First of all I am very lucky - I survived! Secondly - I have full physical function! Thirdly - I am blessed with an amazing family!
However, I am not who i believe I once was and have found it increasingly difficult to cope in a working office environment, the pressure, the responsibility, the 'social' etiquette and expectations and confrontational aspects are beating me. My ability to process and retain verbal information has deteriorated, this I think is destroying my confidence and self esteem. Memory is also an issue, as is extreme fatigue and frequent headaches.
My question is: is this to be expected/normal this far down the line? Should I not be improving? Can these symptoms be linked to the SAH or simply to age and the menopause?
Since I left hospital I have not received any support other than using the 'Behind the Gray' website for information. My GP diagnosed stress/anxiety but I need to understand the underlying cause! Is it possible to ask for a referral for neuro testing? I am not currently working but want and need to return, at least part-time.
Obviously, I am not able to give a full account of myself here but was wondering if anyone else has encountered the same or similar problems and can advise me? I am not an 'attention seeker' and have been trying to 'get on with it' but I can no longer avoid the changes.
Thanks
Written by
JHN62
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We understand you are not an attention seeker, the problems of BI survivors are many and varied. I am just pursuing counselling now 4 years on because I am having trouble living with the new me.
Apart from the fatigue my issues are mainly physical. The mind is willing and able but the body is weak.
Today I should have gone to a Tai Chi class which helps with my balance problems but because of heavy rain and gusty winds was unable to set out.
Pre BI that wouldn't have been a problem but now I even have to review the weather before undertaking anything.
Normality or whatever that is may never return to a BI survivor, at best, most of us get on with it, because the NHS scratches its head and looks on in amazement at how well we do.
Thank you for your response! Survivors like yourself are amazing and humbling, and part of the reason I have not made a 'fuss' as I am one of the lucky ones who has been able to lead a life that was pretty much as before - except for the mental health issues, I have nothing to complain about!! Just seems that I am sliding downhill & would like to stop before I crash at the bottom lol.
Your GP would need to make a referral for neuro psych testing so it would depend on their agreement to do so. But I think it sounds like a good idea as would highlight any specific difficulties you are experiencing. Unfortunately there is not good, if any, follow up and support for bi in many areas, it is a postcode lottery!
I will make an appointment for the GP asap! From what I have read there is an expected waiting list of 14months for an appointment so maybe I won't need it by then, who knows?!
I have also completed my online application for JSA today but still unsure how much of my mental health issues to declare as I can't prove or provide any evidence they exist. Seems the whole system goes in circles and never catches up with itself?
I'm 4&1/2 years on from a SAH and have experienced the issues you've listed from the outset. I did launch a 'This won't keep me down' campaign during the first months after discharge from hospital, but it proved unrealistic and short-lived.
But I've never heard of delayed effects such as you describe so I'm drawn to the menopause as the trigger. I know how those hormonal changes can cause havoc with one's physical and cognitive abilities, and perhaps this has intensified the existing vulnerability in your brain from the SAH.
After changing my GP I managed to get a referral to a neuro specialist and had my first appointment last week . It's the first time since the SAH that I feel I've been properly listened to !
So please ask your doctor for a referral (could be a 2/3 months wait at least) so you can see someone who has the time and expertise to offer a clearer diagnosis.
Thanks for your response! I perhaps didn't explain very well but although I have had these symptoms since the SAH they have worsened over the years - maybe I wasn't heeding them or in denial in order to continue with my 'normal' life but finally they overwhelmed me! I finally left my job in Oct as I couldn't cope or expect them to understand!
I do agree though, I suspect the menopause is contributing as many other women complain of similar issues. hey ho!
Either way, I need to be able to feel in control of my emotions & brain function to return to work?! I really don't want the GP to recommend pills again as I feel this is NOT the answer
I suffered SAH 15 years ago and since moving home and area 8 months ago (living by myself & my Chihuaua) I Am FINALLY Receiving Support/ Help/ Advice I Never Knew was "Out There" (And Accepting With Open Arms I Can Tell You).
A change of GP and an eventual accepting THIS IS ME NOW! Have helped Massively.
I Always explained my short term memory problems "as the result of my brain haemhorrage" and it wasn't until Discovering THIS Web Site/ Forum I t FINALLY Hit Me I had in fact suffered a BRAIN INJURY!
My GP referred me to an Occupational Therapist, Anne Lewis, who gave me the details for Head Way, Lincoln and yesterday I met the lovely Ann-Marie; And EVERYTHING Seems to be "Falling Into Place"
DON'T Give Up!
THERE IS "LIGHT AT THE END OF THE TUNNEL".
If you Don't Have One Already, ask your GP to refer you to an Occupational Therapist and Take It From There.
Thank you for your response Please may I ask if you have managed to return to work? Did you receive help/support from your GP? Did you contact your local Headway? I just feel that I will be labelled a 'hypochondriac' or making excuses - so am finding it difficult to ask for advice
As others have stated, nobody thinks you are 'attention seeking'. The difficulties that many of us face, and a great number of us mask, as not to cause offence, or draw attention, are very common.
I think that your whole question is "Shouldn't I be BETTER by now?", and that's the big unknown with a Brain Injury, how much will return, and how similar to the previous incarnation will it be? I haven't been fully assessed, I'm 18 months post SAH, and six months post the surgery to coil an incidental aneurysm they found while they were in there. (There's a third, currently inoperable, mostly I try not to dwell on that one.) I KNOW which of my behaviours and such have changed, and mostly remove-myself from other people when I know they're going to potentially cause issues. (The behaviours and such, nobody knows what other people are likely to do.)
Please don't think it's 'too late' to ask for help, or assessment, in fact, your brain now is probably as settled as it's going to be, you're working with a 'finished' model as it were, rather than the work-in-progress I'll probably be arguing with for the next 18 months or so. That's not to say that the hormonal element isn't a 'new' factor, I've recently put a menstrual cycle 'tracker' app on my phone, so I can check-in and reassure myself that I'm NOT having a psychotic episode, or about to go on a murder-spree, it's just our old favourite 'Week 3 of 4.'
Hang in there, ask your GP for a Neuro-psych referral, because the vast majority of your issues WILL be related to the Brain Injury, and there WILL be work-arounds, and allowances that will suit you as an individual.
Steve & Gaia_rising many thanks for your replies & offers of help - fact is I'm not sure what I need (some would suggest a firm kick up the backside?!) I need to return to work mainly for financial reasons, I left my previous job as an Advisor/Administrator in a large well-known credit card company, in October. I have been walking dogs to earn some cash & loved being outdoors, with no-one but the canine company but even that has become physically challenging & cannot continue as a business without more investment (time & money!) which I don't believe I can give. I know I am simply avoiding human contact and situations where I will have a 'meltdown' so am becoming more of a recluse - it all seems like too much effort! The thought of returning to an office environment terrifies me for a multitude of reasons, all of which sound absurd when I tell anyone!
My GP has done various blood tests & I am not 'deficient in anything, he is keen to label me as depressed/anxious (maybe I am?!) but I do not want to go back on the Citalopram as I don't feel this really helped - I have been pill-free for months now & don't feel better or worse. I just physically and mentally crash after any activity (social or physical) so a weekend or day visiting relatives or friends usually results in a day when I just want to stay in bed & sleep, no interaction or food! I usually manage to 'fake' my way through with people, putting on a mask of someone enjoying themselves but even that is becoming more difficult & I would rather stay at home on my own......I try to self-analyse which perhaps is my downfall but ultimately I lose patience with even myself! I hate myself for being so miserable as I know I have so, so much to be thankful for but just can't be bothered anymore. Pathetic!!
I did try emailing our local Headway but have had no response & just can't bring myself to pick up the phone - so much easier when it's 'faceless'
Hi all and thank you for your replies & support - a quick update!
I finally managed to see my GP as I have now developed Rosecea (likely due to stress & menopause) but he did agree to refer me to see a neurologist so hopefully the ball is rolling there?! I have had to 'sign on' JSA and have been applying for jobs & even had an interview this week - have to admit I have severe doubts I will even cope with a work environment at present and as we are moving house this week am feeling pretty overwhelmed just now! My fear now is that if I were to be offered the job I would have to turn it down as it is likely I would be living too far to want to commute for a part time position (will be in temp accommodation with family until we find a permanent house!)
Its all so confusing, I can't order my thoughts and feel my insides are constantly 'fizzing'.......
jhn62 found you after you said your daughter lives in dubai.
as far as the medical world are concerned youve got to be a pain in the ass or they will just brush you off with excuses.
ive got a great gp who referred me to a psychiatrist because my wife couldnt cope with my mood swings, if i need to see him its the last appointment of the day day, so my wife can come with me after work. he sits and listens and anything he doesnt understand he asks.......
Hi Steve55, sorry didn't mean to appear like a stalker - I was just reading through some posts, that I felt may be relevant to me, and came across yours! Thank you for taking the time to respond 😊
I have not heard anything regarding my neurology appointment but I have been offered the job. It's 3 full days a week, admin based with a small 'family' business, my mind is swinging between panic & anticipation at the prospect! They are aware I may possibly be moving out of area so I feel I have to 'give it a go' I still haven't contacted Headway as I am unsure what help/support I could ask for or they could offer?
My daughter has just returned to Dubai after spending the summer with us in the UK and am missing her unjudgenental company but will be visiting her at Xmas.
jhn62 my daughters over in a couple of weeks for her aunts wedding and again at christmas only because her partners friend is getting married in ireland.
we live in west sussex but she doesnt want to have xmas just the 4 of us because that will be boring.......i think what she plans to is rent in londond have lunch then bugger off and meet her mates.
Oh Steve, the impatience of youth!! How old us your daughter & how long has she been in Dubai? I expect like my lot (my two sons are in Dubai too!) she wants to see everyone she can in a flying visit? Their time is so precious to them to "waste" entertaining the old folks haha!! However, I wouldn't want to spend my time travelling to London at Xmas for a quick lunch 😏 Have you been able to visit Dubai?
jnh62 ive been to dubai 3 times, one a year after my stroke, it ended up my wife and i speding xmas on our own because since my stroke i have a fear of strangers and just before i left i had an appointment with my psychiatrist, wouldve meant spending xmas with 19 people i didnt know
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