I haven't spoken much about my husband's condition before, Mike has a tethered spinal cord or occult spinal dysraphism is the proper term.
Basically in layman's terms this means his spinal cord is fused into his spine at one point low down so instead of moving freely up and down as he moves and bends as ours does, his is stuck and as he's grown it has become like an overstretched elastic band.
Due to it's position it caused paralysis in his left leg from the knee down and he has one foot 3 sizes smaller than the other. Fortunately or not I suppose his ankle is fixed so he cannot adjust when going up slopes etc but this does allow him to walk as if he had a peg leg I guess, this itself always impresses me as when my foot goes to sleep I can't walk on it at all, I just collapse to the ground!
The lack of signal into his left leg does of course result in muscle wastage so he must try to exercise the leg to keep enough muscle to walk.
The stretched cord causes him constant pain, yes constant, unless he's lying down he's in a lot of pain, this ranges from his lower back, his knee and more often recently in his neck. You wouldn't know most of the time, he doesn't like to complain about it and usually just carries on until I can see it in his eyes and insist he takes some pain killers. He should be taking 8 a day and they're very strong but he refuses to take them unless he can't carry on because he says if he becomes reliant on them and the pain gets worse the next drug up is morphine and where does he go from there?
He started getting the pain when he was a toddler but it wasn't until he was 10 that a diagnosis was made after having a lumber puncture. It was considered too risky to try to operate.
The lack of feeling causes problems with incontinence and may eventually cause his reproductive organs to stop working.
This is a degenerative condition due to the continued stretching of the cord, Mike was advised by a top specialist that by the time he was 40 the cord would likely have snapped and he would be paralysed from the waist down, he's now 44.
To his credit Mike worked hard in his younger years, he had his own business and made enough money to live a very comfortable lifestyle owning more than one house and allowing him to move to France for a time.
Unfortunately his health took a sudden decline and he was unable to continue working, he basically lost everything, his wife, unable to cope with the decline in lifestyle, left him with 2 toddlers to look after while she found a financial replacement. The sudden lack of mobility coupled with the loss of his wife and daughter plunged him into depression and he suffered a nervous breakdown, this caused him to gain a lot of weight which in turn hindered his mobility further.
Mike lost the ability to walk and was wheelchair bound, homeless and broke.
With the help of a carer he was eventually given a fully adapted home, he worked damn hard to control his eating and push through the pain to exercise to lose the weight and attended physio to learn to walk again.
He slowly fought his way back and began to regain some of the confidence he had lost.
It is perhaps understandable then that when it came to leaving his home to marry me he had his reservations, my home wasn't suitable for him, I already had 5 kids running round leaving loads of mess for him to fall over and then there was that nagging doubt that I may not stand by him if his health took a further downturn.
We waited a long time to fix the housing, huge amounts of assessments from OT's, endless paperwork and red tape to try to secure the money to adapt the property. We ended up having to move the family to a different town to a house that could be adapted and even then it took another 18 months before the work started. It was an awful 8 weeks, I found it incredibly stressful having workmen in the house every day making horrendous amounts of noise but in the end it was done and we now have a house that is adapted for him, he doesn't have to go upstairs and if he needs to use his wheelchair he can.
Well that's the idea.....
Enter Aragon Housing Association.....
When we moved into the property it hadn't been touched in about 30 years, it was thickly stained with nicotine, it stank, even the woodwork stank. We hadn't been in long when the upstairs wetroom began leaking through into the lounge. In total we had them out 5 times about it, they left it until the ceiling fell down before bothering to come and look and every man that came thought it was a different problem, they replaced the trap twice and redid the floor 3 times before it stopped. Then the sink began leaking, the ceiling fell down in the hall before they came and looked at that. 2 of the bedrooms had massive sections of concrete sticking out past the wall level but they didn't think that was a problem, or the wires hanging out of wall that hadn't been plastered properly, they suggested I paper over it. The back of the garden had huge amounts of broken glass and scrap metal where someone had been dumping in it, on complaining that I has 2 autistic children who didn't have any sense of danger I was told that the garden was big enough not to use that bit but they weren't going to put up any kind of divide to keep the kids safe, one lady told me if people are going to dump crap in your garden they're going to dump crap, nothing you can do about it! The people doing it were also their tenants?!
We were so broke from the move we couldn't afford to pay someone to put fencing up ourselves.
We have since spent so much money improving the house, any spare cash we've had has gone on replacing all the woodwork, decorating, laying flooring, we added a bath upstairs and re tiled and replaced the suite, we replaced the kitchen to make better use of the small space, I have a friend who's a builder in case you're wondering how we've done it all!
Let's not forget also the £60,000 the council paid to add the extension for Mike!
So as far as Aragon are concerned they've gone from having a run down 3 bed property to a 4 bed fully disabled adapted property and it's cost them nothing.
You would think therefore that they could and would want to maintain it, however for the 3rd time since the work was finished we are unable to use our front door, it keeps dropping and we cannot get in or out.
On reporting it again I have been told that it's not an emergency as we have a back door we can use.
I explained that my husband is disabled and the ground between the back door and the front of the house is very uneven with a big man hole cover that sticks up and it is difficult for him to safely negotiate, there is a small gap between the house and the concrete washing post and a small drop the other side of it, my point really being that if he needs to use his wheelchair he can't which kind of undoes why we have had so much help to adapt the house in the first place. If it was considered that he could just manage without the adaptions we wouldn't have been given them so to say oh well you'll just have to manage till we can be bothered to come and look at it just makes me so mad, they seem to totally miss the point that not being able to get yourself about safely on your own is degrading and frustrating and painful and potentially dangerous, I'd like to see them hobble across there with one leg and in pain and see if they think it's a problem then!
It's been a similar story with the gas meter which is conveniently located in the back corner of a cupboard in the kitchen, I find it almost impossible to get myself in there to top up the meter and cannot reach the gas turn off lever, and Mike certainly cannot do it. There have been a number of times that I've been at work and come home to find him shivering under a blanket because the gas has run out and there's nothing he can do to get it back on. If I was a better wife I'd find time to check it before I leave, but in reality life is chaotic with Freya and Lucas and I'm lucky if I get time to eat before work. We asked for it to be moved in February but are still waiting.
It's really tough to get help when people can see you're struggling but seemingly impossible when you have a condition that isn't visible. Mike's condition has meant that his upper body is huge to compensate for his weak lower back and left side, so when he's got trousers on he looks like a pretty healthy strapping bloke, his hobble is less significant on a good day and if he doesn't stumble on getting out of the car after we've parked somewhere we've had people confront him about parking in a disabled space even though he's clearly displaying a badge. If I had a pound for every person that has told him or me that we or the kids don't look disabled I'd be a millionaire, I've lost hope that there will ever be a time when people get it.
He doesn't get mad about it like me he says he's used to the judgement and the ignorance but why should he have to be? Why should he have to justify himself and explain his difficulties? I'm sure he wishes more than anything that he wasn't disabled, that he hadn't had to spend his entire life in pain and that we could park at the far end of the car park and walk further to the shop. He fights so hard against letting it beat him, he walks as much as he can manage and some days it wins and he can't even get out of bed but the rest of the time he just gets on with life, does things he enjoys and can manage and looks after us slightly high maintenance autistic people. He drives me crazy with his stubbornness but I'm super proud of how far he's come and I wish the rest of the world would give him a break.
