A Personal Best – #RaceForLife

This started as a Facebook post to tell people what hairbrained scheme I’d signed up for next, but I had way more to explain than I could stick on a simple post, so let me elaborate…

I’m not going to bang on about it, but if you fancy having a giggle at me looking like pink covered death, I’m running the Worthing Race for Life next Sunday. Ok, not exactly running, I’m propelling in a wheelchair. Taking part is not only to support Cancer Research UK, but is a middle finger up to the stereotype of being ill.

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This morning, my mum hesitantly passed on a message & conversation she’d had with a local physio who called on Friday. It seems that pain management had referred me to the home visit physio who called to book in to see me (yay!). My mum explained that I wasn’t able to speak to her because I was at work to which the response was “well if she’s healthy enough to work, why has she been referred to me?”. People deal with their disability & chronic pain in different ways. Some can’t work & I don’t judge them. I do work as a distraction technique which works because I love my job (despite what I tell you after 4 hours of year 8). It takes a team of people to get me there & my health suffers as a consequence of pushing too hard, but there is a twisted vision of disability in the UK right now:

If you’re disabled, you should work. “Don’t expect us to lift you out of poverty”
If you work, you can’t be disabled because you’re health enough to work.

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Shock horror! People with disabilities are all different & we cope by being adaptive and imaginative (Cue my speech to text / video marking system). So yeah, this race is a fair bit about pushing my limits. One thing I won’t do is slide into this victim / saviour complex that health professionals use where I am eternally grateful that they deemed to lay their hands on me 😒. So far GP & OT have been amazing. Other local team are patchy at best. They’ve accepted defeat with cardiology and sent me to UCLH, next is to get them to do the same for Rheumatology.

So why do I need physio if I’m well enough to work?

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I’ve been in pain a long time. Like PAIN pain? There were signs early on. I’m too stubborn to give in. Mr Geek deserves a medal. Research is important for all conditions.

Right now, I’m in a lot of pain. My hip subluxes daily, my pelvis dislocates as much, my knees & shoulders dislocate more often than I’d like, my back is a weird shape as the discs degenerate, my hands vary from ok to weird bendy claws. I sound like a bowl of rice crispies! I take painkillers, but my body is resistant to their effects, so the dosage I need makes my head fuzzy. The number of times my lower back & SI have moved has damaged the nerves to an extent where I can’t feel my feet anymore & on occasions go full ‘floppy leg’. Nerve function also interferes with continence. Combined with stretchy insides, this requires some adapting.

I’ve made peace with things falling apart & have created my own rehab program to maximise on the bits that do work in my upper body & core which involves daily squeezing of muscles to get blood flowing, massage from Mr Geek, & pushing myself to just bloody well get on with being an adult (between naps) and being involved in wheelchair racing. I still find it hilarious that I’d call it racing at the speed I go, but I’m working on stamina not speed. An average time for a new runner for a 5k is 25mins, I’m currently at 45mins (Although this is based on how far I’ve pushed as I’ve not gone full distance yet). What I need from this sport is the muscle function to stop my shoulders from popping out as my muscles now do much of the work that the ligaments & tendons should do. What I get as I push myself slowly & lopsidedly around a track in a funny looking chair is shouts of encouragement, smiles, normalcy, and fresh air, all of which do me the world of good. Today was hard & my right shoulder was not playing ball. I fought my way through training and subsequently created a mega pain flare which meant spending the evening in a morphine haze, strapped to a tens machine, and reduced to non-verbal communication via whimpers & tweeting. It was worth it though. It wanted me to stay in bed, but I didn’t.  I may have been in an awful pissy mood, but I got out there & put my big girl pants on. Who needs legs when you have a lightweight chair?

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Thirty years ago (age 6) I had clicky knees and my teacher called my mum into school as she was concerned about my hypochondria. I was always sporting a support bandage for a sprain, or crying during PE because my ankles / knees / hips hurt. I was tall & skinny and covered in bruises from falling, or kneeling, or who knows. I loved riding my bike, but 10 minutes into an off road ride I’d be exhausted & my knees would hurt. I was a weak child. I wet the bed – this was never to be discussed outside of the house (to my knowledge I don’t think we even told the dr). We tried everything, but it continued way past an age where you’d want to admit to it. (I’ve not even blogged about it before, but it’s time to put that piece of the puzzle into place).

Twenty years ago (age 16) I didn’t know that everyone else didn’t ache like hell by bedtime. I certainly knew that it wasn’t normal to find yourself desperate to pee and not hold it. I couldn’t stay awake as long as everyone else who could party all night. I was miserable. We were teenagers, so walked everywhere and my hips would scream & getting to hot would lead to being so dizzy I could hear my heartbeat whooping past my ears. Consequently, I was told it was in my head & given antidepressants. It became a self-fulfilling prophecy with me believing that the physical pain was in my head. For a number of years I self harmed through traditional means, risky behaviour, and poisonous relationships.

Ten years ago (Age 24) I had two tiny people who arrived early, a c-section scar that tore and damaged the nerves in my stomach, shins of a 10 year old (bruised) and was in a whole lot of pain with my back, hips & knees. I had migraines & after getting really run down with babies, university, & working evenings at the theatre, I caught viral meningitis. I used sticks & a basic folding wheelchair on and off when my back was particularly bad. Physio tried to reposition my spine & damaged my pelvis permanently. Each injury was looked at in isolation & we had no idea why I had such bad luck with my joints.

A year ago I was in daily pain, taking regular painkillers and using sticks to move around most days. I had no idea why I was in so much pain & my joints were so unstable. Picking up.my laptop bag, I could feel my elbow & wrist separating, so Mr Geek bought me a bag on wheels. I was exhausted & aside from a diagnosis of osteoarthritis, was seeking help to understand my body. My GP was reluctant, but gave in when I begged for something more than just opiates.

8 months ago, I could barely move out of my wheelchair or keep hold of a meal & had trouble swallowing. I lost weight & we wondered how bad this would get. I saw a specialist in connective tissue disorders who put all the puzzle pieces together with a diagnosis of Ehlers Danlos Syndrome type 3 (Hypermobility) with a type 1 crossover  (Classical). That diagnosis changed everything. Ok, it’s a diagnosis without a cure, but it’s one that explains to A&E why I’m there, it’s one that paved a way to pain management, it gave me a foundation to work from. The pain was real & now I knew why.

Now I’m going to propel myself 5k in a paralympic style racing chair (lent by the lovely Harriers Team). Mr Geek since we first met has been my relentless supporter, physio, carer, chef, comedian. He quite literally picks me up when I fall down. He has facilitated me fighting my own genetics more than any doctor or physio. He’s put a fair amount of his life on hold for me. This probably isn’t the time to get into why Mr Geek isn’t allowed to run alongside me (men get breast cancer too & yet are banned from this event)., but he’ll be there at the finish line as a real reason to make the full distance. I’m by no means better, but we have so much more of an understanding of my body & how it’s likely to function. Knowledge is power.

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So, I’m partially doing this as a thank you for believing that I can fight this in my own adapted way & also to support someone very special who’s kicking the big C in its balls. Cancer Research could save thousands of lives and countless more family & friends who are affected.
When the consultants finally get around to working together instead of intellectual willy waving, there is hope for a treatment for Ehlers-Danlos Syndrome. Until then, I shall wobble my way along the track supporting & representing those who can’t.

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Dis-or-tommy-whatnow?

Some idiot decided that as her appointment with the consultant professor in London wasn’t until 5.30pm, she’d go into work & just miss the last lesson whilst we drove to the appointment  (2 1/2 hours), despite barely coping with a standard day at work.
That idiot was me.

As I got into the car, Mr Geek handed me the dreaded letter from the DWP that based on their own published waiting times, we hadn’t expected to arrive until March! My PIP interview is on 29th December. I’m not sure whether this quick turn around is good, bad, or just that they’re quicker here. Deep breaths shall be taken, because there’s bugger all point in fretting.

Last time we headed to London, it was horrific, so this time Mr Geek decided to drive. We set the heated seat up, surrounded me with bottles of water & gluten free snacks, and reclined the seat to try to take some of the pressure off of my back. These are the kind of things that you’d do for a properly long journey, not 90 miles up the motorway!  To be fair, this did a fair bit to help, although there were a few yelps as various joints went from aching to lightening bolt. Despite this, I managed to spend a decent percentage of the journey doing my standard post school nap (I’ve reverted to pre-school levels of sleep). I even managed to eat a gluten free mince pie, which if you’re gluten free or FODMAPING, get thee to a Tesco and buy a pack – they’re yum!

We even managed a rather sleepy car selfie.

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My appointment was with a professor for a referral for POTS  (Postural Orthostatic Tachycardia Syndrome), which is where your heart rate rises abnormally on standing. It’s all linked to the Ehlers-Danlos and is the referral that I’ve been least concerned about. It’s certainly not as bad a some people’s and right now my inability to eat without my stomach imploding and the slow transit that makes Royal  Mail second class delivery look speedy is having more of a daily impact. Or not, so to speak.

I’ve still been vaguely worried, as like with all medical appointments I’m always waiting for the “it’s all in your head” conversation that I’ve had too many times. Therefore as a coping strategy, I spent a week gathering and analysing data and used this to go armed with printouts of my own annotated readings. Complete with graphs 😉

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As we got closer, I could feel the adrenalin kick in (which is not what you want for a heart rate appointment! ), so maybe not so chilled about the whole thing.

London is very much removed from my quiet little village life and seems massive!

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St Mary’s Hospital is slap bang in the middle of London surrounded by proper red double deckers and black cabs. What struck me most was the stark difference between the NHS wings and the private wing. As a bit of a liberal leftie, I’m not particularly proud of going private, but as a person with health insurance who’s in a lot of pain, my guilt was softened somewhat knowing that I was paying to see someone who knows EDS and POTS inside out with whom I stand a chance of improving.

We arrived at the appointment nervous and not really knowing what to expect. The professor took lots of details about me & family history, including adding some interesting facts about a famous professor who shared my maiden name who had taught him the chemical link between dock leaves and nettles (wtf?), then asked about my symptoms and told me he didn’t need the printouts of the heartrates I’d  devoted hours to (Cue grumpy face). Next up, he got Mr Geek to help me up to the examining table and listened to my stomach (points for anyone telling me why this might be – I’m pretty sure my heart is higher up) & then chatted about random things like me being allergic to penicillin and that it had been discovered in that same hospital, and that my cardigan was a good shade of purple… Whilst he did this he took my blood pressure, then got me to sit up and did the same, then finally Mr Geek helped me to my feet and he did it again then told me to sit down quickly! Good job too as I lasted approximately 25 seconds before I had full tunnel vision palpation going to faint face. I suppose if your symptoms are going to play up, in front of the consultant is not a bad place to do it. In fact we went whole hog with flushed face and sudden overheating and clamminess!

After I’d laid down for a bit fanning myself like an overly dramatic Edwardian lady who’d just been flashed a bit of Mr Darcy,  Mr Geek got me back into my chair and we discussed the next steps. The Prof. was impressed that I was still working full time and asked if I could try working remotely as I was clearly disabled (adding that he didn’t wish to cause offence. Bless him! I wasn’t offended. The wheelchair sort of gives away how knackered I am) … visions of trying to teach via Skype. Probably not tbh, so we agreed that at least looking at a change of career is worthwhile. He made noises about me being very symptomatic and that he wants me to come in overnight after Christmas for more tests and identify suitable drugs to control the symptoms. So, positive in that it’s not all in my head & he has an action plan, not so positive in yet another person questioning my sanity over trying to keep teaching.

In the words of Matt from Game On – I do it because I’m a double hard bastard.

Next up was visiting my friend who has been living in the Lindo Wing for the past fortnight. How lucky that the appointment for me was in the same hospital!  Ok, we both have EDS and autonomic issues, so considering the lack of consultants, maybe not such a coincidence. But anyway, I’d been looking forward to seeing her and had got ridiculously excited when she’d told me it was the same hospital and she was up for visitors!

The hospital is roughly the size of the town I live in and we invariably got utterly lost. This didn’t dent our sense of humour though…

Should I try it?

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Then we giggled like schoolchildren. ..

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Realising that it was now 8pm and she and I were both knackered, we headed back to the car and in search of dinner. Mr Geek did the ultimate in chivalry and gave up going out for dinner, instead stopping at services so we could get Japanese food (which is delightfully free from gluten) and still get home before 11. Sadly, most places were shut when we arrived, so Mr Geek still got his burrito but I settled for mild curry. Fare thee well intestines…

The last leg home was quiet as Mr Geek focused on driving on a caffeine deficit and I tapped away at this blog from under my blanket with the first set of my evening painkillers slowly warming me and melting away the sharpest top layer of the pain.

I know it’s just the beginning, but today was a yes your autonomic system is buggered which leads on to this is how we fix it. Despite being the nuttiest professor I’ve ever met, I feel like I’m in the safest possible hands. We know this because despite being nearly 100 miles from home, it’s the first time in living memory I’ve agreed to stay in hospital – I even fought to go home when my ovary exploded. I didn’t win, but I still argued.

It’s not all in my head! Yay!

The Machine That Goes BING!

Today was ‘doctors day’ with three different appointments all booked throughout the day. This meant taking the day off from work, but they were very kind to put it all in on one day to minimise disruption.

We started off with some blood letting, for no other apparent reason than I haven’t had a random blood test since June and let’s cause some new bruising. Hey, at least this time I’ll know where the bruise came from…

The nurse was a bit confused as to why I was there and asked if this was a diabetic review. Err no? She mumbled something about it looking like it because of the types of tests that the doctor had asked for. I suggested that it was probably because of trying to rule things out from me being dizzy. “Are you ok with needles?”. “Yep, I’ll just wish you luck finding a vein in there”. And so it came to pass that another medical professional spent 10 minutes slapping my arm to try to get to a vein. Eventually, were were in and it dripped out into those tiny tubes for some lucky soul to gaze at.

Next came my mystery appointment with the Registrar after the physio had a panic at the GPs.

I have to give the guy his due – he was fantastic. He listened, he looked through my notes and he winced when I showed him the photos on my mindmap. He asked if they were all me. I said yes & bent my thumb behind my hand to show him. “urgh!… Oh god, sorry. That wasn’t very professional.”. I assured him that it was fine. And yes, it’s ok to use the word ‘abnormal’. I’m pretty sure my hands aren’t mean to do that.

After looking at my notes, he agreed that the weight loss was indeed down to me just being stressed and dragging myself about despite more pain and who wants to eat tonnes when you have reflux anyway? He also said that he wasn’t an expert on EDS – instant win. I’d way prefer you to accept your limits than try to be an omnipotent GP with me the lowly patient.

We discussed whether the gabapentin was a goer, and decided that it was messing with my head and stomach, so he added another pill to the daily doses for the reflux and upped the gabapentin. Apparently the idea is to hit a fine balance between being able to tolerate the pain and being incoherent. Just to add insult to injury, he also suggested a flu jab. Before I could smile and nod (and put it on the ‘to do’ list), it was there and I’d been stabbed.Yay, no flu for me 🙂

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I, on the other hand have added the TENS machine back into the mix to see if I can try something that isn’t mind bendingly narcotic. I bought some new pads and plugged myself in. It basically feels like a massage from bees, but is nicely distracting as long as I have it on the setting which switches around every 10 seconds. It’s a good way to get through the final few hours before the next set of drugs.

We looked at the timescales for the referral to musculoskeletal people at the hospital and he raised eyebrows about not hearing from them yet. We agreed that they’d probably been chased enough, but we’ll give it another 2 weeks and if I’m still waiting after half term, then he’ll light a fire under them. Apparently this will also apply if I do hear and the appointment is some point after I retire.  So, now we wait. I have painkillers. referrals have been made to everyone. And everyone is awaiting a message from the heavens from Rheumatology.

The final appointment of the day was an ECG. Again, because of the dizziness on standing. The Registrar contradicted the GP I saw earlier in the week when we talked about this saying that dizziness on standing would usually subside if it was blood pressure related. Whereas I am ok on standing, but it creeps up on me after a while and doesn’t fade. Instead we go all tunnel vision and dark until I sit down. Apparently, the ECG will rule out anything horrendous, and is a gateway to asking for a tilt table test. Boxes must be ticked.

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Later on, whilst sending back student work from home (I love Google Classroom – they can’t escape me even when I’m hooked up to machines!), the hospital physio rang back. It’s been agreed that I’m too complex for them and I need to go to the Pain Management Team. So… the physio has referred me to my GP who referred me to the Physio, to refer me to the Pain Management Team. I’m reasonably sure that wouldn’t make sense even off the painkillers!

Help Needed From Other Spoonies :)

I’m all about the blogging this weekend it seems.

In fact, this is actually a request for help from other spoonies rather than the standard ‘this is what’s happening’ type blog.

The medical profession scares me, mainly from the previous visits to GPs and consultants  who have used the actual phrases “man up” and “well, what do you want me to do about it?”. I currently have a brilliant GP, but live in fear of trying to explain what’s going on with my body to another doctor or physio, or worse still a PIP assessor. (I’m far too scared to apply for a blue badge despite using the chair daily in case we return to “it’s all in your head”).

So, as a backup (and to stop medical people asking me to remember my whole medical history in a 10 minute appointment and do tricks like a performing monkey), I’ve been creating a mind map of all the dots I’ve been joining up.

If nothing else, it might help my friends understand a bit better what it is and what hurts.

Anyway, I’d really appreciate some input from other EDSers from a “is this a good idea?”, “have I missed anything?”, “have I genuinely lost the plot?” perspective!

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