Doctor Doctor, I keep falling asleep

…during the only hour you can book appointments. Which is infuriating.

I tried booking an appointment through their app, but the next available one is 6th May. My current prescription will run out this weekend. Fuck.

This is the downside of setting GP practices targets on appointments – their solution to seeing people within 12 hours is to release all the appointments at 8am, deal with the stampede and if there are no appointments, well you haven’t booked one so you’re not part of the stats.

So why not just join the stampede? Well, because the screaming leg & hip pain has a lovely habit of showing up like a drunk ex at 1am and demanding I pay attention. This means that once I do get to sleep after electrocuting my pain into submission (TENS ftw, and sadly we don’t get to electrocute the ex) I’m generally unconscious from a combo of being exhausted and heavy opiates… 8am gently rolls past… 9am and I log on bleary-eyed to no appointments and a rising feeling of panic that I’m going to run out of my super-effective slow release painkillers & have to return to the boom & bust of 4 hourly doses.

Going back to work on Monday whilst in the current “shiteverythinghurts” phase is going to be a barrel of laughs. I’m still in the sleepy bunny stage of having swapped to slow release morphine instead of the massively wired state of the max dose of Dihydrocodeine. The change hasn’t stopped the pain, but I care less. My joint pain is way more stable, but the nerve pain from reducing the Gabapentin is like white hot needles in my thighs. Which is nice (said in my best Felicity Ward voice). CRPS is a pain in the arse, or legs in my case. Or top half of legs as my lower legs are numb (small mercies).

I’m not sure how many TENS pads you can put on at once, but let’s give it a go!

Wish me luck gor the 8am syampede I have an alam set (& 5 1/2 hours to get some sleep!).

Night night x

Advertisements

She’s Got a Ticket To Ride

This week we gave been holidaying in De Nile- it’s a lovely place where everyone is happy & having lots of fun goddammit… it’s a delicate bliss that is easily broken into the usual stomach knotting anxiety by ‘I know you’re on holiday but…’ texts and fretting that the kids (and us) are causing too much noise or dashing plans for the family we are holidaying with. We are acutely aware that it’s their holiday too, so don’t want it to be all about us. When Squooze’s shower broke, we were offered a change of chalet – Mr Geek explained that he’d turned it down as it wasn’t the end of the world & the hassle would only be worth it if the shower mummy used was broken. I could’ve smacked him! I know he meant that I can only use 1, whereas other people can share, but I hate being the special snowflake. He means well, but ffs.

Our actual location is Les Trois Forêts, the newest Centreparcs in France on the very East near Nancy about 45 minutes from the German border. It’s everything the adverts promise & a little more. It turns out that centreparcs is my ideal holiday location; I’ve been resisting the calls from friends for years, but my ideal day of breakfasting, then a bike ride along smooth tarmac / smooth forest trails, lunch, & then maybe a swim in the warm pool is all catered for perfectly here.
We cycled along this river today.

My chair cycle has been a permanent feature on my wheelchair this week. So much so that when I offered to take Mr Geek’s broken inner tube back up to the cycle station on my own, he agreed with no hesitation. To recap: I was able to ride to the main centre on my own without anyone fussing. Leonardo (my electric wheelchair cycle) feels like I’m just part of the cyclists here. I can whizz about with my off road tyres on the wheelchair which take almost all of the bumps away, leaving me free to quite literally feel the wind in my hair. Ok, he has a top speed of about 12 mph, and going up hill can be a struggle, and some people insist on staring, but he’s my freedom. Let them stare.

It’s interesting how much we pin on our holidays. These 2 weeks underline the other 5o where we struggle with things day to day, so somehow the other 2 must be perfect. For my part, I am pulling the “I’m fine” card and pushing myself to my absolute physical limits which has already landed me with several nights unable to sleep from pain that I refused to show during the day. Mr Geek snapped several times this week, but today he verbalised his holiday woes – following losing an offspring in the forest, (we didn’t actually lose her, she just cycled so far ahead that we had images of her being eaten by wolves & us making television pleas for her to be regurgitated by the bear that ate her. Usual rational & calm parent reactions), he stated that he would like to have some time where he didn’t have to play UN, or panic about what a child was doing. And he was right. He has been running about trying to make everyone happy – he was rewarded with chocolate & banana crêpes & an hour watching the children continue their goat induced euphoria in the petting farm whilst we leached the WiFi and played Pokemon Go  (the chicken coup was a PokeStop & the enormous slide a gym!). We are both reasonably solitary creatures and he is suffering more than I am with the attack of ‘socialising’. 
Interestingly, I seem to be managing physically better this week, although I’ve had a couple of flares and kept these hidden under the guise of “sleeping in”. I’m keeping up my standard routine of painkillers & TENS, but I haven’t had more than a couple of dislocations this week. I pulled my elbow out a couple of times, but as far as major injuries go, I’m doing really well.

Part of my self care in that respect was to have an “early night” last night. Actually, what that entailed was reading a bit of my book then napping on the sofa from 5pm until dinner, eating a small dinner then heading to bed with the TENS machine running a variety of cycles on my hip & pelvis, and reading well over half of my book in between naps well into the wee hours. I’m reading The Druids Sword which is part of the Shannara Chronicles- brilliantly written, but perhaps out to come with a few TWs. Mentally & physically, it was exactly what I needed & left me with a full compliment of spoons for today. 
Life is not always easy with a heightened awareness of other’s emotions (such as it is with anxiety), but we are with family in beautiful surroundings & enjoying land & water. It doesn’t have to be perfect, because what we will remember is the riding through the forest & rescuing a small child from a locked toiled (always carry a 2p coin for this purpose!) & the late night card games & the food & feeding the cats paté. And of course the goats. We’ll always have the goats… note to self: must double check Beanpole’s luggage…

The Art of More – pacing for control freaks

“Urgh, my back is killing me” mutters a colleague as they stomp across our office rubbing her lower back. The guy I share desk space with visibly cringes and looks at me. Bless him – he’s in his own world of back pain but barely mentions it. He sees quite often first hand me returning from class white faced & pursed lipped as I struggle to maintain the air of someone who’s totally coping with life despite landing in a wheelchair and eating more painkillers than food at lunch.

Today has been a brilliant day. I’ve been a proper mum with the kids, but am suffering for other now by being awake & in more pain than my drugs can attend to. One of my goals this summer is to implement pacing. But do it properly, not just acknowledge I have limited spoons, then throw the whole cutlery drawer at each day. Clear project management is required here.

So what is pacing and why do I need it?

So, imagine you have a baseline which is perhaps laying in bed resting, you can perform an activity within your personal limits then will need some inactive time to follow it. There will be a period of overload because either you’ve tried to do something beyond your energy / physical capabilities or you’ve carried on with a standard activity for too long without a rest. So just like in physics, every action has an equal reaction.

I need to work out how my day at work looks in chart form to see how my pacing is going.

On an average day I’m bouncing above that overload line a lot & also not building in any proper recovery time. I’m also packing in more than an able bodied person could realistically contend with regularly. I’m not giving any leeway to accommodate being in pain. So, I need to attack this the only way I know how, and that’s with a list.  That list will contain all the tasks for tomorrow and then I’m going to prioritise them and build in rest breaks (I’m doing this now as I have control over my day which I don’t at work. That’s a different conversation & one I am going to have to have with OH sooner than I’d like). So tomorrow , or technically today as it’s 2am:

  • Get dressed
  • Get downstairs
  • Teeth / hair
  • Hair cut
  • Dye hair 
  • Wheelchair racing
  • Pre-holiday visit to inlaws
  • Buy physio tape, calpol, blister plasters
  • Lunch
  • Pack for holibobs 
  • Print out letters / tickets for holiday folder
  • Tidy room
  • Eat dinner
  • Get up to bed

Oh holy hell. That’s not a restful day before heading out! Almost everything on that list needs to be ddone due to imminent departure on our road trip on Sunday morning. Wheelchair racing is the only nice to have on there & TBH, it’s my last session for 2 weeks and it does me so much good (physically & mentally).

Ok, so let’s add priority:

  1. M- must
  2. NTH – nice to have
  3. CD – could delegate
  4. OTL – off the list
  • Get dressed – M
  • Get downstairs – M
  • Teeth / hair – M
  • Hair cut – NTH
  • Dye hair – NTH
  • Wheelchair racing – M
  • Pre-holiday visit to inlaws – M
  • Buy physio tape, calpol, blister plasters – CD
  • Lunch – M
  • Pack for holibobs – CD
  • Print out letters / tickets for holiday folder – CD
  • Tidy room – NTH
  • Eat dinner – M
  • Get up to bed – Massive

See how cleaning up hit the bottom of the list there? My mum would flip if she saw that! 

CDC sadly falls on the shoulders of Mr Geek & the kids, but I feel a little less guilty having braced myself and bulldozed my way through a whole week of him commuting to London (or from our perspective, not being there to get me out of the house & not getting back until after 7pm). It’s his first week at New Job which he is absolutely loving, but fuck me that was blindingly hard. I didn’t want to worry him, so slapped my happy work face on. I’m paying for it now though  with bones cracking as I breathe & thudding palpitations waking me each time I doze off.

My plan is to use this priority list tomorrow & see how it goes. If anything gets added to the list, I’ll note it down to see how I’m undermining my own paving without realising. The “oh I’ll just…” moments. 

Wish me luck! 

How would’ve you organised my list? Let me know how you prioritise your to do list. Is there an app for this?

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.

image

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.

image

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.

image

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!

image

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.

image

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.

image

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.

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.

image

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 💕

Pain? You’re Fired!

I have my first appointment with the Pain Management Team on Monday and I’ll be honest with you, I’m dubious.

I get this feeling that pain is something to be dealt with in a matronly fashion with all this fuss and nonsense put away just so. We’re going to manage this pain out of a job. Actually I quite like the idea of firing my pain….

image

There are lots of people who post happy positive posters about not being their diagnosis and being pain / EDS / CRPS warriors. They appear to be using all of their energy convincing the world that inside them is a healthy person trying to get out. I’m sticking with my stoic approach. It’s worked for me for a long time. Let’s look at the objective facts:

– I’ve been in some form of pain for as long as I can remember
– I’ve been seeking help for specific joint pain since 2004
– I have a lifetime diagnosis of Ehlers Danlos
– POTS & CRPS are not permanent diagnoses
– I have 3 degenerated discs in my lower back, my neck hasn’t been MRId but the headaches and arm pain suggest similar.
– I’ve not had an upright MRI to show how my body responds to gravity. That’s expensive.
– At this moment, my mobility is bad. Powerchair bad.

What’s the absolute worst that could happen?
I get worse, or can’t tolerate the pain levels and have to stop teaching completely, rather than my current lame attempt at being a real person and teaching from my wheelchair which has varying degrees of success.

Is that the absolute worst? Seriously?
No, it’s relative to current situation, but I refuse to entertain any darker thoughts about remaining in this much pain. There are much darker thoughts. They pop up more than I care to admit.

When I look at those people who are ‘pain Warriors’, I know that’s not for me because for me, there’s no point wasting energy I don’t have pretending not to be in this situation.  It sucks yes, but this is my reality. Denying that pain, or joint dislocations exist is the kind of stupid “I’m fine!” attitude that landed me in a chair. That and shitty genetics.

So, apparently we will “manage” the pain better and hey presto, angry cornered animal returns to serene Swan. Pain management seems the way forward. Or at least it’s the thing that all the specialists have said after they shrug and tell me that they’re not that well versed in EDS, or POTS, or CRPS, or any other medical acronym that has stuck itself to me like an irritating bur over the past few years… Months ago I was sent a pile of questionnaires to complete about my pain. A whole host of the questions in these were vague and repetitive. For a (computer) scientist who finds holding a pen painful, I want a to the point assessment with minimal writing – online if possible. I don’t want to fill in three million on a scale of 1-10s about how much I can still do “things”… what things? I still enjoy eating cake. I’m not such a fan of rock climbing these days.

They even included this one. Twice. The pain is zen. I am the pain. The pain is everything and everywhere. It hurts…. HERE. As in, in this room.

image

It put me on the defensive because the data analyst in me extrapolated 3 questions from all of these questions:
1. Are you faking it?
2. Are you a hypochondriac?
3. Are you mentally ill?

No, No, and no but I’m starting to wonder. I’m in chronic pain & like Obi Wan Kenobi, you’re my last hope.

Anyway, my appointment came through telling me that I would be seen alone and then they would decide if my companion could join us. Err, no. He’ll be coming in thank you. Do I sound a bit defensive? I guess I am. This is now my bog standard reaction to medical professionals that scare me. And anyone who may want to physically examine me, stands a very real chance of holding a disembodied limb by accident. This was the case with the Rheumatologist who just put that shoulder back where he found it and hoped no one noticed. I did notice. It hurt.

When I was pregnant I growled an obstetrics consultant out of a room backwards when he suggested I wasn’t helping my blood pressure by getting angry at him & that high BP makes women “a bit crazy”. Again, in seething agony from what was diagnosed then as SPD and spontaneous labour, I wanted to be listened to and given answers. Not patronised.

Exhibit B: every nurse / anaesthetist who scoffed at my suggestion that I’m hard to get blood from. I tried donating, the British Heart Foundation lovely lovely nurses declared that I bleed less than a well done steak. The 15 minutes, 2 nurses, & 3 pediatric needles required to do my blood test last week ought to be proof. The cumulative result of people not listening to my knowledge of my body was an anaesthetist running around my head shouting “Shit! Shit! SHIT!” After yet another canular collapses and my BP plummets mid c-section.  Everything goes white…. the pearly gates rang out the expletives of a tubby man in scrubs who knew better.

Exhibit C: The NHS Rheumatologist who I pinned all my hopes on (because whilst the Hypermobility Clinic is amazing, it’s also expensive) then pulled out my shoulder & caused me to pass out during the physical after sending my HR through the roof. After all this, he tells me that Rheumatologist don’t deal with EDS, that my pain is caused by lack of sleep, POTS is just deconditioning,  thank you and goodnight. No interest in helping to check the other symptoms  (difficulty swallowing,  brainfog, gastric issues, weird bladder, steaming headaches). Since then, GP has referred me back to London & a cardiologist. Still stuck on the GI front until I can’t eat solid food at all. Nice.

Exhibit D: Physiotherapists. Who, to give them credit probably know far more about the body as a whole than orthopaedic consultants. But traction is not the answer for everything – actually, the answer to traction was permanent nerve damage. Pain when you have unstable joints is not gain, it’s pain. I’m not sold on infrared… waving a light over a slipped disc (or 3) then charging me £60 doesn’t seem all that worthwhile. And the NHS ones recently refused to see me after a telephone consultation because they only do one body part at a time and I’m just to darn complex. A&E keep referring me back to physio after each major dislocation, but they’re not keen.

So here I am staring at Pain Management. I’m on day 5 of a CRPS flare that makes me want to hurt people as throwing my whole basket of drugs at it, just about keeps me at a point where I’m coherent. But not sleeping. They’re going to want me to put into words what it feels like, I can describe EDS pain, but CRPS is different and less obvious externally. So I’m going to take this post with me so I don’t forget (or if this continues, in leiu of speaking).

What does my CRPS feel like?

It’s based around my pelvis. I visualise it as a the facehugger from Alien that is more of a arse man. It’s attached itself to my SI and sunk it’s teeth in. On a good day, it’s teeth are made of glass and it chomps down if I stand, or sit, or don’t shift about enough. The glass grinds in my hips. Stretching helps release its jaws, but it’s temporary, so I keep it sedated with Gabapentin.

image

On a bad day when it flares, the facehugger is grinding it’s glass teeth together and I can feel my SI move  (I know it’s not meant to move, but I, and everyone around me can hear the audible hollow clunk of it slotting back into place. Sometimes I can do this just by clenching my buttocks). On a bad day, it has tentacles that weave their way into my hips and legs making them twitch and shake and pulsate with waves of lightening pain. It leaves my feet feeling like they’ve been painted with acid and they burn. On a bad day, the face hugger’s arms extend up my back and poke around with the trigger points in my shoulders. Instead of having standard sore & knotted shoulders,  they are white pain that screams. On these days I cover the facehugger with heatpads and hot water bottles, I use the metal in my wrist splints to rub the aching from my thighs and knees until it’s just the fizzing electric pain left, I keep taking the gabapentin and add oramorph which does little for the CRPS, but reduces the acute pain from today’s subluxations which doesn’t take the level of pain down,  but turns the volume down enough to focus the heat and TENS on just one place. TENS helps. It messes with my brain and fools it into listening to the prickly pain of the machine up at full volume. It’s like drowning out the screams of Dante’s 7th circle of hell with death metal music. Neither are particularly soothing, but the latter is more tuneful.

I’d rather dislocate daily than have regular CRPS flares. A dislocation is a deep purple pain that makes you feel sick. You can RICE a joint and you know what the worst is – a bit like childbirth. We’ve done this before, go through the drill and at the end register another shiny new bruise that won’t let you sleep. The CRPS facehugger isn’t like that. It dozes off, then wakes up with a start and clamps down in different places and with different types of pain.

This week we added a great big swollen red foot to the fun and games. By the time I took the photo, my toes barely moved from being so puffy and my ankles had all but gone. Did they hurt? Yes! But we replaced the chemical burns with the feeling of having water balloons for feet. They felt like they might burst with any pressure. Yum!

image

This seemed like a really negative post, but actually by using personification for my CRPS, I’m able to relax through the worst of it. By making it into the “ButtHugger” I can explain it to the kids who see me wince and yelp in pain.

If it’s a “thing”, then I can tell it off and to sling it’s hook.

I’m not holding onto my diagnoses. Im pragmatic. I’ve worked out ways to continue with life. There are therapies like hydro & massage that I’d love to do regularly but don’t have the resources (or can’t find a pool with a hoist that isn’t for horses in the whole county!) . There must be exercises I can do without dislocating, and I will find them.

This isn’t the end Butt Hugger.

 

Edit: post appointment – actually, despite my reservations, the pain management appointment went incredibly well. They were very supportive and entirely understood my concerns about dignity, mobility, and EDS. They were less aware of CROS, but were willing to learn. These ladies are keepers.

 

Thank you to Burning Nights for featuring this blog post on their website. Please follow them on Twitter at @BNightsCRPS ( and me on @ExpectZebras )

#fiveminutefriday Imagine

The premise is simple: We write for five minutes flat. All on the same prompt that is post on the Lisa Jo Barker’s site at 1 minute past midnight EST ever Friday. And we connect on Twitter with the hashtag #FiveMinuteFriday

No extreme editing; no worrying about perfect grammar, font, or punctuation.
Unscripted. Unedited. Real.

This week: Imagine.

Go.

Imagine if I didn’t make weird noises when I sat down, or got up, or bent forward. Imagine what it would be like to turn over in bed and not have to do it in stages and occasionally bash my hip a bit to keep it going.

I’ll admit, I quite fancy a daily routine where I’m not thinking ‘f*** it, how much worse can I make my back anyway?’. But it’s that exact question that makes me who I am (for those out of the loop, that would be a bloody minded fool). Ok, so on occasions I rely on some nifty opiates to take a bit of a pain vacation, and other days I’m as right as rain. But life is for living. Just imagine what life would be like if we spent all our time trying to avoid pain – we’d do nothing! We’d try nothing! We’d take no risks. And taking a risk can often lead to longer term happiness. On the flip side, it can also lead to temporary pain. But a lack of action just makes us dull and depressed.

Will I try new things? Yes. Having broken bones, dislocated things that should definitely be located, and got through two ‘interesting’ births (another time), I know my pain threshold well. I can break stuff and deal with it, I do not cope well with having a baby’s head rammed into my pelvis repeatedly by ridiculous drugs (the kid wasn’t impressed either).

I’m not one for positive thinking. Imagine the worst, and hope for the best. That way you’re at least prepared when you fall on your arse and you’ll have the common sense to check each body part for damage and deal with whatever flies at you.

Stop.