Pain Management Fiasco

IMG_3822Let’s start with the fact that I know about pain. I know about pain more than your average person. I wrote my dissertation on total pain & how emotional stress & anxiety can manifest in actual pain. I devoted my nursing career to treating people in pain; I could unravel complex pain & get people comfortable. That’s what I did.

Then I got ill. I was given two separate diagnoses that explained the pain now coursing through my body: I had hypermobility type Ehlers Danlos Syndrome & fibromyalgia.

Over the last few months I have studied each disease, comparing the articles written against my own pain, my own experiences. I am starting to learn the difference between the pain caused by hyperextended joints & the heavy, all over pain caused by fibromyalgia. The fibro gets worse when I’m tired or down, the EDS can hit at anytime when my bendy joints go their own way.

So, yeah, I’m quite good at understanding my pain.

What I do need is help to manage the constant injuries my EDS cause. And because I need this I was pleased to be referred to Pain Management Solutions.

Pain Management Solutions was a private service that is bought in by the NHS to provide a holistic approach to pain management. I’d heard good things, I was keen to benefit from this approach. My first appointment seemed promising, they understood what I needed & assured me that they’d deliver it. They said I didn’t need to chase hospital physiotherapy as they would have that covered.

My first few appointments were cancelled by then which was frustrating but I was prepared to wait. I went again in July & spent the appointment mostly going over the stuff I’d answered in my initial appointment. The same assurances were given about physio & we did a little bit about meditation & relaxation. I came away from that appointment with clear goals, practicing meditation & focussing on pacing activities. It was a small help but no amount of meditation will stop subluxations and swollen tendons.

My next few appointments were cancelled. I was getting frustrated. I went all summer without an appointment. I paid for some private osteopathy but in all honesty the amount I needed wasn’t affordable. I looked forward to my appointment today.

Last night I had a fall. My knee gave way on the way back from the toilet. I rolled my ankle, twisted my knee & hurt my back & shoulder as I landed on the floor. My husband picked me up, gave my pain relief & tried to get me to rest. I didn’t sleep much. I was in so much pain but I got myself up & to the surgery for my pain clinic as it’s important & I WANT to do better.

It was a fiasco. I was sat in the waiting room for 29 minutes before the clinician phoned me asking where I was: “I’m in the waiting room”, I should have felt lucky as whilst she apologised to me about the mix up it transpires the appointment before me was still sat in the waiting room.

The clinician asked me about relaxation techniques & whether I needed more help. I explained how I was doing it, how it was helping. She asked about my goals (again) & I explained what I was doing to try & adjust to disabled life & how I was rating chores (red, yellow, green) & deciding what to do based on where my pain was.

Once again I said my main aim was understanding how to manage injury. Advice on splinting, on exercises, on strengthening. The next part had me gobsmacked. She told me that I wasn’t suffering actual injuries & that if I were I would/should be going to the GP with each injury. She said my pain was just an EDS ‘flare’. She seemed to be confusing EDS with fibromyalgia. I was speechless.

A five minute mime then followed about how to do the washing up with little breaks including the suggestion that I tell the pain “No, go away, you aren’t in control now.”

The clinician looked at me afterwards perhaps expecting applause & said I looked teary. She asked if I was ok. When I said I was just tired in pain she decided we should ‘leave it there’.

How much did that waste of time cost the PCT? How many people are pinning their hopes on these clinics just to be treated like idiots? How much worse do people get waiting for the actual help that they need?

I have no words. Well, I have this rant but I have no idea what I do from here.

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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’?

Anger

It’s not the most creative of titles I know but then I’m not feeling creative, I’m feeling angry.

If you’ve followed me vaguely you’ll know that I’ve had a tricky year. I know there are few who would list 2016 as a good vintage but for me it has been the worst.

It actually makes me angry that I feel like that (see? Anger, that’s a theme here) as 2016 was the year I married the man of my dreams, my soulmate. We are talking head over heels, thunderbolt, takes my breath away love when we talk about this guy. He’s my world. He’s everything I thought I’d never have whilst being everything I ever wanted. And don’t get me wrong the marriage hasn’t let me down, my fairytale hasn’t burst it’s more that my fairytale ending seems to have taken place in some kind of dystopian nightmare where everything has a price.

See, I haven’t had the smoothest of lives; don’t get me wrong it hasn’t been the worst either but was definitely more soap opera fodder than the stuff of fairy tales.

I grew up at the less affluent end of Thatcher’s Britain, I lost my dad to suicide when I was 12, I then lost all of my friends as they felt grief wasn’t in the Just Seventeen list of in things, go figure. My first ‘love’ abused me physically & mentally. I dropped out of university because of crippling agoraphobia & was so hapless in my early 20’s that when I saw Bridget Jones in the cinema my companion exclaimed loudly that the drunken, pitiful Bridget in the opening sequence was me.

I had a fairytale wedding when I was 26, complete with glitter & candlelight but lacking a Prince Charming. My husband was controlling, belittling & violent. Three years after getting a marriage certificate I got a non-molestation order.

The acrimony of my divorce led to further struggles with my mental health and my post separation resurrection as a strong, independent woman with a well paid job (my dream job as a Clinical Nurse Specialist in Palliative Care no less) was short lived. I had a ‘breakdown’ & was having to raise a small child on very little money (my time on ESA is well documented in the things I’ve written so I’ll spare the details now but let’s just say it was bleak).

Despite the bleakness I fought on. I’d hung onto the strong bit of my self description. I put myself through therapy, I followed treatments, I was able to be a damned good mother & somehow, miraculously I often think, I met and wooed the man of my dreams.

Our path to the aisle wasn’t smooth but by the time we got betrothed things were good. We had a perfect little love nest, beautiful children, both had rewarding jobs, my mental health seemed well treated. All was well.

Well, most was well. I’ve always been a sickly person. An asthmatic baby, accident prone, patient zero in many an outbreak of lurgy and the creaky, sore body of an old lady. It was almost a joke however, that I needed new lungs, new knees, new ankles (I dream of new ankles), my sicklyness was a part of me. It was problematic but not overwhelmingly so. Until last winter that is.

Again, I’ve documented my health in a fair bit of detail on here & elsewhere but suffice to say I am now disabled. I have Ehlers Danlos Syndrome (a diagnosis I state as it’s the one that the arguing doctors have mentioned the most, though it’s still not set in stone) which causes me a lot of pain & frequent injury to all of my joints. The last few months have been hard. I’ve had battles to get my pain under control; I’m not talking about moderate pain here either but excruciating pain all over my body, all day everyday. Battled I have though. I’ve taken on doctors, specialists, pharmacists and my own demons to get to the point where my pain is a bit better managed (science geeks I now wear a buprenorphine patch which gives me the equivalent of 5mg morphine every hour). I did it I thought! And just in time to actually enjoy Christmas. I’m Mrs Claus yet the joy of last Christmas was diminished somewhat as I was battling pneumonia and, with hindsight, the beginning of the EDS worsening.

The thing is life isn’t that straightforward, Ehlers Danlos certainly isn’t. Since my background pain has been well controlled this last fortnight I’ve fallen 4 times, put my left knee out of place, twisted my back/ribs, subluxed my right hip & have a very bent & painful little finger. I’m not used to being disabled. I was a hyperactive child, a teenage that would dance for hours, a nurse that would race around wards spinning a thousand metaphorical plates. I can’t do pacing and learning limits. And I’m angry that I have to.

I am awaiting an appeal date to fight the DWP for Personal Independance Payment and I’m furious that I’m having to I’m angry about the stress it’s caused me & my husband. I’m angry about the treatments I can’t afford & the humiliation I’ve had to endure. I’m so done with the whole thing that I don’t have the energy to describe just how angry I am.

To top all of that off today is December 1st. A day that any christmasophile looks forward to. My tree is up (thanks to my sister), I have an elaborate advent calendar (thanks to my husband) & I was determined to begin enjoying my first Christmas on wheels. Except I’m ill. And I can’t.

I have some bug that is making me sick. Throwing up causes me excruciating back & neck pain due to my over bendy joints not having a scrap of self control & so haven’t eaten in 36 hours, I’ve not drank in about 18 hours. I feel weak, tired & sore. I’m surmising that ‘normal’ illness is yet another thing that gets harder when you’re disabled. And I’m angry about it. I’ve had enough of it. Enough of being strong, enough of fighting, enough of pain. I’m angry that I can’t get tucked up & taken care of. I’m angry that this is happening.

I was supposed to be getting my happy ever after. I’m not saying I deserved it but I do feel that I’d earned it. This isn’t it. As in love as I am & as happy as my husband makes me this isn’t the way I thought things would be.

I’m angry. I’m angry with God, with life, with the world. Most of all I’m angry with me that I ever thought I’d get the fairytale. Silly, silly Dolly.

 

 

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.