Officially Funny. Or am I?

Soooooo… guess who got a nomination for a blog award for being a source of amusement?

The health blogger awards are quite big in my twitterssphere with many of my friends online sharing similar experiences of trying to quite literally hold it together and wobble through life. So, yeah, even being on the list is quite awesome – but winners are picked on endorsements.


Whether you read my blog to laugh at or with me, or if by some streak of luck I’ve managed to help in any way, I’d really appreciate you clicking the link & pressing the big purple “endorse” button to validate my online existence. 

https://awards.wegohealth.com/nominees/12945
Hey, you never know, you might be able to say “yeah, I knew her before she was huge”…. because in the words of The Brain “We’re going to take over the world”.

Clearly feel free to spread the link far & wide 😉

NARF.

[Insert Witty Title Here]

It’s been a funny old day facilitated by a lot of painkillers. It’s been a bloody long one too. A total of 13 hours from leaving for work to returning home. That might not be much to some, but 13 solid hours in the wheelchair with no chance to transfer, or stretch out, or in fact have a nap after a tosh nights sleep was all a bit much.

I was greeted by a colleague today who goes out of his way to help me navigate the doors at work each morning. Not out of pity, but because he gets that it’s just hard opening doors and he misses the sense of community from his home country that is lacking in the UK. I enjoy our morning chats and I find his very honest love for people infectious. I’m a grumpy arsehole in the morning,  but he brightens my day by leaping out of his classroom to hold open a few doors just for me.

This morning he asked me how I stay so cheerful and positive. He really meant it. I did a presentation at the start of the year to the whole school faculty and apparently I was genuinely passionate. I do smile. I do ask how people are. I do laugh off the crappy days. It worried me that I seem so genuinely positive. Have I really got that good at faking it?

Of course I’m not going to tell you I’m in agony and my pelvis is burning. Instead put on a big smile and say “I’m fine! How are you?” Or make some stupid quip about having all 4 limbs.

Of course I won’t tell you about spending 20 minutes this morning layering on special concealer, foundation,  and powder to hide the eye bags. I do appreciate you saying how well I look though as it validates my make up skills.

Edit: before and after. Eek!
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Of course I’m going to shrug and say it could be worse, or there’s nothing I can do so why worry? These lines are so well versed that even if believe them some days. And actually only a couple of people get away with the following up of “and how are you actually doing?”. Mrs G, Mr Geek & Mr Gypsytree get honest answers. They are the glue that holds the bits of my mind together. Mrs Gypsytree aka Sherlock gets a special version where I don’t have to say much.*

How do I stay so positive?  Easy. I fake it. And apparently I deserve a bloody Oscar.

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The reality is that I got home today after a 12 hour stint at school + an hour of travelling in so much pain I found it hard to speak. I hit tired at lunchtime and pushed through tired into manic, then into plain weird where I got cross with Mr Geek for chewing to loudly near me, then finally rock bottom where I just cried buckets because I typed the Gypsytrees’ collective names. Just to help, I now can’t sleep as my legs are restless and ALL the painkillers aren’t helping my extremities or the headache that’s creeping up the back of my neck.

A huge part of that reality is being scared that if I rage about being in pain and physically useless all the time I’ll get boring and that stuck record will get old and eventually be left alone. So instead I smile as if my life depends on it. Because to a certain extent it does.

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On a much funnier note, a student at school went joy…err..hopping on my emergency crutches that I keep in my 1st floor classroom today. In his defense, he hadn’t considered why they are there, nor what would happen if there was a fire and my chair failed. Equally in his defense, with hindsight it’s quite funny watching someone describe a TWOC offense (taking without consent – which is usually reserved for vehicles) when referring to crutches. How far did he think he would get? We’re they going somewhere?  Why would you do that? Is there a crutch black market? The teenage boy brain baffles me. The hardest part : keeping a straight face.

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* Note to self: It’s OK to miss them. It’s not ok to get runny mascara over the Marvel Duvet cover. Captain America now looks like he’s been down the mines.

Weirdos Like Me

Some days feel very lonely in the world of me. Mr Geek is a constant source of silliness in my life, but sometimes I just need my friends to cheer me up. It’s just that they live bloody miles away! Then along comes Facebook.

I posted a thing that’s doing the rounds on 9Gag about women braiding their own beards & instantly got whoops from 2 special people, so I thought I’d give it a go. No mirror,  no dexterity in my fingers, but a beard was created.

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Then Mrs Gypsytree followed suit with her own dreadlock version. She doesn’t take much egging on to be my partner in crime…

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We were kinda dissapointed that GiddyKnitter hadn’t joined in the fun, but ce la vie….. then we realised that she’d gone full beard. She nailed it.

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My friends, no matter the huge distances between us make me feel like I’m not the only loony in this bin. You bearded women are awesome.

And they have better beards than me.

You Can’t Be Serious

Not all the time. Today has kicked my arse.

I pulled out my shoulder trying to propel myself up an accessible ramp (oh yes. I did that), my swallowing / stomach is at a point that even ordering pizza to tempt my taste buds ended up with me with stomach cramps and palpitations  (wtf?!).

So, I decided to cheer up a bit. Hopefully these will make you giggle too 🙂

Yeah EDS… You’re only kicking my arse because no one else can.

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The less spoken about aide of humour. And yes, I’ve totally dislocated a hip during nocturnals… and my jaw 😉

Totally not sexy.

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Not so much a meme, but a useful image for when I feel so bloody old! At least now I know why!

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That’s me that is. Skilled.

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This is basically me after lesson 1 each day. My kids are so lovely that they followed me about today opening doors and carrying tea for me. I looked extra super terrific today.

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I’ve not seen this one before, but I may just stick it above my desk!

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Pretty much how I react each time I see my GP. Apart from today. Today’s locum was astoundingly helpful. And talked to me like a human 🙂

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I’m not religious. I’m agnostic at best, but I like this.

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Not EDS related, but this is also my cat Thomas. And he’s a meme 🙂

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Finally, a serious one just to finish up.

I have no wish to take anything away from cancer awareness, but reading so many blogs about chronic illness makes you wonder where all the other adverts are. Fibro, ME, MS, dysautonomia, RA. There are so many 😦

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Crap. That ended on a bit of a downer. Here, let me sing you the song of my people.

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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.

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.

Lucyisms

Yesterday, we met RunningWoman for coffee & caaaake with our various offspring. We were catching up on roboleg & the wheelchair use, and bits falling off me at random when her 14 yr old daughter had a sudden thought:

“Ooh mum! Will you watch the Walking Dead with me today?”

Then it dawned on her how that thought had formed and she stopped. And we all fell apart laughing.

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I love the unformed frontal cortex of teenagers…. and our ability to laugh at he whole situation.

The Machine That Goes BING!

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

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

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

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

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

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

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

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

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

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

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