Don’t Touch My Wheelchair

There’s been a lot going on recently and within those busy moments there are flashes of white hot fight or flight temper. As a rule, the flash remains in my head & I either bury it, or explain calmly after, but all flashes have a common theme: don’t touch my chair.

For ease of reading:
I have Ehlers-Danlos Syndrome; a genetic condition which affects connective tissues throughout my body making them stretchier than they should be (this includes tendons, ligaments, skin, muscle, internal organs). I dislocate or sublux (partially dislocate) daily and it hurts. EDS comes with the extra fun of IBS (irritable bowel), POTS (Postural Orthostatic Tachycardia), and for me, dysphagia (difficulty swallowing). Because of the pain, hip & pelvis subluxations, and fainting I use a wheelchair pretty much full time aside from trips to the loo upstairs where I use crutches to drag myself the full exciting 5m.

So, my chair is my mobility, it’s my pain relief, it’s my route to remaining conscious! So why the anger? May I give this in a few formal requests? (I’m going to anyway, that was more to allow for a personified narrative – I could almost pass my SATS with that paragraph…)

Don’t push my chair without asking
Sam, my ever understanding lady summed this up in words even the 7 year old demanding to push me around like an oversized doll understood.
“You don’t push someone’s wheelchair unless they ask you to. You wouldn’t let someone puck you up without asking would you? It’s just rude.”
I make a habit of having my handles on the chair tucked away because I hate it.

Firstly, it makes me feel very vulnerable when someone physically moves me either unexpectedly or against my will.
Secondly, I generally have my hands on the rims & if you move me forwards without warning, I may still be gripping and you’ll have a dislocated shoulder, elbow, or wrist on your conscience.

Mr Geek forgot himself today and did just this. He whizzed me up a ramp onto the train without warning & faced a very stern don’t touch my bloody chair conversation. Mainly because I was tired, in pain, and having been in ultra-alert mummy in London mode all day couldn’t tell who was pushing and panicked.

Don’t  pin my pain on the aid that relieves it
My pain management team appear to be at a professional crossroads. If they were married you would probably suggest seeing a counsellor. Instead, they played a game of professional ping pong with my appointment which as a professional, I found deeply unsettling.
One of the ladies is a pain specialist. She is quiet, encourages my progress (albeit slow), advocates pacing and patience.  The other is a lead physio who is very much the opposite. She is an advocate of movement, and pushing through limits, and overcoming mental barriers. Personally, I find her overbearing and generally cannot get a word in edgeways.

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When I saw them this week I happened to be circling the higher eschalons of the pain scale. I find it difficult to articulate my needs when I’m breathing through it. I’d managed to explain jy fears about loss of sensation (boiling water on the foot) which was taken seriously, and lack of sexual function which was dealt with in true British fashion.

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Whilst demonstrating a move to help me open up my pelvis & lower back, she noticed that I was uncomfortable in the chair. And here it came:
We must get you out of that chair. Being sat in that is what is making your back hurt!” Now, to an extent I do agree. Being sat still watching a loud person wave their legs in the air for 45 mins makes your joints seize up. Anatomically, the seated position does put pressure on your lower spine. So I asked her how we would work on that.
What’s about standing up at work?”
We’re going with a no there; I’ve already fainted in my classroom twice this term despite being sat in my wheelchair  and that’s scary for both me and the kids. In fact, it’s what prompted me to get the reclining back for the powerchair.
Can’t you just walk around at home?”
I’d love to! It’s my ultimate goal to abandon the chair in the house, but standing feels like there’s glass in my hips & walking with crutches not only causes pain (and tears), but runs the very real risk of a fall as I can’t feel my feet & have to really focus on where I’m putting my legs.
OK then, but we need you to open up that area, so lying down flat as much as possible with lots of stretching”
Again, unlikely at work (Just picture that classroom scene!), but doable at home… but stretch as far as possible?!
Earlier, she’d been quite offended when I told them that my Stanmore referral was rejected due to waiting lists & I felt left in limbo. She scribbled  furiously whilst telling me sharply that she dealt with plenty of Hypermobility & didn’t need London telling us what to do (🚨🔔AWOOOGA! Alarm Bells!🔔🚨).

This all sounds like a cop out, but I know my body & that pain in my hips & back isn’t from the chair (unless it can time travel back to 2004 when my 1st disc went). I also know that pain is not gain with EDS, and when I “push through”, I end up damaging something.  I do push myself physically by hauling my arse to wheelchair racing & swimming each week. I use the manual chair when I’m not at work, self propelling to the point of exhaustion & audibly clicking shoulders.

I’m doing my best, but sitting allows me to function. The chair damn well stays. I will not be confined to bed & stop working so I can point my toes again.

If at all possible, I’d like to enter the building the same way as everyone else, not via an extra 1/4 mile walk and via the bins.

Part of our lovely day out in London was dinner (we had hoped it would be celebratory, but we won’t hear about vague thing we cant talk about yet until tomorrow or Monday). As a special treat, we’d booked a table at Marco Pierre White’s Italian restaurant on the South Bank. I was beside myself with excitement as I love some of the TV stuff he does.
The entrance was beautiful with just 8 minor issues – all of them steps. The solution was to walk to the back of the hotel where there is a ramp.

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And bins. And no clue on how to get in.

Once in, it was just bliss! The staff were helpful & made every effort to accommodate us. And the food. Heaven! I utterly second MP’S recommendation of the bolognaise pizza!

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If I need help, look where you’re going!
I started writing this blog post about 12.30 am & it’s now 3.15am. Why aren’t I asleep?! Well, earlier Mr Geek helped me down a curb by easing me down backwards, misjudged the height, didn’t see the hold in the road & the chair dropped down the height of the curb plus hole.

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As my wheel touched down, my left hip popped out (unusual, it’s usually my right side) & I yelped. And swore. Then used the chair to wiggle it back in & had a little cry. Painkillers were duly administered & I assured poor Mr Geek that it really wasn’t his fault. Yes, he’s a bit clumsy & cakhanded, but London appears to have not mastered the art of the drop curb yet…

… and where they have included a drop curb, Southwark  Council has a funny idea of the best place to situate recycling bins.

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12 hours and 3 doses of dihydrocodeine  & oramorph later and I still have knives in my hip and sleep arrives in 10 minute naps until the muscles relax & go back into spasm & wake me up again.

Other quick & easy ones.
Please don’t move my chair out of reach if I’m on the sofa. Ffs.

No you can’t ‘have a go in it’

Please don’t suggest adaptations, then get huffy when I say no. I know you’re trying to help, but I’ve got it set up my way and tyres “just” 1/4 inch thicker will rub against my skin.

Also, don’t touch my chair.

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Electric Dreams

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I’m an 80s baby, and as such will always sing these words with a muffled hum for the rest of the lyrics and an image of the film playing in my head. But why the bog title? Well, Sunday night is brought to you courtesy of the TENS machine (again). Despite all attempts to have a restful day today after yesterday’s escapades, my left shoulder took offense and tried to leave home. It’s usually my right one that pops out, but there’s nothing like a surprise sublux to end your weekend. EDS likes to keep us on our toes. As is usual for recent weeks, dihydrocodeine has little to no effect above standard baseline pain, & oramorph is barely touching it. We tried massage to help bring down the muscle spasms that are creating almighty knots & the end effect of that was Mr Geek hurting his fingers. Ice would reduce the swelling, but make the muscle knots worse, & heat vice versa, so TENS is the next option in the toolkit.

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One pad on a bicep, one on tricep from the grey channel, then one along the shoulder tendon & one just inside the shoulder blade (where the knots are) for the white channel. The pain Management team have suggested a bespoke setting of 100hz frequency & 200uS pulse width for 90 minutes at a time. As a general rule, the following settings are worth having programmed into your machine (all using 170 – 200uS depending on what feels right for you):

80 to 120Hz-acute pain

35-50Hz-muscle stimulation

2 to 10Hz – chronic pain

I’m using the acute pain setting because I’m using it for breakthrough pain where I’ve reached a decent 8 on my pain scale. This is also known as the ‘Fuck me that hurts. Hand over the drugs.” pain stage. On a scale of 1-10 this renders me incapable of doing much else than asking Mr Geek to rub my [insert body part] and clock watching for dosage times. With a decent TENS session and break through drugs, I can usually bring the pain down by 2 levels. This means I’m currently sat at “Not sleeping, but at least I’m not screaming.” level. Don’t look for pain scale facial expressions here – 9 & 10 get scrunchy faces & farmyard noises. That’s it. I’m a bloody zen master at breathing away pain facially.

This is all very irritating after having such a positive day yesterday. To help strengthen my upper body, I’ve been training (and I use that word as loosely as my joints) with a local wheelchair racing club for a few weeks. I’m fully aware that my lower half is past the point of no return. I have little feeling left in my feet & the lady areas are steadily going numb (That’s a whole other post) – and yes, I’ve flagged this up with more doctors than you can shake a referral at, but the regular limb detachment has been prioritised. So, I’m determined not to allow my arms the same option of defeat as my legs, and as such am building up the muscles to do the work of the crapped out tendons & ligaments.
Cue me being lifted into a paralympic style racing chair twice per week, strapped in and pretending that this doesn’t hurt in the slightest.
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The coach is lovely & works on the basis that we know our bodies, so you go to your own comfort level & adapt the chair, pushing style, & seating position to however your body works. As it turns out, mine needs to lean forward to take the pressure off my back & put less pressure on my shoulders, so we’re tweaking the club’s chair that they’re letting me use each session to get it right. For me, pushing down on a flat surface with no inclines or cambers, means that I can self propel. My lower spine still shifts every session, my SI pops as I get out, my elbows still give out if I get pushing wrong & my shoulders will not accept arms lifting up or out, but I’m finding my style. It’s slow, it’s slightly wonky, but physio isn’t meant to be easy.

Pros:
– I’m building muscle on my arms & core
– I’m outside twice a week
– It’s social
– I have a whole hour where I don’t need help
– feeling of freedom. Like running.
– Massive aerobic high
– Long term – possibly improving POTS

Cons
– Extra bruising from wheel guards
– Pulled shoulders from pushing too hard too soon
– Pulled elbows as biceps get tighter
– skin worn off on fingers (forgot EDS skin & friction doesn’t mix well. Cure: cohesive bandage wrapped over gloves)
– Getting cold outside (Then cramp!)

Ultimately, if it allows me to maintain where I am right now without any more spirals down, I’ll be happy. This is the first on land exercise that hasn’t injured me substantially more! And Mrs Physio will be super impressed at my efforts to get off my arse… or at least get my arse moving.

So here’s to my favourite two pain relievers right now: adapted exercise & TENS.

Here’s another table of possible settings with some handy explanations for use from NaturesGate

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Ehlers Danlos Syndrome (EDS) Awareness Month

Awareness comes in many forms. In the case of a rare genetic condition, this can be both positive & negative. Surely, I can hear you say, there’s no such thing as bad publicity. But when it comes to a diagnosis, there can be.

May is Ehlers Danlos Syndrome awareness month & as part of that, here’s my two penneth to add to some already outstanding posts. (Be warned, this is more the ramblings of an insomniac waiting for the next pain relief window!). It’s taken me a few nights to write this as there’s an awful lot to get through!

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Along with a number of other people, I’ve come up against that Rheumatologist who decides that he knows better than the specialist consultants. That one (generally older) doctor who sits back in their chair and regales you with tales of how certain diagnoses are “in fashion” and a private consultation will of course result in a diagnosis because you paid them. They make you doubt your own diagnosis even though you know your body best & they met you 10 minutes ago. At best, these doctors are breaking the hippocratic oath by following their own agenda instead of doing no harm, at worst they’re downright dangerous.

Even in support circles for EDS, there is a disturbing undercurrent of symptom competition – I’m much sicker than you, so you can’t complain. In doing this we don’t help ourselves. Support online is about being there for anyone on this unpleasant spectrum. And understand that we all have our personal pain scales – a 10 for me may be a 7 for you, or conversely, you may be unconscious by my 7.

My own experience of EDS differs from other people’s as we all experience symptoms on a spectrum. I have a diagnosis of EDS type 3 with classical (type 1) crossover because of my weird skin.

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My main daily issues are that my limbs refuse to stay attached to me. EDS itself is not degenerative. However, it appears so as each new dislocation or injury leaves more scar tissue, or joint damage, creating pain & disability. No one entirely understands us, and there is an awful lot of stories of our conditions taking a sudden nose dive after an illness or accident (mine included). During a flying visit from Mrs Gypsytree this weekend, my daft Sherlock said how she remembers coming over for her final goodbye evening whilst I was suffering with viral bronchitis (and coughing ribs out of place). It was shortly after she left for Ireland that I went waaay downhill & she’d wondered if she’d just left me to rest if all this wouldn’t have happened. Oh Sherlock, you don’t control my collagen or genetics. Although it is your fault that I have to argue with Easyjet on a termly basis to come and visit. Because even sticking me in a chair then moving 600 miles away doesn’t let you off the best friend hook.

Having been undiagnosed for over a decade since real chronic pain set in, I caused permanent nerve damage in my pelvis & back through following physio for “normal” people after 2 prolapsed discs, several more bulging discs at multiple levels, & dislocating my pelvis. I pushed through the pain not realising that actually I was making everything worse. Fast forward to now with me as a full time wheelchair user & my pelvis and hip sublux daily, my knees twist and both patella move freely, my ankles turn in and that’s just my lower half! Pain is a thing that just is. Stuff pops out. We put stuff back on. If we didn’t, I’d live in A&E. Why cause more X-rays when we can fix me like Lego?

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It’s not just the bottom half. Most of the time I use a powerchair, but I’m keen on using my lightweight manual around the house & at weekends to build up the strength in my arms. Just by doing this small amount of exercise means that my shoulders may stay where they belong more often! The flip side of propelling is shifting ribs – this morning was a good example of this. Eating breakfast, I realised I couldn’t breathe because of a horrible sharp pain in my sternum. Placing my hand on the outside of my ribcage & pushing, I felt (and heard) a clunk as the rib popped back in. Grim eh?

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Ah the shoulder knots. The hours that Mr Geek has spent digging his thumbs into those stubborn knots that just won’t bugger off… muscle knots do have a special name that slips my mind right now (edit: trigger points). But they are tiny bits of muscle that were tense then forgot to stop being tense and cling onto a bit of lactic acid and become a hard lump. When squeezed, my shoulders feel like they have rice in the muscles and like any muscle that are constantly tense, it aches & causes tension headaches. Again, exercise helps, over-exercise hinders. I’ve not found that fine line yet.

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A perfect example being today. It’s Saturday, the sun is shining, the tank is clean… I woke up knowing we’d planned to take the bikes down along the prom and cycle to the local pool. So double whammy of sunshine and floaty floaty pain relief. I managed the whole thing on minimal pain relief (and a lie in & nap in the morning), then we got home and after dinner BAM! I’m freezing cold & exhausted & my legs feel like I’d actually cycled instead of using Leonardo (my super awesome wheelchair electric bike). I messed up my pacing today, but it was utterly worth it. Check out that wonderful blue sky!

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A nod to my tiny babies in the gif above. We had no idea why my pregnancies were fraught with issues, from SPD to full dislocation, to my waters breaking at 35 weeks, then TinyPants at 32 weeks to the day. You’d think with an extra stretchy body, labour would be easy, but oooh no. 52 hours of making farmyard noises, then an emergency c-section because her massive head was stuck in my wonky pelvis! Then healing from a c-section. Which isn’t meant to go ‘stand up after 6 hours & stitches rip through you like cheesewire’. Also, ow.

It’s all forgotten now though…. ish.

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Oh yeah, and that epidural I screamed for? Didn’t entirely work. I take an awful lot of painkillers these days, & I’m remarkably coherent for someone who maintains sanity with morphine. This was illustrated when an ovarian cyst ruptured one of my ovaries. The surgeon conversation went a bit like this:

Me: arrgh!
Doc: But we’ve given you morphine, you shouldn’t be able to feel that.
Me: but I bloody well can! Are you sure that wasn’t just water?
Doc: No, you clearly can feel that. Weird…
Me: go away until you’re qualified Dougie
Doc: could someone call an anaesthetist?

I feel bad now for being mean, but at the time I was having my rapidly dissolving ovary poked with some force.  Of course they thought it was my appendix at the time, but we’re baffled that it took enough sedatives to chill out a sumo wrestler for me to stop squealing.

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As a general rule, I do try to be a nice person. But like anyone, I have a pain limit. Or rather I have particular pains that drive me more crazy than others. The one that is guaranteed to turn me into a howling banshee is TMJ pain. It’s the jaw joint & muscle. Sometimes it pops out, other times I clench my teeth without realising and the joint pain feels like the worst wisdom teeth pain. It makes all of my molars hurt & causes immense headaches that just sit around my temples and make me with PMT look like Julie Andrews.

It helps to try mindfulness and focus on relaxing the jaw and allowing the muscles to stop being is spasm. The flip side of this is looking less intellectual than Donald Trump.

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It’s not just the jaw that takes a battering. But the teeth & tongue. My teeth have always been crowded at the bottom, and they move on a monthly basis, but I’ve learnt to smile in ways that hide them.
My tongue is particularly hypermobile  (I know fnar fnar), but actually what this means is I can touch my nose with my own tongue (known as the Gorlins sign), but also lose control of it regularly and bite it. I have to think when I chew, not talk!

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My sleep patterns suck. I’m in bed early evening without fail, but blog and read and Facebook and tweet as vwhilst my body is shot, my brain is having a party!
Who knows where these weird sleeping patterns come from, but it’s possible that other linked issues such as POTS or general dysautonomia play a part here.
The bags under my eyes play witness to the fact that I’m unrested!

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And after all that self indulgent whinging about how much EDS sucks, you know what? It’s not all that bad. Most (not all, but remember this is a spectrum), with the right support from a knowledgeable team, and ongoing support from Occupational Therapy and Physiotherapists can live an adjusted but still fun life. Mobility & living aids are just that, they help make life easier and there’s no shame in using them if and when they help. Leonardo (the wheelchair cycle) may be great for getting me out into the open, but he’s also improved my state of mind tenfold.

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I can’t praise my OTs enough. Out of everyone, they’ve looked for solutions & told me that they’d kick my arse if I thought about giving up. We’ve both agreed that my pain levels sky rocket whilst I’m working & level out during the holidays. We’ve also agreed to say bollocks to it and do everything in our power to keep me working. If only for Mr Geek’s sanity. If I was at home, I would drive him up the wall!

They think of him too. After all, he’s the one who gets me up, helps me dress, gets the kids ready, cooks us food, and holds down a senior code genius job at the same time. This week my lovely OT ran through the standard checks with him that he’s ok & are we sure we don’t want a carer. I remain in awe of Jo Southall, a fellow EDSer and trainee OT. Talk about using what you know!

So there it is. A few snippets of my own experience of EDS. Life isn’t over when your joints say it is. There are ways to reduce the degree to which you are disabled, not by changing your body, but by adapting your environment and taking care of your head as well as the strange stretchy housing that your head lives in.

So from me. If you know someone with EDS, give them a gentle hug from me 😉

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Adventures With Roboleg Part 2 – Roboleg is back & this time he has company

It’s been a week since my kneecap decided to fall off because I turned around. That’s a week in a straight splint. A week of me openly swearing at my inability to bend my leg. A week of having a battering ram at the front of my wheelchair. A week of using crutches where possible, but trying to keep the weight off of the left knee whilst simultaneously making sure roboleg prevents the right knee from giving way and my SI slipping. I think we can agree that I failed on all counts there, but I’ve kept my legs moving and I haven’t completely lost my temper, so not a total fail.

I have a lot riding on this appointment (probably more mentally than anything) – mainly the decision to ditch the splint so I can return to some kind of normality (and work as I can’t get the chair + leg riser around my classroom).

What I’m hoping for is:
– removal of the “bloody splint”
– replacement with hinged brace (to prevent more bending backwards / rotating)
– no care free manipulation of joints
– not being fobbed off with tubigrip

Running nearly 90 minutes behind schedule was doing very little for my nerves  (or those of my poor dad who was looking after the munchkins).

What happened was:

Initial recoil when I mentioned EDS (at least she knew what I meant) & comments on how over extended my knees are. Well yes…  To give her credit, she was very cautious when manipulating my knee.

– “bloody splint” was removed + ceremonial placing of it in the bin! (Apparently the NHS do not recycle)

– leg is now supportless and wobbling free.

– warning was duly given to me that the joint is so wobbly that it’s inevitable that it’ll happen again. (Joy)

– Having another hinged brace is up to occupational health as it can cause muscle wastage. Referral will be made, but there’s an 18 week waiting list (or I need to buy one privately )

– made a referral to the Physio team who didn’t want to see me before because EDS was too complex. Could be interesting. Will take at least 3 weeks to get in contact for an appointment, unless I dislocate again, because then the clock resets and a new referral needs to be made.

…and then…. are you ready? … are you sure?… hold onto your pelvic floor…

The Dr says “Walk on it as much as possible” to the woman sat in a wheelchair.

Yes, I laughed (because tbh, we’re at that point). Dr looked at me & said “Ah yes. Good point”.

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So second roboleg is winging it’s way from Amazon as I have no intention of pushing my kneecap back into place again unless it’s totally necessary thank you very much.

All I Need To Feel Normal is Zero Gravity!

What else would I be doing at 7pm on a Friday night than going to the gym….

Ha! Some hope. But I did leave the house. 7pm tonight was my first session in the hydrotherapy pool. I wasn’t totally sure what to expect. I got into the water using a combo of steps & rails (helped by Mr Geek) into a swimming pool of slightly salty bath temperature water. I was handed a pool noodle to sit on to keep me floaty and I just toddled about moving like a normal human for AN HOUR. Oh yes. A whole hour and I bobbed, I floated, I paddled a bit and stretched out, then bobbed about a bit more, all the while listening to chilled music. It felt marvellous.

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Getting out wasn’t so much fun. I cracked and popped as more of my body left the water and the pain of normal gravity was a bit of a bummer. But on the up side, my appreciation for Mr Geek is far higher, having been lifted out of the water into a curtained changing room where he danced inappropriately at me & wondered out loud (too loud) if we should make Austin Powers style shadows just to highlight that not that much has changed.

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I also had a lovely chat with the hospital physio team earlier today who have decided that they want to pass me on to the pain management team (Whoop!). She also had a bit of a freak out session about me dropping 5kg in 2 weeks without being aware. Despite me assuring her that I really do have plenty of reserves and genuinely don’t mind if I drop a few more pounds, she’s made an appointment with the registrar linked to my GP, combining this with more blood letting & an ecg to work out why I wobble when standing. (Here’s a clue – I’m full of opiates and they make me want to hurl!). Tuesday is looking like fun fun fun!