The Tale of Tinmum

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Once upon a time there was a little girl who had a spinal cord tumour cut from her spine. As the girl grew she had her appendix taken out, when she was older still she had a rib removed until finally one day her gallbladder gave up and was pulled out through her tummy button along with some omentum (stomach lining) just for good measure.

All was not lost for the girl as she received many things in return. She gained three titanium rods, twenty titanium screws, one titanium cage, a bone donor’s femur, several scars and lots and lots of blood. 

Some may question whether this girl is actually the same girl who started out.

Some days the girl questions this too.

The girl goes by the name ‘Tinmum’! 

Tinmum can’t touch her toes but she’s doing alright!

Badge of Dishonour

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I never saw myself as a member of the Blue Badge Brigade but here I am, literally with the scars to prove it.

It’s a necessity and a right I’ve earned just as much as anyone else ‘in the club’. You can’t acquire one easily, there’s a rigorous check to make sure you really are entitled to join up.

Fortunately we don’t have to wear the badges on a lanyard round our necks for all to see yet some days I feel like I should.

The last couple of days on the school run (now there’s a fucking laugh, I couldn’t run to the toilet even if I was on the brink of following through) I’ve had some people of a certain age shoot me looks of disgust, disapproval, mouth off and yell ‘it’s a disabled space’ and one even went so far as to ‘advise’ me on where I could park, right down to the line spacing. These old bastards are unbelievable!

I have the right to park there just as much as they do. They don’t know my story and I don’t know theirs, but I didn’t question their right to park in a disabled space like they did. Scrutinising my every move to see just how disabled I really was, waiting to see if I deserved my blue badge of honour. She probably thought I’d got it on the Blue Badge Black Market (yes, there really is such a thing).

Generally speaking I like old people, I even have a certificate from Help The Aged when I did a bring and buy stall and donated all the money to them. I was like seven, but it counts right? However, being elderly doesn’t mean you qualify for a badge simply down to date of birth. Yet some act like it does. I know the age-old adage (no pun intended) that “Old age doesn’t come alone’. I get that and respect that, but when you’ve had chronic pain for over thirty years yourself it’s not a joy to feel like you need to justify yourself to some geriatric who in my opinion should know better. Clearly ‘wisdom doesn’t come with age’ either.

Maybe if they didn’t all drive like snails on smack they’d get to these coveted golden squares a bit quicker. I swear I witnessed an old dear in a Nissan Micra drive along the road with her rear driver side door fully open. She was oblivious! Clearly, she’s never heard of mirrors or a blind spot, most likely she was as close to blind as she could get away with. I wouldn’t put it passed these OAP’s.

It’s a sad day when disabled people are fighting over spaces like holidaymakers fight over sunbeds. When disabled people discriminate against their own to see which end of the spectrum they’re on. Surely being anywhere on it is bad enough, isn’t that enough?

It brings up a lot of feels, so many feelings. Which is why on one such occasion after being shot a dirty look as I left a disabled space – just a little later than she’d have liked. I followed this dithering driver to another car park and watched her quest in action. I flashed my lights like a maniac and shoved my badge up high on the front windscreen window for her to see. Did she see it? Did she fuck! Unfortunately, and frustratingly she was just as blindly ignorant as the rest of them.

I’ll be back doing school ‘runs’ next week, so watch this space…

I Think I Need To Stop Overthinking

28D4A97D-4287-4E26-922E-57D914BD5519.pngDo you, do this?

Can I do this?
Should I do this?
When’s the right time to do this?
Is there a right time to do this?
Maybe it’s the wrong time to do this?
What if it’s too late to do this?
What if it’s too soon to do this?
What will happen if I do this?
What will happen if I don’t do this?
Will I make a mistake if I do this?
Will I succeed if I do this?
Is it just me that can’t do this?
Does anyone else do this?
Does everyone do this?
I’m not sure I can do this?
Should I go ahead and do this?
No, I can’t do this?
I can totally do this?
I really want to do this?
Why am I scared to do this?
It’s too hard to do this?
What if I never do this?
I will do this?
I won’t do this?
I have to do this?
Before I can’t do this.

– @tin_mum

Taking the Piss!

It’s not easy living with people with penises.

I’m outnumbered by ‘winkies’ in this house, it’s only 2:1 but it’s not much fun in the bathroom department. Now we have a fully confident bottom wiper who likes to do his ‘thing’ in private day or night it’s proving increasingly difficult to monitor splash back or when his aim game is way off the mark (which happens A LOT)!

What really pisses me off (pun intended) is the nightly game of toilet seat roulette. When I’m bursting for a pee and can’t be arsed getting out of bed to go to the loo in the dark not knowing what awaits me when I get there. But needs must so the journey begins…

I wall walk in the dark, not because I’m in unfamiliar surroundings but because my hip is dodgy and I’d deck it in the darkness otherwise. My eye sights shit too so it’s wall walk for the win!  Literally like the walking dead around here!

I get to the loo safely having successfully gone undetected passed the open bedroom door of penis #2. He sometimes shoots up like a meerkat demanding to know what’s going on at 3am. I can’t even take a piss in peace no matter what time of day or night it is.

Yassss! With the help of the hall light I can make out that the toilet seat is still down. I’m in first place piss heaven! I continue on with the task in hand, sitting on the loo I find it both cold and soaked in piss, ‘fuck sake’ I mutter as my butt cheeks make the connection to my brain that I’m now tainted. Like that’ s not bad enough I then feel my foot hit something wet on the floor and yes that too is now also soaked in piss, even the bottom of my pj trousers need wringing out. What are these people? Racehorses? Blind?

I continue on in resentful silence and think about a revenge flush but knowing that’ll backfire and wake up penis #2 and not penis #1 as intended I decide against it.

Seething with rage I wall walk trouser-less back to the bedroom leaving my sodden pj bottoms on the bathroom floor in disgust.

The morning comes as it always does, this time little love runs in demanding to know why my jammy bottoms are on the bathroom floor and has the cheek to ask if I’ve had an accident.

I indignantly say I did not have an accident all the while thinking that I may as well have just pissed the bed since at least I would’ve stayed nice and warm!

It’s not hip’pening!

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At last a reprieve! I am no longer living in fear of more serious surgery (well not for a while). At least 5- 10 years to be vaguely precise. I saw the hip guy last month and he reckons I suck it up for a while, ditch the idea of a Pelvic Osteotomy (PAO) and go for a Total Hip Replacement (THR) later on in life. Well if it’s good enough for my mammy…

I wasn’t exactly keen on having my pelvis broken and reset with screws but I knew after those fifteen hours on the table, rib removal and double spinal fusion I could handle it. But could I handle being away from my son, the isolation, the vulnerability of being a dependant, the intense pain, the rehab, the meds, the med withdrawals and the long term trauma to body and mind? Fuck no! If I had to, I could but I’m so glad I don’t (for now).

To begin with I felt pretty fobbed off that I’d have to accept this pain for many more years to come but I can see the benefit of holding on to my own hip for as long as possible. A THR will only last so long and I’m still fairly young. So here’s to hip dysplasia for the foreseeable but hey at least I can stay on the good meds!

 

Done at One?

The feelings are so changeable I can’t even keep up with myself. The daily thought spins around inside my head like a washing machine on steroids. My heart tells me one thing and my head says another whilst my body literally wants to shut up shop. Some days it’s a positive, some days ‘it’s a no from me’ and other days (most days) I simply don’t have an answer to the biggest question of the moment. Am I done at one?

Will I have another baby? Not just any baby but an HG baby? Because there’s an 86% chance that’s exactly what I’ll have.

I always imagined being a mum of two, it’s a nice even number and I like things to be ‘just so’. However it feels like a slight on my womanhood that I didn’t have a nice ‘normal’ pregnancy, that I even appeared allergic to it and most likely will be again. It’s little wonder that in different circumstances I wouldn’t even think twice. I would love nothing more than the free choice to try and create a sibling for my little HG hero without the threat of HG hanging over me, but because of what I’ve faced, knowing what could await me, it would be easier to wrestle a tiger. As one of the 1-1.5% of women to endure severe HG this is not an exaggeration (okay, maybe ever so slightly). It’s not a simple decision to make and the stigma of HG as a mentally inflicted illness or a women’s weakness is devastating and only goes to show how desperately misunderstood this serious medical condition is. Now there’s hope in the light of new research that a blood-borne protein, growth differentiation (GDF15) could be the cause of HG and other nausea and vomiting issues in pregnancy. I’m no scientist but I love this recent development and GDF15 I now affectionally call ‘Great Development Fuck-yeah!’ If there’s a cause then there can be a cure.

I descended into HG hell at 6 weeks and lingered there until the day I delivered. I lived to tell the tale but the memories of that time have stayed with me to this day and factor highly in this risky game of decision making.

Einstein’s definition of insanity states doing the same thing over and over again and expecting different results. This really resonates and I fear I might be insane or end up there if I embarked on another HG journey. A journey which takes its toll on everyone and not just me. I now have a dependant who would miss his mummy because his mummy could literally be sick day and night and can’t do all the lovely comforting things that mummy has always done because mummy might be in hospital again! These thoughts alone give me the chills and are enough to throw in the towel. Then there’s the husband who is also left with HG scars to heal from first time around. It’s not easy for men to feel so helpless and watch the women they love suffer so much on the daily and if it was anything like last time I’d be off work, need round the clock care and sadly the practicalities of cost bear heavy on my mind. I would never put a price on a child’s head but I need to keep a roof over ours!

But then wouldn’t it all be worth it? The sacrifice, the struggles if it meant completing our family, giving our son the gift of a sibling, a friend for life to share moments and make memories with?

I know the answers to these questions yet I also know the same to be true when asking myself if I can cope physically and mentally with the debilitation of an HG pregnancy? If my husband could bear to witness it all again this time with my son in tow? What would be the impact on them and the collateral damage during round two? Could any of us handle it?

All this is enough to sway me into the ‘no zone’ but the thing is, I hate to be defeated. I never like to give in or be told I can’t do something but I think HG has broken me and I ought to just wave the white flag. At least this is how I feel today, ask me tomorrow and I could tell you that nine months of HG is a small price to pay for the greatest gift of all. And so the mind keeps racing, the daily heart versus head battle rages on and the old biological clock is ticking now too and yet I still can’t decide if I’m done at one. Maybe I should just toss a coin and hope for the best.

 

To be judged

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Whether it’s family, friends, colleagues, neighbours, the school gate brigade or the nosey bastard behind you eyeballing your food shop as you frantically throw everything (yes everything) on the moving conveyor belt – there will be judgement. In some shape or form, be it mild or malicious it is becoming so apparent in today’s society that everyone is judging everybody else!
It could be your hair, your clothes, your car, where you live, your career choices, how you parent, where you shop, where your kids go to school, where you holiday, (if you holiday) the list goes on. It’s a shit state of affairs but it’s happening and the thing that really sucks is how bad people are at it. Yeah judge, judge on Judy but don’t do the ‘eye roll, the sly look, or the disapproving tut. Go away and judge in private behind those twitchy curtains and feel free to think the thoughts, just don’t put them out there, don’t verbalise your venom or send those judgey vibes out into the atmosphere because they are toxic, they taint you and you can’t take them back. Some people are better at judging than others. Some have the tact, diplomacy and humanity to do it on the down low then move the fuck on with their own lives. Others, sadly not so much.
Is judging just human nature? I don’t actually know the answer to that and I’m not gonna lie and say I have never nor never will be a judger myself but what I can say is that I truly wouldn’t want to hurt someone’s feelings, to make them feel they had to justify their life choices or that their decisions weren’t good enough or the right ones.
What I do believe now more than ever is that we all need to cut ourselves and each other some slack and show more compassion. Most people (myself included) are fighting battles people know nothing about and although we may slap on the war paint and smile on the outside there will certainly be a lot more going on behind the scenes. We are all simply doing the best we can, but if doing the best we can isn’t good enough for some people then they can go and jog the fuck on, all the way back to their ivory tower.

Not judging

Just sayin’ 😉