its been some time since i was last on here ..... - Headway

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its been some time since i was last on here .....

wirralt profile image
8 Replies

just thought i would share where i am up to now , i had a subharacnoid brain heamorhage ( can no longer spell and write dyslexic when tiered ) and coil procedure on 3 annurisms 18 months ago .

after my release from hospital 9 days later with a bag of pill and a cheerio i was waved off terrified.

my wonderful partner was also terrified as he had usd all his holidays so had only 1 week left before he had to return to work .

so there i was home alone ...... i cried and cried for hours then stumbled across headway website and sent a very emotional email within 5 mins my phone was ringing hi its alex from headway how are you can we help !!! cutting a long story short the following tues i took a taxi to my nearest group which turned my life around . i wont go on too much but in 18 months i have been going twice a week eventually becoming a volunteer and managing to cook a meal for our thursday group on a regular basis ( i used to be a cook ) however its not always easy so my partner helps if i need it. i thought hey im all better so i took a part time job cleaning 6hrs a week and stuck at it for 10 months going home in agony headaches completely shattered and very tearful until I REALISED !!!! im no where near better i can not do this and trying is making me very ill . i still volunteer and go to both headway groups every week dont know where id be without them :) but i dont and i cant work my point being i had to prove this to myself and work out for myself that part of me has gone and yes i have begun now to grieve if you like the loss of my old self.

i am very lucky my partner loves me as i do him ans is very understanding of my symptoms i have very high blood pressure so have tablets for that also antidepressants (im not depressed) as mood levelers i cry a lot sometimes and my latest problem which im finding really hard is panic attacks so on meds for that too, suffer dizziness and headaches a lot and short term memory loss but i thank god im alive every day and dont know where i would be without my man.

just wanted to share this and say i thought i was better and i am better than i was but dont feel i will ever be as well as i used to be so am trying to accept it :) thanks for reading

best wishes Tracy xx

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wirralt profile image
wirralt
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8 Replies
bikerlifestyle profile image
bikerlifestyle

welcome to the site, don't worry about the spelling, google will fix it for you, google makes all of us sound legible lol

its so easy to fall into the trap of over committing ourselves and realising we just aren't the same as we once was

i have been attending headway too and its made a massive difference to my life

wirralt profile image
wirralt

hi thanks for your reply bikerlifestyle love my headway :) i have finally come to terms with the fact that i cant do too much nowadays so am finding ways to enjoy my free time as much as posible getting kinda good at it now too :)

Molly15 profile image
Molly15

Good morning Wirralt

I sympathise so much with you, and completely understand all you say in your post. My husband had his sub arachnoid haemorrhage (thank goodness for spell checker!) in October last year, nearly 5 months in hospital followed and a number of other medical problems arose. But a year on, he is doing so well, making such good progress, but he suffers all of the problems you mention. Extreme tiredness, very low moods, constant crying, headaches and dizziness, and poor balance. We have recently moved from Yorkshire to Leicestershire, and have been in touch with our local Headway in the last couple of days, and have found a wealth of information and help. Leicestershire is so lucky to have a Headway Day Centre, and we are hoping Steve can get a placement to attend for one or two days a week to improve his mobility, confidence, dexterity and emotions.

You are so lucky to have such an understanding partner too. I love my husband very much, but am the first to admit all of this has been so difficult to cope with. I am his only carer, and its a full time job. Sadly Steve has suffered 7 tonic clonic seizures since his discharge from hospital, which are devastating and so frightening. We now live day to day waiting for the next one, which impacts on our lives so much. We know its only a matter of time until the doctors find the right level of medication to stop these awful things, but in the meantime expecting it all to happen again spoils our lives so much.

Keep up the good work, all of this takes such a long time, everyone keeps telling us it can be years until we see any sort of return to our former lives, but we have to be positive and believe it will come.

Very best wishes to you, Molly

headinjuryhypo profile image
headinjuryhypo in reply toMolly15

Wirralt and Molly15, I just wanted to draw your attention to this systematic review covering subarachnoid haemorrhage and brain injury survivors bit.ly/1cvWe6w It says SAH survivors have a whopping 47% chance of suffering pituitary damage. One of the possible effects is growth hormone deficiency which can cause depression and cognitive problems - and replacing the GH can make people happy and clear-headed again. See bit.ly/17Rta9N (interesting patient story). Another is ACTH deficiency (ACTH stimulates the adrenals) and this can cause extreme fatigue, and again, replacement helps. If Molly15's husband and Wirralt get themselves checked for this and it makes a difference I would be so delighted. But be cautious about the tests that your GP suggests - research them first - or contact me via our website headinjuryhypo.org.uk

wirralt profile image
wirralt in reply toheadinjuryhypo

hi and thankyou i gained 2stone in 6 weeks and am unable to shift it no matter how i try ( and i do try so hard ) i am seeing a dr at aintree hospital who has done several different blood tests and told me on my last appointment told me my growth hormone tests showed i had been affected i see him again in jan and he is supposed to be organising some kind of hrt for me its just taking such a long time to get anywhere . will check out your links and keep you informed of any progress . thank you so much :)

headinjuryhypo profile image
headinjuryhypo in reply towirralt

I'm so glad they seem to be recognizing the GHD possibility, and I do hope the therapy happens soon. Yes please do tell me about any progress!

wirralt profile image
wirralt

thank you molly and steve i really hope he gets a place in your local headway group because they have helped me in so many ways since i joined can`t praise them enough hopefully they will find the correct level of medication for steve really soon i know how frightening it is to be constantly worried when the next episode will hit, and where you will be when it does.

i suppose its one of those where worrying about it doesn`t help either i know i have panicked just about everywhere and then find myself apologising to everyone around me for getting into such a state !!!!

i hope you both manage to have some fun times too in and around all the chaos this type of illness creates.

wishing you both all the very best . Tracy x

pollyanne profile image
pollyanne

hi Wirralt, I also met Alex from Headway around about the same time and she was amazing and helped us so much.My OH also suffers with the dyslexia/aphasia/balance issues but as you say he too is just glad that he is still alive. He tends to think he is pretty much stuck with it all now and we have researched lots of things to address the problems but what he does find helpful is going back to college doing adult literacy and numeracy (there are different classes for different levels) and it helps him socialise as well! Best of Luck and stay strong and motivated! x

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