Greg 21.01.15

Hi Chris Welcome to BTG, you have been give some superb advice by everyone above, I'm not sure there's a lot I can add. Everyone's story is unique to them and you will progress in your own time, patience is the thing I am told we need to learn! (I'm still learning!) My story is similar to you, venous bleed, treated with an EVD (unfortunately complicated with an infection ), luckily no shunt and discharged after three weeks in hospital. Exercise was a huge part of my life, it was no surprise I was in the gym when I had mine. The one story I'll share with you, which may or may not be pertinent for you. I had been itching to get back out on my push bike, and just under three months after I was discharged it was a beautiful spring day and I'd thought I'd go out for a ride. Just a little ride, 9 or 10 miles. It was great for about an hour after the ride till the fatigue set in and I was laid up for two days! That was my first encounter with a bad self induced fatigue attack, the moral of this for me was to build it up slowly, find those limits more gently, its less painful in the long run! One thing that has help me, I've managed to find a personal trainer to take me on for short focused sessions once a week, and she's been a god send. Allowed me to train reasonably hard but knowing that there is some one there keeping an eye on me, so i don't over do it. Good luck with the running when you get the all clear from your consultant, but in the meantime enjoy those walks. greg

Daffodil, so eloquent thank you. Gemma, you are on a similar time line to me so perhaps in a number of ways my thoughts are similar to yours. However, not quite a year in, I'm not sure if its delusional but I don't yet want to think what I may have lost. I will keep on trying things and see if they get better or easier (perhaps not too frequently). Back in early March a bought a ticket for a gig this December, and had to give it away. At the start o this journey I thought I would be OK by December, but this year not. I will buy another ticket when they come on sale next year, and we will see, I'm not quite ready to say good bye to that quite yet. I think one of the things that I have gained, is a perspective on all the really good friends and people locally that have come forward more in my life thanks of this SAH malarky. Anyway, I've side tracked myself. I logged in tonight as I wanted to wish everyone here all the best for 2016. This time last year I had no idea what SAH was, but in just 20 days that was all about to change. I've have had the fortune to meet a great bunch of people here at BTG drawn to gather through our experiences. I may not be a regular inputer to the discussions but the support both in just being able to read what other people are going through and in participating in some of the discussions has been some of the most important support over the past year. Here's to a happy and healthier 2016 for us all Cheers!

Hi Carolyn, Glad you liked the post, for me just 11 months into this journey it give me a lot to know I still have a long way to go yet. I accept your kind offer to join your caroling club, but I should warn you that my singing voice is not the best, I have yet to ever be complimented on my singing apart from to say that it is enthusiastic....... Tomorrow we have carols and lessons at beautiful old village church near us, so I will practice on behalf of the club! I wish all the best of the season, enjoy your lattes and chocolates. Greg.

Just thought I would share a link to a short interview with James Cracknel and his wife that was on the Jeremy Vine (BBC radio 2) show on Friday the 27th of November. A short ish piece (approach 69 minutes into the show; you can skip along to the appropriate bit): http://bbc.in/1lzdKRr It says it's got 12 days to run, but it should be there for longer... Background to this is that James Cracknel ex olympic rower (I think) acquired a brain injury when he was whacked in the back of head by a lorry while cycling in the US. There are a number of positive things in this story, but particularly the one for me right now, was how even three to five years out from the injury, he is still making significant improvements. It's different for all of us, and an SAH is different from a traumatic injury, nonetheless still encouraging so I thought I would share. greg

Yes getting the permission to drive is one thing, getting back the stamina to do it is another. Building it up very gently, keeping well within my limits

Thanks Win, I will heed your advice, and I'm sure it will work out. As a fall back position I had my OT session with Headway today and they said that if I need to appeal they will support me with the appeal, which is a great comfort. Headway are turning into a little bit of a life line right now, I have a very good and supportive OT lady.

I saw that message so many times, you have my sympathy. Soon, very soon, they can't sit on it for ever!

Fingers crossed for you Claire that it comes through soon. I was told that you can find out about the decision slightly sooner by keeping an eye on the online licence checker that they have had to introduce so you can share your details of licence with other people now they are doing away with the paper part of the licence. Here's a link: https://www.gov.uk/view-driving-licence Apparently this gets updated almost immediately whereas it takes a bit of time for them to produce the new card and then send it out to you. The only issue here is the temptation to be checking too frequently! Try to resist the temptation! Gemma, poor you, so annoying that your consultant didn't send the information through. I actually started the process with my GP, then filled in a questionnaire myself, and the last part was the consultant. My consultants PA has been a complete star, and I think she keeps him very well organised. Well done re the access to work, I wasn't able to get any funds from them, as unless I was not going got be able to drive for a year or it be reasonably expected that I wouldn't be able for that period of time then, no go. Good luck to you both, fingers crossed for some early Christmas presents!

Thanks All (Macca, Super M, Carolyn and Gemma) for your advice it is all appreciated. Don't worry I'm not going to covertly record the meeting, I will ask them for this to be done (a job for tomorrow), and will request a copy of the report if it doesn't automatically get sent to me. Carolyn, my god, when I hear things like that, your medical bill, despite some of the flaws in our NHS I am so grateful we have it. It is so frustrating to know, as Macca highlighted this is all about trying to reduce the budget of the DWP. I am just a little surprised that they are bothering with me as I am still technically employed, I am as Gemma is, working with a number of people including OT to get back to work. It is just the contribution based ESA that I am receiving but in there days of financial crisis, I guess any money that can be saved. We started doing some other prep and research today. Thanks, there was some good advice there to go in knowing what you want to achieve, and how you are going to do it. Anyway, I'm not having the assessment till the 4th of December, so some time to prep and worry probably in equal measure! Thanks all again greg

Dear All, It's 10 months (actually to the day ) since I had my SAH, and I'm still not back at work. I am fortunate to have some income protection through work but part of it I have to claim from the DWP (department of work and pensions). Though initially they approved my claim I have now been requested to attend a face to face assessment (this was after completing a written health questionnaire). I am a little bit concerned about this as the limited experience we have of this via my brother in law who had a severe stroke is that they are not empathetic to brain injuries and the impact on our ability to work. I just wondered whether anyone else had been through this assessment recently, and had any advice or words of encouragement? I've been advised to audio record the session so I have a record of the discussion. Also my GP said not to be disheartened if my claim is rejected and that I should appeal as for a lot of folks this has a positive outcome. Wish me luck! Cheers

Dear All, Just thought I would post an update as I know the DVLA is a topic that gives many of us a lot of frustration. I have just got my licence back a coupe of weeks ago (whoopee!) and that was after being invited to reapply at the start of March this year. The wheels grind very slowly at the DVLA. A couple of things I thought I would share that may be a common theme or may just have been my experience. Once all my reports, the doctors, the consultants, had been sent through to the DVLA they did not mark my case for review till I chased them to see what was happening. This wasted approximately 5 weeks. My advice is chase them once you are fairly sure they have received all the information they have requested (I was in contact with both my GP and consultants PA so knew when documents had been sent through). It then got to 12-13 weeks after my case was marked for review and still nothing and no estimate from them as to when it would be reviewed. At this point i was 9-10 months post my SAH...... I then decided to write a formal complaint submitted through the DVLA website and within 7 days of that going in, I received my licence is the post. It may just be coincidence as they couldn't sit on it for ever, but I think the lesson, is pester, pester, pester. Good luck to anyone else re-applying for their licence

Hi Issy Welcome. Sorry to hear you've had an SAH, you are in good company here. I had my SAH this January, so still very much trying to make sense of things. Of all the support I have had post my SAH I have learnt the most here and is the place I turn when things are getting to me. The folks here are some of the most generous of spirit, and whether you just read the posts others have made (which I do more often) or poke your head above the parapet to ask advice or just vent then this is a perfect place for that. It's a journey on so many levels post SAH, everyone's journey is slightly different, but this place is a great place to help you do it with a bit more of a smile and not feel quite so alone greg.

HI Claire Just saw your message to Julian. I had the same kind of event as you both and I'm having some problems with short term memory. It wasn't great pre-SAH but it has got worse. For example today my mother in law rang up, and I had to admit to my wife when she got home that I'd forgotten the main point of her call. Partly as it wasn't earth shatteringly important so I didn't think to write it down....... I'm trying to do a fair amount of reading of scientific papers to help with prep for returning to work (whenever that might be) and as part of that I have to try to recall what I have just read, it isn't great I can tell you. I think I will need to be employing a few coping strategies there. Along with short term memory I have a small and some what amusing tendency now not to remember words, for example in a Sandwich shop the other day I wanted to say no cucumber, but for the life of me, all I could come up with was I don't want that green stuff and pointed! You got to laugh at times, as said above we now have an excuse! greg.

Julian I share your pain on this one. Just to add my tuppence worth to the discussion. I asked the DVLA to send a questionnaire to the hospital as my nuero specialist nurse said it was ridiculous I couldn't drive. Not quite as straight forward as that, first a letter from my GP to the DVLA, then a questionnaire for me to fill in and then, and only then did they send the consultant the questionnaire. I spoke with the hospital last week, and know that the DVLA have had the questionnaire back for about 2 weeks now. I'm not expecting a quick response, especially as the DVLA are in the process of moving from the two part licence to the card only. One thing to my great annoyance was that when I questioned the DVLA why my licence was suspended from a date that had no clinical relevance for me, I was informed that my licence was suspended from the date my case was processed and they weren't able to back date it!!!!!! I was livid! My EVD was removed early Feb '15, I got home mid Feb., and I didn't get around that promptly to informing the DVLA, I wasn't driving anyway, didn't see an issue, but from my experience it's important to do it ASAP. I am watching for the postman every day......

Gemma I felt exactly the same when I got out of hospital, just no conception of the timescales involved in neuro rehab, very kindly my boss hasn't reminded me of some of my earlier comments about plans to get back to work! Thanks for the Stowmarket tip, a bit of a hike from our side of Cambridge but if we need to its not beyond feasibility.

Hi Gemma I can't imagine standing in front of 30+ children at the best of times, let alone after an SAH so good luck with that! Wow you were offered three forms of rehab ( I appreciate you are having to wait on some of it). How things very from place to place, I guess this is what they call the post code lottery! It is really helpful hear what help other folks are getting. I'm seeing my GP this coming Friday and I have a few plans. I am lucky to have BUPA cover from work but it hasn't been much use so far, OT doesn't seem to be something that they do, but neuropsychologists, from a quick google search seems to be a different matter, so I will see if I can utilise this. The inability not to be able to plan and do so much is something I am having to learn not to frustrate me so much. The inability of my grey matter to do what i want it to at times and not to desert me when I need it the most is a pain, but could be so much worse. I think like Daffodil I should be able to flex work around the good and the bad days, work are being great by me, I do just worry that the looking healthy when I get back people will find it hard to realise all isn't as it was before this all kicks off. I have also the potential to be my own worst enemy here, and will have to be careful to pace things appropriately, we'll get there! Cheers all.

Kris, Thanks for your comments, some really useful things in there, especially with regards to OT versus Neuropsychologist. I am still hopeful that the hospital may be progressing something along this lines (there was no specific mention of OT) where as where I have been discussing with Headway we were talk about OT. So I will check that I am seeing the right people (if I ever get the chance to see anyone!!) At the start of all this and even at the point of discharge from the hospital I naively thought 2-3 three months I'll be back out there, on my feet if not fighting fit getting back there. I now have a very different view, though that said I have definitely progressed and I know compared to some folks I have been very lucky and am doing OK. However, it is good to know that progress can occur even up to two years out. Thanks for sharing that. Cheers all Greg.

Sharon, fingers crossed for the good MRI results. I had a CT scan a couple of weeks ago when I went for my check up and when I got the results they told me the ventricles in my brain were back to normal size. My first thought was no one had told me they weren't the right size in the first place It does help me to understand some of the physical impact on the grey stuff of all that happened and why things are now as they are. Carina, good luck with return to work when you get there, try to hold out to you are really ready. From everything that everyone here on BTG has said best to go back when you are really ready, and not have a false start. That said it's not always that straight forward. When I was in hospital there was a young guy in the bed next to me for a few days. He'd had a small stroke, and was recovering OK, but needed to get back to work as he had no sick pay, and was soon to run out of annual leave to cover his absence from work.What he really needed was quite a few weeks of recuperation. At that point I counted myself as lucky. Louise, good to know that things do keep on progressing past that six month point. I realise it won't be a hard and fast cut off. I pushed the neuro specialist nurse for some time frame as I was getting a little concerned that my progress was a rather slow. I will be pestering headway this week and my GP has offered to help chase up the hospital, so between us we will get there. Anyway, gives me something to do while I'm not working! Hope everyone has enjoyed the gorgeous weather this weekend. G

Thanks Win, I will I'm sure take you up on that, there's still a lot of this journey to go. As for Mr Sensible, something I will aspire to but not always promise to achieve! Sharlua, good luck with the return to work. You are doing great, your SAH was only two weeks prior to mine, so I'm impressed! Getting words stuck, is something I think a lot of us get caught out by, I know I do. At home its easy to make a joke about it, can appreciate at work, perhaps not so easy. Someone gave me what sounds like good advice with the phased return which was not to have a fixed schedule of increasing your hours, only increase them once you are good with what you are doing. Haven't got there, but some discussion with my occupation health lady has suggested that this is what we will do when I do come back. As always, thank you all. G

Daffodil Thank you so much for your suggestions, I will give some of things you suggest a try. I had been doing some similar things, but not quite structuring as you describe with the 15, 10, 5 intervals. The taking notes on the audio books gives me an idea. My work occupational health lady recommended Ted.com talk as something slightly more technical to concentrate on bit not too long (typically 15 minutes). The bit I could add to it is the note taking or writing a brief summary afterwards. I'm starting to learn to pace myself, if I'm honest it doesn't come naturally but I'm making some progress. Winb thanks of the advice. I know when it comes to returning to work, I know I am going to be on a long phased return, and my occupational health lady has already contacted my consultant, and will be talking with my GP to help plan things out. I'm lucky I work for a health care company, and they are very good at looking after us when things are great, so for now I'm not sweating that side of things. Going back to work isn't going to happen yet, but at least it will and for that I'm very grateful. Thanks for the advice, much appreciated greg.

Dear All I just wanted to do a quick straw poll to see if folks have had or were at least offered OT post SAH? I'm having problems with mental stamina and this is key for my returning to work. I'm four months post my SAH and I am seeing some improvements, but think I would benefit from some professional guidance to help me through this. I can concentrate for about 15-20 minutes depending on the day on more complex things, and then all of sudden its gibberish and I have to stop. I'm told by the hospital that the 3 to 6 month time frame post SAH is when I should make most improvement, but none the less four months down the line, this does at times worry me a bit and want to feel I'm doing al I can to aid my recovery. Both the hospital that treated me and Headway have not come through with anything despite promising they would. I just wondered whether anyone has any experience or advice they could share on OT and accessing services either within the NHS, 3rd sector or privately. Many thanks in advance Greg.

I had / have a slightly different change in taste. While I was in hospital I lost my sweet tooth for a couple of weeks (which is unheard of) but that came back with a vengeance. Generally food is all fine but two things I have noticed. Alcohol, I loved the taste of a nice bitter beer or a decent glass of red wine. Beer just tastes flat and horrible and red wine tastes like is been sat around for a week and gone rancid. Secondly, like Mandy my sense of smell has changed in some ways and what I've noticed I'm particularly sensitive to people's bad breath. The alcohol I had put down to the industrial strength antibiotics I was on to treat the ventriculitis introduced by my EVD but perhaps not? Its slowly coming back to me, but its not the worst thing to have lost the taste for, stop me being such a lush!

No run in's with any busses thank god, we have some very quiet lanes around here. A choc thank you very much thanks Win! Did feel tired today but not ridiculous, have taken it easy and have managed to avoid the worse excesses of extra headaches. I won't go out again for a bit, but glad I went yesterday. Might be a while before I go for anything to gruelling, exercise will hopefully play a part in my recovery, but Macca is wise to advise me to take it a step at a time. But it was a beautiful day yesterday:

Thanks Macca, I know I need to be patient and not do to much but today was too tempting and I did take it easy honest! An easy day tomorrow. Cheers.

Today's a good day: A 3 month update: Today is to the day three months since my SAH, and it's been a good day. Prior to my SAH I used to exercise almost every day, it was a really big part of my life and since then I haven't been able to do anything. However today I got out on my bike (push bike) for the first time. Admittedly an asthmatic octogenarian would have overtaken me but it felt great to be out in the fresh air on such a beautiful day. Needless to say I will sleep like a baby tonight as I'm rather tired, but was great to be out and get the heart rate up just a bit. A great milestone for me on my three month anniversary, just wanted to share it with folks.