There was an old lady who swallowed a fly. OK, I'm 39, and I'm not so much swallowing flies, as trying to juggle medical appointments. In about half an hour, I'm going to start the mammoth bus journey to the city hospital, for the ophthalmology appointment my Consultant Neurosurgeon referred me for, after I badgered his secretary, because my GP didn't grasp that it needed to be neuro-ophthalmology...
This is after a letter popped onto my doormat yesterday afternoon, saying that my Occupational Health assessment had been brought forward to today- so I had to phone them, and explain that I had a clash.
That's after I had to phone the local hospital, and advise them that I wouldn't be able to make it to their ophthalmology appointment, referred by my GP, because it clashed with the original date of the Occupational Health assessment.
*Breathe*
Today, city hospital, Friday, my GP, for an extension of my sick note, next week I 'only' have endoscopy so far, then, the week after, two appointments.
Just whinging because there is, yet again, no central point of co-ordination for appointments, no communication between departments, and I have to 'change' my mobile number EVERY time I speak to a different department, because the centrally-held record has a mobile I haven't used since about 2010...
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If my hair wasn't already falling out, I'd be pulling it out!
Arrived at the big hospital, no actual appointment letter, because I only phoned on Monday... Go to 'that' desk, who then diverted me to another desk, where the receptionist advised I had one Ophthalmology appointment, and one Neurology, and asked me to wait. The Ophthalmology man said he'd check, because there were no notes on his notes about follow-up... No, just Ophthalmology 'visual fields' tests... my visual fields are FINE, because I over-compensate, which leads to some of the headaches. "Yes, there's no deficit in your visual field." I KNOW!
So, now I have a stinker of a headache from 'scanning' for the dots on the visual field test, without actually moving my head or eyes, and I'm still going to have to go for the other eye test at the local hospital.
I get that the NHS is free, and that if I lived in the USA for example, I wouldn't be having all these tests. (Which, in all fairness are likely to come to the conclusion that all the visual disturbances are just something I'm going to have to live with...) I just DON'T get how none of the departments seem to be 'linked', other than all having the wrong mobile phone number and religion listed for me.
Rant over, apart from a seething frustration that, as my eyes appear structurally fine, I'll probably end up with ANOTHER appointment for Neurology...
...There you go, Occupational Health just phoned, with another 'cancellation' (As my employers REALLY want rid of me, sooner, rather than later... if there's nothing 'wrong' with me, I'm dismissed for misconduct, as I made two mistakes during the 3 months after my last round of brain surgery, when I was carrying 3 people's jobs at once.), next week, the day before the colonoscopy, which is the day before the landlord's inspection, on the house I won't be able to afford...
Hey ho, another part of my life is 'lost', in that I'll never be able to work in education or child protection again, and will most likely need to take on two unskilled jobs, just to pay my bills, because I'm not disabled 'enough' for PIP.
I'm having to put in sick notes because I'm 'technically' still employed, until the disciplinary hearing goes ahead. (At some point after the Occupational Health assessment.) I'm frustrated at juggling all of these medical appointments, but know I need them all, brain injuries aren't a 'quick fix'. I'm sort-of hanging on the OH giving me some sort of guidance on what I can/can't do, and, if they provide evidence of my disability, I'll put in another PIP claim.
I'm just venting, I have an idea of what I need to do, but this forum is the one place where nobody says "Go to bed earlier!" when I mention fatigue, or "Have some paracetamol!" when I have a headache-spike. The world is all about quick-fix, and adapting to a BI isn't quick, I'm still within that fabled '2 year' window I keep reading about...
gaia fatigue you want to show this to your oh, another thing for her to learn from a person who knows because he has a brain injury,
ok here goes. to avoid fatigue a person with a brain injury must ensure they dont over do things, so , if they work in the morning, then they rest in the afternoon, eveningand the following morning before doing any further work that afternoon.
hope that clears things up for you. your oh should know this any way
Let's rewind. Did you get your MRI results yet ? ( You may have already said elsewhere but I might have missed/ forgotten it ) I still haven't heard about mine yet.
So you've had an SAH, due to a ruptured aneurism, which was coiled, then a further surgery to coil another, with one remaining on watch and wait ? ( I so hope I've got this right ! )
So you have every reason to have repercussions from all this, brain function wise. Even if your eyes are structurally sound, the way your brain is interpreting the visual information may not be. What ( and please be absolutely honest with yourself ! ) besides the obvious fatigue and visual issues, would you say your other deficits are ? ( I'm thinking maybe reduced capacity to multitask, hypersensitivity, perhaps some residual physical issues etc? ) Perhaps you could make ( an utterly honest, no matter how trivial they may seem to you ) list of these. You may be surprised by what a profound effect multiple deficits can have on every day functioning.
I don't even have a 'proper' diagnosis as yet ( unless you count the awesome 'Functional Neurological Symptoms' I was put down as first time round 'joke' ) yet based on my abilities, I qualified for PIP. You have the concrete evidence of SAH and 2 surgeries behind you. Did you have a neuro psychology assessment - what did the report say/ could it be useful evidence ?
It sucks that work are being so pushy ( mine were aggressive too, suggesting I should be chasing up daily/ being demanding enough to hurry the process along and 'get a diagnosis', as if the slowness of the overloaded NHS system was somehow my fault ! They even hinted at me going private at one point - with what ? ! ) I think that 'reasonable adjustments' in your case would be lightening the load, so possibly a reduction in hours and pay, which does open up the question of benefits. There were no reasonable adjustments in my case, being as it was a physically demanding role that I could no longer meet to health and safety standards and no alternative vacancies ( They were looking to make redundancies soon anyway, unfortunately I presented as the perfect candidate to be culled early, due to my untimely relapse ! ) I settled for mutual termination but not until I stuck pressure from work out for nearly 6 months on sick pay and was satisfied that I'd given myself sufficient time to realise that my improvement was not going to reach an adequate level in the time frame it had the first time round. It is a horrible feeling, being put under pressure when you are ill, desperately trying to 'force yourself better' and dealing with the new possibility of a degenerative condition. I couldn't pressure sick employees in that way - I'm simply not that heartless ! It's all ruthless figures and efficiency that drives industry these days.
If it comes to ' Hey, lad's, hey' ( as my partner loves to quote ! ) then maybe a less demanding role would be better for you in the long term - I know you love your work but do worry that you are burning yourself out, trying to maintain such enforced high and productive standards, long term. I've been in the unskilled sector all my life, as I worked the type of jobs that fitted around raising my son. I was capable of multiple cleaning/care jobs once upon a time and paid into the system, just like everyone else. Now it is my turn to be helped by the system, just as I previously helped those before me.
As a single lady ( now I have Beyonce in my head ! ) which you now are ( son has left home now, yes ? ) you should be entitled to some benefits if on low earnings.
Best of luck with the colonoscopy - I think you can have sedation if required ?
Try not to cross bridges before you come to them. I know you have a lot going on all at once but if you can separate each bit out and deal with one thing at a time, rather than mix it all together in one big pot, it can be easier to digest.
Take care and update when you're able,
Angela ( who went face down too early last night and is now wide awake at 4 AM ! ) x
I am already 'taking one step at a time'- the original frustrated post was to do with the appointments clashing. I know I need to get all of the individual 'bits' looked at, it's just annoying me that the various departments don't communicate especially well with each other. The 'visual fields' data will go back to my consultant. I haven't had the results from the last MRI, only had quick glance at the faxed-and-scanned letter from the consultant to my GP, which states that the coils are correctly positioned, and that the visual issues are unlikely to be related to the surgery, but that he'd refer me to ophthalmology anyway... I have chased the 'results' three times now, I've had nothing.
I did have two sessions with Neuro-psych, but there wasn't an 'assessment' as such, not a formal one at any rate, on the first visit we discussed the things I was having difficulties with, and, on the second, the strategies I had implemented. I had another of my "You're doing remarkably well!" responses, and he added that there wasn't very much else he could advise me on, because I was already implementing effective strategies. (That's where I'm 'not eligible' for PIP, because I 'can' do things, just not repeatedly, reliably, or within a reasonable time, BUT they're not interested in that...)
I need to pull an evidence-file for the OH assessment, to prove that I was seeking available medical attention, but I will also make a list of the difficulties, as you suggested. Nothing is as simple and straightforward as it used to be, everything takes additional adaptations now, and I've made a lot of them subconsciously- making sure I have my mobile charged, and with me at all times, even in the blooming bathroom!
Work want a quick resolution, but I'm afraid that's not going to happen. I can't allow myself to jump out of the frying pan and into the fire, with regard to just trying to find any available job to cover my bills, that's not safe for anyone. I'll speak with my union rep again next week (she's on holiday this week.), and we'll figure out best next-steps.
What a mess for you all these appointments but my hat off to you for managing to keep on top of it all.
I think all these departments not communicating is getting worse these days what with all the tick boxes and target achieving getting in the way of what the patient really needs .
I'm not so good at talking today so apologies for not being able to give your post the in depth reply it deserves. I read Angelas response and great advice in it if i may say so.
Glad you have some union support, do they have a regional officer who deals with disability./fairness at work tissues who could support also?
As for all the can do/cant do stuff. It is good to make a list. Depressing stuff doing it when you are trying to keep your head above water though, i know!
. Some things might look insignificant on their own but lots of things taken together form a pattern which can often give a bigger picture. E.g. notionally I can make a cup of coffee but would be totally unreliable as a waitress as my "coffee" sometimes is made of gravy granules ..... It looks very convincing till you taste it...
Have a look at the Benefits and Work web site also, not the government one, its an independent site, lots of info there on PIP if you can wade through and there is a forum also.
Just wanted to say that we are listening and willing you on, it is such a weight to get through as well as trying to do the best for ourselves all the red tape does not help a bit.
Will look in soon, hope things start to pull together for you. I'd offer you a cup of coffee but...
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Ok Ladies it is confirmed you do get PCS worse than us
I am new here and have a 37 year old son who is in hospital recovering from hypoxia 
New, Husband 26 yrs old, Critical in coma with Brain injuries after Hit & Run
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