getting back to normal

[lorkinlaus]

Hi New to the site, 9 Weeks ago i suffered a subarachnoid haemorrhages and was releaslied from hospital 4 weeks ago and yesterday i got back on and rode my horse. But my whole family have gone nuts, whats peoples oppinions on getting back to a normal life as soon as possible x thanks xx

[Gaia_rising]

I'm a fine one to comment on this, because I rushed 'back to normal', and I'm paying the price now. Brief overview, I had a haemorrhage as a result of a ruptured aneurysm at the end of February 2015, and was back at work in April 2015. (*Scooby Doo voice over* Would have been sooner, if not for the Easter break.)

If I could go back, and do it again (apart from pushing my GP for scans, instead of just accepting different medication after a spate of 20+ migraines inside a month in October 2014...) I would have pushed harder for after-care, instead of assuming I'd just spontaneously 'get better' if I acted normal. Seek advice and follow it, then you know you're doing the right thing as safely as possible. (You're biting my head off, I can feel it, because that's what I would have done...) Brains are complicated bits of equipment, and they don't just 'get better', overnight, over weeks, or months, they take years. My family 'went nuts' when I went back to work, and I resented their 'fussy' insistence that I should stay at home, and watch TV, and eat cake, while I KNEW there was work piling on my desk. They only took that (somewhat insensitive) approach because they cared, and they were scared. They nearly 'lost' me (Dammit, I'm not a suitcase, or a stuffed toy on a train, or a dog-on-Facebook!), and 'keeping me close' was their way of trying to protect me. I don't do 'close', and I hate to be fussed-over.

Connect with your after-care providers, seek, and follow their advice, and then sit with your family, and explain that you lived through the haemorrhage, and intend to keep on living. (Don't do what I did, and try to keep all of the balls in the air at once, and HATE people for offering to make you a cup of tea, or asking you to make one for them.)

[Heidimaria1802 in reply to Gaia_rising]

Hi , I'm just shocked how you to return to work so quick ? Ive had a SAH in April and due the ruptured aneurysm and had stroke as well , I lost my speech, partially vision and aphasia including other conditions now but hard to learn everything again I keep my all to be better and try to 'normally'. Before ill I very fit 47 age and enjoyed mountains in Wales 😢 . Professionally people It so earlier still , but I imagine I'm working again , I ask if you mind you had a stroke as well ?

[Gaia_rising in reply to Heidimaria1802]

Hello, Heidimaria,

I went back to work so quickly because my job is strange, and nobody else there can do all of what I do, I was really concerned that parts of my job would be passed on to other people, and if I stayed off longer, I'd come back to a massive mess to untangle. (With 'new' cases landing on my desk, while I'd still be trying to unpick what had and hadn't been done on the existing ones.)

I started off initially on mornings-only, because I'm more alert and productive in the morning, but that was the only actual 'adjustment' my employers made, half-days, but the same caseload. I realised I couldn't actually work half-days, and was working from home in the afternoons by the end of the first week. After three attempts, I was re-called to see the consultant, who advised that, since I was managing to work, there was no reason not to increase my hours, and I returned full-time at the end of May.

I had the odd episode of fatigue at work, but managed to work-around it, either finding a quieter place to do some unimportant admin, or signing out and going home. I normalised the vast majority of the side-effects, the headaches, the visual disturbances, the vertigo, the HORRIBLE aphasia, and didn't say anything to anyone, because I was still in the 'irritable' stage. (Still am, and I can't cope with "Ooh, I have a headache too!", it makes me want to scream "Yes, but I had brain surgery!")

Physically, I didn't do too badly, I'm just waiting for a referral to opthalmology to see if there's anything that can be done about the visual disturbance, which started after the first surgery, and worsened after the second in March of this year. Cognitively, I thought I was doing OK, but I've never been 'tested' as such.

I've never had 'stroke' on my notes, some publications state that SAH is a type of stroke, and, effectively, the coils in my brain will be dead-space, similar to the scarring of starved tissues caused by a stroke.

All the best to you and yours as you continue your new life.

[Jennifer53 in reply to Gaia_rising]

I too rushed back to work. I had a stroke with a 40% chance of surviving that night. I fought my family and the doctors to return to "normal". I had to learn over time that the old me was never coming back but I had to learn and accept a new "normal". When people stopped trying to mind me I began to mind myself. I work part time now and have returned to college.

[Gaia_rising in reply to Jennifer53]

That's a really big part of it, Jennifer, the definition of 'normal', in the sense of 'back to normal'. My brain is never going to be 'normal', because it now has bits of metal in it, my brain is not the same, and nor am I. I'm off work sick at the moment, and that 'space' from hurtling everywhere at a million miles an hour, doing three people's jobs has given me time to reflect on how many things I work-around, that I used to take for granted.

I'm continuing in my on-going mission, to collect an imaginary stamp from pretty much every department in the hospital, it's my brain that's damaged, but the multi-systemic difficulties are vast, because the brain controls all of that 'other' functioning. I've had a couple of weeks of NOT running around with my pants outside my trousers, trying to be all things to all men, I don't think it would have helped me to stay 'off sick' longer at the very start, because I was still trying to work through what I could, and couldn't do. (Safely, most of the time.)

I do have some sympathy for my employers, because of the level of 'nobody knows' with brain injury, but, as my 'corporate parent', there's no justifiable way they should have had anyone doing three very complex roles at once, let alone someone who'd had three rounds of brain surgery in 18 months... It's a learning curve for all involved, and I WILL NOT allow another person to go through this, being told "We can't pay you full time, if you're not working full time." in the early-angry stages, was an absolute red rag to a bull.

Some of it is my fault, I couldn't stand the thought of half a day at work, and then half a day cleaning up other people's mess at home, because I was 'off', also, my hours had been reduced, but not my workload, so I was constantly playing catch-up.

[Heidimaria1802]

Congratulation on you speedy recovery , you seem getting better quicker , if you feel well go for it one life and enjoy 😃😃

[Mikey48]

My SAH was back in Dec 2015 and I have made an excellent recovery although I'm still left with an arthritic knee but that's getting sorted soon. I know what you mean about your family's concerns, mine family were the same. However, I've only ever done what I feel able to do which in the early stages of recovery wasn't much. Also, I had to remind myself that they had seen me at my worst when I collapsed and was in Intensive Care....a period I have no recollections of whatsoever. What I'm saying is it's understandable that they are concerned . Try and reassure them that you're only doing what you feel able to do.

[Jennifer53]

You are the only one who can set your limitations. Your family are scared of losing you so they want to wrap you in cotton wool. I found taking the middle ground made everyone happy until your family get over the shock of nearly losing you. You know what you are capable of but your family probably dont need to know everything you do. Follow your doctors advice and that will keep everyone happy.