Don’t Make Me Hate How My Body LOOKS As Well…

IMG_2813.PNGIt’s that time of year again, the time that I, & many other women dread, the time where we’ll receive judgemental looks & hear snidey whispers: summer time.

The easiest way to keep cool in the summer is to wear as little as is comfortable. It’s the time for bikinis & belly tops, for short shorts & flippy skirts. The time where we dress to feel cool over looking cool. It’s also prime fatshaming time.

Slogans screaming ‘Are you beach body ready?’, the super cute belly tops that aren’t made over a size 14 as designers don’t want an actual belly ruining their vision & swimwear telling us to love our curves whilst ‘controlling’ the more offensive ones.

IMG_2814.JPGNow I don’t have the greatest relationship with my body at the moment but it’s not because my wayward curves are giving me grief. I have beef with my body over the way it works.

I have numerous diagnoses that can cause me to curse my body. The hypermobility disorder that has left me with weird shaped knees and a constantly puffy ankle. The same disorder that causes crippling pain and weird skin tags that seem to appear from nowhere. I have fibromyalgia that makes my body feel heavier than even my inflated BMI could suggest. I’m so unable to regulate my temperature that the same body that shiverered under many layers in winter is now saturated with sweat for much of the time. My heavily follicular ovaries mean that my face nowadays is covered in peach fuzz that stops my contour being on fleek. My pain and fatigue make regular grooming ridiculously hard work so I’m prone to skin irritations, ingrowing toenails & other unpleasant stuff. The asthma I’ve had since childhood can make breathing on a summer day feel like a record breaking attempt as the warm air, pollution and pollen combine to irritate my lungs. My pale skin burns easily or turns into blotchy freckles so I need an annual mortgage extension to buy sun cream. My weakened ankles mean I can’t wear pretty heels whereas my weak arches grumble at flimsy sandals. I have a LOT of reasons to fall out with my body.

Oh, and I’m overweight. I’m about a size 18 or 20, I weigh as much as a rugby right back & my boobs are a cumbersome 36GG. I’m not always bothered by that though, in fact when I’m in the privacy of my own room, looking in the mirror I think I look quite nice & my husband seems to have no complaints; yet when it gets hotter & ‘body beautiful’ is plastered everywhere & I hear the whispers on the school run or the cruel jeer of a stranger it hurts me. The clothing designed to ‘control’ my body from somehow shaming me, hurts me. Then I wonder if it’s size is yet another thing to add to the list of ‘why I hate my body’?

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.