for reading this, if you reached the end you need a medal as it's a huge essay
Co-organizers (2)
Phillippa Rykala
Organizer
Adam Rykała
Co-organizer