Embarrassing Body

EDS leaves you with the weirdest injuries.

Weird injury #432
Torn skin on my groin because my control knickers cut in.

Dignity. Gone!

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Spoon Theory In Action – Ireland Part 1

Today was an utter write off. This is not a bad thing my lovely readers, I just needed some time to wait for my next set of spoons.

Some days are better than others and require fewer spoons for basic things than other days, but I’ll be as accurate as possible…

The past 4 days have gone as follows:

Wednesday:

Spoons = 20

Got up & dressed : -2 spoons

Tried to book gp appointment online & failed because their website sucks. Phoned surgery to begin for an emergency prescription as I’d calculated wrong and only had 3 days of painkillers left! : -3 spoons

Supervised kids whilst packing own clothes: -3 spoons

Helped Mr Geek return the hired wheelchair & picked up back brace and lunch : -3 spoons

Ate lunch & helped kids sort out their washing : -2 spoons

Picked up emergency prescription & drove to airport whilst running late as Mr Geek got stuck on a work call : -5 spoons

Airport & flying fiasco : -6 spoons

Late night chatting with my bestest of best friends : -2 spoons

End of day 1 spoon count: -6

Thursday

Spoons = 14

Taking painkillers late meant staying awake until 2am with painsomnia which instantly deducted spoons because I woke up tired. -3 spoons

Woke up giggling as Bambi “tiptoes” down the stairs hollering for everyone to be very quiet. I’ve missed that voice!

We’re in Omagh and Mr Geek was heading out with Mrs Gypsytree to get some breakfast for everyone. I shuffled out to the kitchen to be presented with coffee by Mr Gypsytree and generally be surrounded by the 7 kids that we have collectively produced : -2 spoons

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Mr Gypsytree is about as close as having a brother gets for me. He is dry and pokes fun at me and attempts to come across as the big hairy man in my life, but has discreetly been my absolute saviour on a number of occasions. When he left for Ireland, I cried more than his wife did!

Breakfast returned with a shining example of why Mr Geek & Mrs Gypsytree shouldn’t be left unsupervised:

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Yes. That is a Batman Onesie. Ffs.

I nibbled my way through a croissant that made me feel nauseous whilst we decided what to do that day: -2 spoons

We decided to let the kids play until after lunch then we’d go out to the memorial gardens and the park. The kids were totally happy to race around the house just being them whilst we chatted in the kitchen. My eyelids were stinging from overdoing it the day before and I had to fight hard to maintain focus whilst we chatted (There were a few occasions where the eyelid fairies were hanging off my eyelids and I needed to prop them open). We haven’t seen them in 3 months goddamit. I will enjoy this!
-4 spoons

After lunch we wrapped me up in my jumper and blanket, got the wheelchair out and headed out into Omagh. Our first stop was the memorial garden which was far more moving than I expected. Reading the names of all those people with a mirror created for each of them (including the unborn twins) just made my heart hurt.

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By this point, I was cold. But the kids were still lively, so we carried on over to the park.
-4 spoons

The walk down to the park left me shivering (Northern Ireland is bloody freezing!), and yet the kids were happily parading around with our coats whilst I huddled under my shawl. The park was lovely and reminded me of the park that Mrs Gypsytree and I spent many damp summer holiday afternoons having car picnics at back home.

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I’ll hand it to Ireland – they really know how to do Autumn, and who wouldn’t want to be happy for these two:

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Eventually, the kids started showing signs that dinner would be appreciated and so we gathered the masses and started the wander (push) back home.
-3 spoons

Back at the house, pizzas for the kids were put in the oven and the menfolk were sent out to hunt for dinner (in Asda). Mrs Gypsytree provided sustenance to each child who promptly plonked their exhausted bottoms in front of a film whilst the adults pottered. This included me warming my various extremities on the radiator. (I was expecting to meet a polar bear at any point).
– 2 spoons

Kids weren’t so much put to bed as asked to go as it was kiddie Sleepover time, and they wanted to sleep!

The rest of our evening was spent eating baked camembert, bread & brisket (totally FODMAP friendly) and playing either Exploding Kittens or Adventure Time Munchkin.

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Some parts of our friendship never change. Time flies and before we knew it, bedtime had hurtled past us.
-4 spoons

End of day 2 spoon count: -10

…. to be continued 😉

Vom Air – the reason I will always fly with @easyjet

I will blog about our trip to Ireland, because it was just lovely. But for now, get some sweet tea and a strong stomach…

Today I flew home with my Sherlock, my bestest of best friends, Mrs Gypsytree. Mr Geek was on the other side of the aisle entertaining a very overtired Birthday Beanpole and equally knackered TinyPants  (I’d done parent duty on the way out). Despite entering the aircraft on a combo of wheels, sticks & hydrolic lifts, we were giggling like schoolgirls. We’ve basically never grown up and revert to our musketeer chasing teenage girl type when around each other. This kind of thing is good for the soul.

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Travelling is clearly not my thing. We are just destined to never have an easy journey anywhere and as I sat down with Mrs Gypsytree to start our giggly flight back to England we looked out for the person poor unfortunate soul we would be sharing the 3rd seat with. A single person, probably a business person flying back to the mainland?

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Cue lady with a huge flight bag who promptly falls over both of us & exudes alcohol from every pore. Said bag does not fit into overhead storage, mainly due to hand-eye-alcohol coordination, so I move and sit on Mr Geek’s lap whilst Mrs Gypsytree tries to help with luggage tetris.  Mrs Gypsytree tries ever so hard to make friendly conversation, but quickly realises that this is more difficult than maintaining high brow discussions with the three year old we’d left back in Ireland with Mr Gypsytree. (Whizzy’s opening gambit this morning was to stand on the high chair and shout “NO GROWED UPS! You must not have cake. Cake is not yours!”). I have no issue with drunken people per say. In fact, I have been known to be said drunken fool, quite often assisted into that state by Mrs Gypsytree herself. Just not on public transport. And not on a plane. There may well have been a genuine reason for her being utterly wrecked (aside from being in Ireland) and I hope that it was just a bit too much Dutch courage to combat a fear of flying. There may well have been another reason altogether, so I feel bad for being judgey. With that said, in uncomfortable situations, humour is coping mechanism no 1.

As we take off there is an odd odour and the lady appears to be curled up in a ball not looking well. We looked at each other with the realisation dawning on us that she was gently vomiting into the clear bag designed for customs right beside us.  Oh dear God, I bet that’s more than 10 ml. The seat belt sign was still on and so she had to remain, bag of vomit resting on her lap. We talk about our weekend plans firmly ignoring the alcoholic chunder cloud appearing next to us. There is a white elephant and we are doing our absolute British best to keep calm and carry on whilst discreetly providing her with all of our little on board ‘bags’ and napkins.

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Mrs Gypsytree decided to fight fire with fire and as the flight attendants came along, ordered a stiff drink. And we giggled that this was good material for my blog  (and indeed it is!). The addition of teeny tiny bottles of alcohol was clearly too much for our friend and she climbed over us again and headed for the toilets after briefly breathing over the flight attendants.

Shortly after, a wonderful member of staff called Tim asked if we were travelling with her, to which we just made pained faces and said no. “She seems a bit worse for wear?” He asked, making the understatement of the year, but being magically tactful to both her and us at the same time… we agreed and said we thought she might have had a teeny bit too much to drink & that she may need to be looked after as she was being sick. He pointed to some free seats near us and said we could move if we wanted. We decided to stick it out as we didn’t want to be rude to her.

Sandwiches and coffee were presented to her and to her credit, she did attempt to eat, but the rolling of the plane was just too much and we were treated to further discreet hurling. This proved too much for me (mainly the needing to let her pass every 10 minutes with additional bashing of my leg braces) so Mr Geek lifted me to a spare seat and Mrs Gypsytree moved with me. The young lady who had been enjoying a peaceful flight until then was ever so gracious about letting us move over with her. (If you are reading this and you are the lady in the niqab, your daughter is a credit to you).

Part of us felt terrible for leaving her in such a state, but a fair bit of me also now felt quite nauseous (I don’t need help with nausea thank you). With this said, as we moved we got the attention of the lovely Tim who to his absolute credit, continued to provide her with little bags & alerted people to her imminent arrival.

Sometimes, people need a thank you so we tweeted Easyjet thr instant wheels touched the ground. And they ‘liked’ it within seconds. A thank you is nice,  but a thank you via your bosses is something to go into your appraisal 🙂

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I hope he gets the thank you tweet, because he went above & beyond this evening.

With Mrs Gypsytree safely delivered to her mum’s house at just after midnight, we headed home. Despite being 1.30am and dreadfully past my bedtime, I’m still writing because Watson has returned to Baker Street without Sherlock. Whilst I can see how happy and settled they are in Omagh (blog pending – it’s a wonderful place), I miss Mrs Gypsytree more than I’d ever bargained for.

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I hate that most of my favourite people live so bloody far north, or a full plane journey away.  I hope that lady found her long distance friends ok.

Vom Air – the reason I will always fly with @easyjet

I will blog about out trip to Ireland, because it was just lovely. But for now, get some sweet tea and a strong stomach…

Today I flew home with my Sherlock, my bestest of best friends, Mrs Gypsytree. Mr Geek was on the other side of the aisle entertaining a very overtired Birthday Beanpole and equally knackered TinyPants  (I’d done parent duty on the way out). Despite entering the aircraft on a combo of wheels, sticks & hydrolic lifts, we were giggling like schoolgirls. We’ve basically never grown up and revert to our musketeer chasing teenage girl type when around each other. This kind of thing is good for the soul.

image

Travelling is clearly not my thing. We are just destined to never have an easy journey anywhere and as I sat down with Mrs Gypsytree to start our giggly flight back to England we looked out for the person poor unfortunate soul we would be sharing the 3rd seat with. A single person, probably a business person flying back to the mainland?

image

Cue lady with a huge flight bag who promptly falls over both of us & exudes alcohol from every pore. Said bag does not fit into overhead storage, mainly die to hand-eye-alcohol coordination, so I move and sit on Mr Geek’s lap whilst Mrs Gypsytree tries to help with luggage tetris.  Gypsytree tries ever so hard to make friendly conversation, but quickly realises that this is more difficult than maintaining high brow discussions with the three year old we’d left back in Ireland with Mr Gypsytree. (Whizzy’s opening gambit this morning was to stand on the high chair and shout “NO GROWED UPS! You must not have cake. Cake is not yours!”). I have no issue with drunken people per say. In fact, I have been known to be said drunken fool, quite often assisted into that state by Mrs Gypsytree herself. Just not on public transport. And not on a plane. There may well have been a genuine reason for her being utterly wrecked (aside from being in Ireland) and I hope that it was just a bit too much Dutch courage to combat a fear of flying. There may well have been another reason altogether, so I feel bad for being judgey. With that said, in uncomfortable situations, humour is coping mechanism no 1.

As we take off there is an odd odour and the lady appears to be curled up in a ball not looking well. We looked at each other with the realisation dawning on us that she was gently vomiting into the clear bag designed for customs right beside us.  Oh dear God, I bet that’s more than 10 ml. The seat belt sign was still on and so she had to remain, bag of vomit resting on her lap. We talk about our weekend plans firmly ignoring the alcoholic chunder cloud appearing next to us. There is a white elephant and we are doing our absolute British best to keep calm and carry on whilst discreetly providing her with all of our little on board ‘bags’ and napkins.

image

Mrs Gypsytree decided to fight fire with fire and as the flight attendants came along, ordered a stiff drink. And we giggled that this was good material for my blog  (and indeed it is!). The addition of teeny tiny bottles of alcohol was clearly too much for our friend and she climbed over us again and headed for the toilets after briefly breathing over the flight attendants.

Shortly after, a wonderful member of staff called Tim asked if we were travelling with her, to which we just made pained faces and said no. “She seems a bit worse for wear?” He asked, making the understatement of the year, but being magically tactful to both her and us at the same time… we agreed and said we thought she might have had a teeny bit too much to drink & that she may need to be looked after as she was being sick. He pointed to some free seats near us and said we could move if we wanted. We decided to stick it out as we didn’t want to be rude to her.

Sandwiches and coffee were presented to her and to her credit, she did attempt to eat, but the rolling of the plane was just too much and we were treated to further discreet hurling. This proved too much for me (mainly the needing to let her pass every 10 minutes with additional bashing of my leg braces) so Mr Geek lifted me to a spare seat and Mrs Gypsytree moved with me. The young lady who had been enjoying a peaceful flight until then was ever so gracious about letting us move over with her. (If you are reading this and you are the lady in the niqab, your daughter is a credit to you).

Part of us felt terrible for leaving her in such a state, but a fair bit of me also now felt quite nauseous (I don’t need help with nausea thank you). With this said, as we moved we got the attention of the lovely Tim who to his absolute credit, continued to provide her with little bags & alerted people to her imminent arrival.

Sometimes, people need a thank you so we tweeted Easyjet thr instant wheels touched the ground. And they ‘liked’ it within seconds. A thank you is nice,  but a thank you via your bosses is something to go into your appraisal 🙂

image

I hope he gets the thank you tweet, because he went above & beyond this evening.

With Mrs Gypsytree safely delivered to her mum’s house at just after midnight, we headed home. Despite being 1.30am and dreadfully past my bedtime, I’m still writing because Watson has returned to Baker Street without Sherlock. Whilst I can see how happy and settled they are in Omagh (blog pending – it’s a wonderful place), I miss Mrs Gypsytree more than I’d ever bargained for.

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I hate that most of my favourite people live so bloody far north, or a full plane journey away.  I hope that lady found her long distance friends ok.

Reunited

Sherlock & Watson are briefly reunited
(This equally means that Mssrs Geek & Gypsytree are Mrs Hudson & probably Lestrad). All is good with the world right now.

Elongated updates to follow,  but for now the case is well and truly open & the grief tache is off!

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Come Fly With Me (and my metal braces…)

We’re off to Ireland today to visit Mrs Gypsytree and her clan. And we’re flying. With 2 kids and me braced up like Ripley in Alien albeit in a wheelchair.

Those big signs at departures that ask you to remove anything metal usually mean take off jewellery, or your belt. After doing a 2 day stint with Mr Geek in London for 14 hours of our day, I’m wobbly and twingy which means the splints are out in force. This means:

– Roboleg  (hinged knee brace)
– temporary roboleg (neoprean & metal boned patella brace)
– shoulder / back brace to hold my shoulders back, but has 2 steel rods down the back
– 2 hand / wrist splints with metal stays

Oh, and the wheelchair.

The ancient Egyptians would be impressed with my bindings. Amenhotep probably looks healthier too. If I’m honest, I threw all my spoons to the wind at the weekend and consequently,  I look like shit warmed up.

Then there’s flying with my meds. This time we’ve taken a confirmation letter from the doctor of my EDS to explain why I’m travelling with a backpack full of pills.

As expected, with this much metal, the detector went crackers and so off I rolled to the blue mat of shame to be searched. The chair was searched for explosives & each of my braces were inspected. They were both thorough and totally sensitive to not causing any pain. I tip my hat to you Gatwick airport security control. You were excellent.

Boarding,  well that wasn’t quite so excellent. We found our gate and asked if we needed to do anything specific. We were told to wait in line. Standard stuff, no problem. Then someone from airport assistance noticed us and ushered us around the queue to the check in lady who promptly told us off for not requesting assistance. We said that we’d requested this when we booked the tickets. “But you have to also go to the assistance desk when you arrive at the airport!”. Apologies. We’re new to this & had no idea. “Can you walk on the gangplank?” Sorry, the what? “ON THE PLANE. Can you walk?” With crutches, a short way yes. I can also understand words more than one syllable long. Please don’t get stroppy with me, I’m much more tired and in pan than you realise and I will have a toddler style tantrum (or write a sarky blog post or whatever).

“Do you have a tag for your chair?” No, do I need one? Apparently so, and she strapped it to the hand rail then huffed as she called airport assistance as there were now more people who needed assistance. How very dare we.

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Now, when you’re self propelling those rails around the wheels are rather vital, when you’re trying to stop yourself freewheeling down a ramp towards a wall, being smacked in the hand by a label is not just irritating, but bloody dangerous. Easyjet, you are not winning my affection here. I have papercuts 😦

Once at the plane, I was asked if I needed my chair brought up at the other end. It was suggested that we mention it to the cabin crew near the end of the flight otherwise it would go off with the other hold luggage. I was a bit confused by this – I needed help on, surely it was implied that I wouldn’t be skipping down the steps at the other end?

My chair was left with the assistance team and I was jostled onto the plane with crutches. I was sore and at shuffle point, but despite being visibly lifted from my chair by Mr Geek, I still got tuts for not getting on to my seat fast enough.

Now in the air, I’m not particularly keen on flying again. Most of the flight was spent fretting that my chair didn’t make it on the plane with me or that I’d need to crutch shuffle from the plane. I’d also needed to go to the loo at the gate,  but we’d been ushered through so quickly that I didn’t get chance. Despite being sat fewer than 3 metres from the loo, with the combination of my crutches locked in the overhead locker, a wobbly plane and Mr Geek sat not in the aisle seat he’d booked, but squished into the window seat, I’d lost all hope. It’s a good job I can’t really feel it until I’m utterly desperate. I think it was safe to say at this point, I was not having fun. Even the prospect of seeing Mrs Gypsytree wasn’t detracting from my body screaming at me.

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As it was, my chair was fine & I was met by it and a lovely lady on the actual plane and taken down on a ‘high lift’ which is essentially a beefy version of a cherry picker.

Arrivals at Belfast were so smooth and we collected our hotel car in minutes. Once inside the car, Mr Geek helped me strap on the tens machine to try to break through enough pain to make me functional. With a thousand tiny bees riverdancing on my spine, we started the hour long drive over to Omagh. Then it started to rain.

Welcome to Ireland. People are lovely,  access is good, but the weather is shitty. Can’t have it all 😉

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.