A Whole New World

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Tackling the world on a mobility scooter opens up a whole new world though I’m not sure it’s a fantastic point of view (see what I did there?!).

Suddenly you have to look at route planning differently, you’re no longer concerned about taking the quickest route or the most scenic route but you now have to plot based on drop kerbs and smooth surfaces (. You have to cross roads at crossings, you definitely have to wait for the green man, a path that seemed perfectly level you now discover has a severe adverse camber making you feel like you’ll tip into the road and suddenly every journey requires constant concentration and risk assessments.

I’ve also encountered a feeling I’ve never really encountered before: road rage.

As someone who doesn’t drive I’ve never really done the whole road rage thing but now the anger fills me regularly. The car parked half on the path outside the station blocking my way (& the driver looking massively affronted when asked to move), the cars pulling into ‘Keep Clear’ spaces/crossings/blocking the only drop kerb for what seems like miles! My other huge (& new) bugbear is able bodied people using lifts when there are escalators right there. Yes, I know some disabilities are invisible but the girl with the wheelie bag who then strutted down the concourse faster than my scooter on top speed (4mph I’ll have you know!) and yet almost made me miss my train by repeatedly delaying the lift or the group of gangsta bois getting off the DLR and not leaving me much room to manoeuvre really didn’t seem to need to use the lift at all, it just didn’t occur to them that I had no choice but to.

It’s literally something that occurs daily and as infuriating as it is the fact that I only noticed it once I was disabled does show me that it is born out of literal ignorance, not out of selfishness or malice.

There is therefore one thing I’d like to ask those able bodied people who might read this to do: next time you are out look down, notice how rare dropped kerbs are, how they are often still pretty high (which then either makes them insurmountable or causes jarring pain for the scooter/wheelchair user), notice how our choices of journey are limited, how blocking lifts or kerbs mean we literally can’t continue our journey, remember that we need the disabled toilets because we need the spacious cubicle for our wheels and need the rails to help us on and off the loo, it’s not that we don’t want to queue. I want you to notice all of the little choices that you have everyday, that you don’t even realise you are making and notice how they get taken away when you are disabled.

If the able bodied can start to see things from the eyes of those of us depending on our wheels then maybe we can all start making decisions to improve access and give the disabled back some of the choices we have lost because I think most of us have already lost enough.

The Fall

The title of this post feels a little overly dramatic, like it should be accompanied by a resounding dun dun duuuuun, but I couldn’t really think of a snappy title for what was undoubtedly one of the most terrifying events of my life so far.

If you have read my previous posts then you will see that I’ve had a recent foray into disability and have been slowly coming to terms with my changing ability and unfolding diagnosis.

One thing that has been happening more often lately is the subluxation of my ankles where my ankle ‘gives way on me’, and although I’m becoming more used to it I hadn’t quite realised how bad this could be. On the 19th April it came into sharp focus.

It was around 6.30 in the evening and I was coming downstairs. My 8 year old son was playing in the living room and I was having a relatively good pain day, so I don’t think I was holding the rail. About 6 steps from the bottom of the wooden staircase my right ankle decided that I was no longer allowed to stand up and I descended on my lumbar spine, hitting the edge of each step with my back as I went.

I screamed. I probably swore even though my son was there and I knew instantly that I’d hurt myself quite badly. Tears streaming down my face I looked at my son and he looked absolutely horrified. I needed to try and stay calm in spite of the panic as it was just him and I at home, and although the pain was unreal my motherly instincts meant that I needed to be calm for him. I used him as a leaning post and managed to get myself off the floor and onto the sofa. I text my husband and he was on the train home. I needed to distract my son so I calmly called my mum and sobbed quietly as my son spoke to his Grandma.

When my husband arrived home I finally admitted how bad things were, I thought I’d broken my back and we needed to get to hospital. We dialled 111 who were kind and patient as they went through the assessment with me, and my husband messaged a neighbour to see if she could look after our son.

As he took him round to his bed for the night, a paramedic (Aaron in Bishop’s Stortford, if you know him please tell him he’s bloody magnificent at his job!) turned up and filled me with morphine, funny distractions and gas & air.

As my idyllic little cottage is down a ramshackle footpath the lovely Aaron couldn’t get me out on his own. A second crew arrived and put me onto a spinal board and then a third crew were needed to negotiate the tight corners and turns and bumpy terrain and finally get me into an ambulance.

I eventually got to hospital around 11pm and an X-Ray revealed no fractures but that my muscle spasms had pulled my spine straight when it should have been curved. I also had a very large haematoma on my spine.

The photos below show the injury the next morning (top), at it’s worst (bottom left) and as it is now, a month on (bottom right). (NB Please forgive the hideous 90s tattoo)

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The real horror about this whole thing however wasn’t the pain or the injury or even the fact that I thought I had broken my back; the real terror was the thought of how things would be had my husband not been on the way home. Not only was this not a freak accident that will never happen again this is something that is very likely to recur, given the deterioration in my joints and something that could happen at any time of the day. My husband is a shift worker and works in a place where working late is often inevitable and other than him I had no one to call. And what if the injury had been worse? What if it was dangerous to wait 4 hours between falling and getting into the ambulance? As the third crew needed to negotiate the rocky path were brought over from 60 miles away there would have always been a delay.

The fall meant we had to look seriously at the future and at what adaptations we’d need to keep me safe at home. And we’re probably looking at more than hand rails.

FUNdraising? Try HELLraising…

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That tear stained afternoon brought my reality into sharp focus. My mobility had rapidly deteriorated and there was no acute event that had prompted this. I had theories as to what was wrong with me but then even my mum’s second cousin twice removed seemed to have theories; but a theory didn’t help me do the school run.

Luckily it was the Easter holidays and I therefore had a bit of breathing room. I couldn’t see myself walking the 6 miles a day anymore and my husband’s (still felt weird saying husband as we should have been honeymooning) work meant that he could only help occasionally. I had some help from the other mums but again was sporadic and it wasn’t fair to anyone to see that as a solution. The only answer was wheels.

I can’t drive, I never have driven as I’m a fast walker and was used to covering large distances everyday; my own school had been the other side of town, it never phased me. Up until my son was born, when I was 28, not driving had been a choice, however having detached a retina in childbirth, and losing much of my visual field, that choice was taken away from me.

The options I was facing were regular taxis, a self propelling wheelchair or a mobility scooter. Taxis I ruled out quickly; they were still me relying on other people which I was reluctant to do, besides cost wise it would be at least £50 per week & I didn’t really have that in my budget. A self propelling chair wasn’t really a choice either as my arms are almost as bad as my legs and certainly not up to the distance. That left a scooter. We went to the mobility centre in our town & asked about hiring one, my rheumatology appointment was about 6 weeks away and we thought if I was diagnosed with something simple to treat that after a month or two I might be able to walk more; the trouble with that idea was that it cost £150 per month & realistically the least time we would need it for would be 3 months. Even the woman in the shop told us it was a false economy and that we should look into buying one. That was when things got really tricky.

Buying a scooter was clearly the most sensible thing to do but it still wasn’t a straightforward decision. I live in a small cottage down a ramshackle footpath and have very little storage space. On top of this we don’t have a car and need to travel to the Midlands regularly so that I can spend some time with my stepchildren. I needed a scooter that could not only go on trains easily but that could be got through stations that don’t have step free access; this meant that a foldable scooter was the only thing that would do which unfortunately also placed me in the £1000+ price bracket.

I don’t have savings, I was on statutory sick pay in a low-paid job anyway and I didn’t have the means to buy a scooter, yet needed it urgently. After long discussions with my friends and family I decided to start a fundraising page. It was horribly horribly stressful.

I try to live by the saying that pride is the appendix of emotions but my pride is more than grumbling. My ego had already taken a knock with my mobility failing, having to go cap in hand to people was almost an instant knockout. Straightaway I was faced with having to justify my choice of such an expensive scooter over and over again. I felt like I was being spoilt, as if I was asking for too much. Maybe I was, but people didn’t have to help me. I got myself into a situation where I had to reveal how much I weighed, as someone pointed out a cheaper model that might be suitable, but not for someone of my size, that was excruciating. I went on to a local mother’s support forum asking for advice on fundraising. I mentioned that I was fundraising for a scooter, but not once did I ask for donations, I didn’t even post the link. As my bruised ego was worrying about looking like an old lady riding a scooter, I was trying to think of ways that I could lessen that effect.  I pondered the idea of getting one spray-painted and so asked for advice on spray-painters, I even pointed out that it was nearly my birthday and then maybe I’d get someone to get it for me as a gift as obviously I didn’t want to increase the amount that I was fundraising for. I noticed that my posts were being deleted and I asked why. I wish I hadn’t.

The reply was that I was asking for money, that I was being unsubtle and trying to get money out of people and that people in the group felt uncomfortable; that they had messaged the admins behind my back and that the admins were trying to ‘protect’ me from the nasty things people were saying about me.  I was told that everyone had problems that everyone like would like to have things given to them,  that everyone would like a free spray paint for their birthday. Something I hadn’t even asked for. I cried a lot. I wanted to give back the money that I had raised so far (none from this group I’d like to add). I turned down the offer from the local paper to run a story on my plight. I felt like a beggar, I felt humiliated. I wondered if perhaps I had said it wrong, I was in a lot of pain, I was on a lot of drugs, perhaps it had come across wrong.

That was my low point.  Begging for something that I didn’t want. Begging for something that I hated the idea of having to have. Begging for something that I needed and had no other way of getting. I’d got the forms to apply for PIP but it takes months and I had two weeks. I cried a lot.

People were generous though. My friends, family,  people who surprised me as they’re not particularly close to me, people that obviously saw I had a genuine need and wanted to help. I got close to my target and bid for a scooter on eBay and won it. I borrowed the last few pounds and emptied out my bank account to make up for the 10% that Go Fund Me takes and I was so relieved, so relieved that it was over.

I’ve seen other disabled people sharing their PayPal.me addresses, accepting help graciously from kind benefactors for the multitude of costs that being disabled brings and I applaud them. I have a shopping list longer than my arm of aids and appliances that I need to make my life easier but I won’t be asking, I’ll struggle on. Though pride may well be the appendix of emotions I can’t see me getting an appendicectomy any time soon.

 

Stubbornness isn’t strength.

As I’ve said previously I’m great at martyrdom. Even when my arms are burning from carrying heavy shopping I won’ t hand the bags over, I’ll grit my teeth and say “no, no, I’m fine.”

Stubbornness is my MO, it always has been, it’s in my birth sign (Taurean), my DNA (my mother can make my stubborn streak look more like a stubborn speck) and its in my nationality (the great British stiff upper lip). Therefore it should be no surprise that my stubbornness spills into my reaction to ill health.

I’m the annoying colleague who spreads my germs around the workplace rather than stay home with a Lemsip. I’m the person who will furrow my brow or rub my temples but decline your offer of a headache pill. I allow chest infections to become pneumonias before visiting my GP and once even had my manager put me to bed at work (I was a nurse) and busy himself with emptying my vomit bowls. I’m sure you get the picture by now, I struggle through.

Don’t get me wrong I love a good moan, I’m just not big on actually doing anything to change the situation. This is quite common in chronic illness, especially chronic pain, we normalise the symptoms. We don’t like them but we don’t do anything about the necessarily.

The first change I had to concede to came on my wedding day. I had bought the most beautiful shoes. Bought them well before we set a date. They were very sparkly, they were tattoo themed (very important given how much of my skin is adorned), they have been imported from America at ridiculous cost and they were high, very high.  Initially I thought I’d get round the height of the heels by only wearing them for the photographs or perhaps for the ceremony, but not the party afterwards. A week from the wedding I realised that my foot wouldn’t even bend in to a position to put the shoes on without being in extraordinary amounts of pain.  I had to relent. I had no choice. I spoke to my friend and I managed to borrow a gorgeous pair of silver and white Dr Marten boots. I made them my ‘something borrowed’.

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Another friend managed to lend me a cane so I could be a social butterfly at my after wedding drinks.  We had a perfect day as every bride should. I manage to stay free from pain until after the vows had been said. I pushed through the pain later in the afternoon with help of opiates and champagne. I was floating on air.

The next morning was a very different story; I was in agony, I could hardly move, barely walk. I couldn’t hide the fact that I was in a lot of pain no matter how hard I tried to blush my way through it. That was the first time I used the disabled toilet; asking the staff for the key as I simply couldn’t face the stairs down to the regular able-bodied toilets. I hadn’t quite planned on actioning the in sickness and in health part of our vows this early on in our marriage. I was basically bedbound for three days. Quite the honeymoon.

My husband and I shuffled things as much as we could. We asked for favours, switched round shifts I did everything we could to minimise my activity. It was all very makeshift, very ‘keep calm and carry on’ we just had to get things done until my pain and immobility passed.  Except it didn’t. If anything I was getting worse, not better and it all came to a head just before half term.

My son had a birthday party at friend’s house on the other side of town. It wasn’t much further than the usual school run but was still quite a long way. My husband dropped him off before having to go to work,  I was sure I’d be able to collect him. I hadn’t even gone a quarter of a mile before I realised that the pain in my legs wasn’t going to relent. But I’m stubborn, I thought I was strong and I could keep going. About halfway there and I started crying. The pain was too much. I couldn’t keep going. But I had to.  I felt so embarrassed, how could my legs be just not working? I’m 35 years old and used to walking around 6 miles a day, this was ridiculous. What if someone saw me? I needed to man up, I needed to collect my son. I wiped my tears just before I got to the house, I’d made it. As the birthday girl’s mum answered the door she could clearly see I was in pain. She looked at my stick and said “You didn’t walk here did you? You should’ve said, I’d have dropped him off. Do you need a lift home?” I burst into tears again. I did need a lift, I accepted graciously and something inside my head clicked into place; I wasn’t getting better and I couldn’t walk without significant pain and difficulty, and without then being housebound for at least a couple of days.

I knew then that I had thinking to do and decisions to make.

Raggy Dolly

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I’m a product of the 80’s; weaned on Smash and the best era of kid’s TV. My nickname of the last 6 years or so is Dolly. These 2 facts alone could be enough to justify the name of my blog but believe it or not there is more to it than that.

I’ve always been clumsy. I have scars that predate my memory, I broke my first bone at 5, was in A&E so much as a child that my parents were probed as to how I was always black and blue,  and I’ve been x-rayed in excess of 50 times in my life.

Over the last few years I noticed that I was increasingly getting joint pain, my always knotty shoulders ached even more than they used to, my knees and ankles felt weak and my clumsiness showed no sign disappearing. However three months ago things worsened even more.  I didn’t only have your usual aches and pains that I had put down to reaching the latter point of my 30’s. I had multiple, severe and sometimes burning pains all over my body. It was debilitating.

I saw a physio aged 19 following a shoulder injury and she had said to me that my joints were hypermobile,  she also said that this was a good thing as I would ‘break fewer bones and I wouldn’t get arthritis when I got older’. It was also a running joke with friends and family that I needed new ankles or that if you looked at me harshly I would bruise.

I’ve got quite a high pain threshold. I don’t really do tablets, martyrdom is much more my thing; but when the pain got so severe I couldn’t ignore it I had to go to the chemist. And when the chemist could no longer supply drugs to ease my pain I had to go to the doctors.  It was at this point I started to wonder whether my bendy joints could’ve been the cause.

I hadn’t realised that it wasn’t normal for your joints to lock in place or for them to regularly sound like the percussion section of an orchestra or indeed for them to give way on you when you are doing something as innocent as just walking. It was definitely normal for me.

It became clear that I wasn’t just any old Dolly but a raggy Dolly. Made imperfectly, as the song goes,  and that these imperfections may well be a part of me that I was going to have to get used to.

(The picture is of Lucy who was my favourite of the Raggy Dolls. Well, behind Sad Sack isn’t that ironic for someone who also suffers with her mental health. Lucy was so called because her joints weren’t fixed on properly like the other dolls and they usedto fall off and bend the wrong way; that’s how she ended up in the reject bin.)

Remembering Albert

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Twenty five years ago this month a gay teenager, Albert Kennedy, fell to his death from a multi storey car park in Manchester. According to a friend who was out with Albert that night they were being chased by ‘queer bashers’. This was not new to Albert, he had been subjected to homophobic abuse regularly, both when out in the vibrant gay scene of Manchester and at the children’s homes that he had been placed with. Albert fitted into the mould of a group of young gay teenagers back in 1989, displaced from their homes, not able to settle in foster homes and bullied in the children’s homes all because of their sexuality. Even the way Albert’s death was reported was laden with homophobia, describing the scene of his death as some kind of plague ridden zone that had to be made safe for the public.

The friend that Albert had been with that night, Paul, was being fostered by a lady called Cath Hall. Cath knew Albert personally but more than this she knew the story of his ongoing persecution all too well. Cath felt that she could not meet the full range of needs of the young LGBT people who got placed with her. As a result, and at the cost of a lot of attack towards her (Cath got called The Witch of Withinshaw), the Albert Kennedy Trust was formed. The Albert Kennedy Trust currently works in Greater London and Greater Manchester and looks to fill the gaps that Cath hall had identified. They aim to meet the individual needs of each young person that they come into contact with and help them to get back on track. They support those young people who have become displaced or been victims of domestic violence because they have come out as Lesbian, Gay, Bisexual or Trans*. Support is available through a range of schemes, mentoring, befriending, online, face to face and phone support, and an accredited training programme to promote independent living skills. The Albert Kennedy Trust works at both managing crises and in planning for the future.

Their work is valuable beyond measure and it is a charity very close to my heart. This is why I chose to make a donation of two weeks of my book sales (as stated in a previous post- Don’t Say The P Word) as well as a personal donation of £10. It’s not as much as I’d like to give but is all I can right now.

If you want to find out more, or support the Albert Kennedy Trust then please visit their site: http://www.akt.org.uk/

Please note I am not affiliated with the Albert Kennedy Trust, I write this solely as a supporter.

Don’t Use The P Word!

I’m not talking about racist slang or words for what dwells in men’s underpants, the P word in question here is politics.

Now, I’m not an activist, far from it; I’ve only ever been to one march and if I’m perfectly honest I left part way through to go to a pub. It’s not that I don’t have a political viewpoint, I do, quite a strong one, I just don’t usually have the energy or inclination to argue about it.

(FWIW I’d say I’m a left leaning liberal with some socialist ideology)

The other day I broke my ‘don’t use the P word’ rule and tweeted in a slightly less than complementary way about the Unintelligent Kill Immigration Party (you know the ones, they like real ale and dislike accurate figures), I *might* have even retweeted the suggestion that people book tickets to the public meetings and not go. And I *will* admit that I might have said that I, myself, have done this. I got a couple of negative tweets, blocked a couple of people and thought nothing else of it.

A couple days later I was reminded of my tweets. My book got 10 one star reviews within a minute or so of each other, all of them not verified purchases. Some of them were boggling. some of them just meant to upset, almost all of them badly written.

My favourites are this angry yet somehow poetic description of my chick lit as some sort of Marxist propaganda:

DO NOT BY (sic) THIS FOR THE SAKE OF YOUR RESPECT FOR HUMANITY. Absolute disgrace to literature. The left wing propaganda is just a whole other plane of madness. A true leftist hates freedom.

and this one which, if it is an ironic mis-spelling, could be pure genius.

What tripe. Honestly couldn’t believe I paid money (um…you didn’t) for the intelligible (well, thank you.) ramblings of some socially and politically illiterate dolt. Don’t even bither (sic) (snigger)

And I was linked by a friend to an infamous internet forum that is the technological equivalent of the underneath of the bridge that the Billy Goats Gruff liked to clip clop over. I was being torn to pieces as leftie scum and there was a link to my book. Mystery solved.

So I had an idea. As I don’t really do the p word thing I thought that rather than a flaming war of words I do something good. Let’s show the trolls that they make no difference, go to Amazon (http://www.amazon.co.uk/Tiger-Nicola-Sheehan-ebook/dp/B00D5EYHAM), buy my book and I’ll donate my next two weeks profits to charity.

I did wonder if I could find the ‘Eastern European Builders Who Want Your Jobs LGBT Division’ to really make their troll blood boil, but instead have decided on a charity that is very dear to me, the Albert Kennedy Trust who help displaced LGBT teenagers to find help and support.

So please, buy into my ‘left wing propaganda’, let’s show the trolls and make a bit of money for an awesome charity.

http://www.akt.org.uk/