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Working/Volunteering - 2 & a half years post SAH/AVM

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Hi all - unfortunately I find I havent posted here on BTG since I was still in rehab hospital in 2010. Here's a (hopefully working!) link to my original post...


Please excuse any typo's - i now can only use one hand when typing and have lost quite a big chunk of vision in the left of both eyes so often miss letters :frown:

Ive now been out of hospital two years. Physio stopped pretty quickly after discharge so its all been down to me and I do my exercises at the gym when I can, although any slight cough or anything I get now floors me so that has to go on hold while im taking the exceptionally long time i need nowadays to recover! I

I was unable to return to my old job in dwp as they wanted me back pretty much straight away which i just coldnt do so i had to take a package. its seen us ok isn and although im still not able to do a regular type job - im hoping i will in time to come. Im building towards it but the physical loss, psychological loss, fatigue and loss of vision side of things (plus many more ill not list!) are making that difficult. About a year ago I set up my own photography business - having ound the time now to explore the things I love and interest me. I enjoy it immensely and have made a few sales but its only a very small sideline really. The problem there really is that I find the sales side of it excrutiatingly hard,; I've lost a lot of family/friends and subsequently confidence since the avm/sah.

What id like to do in the meantime is volunteering. Ive already applied to Brain & Spine (got a "we dont take/need volunteers, soz" reply from them - yeah, righto!) and headway which is a bit up in the air but really im getting nowhere! :( I'd like to help in the brain injury area as I have the empathy and experience but am open to most things. I'm also unable to do much 'physical' stuff but i can get around and mostly get by with just using one hand, but it obviously does have limitations. I still feel I have so much to offer.

Has anyone had similar problems or any ideas in what I can do? Any advice / help / anything would be appreciated! :confused::-D

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Hi Erin,

I am sorry you have had such a long tough road to go but it sounds like you are coming along pretty well. I am sure someone will come along an answer your question or give you some ideas. I am working my old job and it feels like I cut days off my life by pushing though it day after day. BUT I lose my health coverage so for now I have no choice_ yes, I live in the USA. LOL

I certainly would think I would be better suited to work only 10 -15 hours a week doing either piad work or volunteering. I still struggle with fatigue and a host of other issues that make working more difficult for me. So a limited amount of committment would be heaven in my world.

Anyway I enjoys your photos! Good Luck, mary

Edited by MaryB
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Hi Erin.

Sounds like you've had a rough old time of it.

Like you, I worked for the government (I'm surprised the DWP treated you like that), and they gave me a pay off just after my phased return.

There should be a local volunteer centre near by who could point you in the right direction. Failing that how about contacting your old neurological/rehab nurses? They could point you in the right direction.

In Coventry, near me, there is an organisation called The Val Hennessey Trust. I'm not sure if they are national but the provided me with loads of help & support after my SAH. You could try googling them?

How about a local church or community centre?

If you find yourself near a Jobcentre, ask to speak to a disabillity employment advisor, they might be able to help you.

I will say, though. When you do get back into work, please take it very slow and gentle otherwise you will wear yourself down and set your confidence back.

Seeing as you worked in the DWP, I wont go on about the 16 hour rule about being classed as full time.

Having said all of that, it sounds like you are doing really well & your typing is fine. Keep up the good work. Good luck.


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Hi Erin,

Sounds like you have had a tough time of it. I too felt a strong desire to 'give something back' and share my experiences with others but unfortunately hit a brick wall 'cos I did not have any medical qualifications.

However I spoke to my GP who suggested a voluntary service run by the local hospital called the Expert Patient Programme. It essentially provides an 8 to 10 week course for the long term sick advising on all aspects of recovery, including securing support from the medical professionals. I did not persue this as I needed paid employment and it was purely voluntary. Might be worthing seeing if you have anything similar in your area?

One cautionary note pointed out to me by my GP was that I would need to be prepared to handle and support the emotions of the long term ill and the effect it may have on me. Worth considering?

Good luck, hope you find something,


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:-D thank you all for your help and adice im going to make a list of all the suggestions tomorrow and google / look into them. It is scary oing this and id have to onky do a few hours at a time due to fatigue (hence volunteering) but i will look into all of this and see where i can go from there :) Thanks again everyone x
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