Wow I can’t actually believe we are in May where has the time gone!?
The first weekend in may ‘bank holiday weekend’ is a special memory for hubby and i, but more for me it was the weekend we finally moved into our accessible home provided by Habinteg – I have spoken a few times on the accessible housing crisis we have in the UK and the changes that desperately need to happen in order to have more and better accessible homes, but I’ve never really gone into to much depth of how my life was affected before I moved.
So here goes – before I start I am going to be very real some of what I’m about to say may upset or trigger past or current situations.
After being diagnosed at 24 with a rare form of Muscular Dystrophy a progressive muscle wasting condition, i also made the hard decision to also leave my job working for a well known pub chain, as it was becoming harder to stand for hours on end as well as running up and down a busy bar, I was also losing my balance a lot more which I’m sure you will agree wasn’t the safest of places ‘my bum could only take so much’ but it wasn’t just happening at work I lived in work accommodation. Losing my balance and falling down the stairs, getting stuck in the bath or in the shower wasn’t how I wanted to live anymore it was affecting not just my mental health but physical well-being also – leaving my job meant losing my home I had lived in for years.
24, newly diagnosed, no home. Life just got very scary thankfully Milton Keynes council offered me a ground floor one bed flat that would meet my needs. I was still walking with the aid of a walking stick at the time so this was music to my ears no more failing down the stairs, yay!
I wasn’t given the chance to actually look around the property before to make sure it was meeting all my needs, it was a case of accept or nothing. I just had to take them at face value and fingers crossed they had listened – unfortunately it wasn’t great but I could make it work with simple adjustments, the slop to get to the property was slippy (remember I’m still walking), light switches at floor level as the tenant before me use to kick the lights on and off (if I kicked anything my bum is saying hello to the floor!).
It might seem like very minor things to some people, to get my knickers in a twist about but it’s those minor little details that still make somewhere inaccessible – just to leave took me 20 minutes to walk safely down the slop with my heart in my mouth every-time it became my biggest fear and anxiety.
I lived on my own the first few years so every fall, every mishap was just hard mentally I spent most nights crying and hating my body and life – I felt alone and like my non-disabled friends and family just wouldn’t understand plus I didn’t want to become a burden on them. I starting to becoming withdrawn to the outside world I didn’t want to leave my home. I was lucky that my neighbours where incredible and made sure to pop in and make sure I was okay – i then became very good at the fake smiles and I’m okay but deep down screaming inside.
It just got harder even after I met my future husband to be who lived next door but one before moving in. I was still just about able to keep on top of everything without showing just how much I was really struggling, now finding it hard to get to the toilet in time because it took me 10 minutes to get out of the chair then 5 or so minutes to the bathroom it was just easier to use a plastic jug to have a wee, not very dignifying but less accidents – I had a few falls in front of him where I had to call out the falls alarm people for help also.
My transition from walking to wheels had started, my head still hasn’t got to grips with being diagnosed with MD and all the struggles I was starting to have in my own home. My head was a mess I now had someone I could take it out on and as unfair as I knew it was I still created an argument for the sheer sake of creating an argument in the hope that if I make someone feel bad I wasn’t on my own.
Now in a wheelchair unable to walk and unable to use my wheelchair in my home as it was too small to get around in a wheelchair, I was even more stuck in a house that had become even more inaccessible, stuck in a body I hated, with a life I hated. I became even more withdrawn than ever. It wasn’t until I scared myself with thoughts of how easy it would be to wait for Nicky to pop to his parents for the evening and take a full packet of tablets.
Now on antidepressants and talking to a psychiatrist – but both those things didn’t solve the biggest problem I had I was still living in an inaccessible home. You can take all the antidepressants in the world and speak to a psychiatrist but that doesn’t make your home accessible for your needs.
It took another four years of fighting and constantly explaining that the home I was living in wasn’t meeting my needing and affecting not just my mental well-being but my physical also, before the May bank holiday became the weekend that changed my life!
The difference between living in an inaccessible and an accessible home is a matter of living. It’s that simple.
Those who’s homes do meet their accessibility needs have reported improvements in not just their mental but physical well-being also. However, an accessible home is not only beneficial to the people living in it. Just having the right adaptations to the home can create significant savings to the public purse, reducing social care costs for local authorities and health costs for the NHS as the number of accidents at home will significantly reduce.
it may sound like a cliche when I say that my life drastically changed the moment I moved into an accessible home, but it did, I am no longer on antidepressants, I am not withdrawn from the world, i very much love my life, I have grown to love my muscular Dystrophy, I love my independence that my wheelchair gives me. I love my life in general – thankfully my husband stuck by me though the tough times.
This is my/our 10th anniversary of living in an accessible home.
Kisses K
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Thanks for sharing your story Kerry. I’ve been through a lot and am still going through it. I will check out Habinteg again (I somehow thought their accessible property was via local authorities, but I just checked and they deal with only accessible housing. They do say lists are closed now but you can apply so I don’t know what they are thinking there. So happy for you and your hubby though xx
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Katherine
Thank you as always for your comment- I’m truly so sorry you are still going through this – definitely reach out to Habinteg and keep me updated.
Kisses K
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Thanks Kerry, I will, and thanks for your support.
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Anytime
Kisses K
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Hi Kerry thanks for sharing. I am trying to get an accessible home at the moment but even though I am high medical need it is virtually impossible. Out of the last 8 properties I have bid on and been in the top 5 someone’s needs always seem greater even if they don’t need level access but need a home due to homelessness etc any form of social housing is in such short supply at the moment and I fear will only get worse. So glad you have found the happiness you deserve.
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Hi Ade
Thank you for your comment it’s always lovely to see your name pop up.
It’s so frustrating to hear that still the local councils are doing this – everyone’s needs should be considered and the fact yours don’t seem to be just proves the System needs work, this is why one of my campaigns Is on accessible housing
I completely agree with you.
I hope you soon have your very own.
Kisses K
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This made me cry because its exactly how I’m feeling. Its just frustrating as due to the DFG grant, I have to stay here for another 3 years or we will have to pay some of the money back. I would love a fully accessible home 💚
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