Finding my feet.

[Gaia_rising]

Oh, look, there they are, on the ends of my legs.

The sarcasm bit of my brain's still working, then. 15 months since the brain haemorrhage, and about 2 months since the other round of brain surgery, to correct one of the other aneurysms they found while they were rooting about in there. I've had my mandatory reconsider request for PIP declined, because most of the time, I'm highly functional, and my neuro-psych has discharged me, because I knew all the tricks already, I just wasn't applying them. I've put myself back into that calm state where I was right at the start, because, after the year I've had, if I carry on trying to be a Pound-Shop WonderWoman, I'm going to break something, and I really, really don't want it to be my brain.

I've taught myself to become more patient, which is really flipping hard, with frontal-lobe damage. Two old ladies on the bus today were complaining that I was standing in the wheelchair bay, and that was for 'the disabled'. Heads up, grannies, I am disabled, and if a wheelchair used had wanted to alight, I would have moved. Might even have asked you, ever so nicely, to take your shopping bags off the seats, so people wouldn't have to stand...

I'm not storming out of the office like a tantrum-ing toddler every time SHE slurps her tea, or every time the grown bloody women I work with talk about using laxatives, or moving their bathroom scales to a different bit of floor... (Really sore point there, I've been consistently under nine stones since December, at 5' 9", that's not good.)

Work's undergoing some pretty major restructuring, and it would appear that I'm in a position where I'll need to apply for the half of my job I actually want, because they've decided it's too much for one person to do alone, and left me with the crappy end, advertising the more intensive, productive end.

The boy is doing fine, we went to see Eddie Izzard last night, which was one hell of an adventure, when one of us has a brain injury, and the other some pretty intense social anxieties.

The husband doesn't live here any more, I asked him to leave, and, the day after I came home from hospital after my last surgery, he did.

What I'm waffling around is that I've accepted that sometimes my vision blurs, but it always comes back. I've accepted that 'other' people forget what they've opened the fridge for, as well. I've accepted that I can't be as physical in my job as I used to be, until I build back some of my muscle-tone. I've accepted that very few people know what living with a brain injury is actually like, and even those of us who have ABI can present in markedly different ways. I'm 40 next year, the boy goes away to Uni later this year, and I am, for the first time in my adult life, free to do as I please. Quietly, sensibly, and with my shoes on the right feet.

[Lazuli]

Thank you for the update, Gaia. I had been concerned that we hadn't heard from you much following your more recent surgery. I do appreciate your sarcastic wit. That's what makes you YOU. It sounds as if you are working out your own coping strategies for the bus-riding nosy-bodies and the tea slurpers of this world, annoyances we all have to put up with but are more of a challenge for anyone with a BI.

I was driving my daughter to work this morning. Daughter had her licence revoked following a disability driving assessment so I now don the chauffeur's cap. We were stopped at a traffic light. In front of us was little miss economy car driver pushing buttons on her sat nav positioned so it obstructed her driving view. Predictably she was oblivious when the light turned green, carrying on with her screen selections. I nearly lost it when she started looking at the alphabetised search function. However I waited patiently for her to twig it was time to go. My daughter on the other hand was squirming, tutting and fuming, temper going from naught to 60 in a heartbeat. Bless.

[Elenor3]

Great to read your update and great to know we're not alone. xx

[MXman]

Hi Gaia, Loved your humorous post. Sarcasm is the spice of life and mine is running on full steam, keeps us going doesn't it. Im so pleased you have found your feet as mine go missing occasionally so I know what you mean. God Bless and have a fantastic Thursday. Nick XX

[Gaia_rising in reply to MXman]

I'm a natural animal, so I have to do what nature does, and adapt. I'm not saying there haven't been utterly terrifying moments of 'Oh no! What's that?', or periods of utter, bleak despair when I find a new limitation. It's been difficult reining in my naturally snarky nature from time to time, because of the 'What if people attribute that to the brain damage?', but, by and large, I've been no more of a monster than I was before.

There's a book in me, (full of fibre, books are, especially brown ones) but I need to strike the balance between my dark humour, and the fact that brain damage is not well understood, a bit of a taboo, and honestly can be scary. Coming to terms with what I have to work with, I have a shedload of experience of this process of adaptation, and, being the old hippie-witch that I am, I want to use that to help others find their feet. Not my feet, mind you, I have a 'thing' about feet, I'd be happier in a world where there was no need to contemplate feet, they're a bit icky.

Onwards and upwards, what was before is a road-map of how I got to 'here', and I don't have to go back 'there'.

[malalatete]

Hi Gaia. Was wondering how things were going.

Glad to hear things have been sorting themselves out - on all fronts by the sound of it.

How was the procedure? I am in next Tuesday. That's rather soon now...

Sounds like you have recovered well though. I mean, going out with shoes on the right feet and everything. I can manage that, but only just - or so it seems - but that is a whole other story.

Job situation sounds interesting too. Surely if they have split your existing role in 2 then there are either 2 posts which you could automatically be slotted into - and which should be a matter of negotiation - or there are 2 you can apply for through a competitive process? The way they have done things sounds like they have denied you the option to negotiate.

Anyhooo - good to hear from you again. Hope the eye settles x

[Gaia_rising in reply to malalatete]

The procedure was fine, I had a major 'stuck' panic on the morning I was due to go in, and an incredulous rage that they wanted me to take a pregnancy test before the surgery, but I wasn't as snappy as I was worried I might be. Knowing what was happening was a major part of it. I was admitted on the Tuesday, so they could ensure I was properly fasted, and not smoking, procedure on the Wednesday morning 'This mask on your face will start to make you feel sleepy'... then I woke up in the recovery bay, which seemed, at first, like the inside of a space-ship, with all the horrible lights, and monitors, and beepy-nonsense- loads of brilliant nurses doing GCS tests on however-many patients were in there, out of synch- "Do you know what day it is?", in surround-sound, every couple of minutes...

I was taken up to neuro-critical when a bed was available, they'd had to admit an emergency, so I was in the recovery bay for a few hours. Spent the rest of Wednesday on the critical ward, with the fantastic nurses being a bit perplexed as to why I wasn't badgering for painkillers after brain surgery. Thursday morning, I woke up at 4am, because that's what my head does now, and tried not to be a pest to the exhausted night shift. When the day-shift came on, the ward sister agreed to remove my various lines and tubes (No bladder catheter this time, praise be.), so I could wash and dress myself. I then perched on the end of my bloodstained bed (one of the nurses had mis-handled my arterial line taking a blood sample, and there was a bit of a Tarantino-film-style fountain.) like a ginger version of Paddington Bear, with my suitcase all packed ready to go... I was moved up to neuro-general just before lunchtime, and had my discharge notes in my hand at ten to five- then I went home.

Some vertigo, some visual disturbance, and occasional clanging headaches, but that seems to be settling down. I haven't had a full-blown brain fog since the surgery, but I have been exhausted, a month on aspirin after the surgery has upset my guts, so pretty much everything is making a rapid and undignified exit, I'm a bag of bones, so went to my GP yesterday, and he's ordered the full spectrum of blood (and stool) tests, to see if there's something organically wrong, or whether it's the anxiety/IBS thing again...

Work- good grief, if they'd consulted us before deciding on the changes, the atmosphere wouldn't be so bloody toxic, loads of us have had our roles re-defined, and I haven't seen a job description for what it currently says on my name badge for YEARS, so goodness knows what they think they're going to shoe-horn me into doing. I'll apply for the 'higher' half of my role, and I'll either be accepted to that post, or start a battle about which 'other' bits of the role fit my bizarre skill-set. I'm not done yet, I play dead a hell of a lot better than I roll over.

The domestic situation is much less stressful now, with him gone, I know there will be challenges, but I can change my own fuses, and catch my own spiders, the boy and I haven't set the house on fire, over-slept for school/work, or fallen down the stairs, so we're doing OK.

Long, waffly, 'me' post, sorry.

Hope all goes well next week.

[malalatete in reply to Gaia_rising]

No apols required - lovely to catch up. Gosh you came through well and quick - hurrah for that. I have been told to expect a couple of days on ICU then a couple of days on neuro general. I think they need to watch the flow diverter for a bit longer to make sure it is not clotting up. And of course there is the eye thing - as that half of the annie collapses in I may have visual problems. Wait and see...

But it sounds like potential after effects are just going to be 'more of the same' so like you I will just blunder on through it I guess. I could do with everything just 'passing through' for a wee while - I have a couple of stubborn pounds I would love to shift!

Hope all continues in an upward trend.

Blessings as always xx

[Gaia_rising in reply to malalatete]

Part of it is my inherent tenacity, and part of it is that I knew what was happening this time, so knew I needed to be calm, and quiet- still watchful for anything 'new', but not over-processing every tic and twinge. (Gods, the absolute relief when they asked me to wiggle my toes on the recovery bay, and I could!) They're specialists, and they're bloody good at what they do- the original surgeon wrote 'Home Friday, if well' on my notes, but the ward-sister and I had a discussion; I'd had two ibuprofen on the recovery bay, and then two paracetamol in neuro-critical, because the florescent lights were bothering my eyes. I was GCS 15 from the moment I roused from the anaesthetics, I didn't need 'nursing', and was occupying a bed someone else might need...

The weight-loss is an issue, I'm only just hovering in the 'underweight but healthy' zone of the arbitrary BMI chart, which DOES make it hard to work in an office where grown women regularly discuss using laxatives before slimming-world weigh-ins, we're supposed to be the role-models for the kids... my problem, not theirs.

Two more days of the half-term break, and I'm trying my level best to recharge (and over-feed myself) the boy and I are settling into 'our' routine, he's being perfectly adorable about the fact that, to preserve myself, I've effectively turned his life upside-down while he's doing his A-levels. He's resilient, and accepts the multiple factors, but I'm very conscious that the timing was atrocious.

All the best.