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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A Wheelie Good Summer

I’ve not blogged for a while as I’ve been in a bit of a slump. The lack of outdoors has rather hit me this year & combined with missing my partner in crime and her tribe as the weather attempts to look vaguely like spring I’ve been having a bit of a pity party for 1.

Having always been a bit of an active family, finding myself sitting on the sidelines or being wheeled about on nice flat surfaces is immensely frustrating. And welcome to the conundrum that is knowing that I am immensely lucky to have Mr Geek to look after me whilst also being so frustrated at being left out & having no physical outlet for stress.

I’ve made peace with the idea of being in a wheelchair. My pelvis is shot & the nerve damage is clear. But the pain Management team gave me that tiny light at the end of the tunnel that with persistent physio there is the hope of improving my general pain levels and upper body. But ongoing physio isn’t a thing that’s on offer – it’s a case of being given ideas and doing it yourself. So off we went and found this!

Hiring was our initial thought, but with only a couple of places in the UK offering this, supply & demand means that prices are upwards of £125 ($180) per week. Erk! So, what about buying? …. an adult bike is usually a few hundred pounds…. oh. The curse of the disability markup strikes again.

So, what to do. Firstly, we start saving as much as we can. Secondly, my doctor has referred me to wheelchair services to ask for help with a manual rigid chair, and finally, swallow my pride & concerns and ask for help.

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https://www.gofundme.com/294kw344

If you’re reading this, I’d be so grateful if you’d consider sharing either this blog, or my link.

As always.
Sending much love into the ether that is the internet 💕