KelBel

Hi Claire I would be inclined to go straight to A&E. You will just get stressed keep phoning and waiting to try to find out results, which is exactly what you don't want to do. From everything you have written it certainly sounds like a few people have forgotten to do certain things that could have greatly helped your situation, rather than jeopardising it (like it sounds as though they have). Maybe take along a copy of what you have written here, as well as any other copies of documents/letters you may have that could help them diagnose you properly? I do hope you get some answers soon, you certainly deserve to know what it wrong, what can be done, and when! Good luck Kel x

Hi John Welcome to the site. You will find lots of information, help, hope, support and advice here, and some fun in the green room too most days! Take care Kel

Hi Dawn It certainly sounds like it was a more positive meeting than anticipated by all of you. And it would seem that HR may have had to change their initial assumptions... Kel x

Sandi I am glad you are being given the opportunity to relinquish your responsibilities for a while and concentrate on your recovery. Having tests to assess your cognitive abilities will I am sure help to confirm that you have improved since the last tests were done. I wish I could have been tested before I went back to work... I am sure it would have showed up that I just wasn't ready for it all. Alas, everyone thought I was 'fixed'. I do hope you are able to relax into your new role of looking after No.1 and you can enjoy the freedom to allow yourself to get better. If only any of our GP's/Neuro-consultants etc were able to give us more definite time-frames... we seem to be told different things or nothing at all in some cases...poor show really Kel x

Hi Dawn That report sounds very negative and derogatory! Make sure you note down all the things you had trouble with initially and all the improvements you have made to date, I am sure that will not come across as slow or slight! How dare they dismiss what you have achieved so far!! I am annoyed for you Good luck for the meetings on Tuesday, and I hope you manage to persuade them that you are not ready to back down and take what they assume you are not capable of. You want to be able to go back to work, you just need the time to allow your body & your brain to make further improvements, which you believe will happen in time. Take care Kel x

Well done Kris! I am looking forward to reading your thread in the fall when you are back in the Orchestra! Great thread! Todays Positives for me; It is Friday I got parked in the car park this morning without any problem (yesterday was a bit of a mare…had to park down the road at the local DFS and walk back to work… cos we had Vauxhall in with their new Ampera vehicles and they took up a lot of our surface car-park, and then the other 2 basement car-parks were full… the positive was, that 8 of us managed to reverse back out of the 2nd basement and get out! no mean feat I can tell you... ) I am doing some overtime tomorrow to help towards the cost of the Lady Gaga tickets I bought yesterday (only 9am til 1pm) I bought Lady Gaga tickets yesterday!! I go on holiday 4 weeks tomorrow I have most of my dinner cooked for tonight, I just need to do some veg I made it to the gym last night I cannot wait to read some more of Steig Larsonns ‘The Girl Who Played With Fire’ tonight… I am quite near the end and it is sooo good! You (BTG) guys (and gals) make me smile I am thankful that I have been strong enough to get this far! Carolyn – I love that song! I must also start a gratitude journal…I am always thinking of things that I haven’t got or cannot do, and yet there is lots of things I do have and can do! I just need to keep reminding myself of that… Mary – I do think we need Like buttons! Take care Kel x

Hi Tom In the early months post-SAH I constantly felt varying symptoms and every time I went to the Dr’s I was told it was anxiety-related. They did blood tests now and again to double-check but everything was coming out okay. It is amazing what anxiety can cause… I am not saying that your symptoms are necessarily anxiety-related, as there could be other issues, but all of my aches and pains did seem to be caused by my anxiety, as we can be so hyper-sensitive to everything post-SAH. My counsellor told me that I was suffering from Post-Traumatic-Stress, but it was never verified by a Dr, as I kept forgetting to mention it every time I went… but just to know there was a reason for my thought-processes, and the flash-backs, helped me to start recovering. Slowly but surely I stopped being so afraid. I was initially so scared of every sudden noise that I would almost jump out of my skin! I too found it very difficult at first to feel lucky, because I was just so tired… I felt like I was constantly trying to swim through treacle, everything felt like such an ordeal and seemed to take so long… but give it a few months and hopefully you will also be able to look back and see how far you have come. It is a long journey, with twists and turns, but there are brighter days ahead. Good luck for your journey Take care Kel x

Hi Tom Good luck for your angio next week. I can totally understand your anxiety about going back to the same hospital as I was also a nervous wreck when I went in for a follow-up appointment a few months post-SAH and I cried for pretty much the whole day... it was emotionally draining. I also felt extremely nervous when I went for an angio 1 year after my SAH and coiling. The angio was much easier to cope with than I expected, and I was discharged early evening that day. I did write a thread about my angio check up, if you wanted to have a read of it. I can relate to the worry about getting addicted to tablets, as I felt that about the Tramadol I was given upon discharge from hospital after my coiling. I was very careful about how many I took, and kept a notebook of all medication I was taking (simply because I would forget immediately after I had taken it!). Also, during the early weeks/months post SAH I struggled to sleep well, partly because of having to take medication every 4 hrs during the first few weeks but also because I was overthinking everything and worrying about it all happening again. Consistent sleep was difficult, but that has got better over time, and I can sleep really well now! I haven’t used Headway myself, but others on here have done so and have found it really helpful and worthwhile. It is well worth giving them a call to discuss what they might be able to offer you. It is always worth finding out. If you don’t ask you don’t get. Good luck with the mental health referral too. I found counselling really helped to validate why I was feeling the way I did back then, which helped me to start to accept it all. Kel x

Hi Carl They may be ramblings to you Carl, but they are interesting none-the-less I like your glasses analogy... we have a hidden 'illness' (I am not always allowed to call my SAH an illness by those close to me, as I am not ill! ) It can be rather difficult to accept the way we are after SAH; as we are continually waiting to see just how much better we can get week on week... so we are always waiting to see if we get back to the person that we were before 'it' happened... Things do get better over time, it is just the length of time it can take that varies for us all and which can be frustrating and difficult to see at first (and we also have different symptoms/disabilities to overcome). The great thing is that we have this site to come to; to chat to others who are 'in the know', and we can have a rant and moan about our situations and difficulties, and we can get some answers, suggestions and guidance from others as to how we can overcome these difficulties. Or we can just get the validation we need for how we are feeling, which can in turn help us to move on. Kel x

Hi Michael Glad to hear you are doing so well at the 6-month mark, and getting some normality back is a huge boost to the recovery process. Take care Kel

I can totally relate to that!! I now get so incredibly angry when I have been let down, or messed around, or plans have changed... it drives me to the point of insanity at times. I think I used to get annoyed pre-SAH, but I don't recall getting as angry and, at times, as 'down in the dumps' as I do now. I get very affronted sometimes when people are just taking the mickey or trying to wind me up. It happened yesterday at work, but I just say 'wrong day/time and wrong person to try to wind up!' They get it then... some are well trained... sometimes I can take a wind up, and others time I just can't take it. I couldn't take it yesterday as I was trying to get through heaps of emails at work, print off paperwork, check it, and I had piles of work and kept getting interupted all day long... trying to wind me up in the afternoon just wasn't a good idea as I was feeling quite stressed and overwhelmed with the workload... x

Hi Tom Welcome to the site! Sorry to hear you suffered mis-diagnosis at such a grand scale! It does make you think about all those times you were walking around feeling ill but oblivious to the extent of your illness before they eventually diagnosed you correctly... it is a life-changing event and makes you question everything. I found I was getting really bad headaches a month or so post-SAH, and was told by my GP that it was anxiety-related. Although that may have been the case it didn't really help me much. It is very difficult not to worry when something like this happens out of the blue... and you are then discharged and left to get on with it! What did help me, was when my counsellor (contacted via my work) advised that I was suffering from Post-Traumatic-Stress (this was not however diagnosed by my GP). Once I read up about it online, as well as the leaflet she gave me; it helped me to make sense of how I was feeling, and why I was feeling that way. It still took a long time for those feelings to lessen, and I still get the odd fear now and again, even just over 2 years on. As others have said, lots of water will help hydrate your brain and limit the headaches somewhat, and lots of rest. It is very unlikely it will happen again but that doesn't stop us being worried that it might, and wondering if every twinge, ache and pain is it all starting again. If you are worried though, just go to your GP or straight to A&E for a check-up. Look forward to hearing more from you. Take care Kel x

Hi Alison Wow, that is great that Chris is home, but the friend was a little naughty for helping to initiate without your knowledge!... That is good that you have a support network a call away and do use it when you need to, to avoid complete burnout for yourself. I imagine it will be very draining trying to ensure Chris is safe and well 24/7. Take care Kel x

Rod, It is lovely that you managed to pop in and post! I am so glad that Merrill is doing much better, and the very best of luck for you on Sunday, Speak soon Kel x

Paul Thanks for letting us know. That is sad news . Good luck Rod! x

Hi Dawn I would suggest contacting the PALS at the hospital and asking them to book a follow-up appointment for you, if you've not had one at all since your SAH. They should be able to arrange an appointment with your Neuro-consulant or an assistant Neuro Dr. I have googled and found the following link for you. I hope this helps (and I hope I have got the right hospital!) Kel

Hi Ian, that is shame that you were all geared up for today but it has been put on hold because of emergencies. Hopefully they will have another date real soon Kel

Hi Mike Glad to hear you have been feeling more like yourself again! Sorry to hear about your friend. Very sad, but great that she lived her life to the full and is remembered so fondly. Great words. Kel x

Hi Jordan Sorry to hear about what your girlfriend Saori has suffered. I hope we can all help on here, but you can find more information about AVM on the Brain & Spine Foundation website where they also have forums too where you might find further patient experience of AVM in particular. Lots of water and reduced caffeine seems to help ease headaches, along with lots of rest. I hope the procedure on Monday goes well for Saori and her she progresses well with her recovery. good luck and take care Kel x

Like Michelle & Sandi I also tend to interrupt people quite often as I think of something, as I know I will quickly forget that thought... In the early months I forgot I had started running a bath & left pans to boil of over and food would be ruined, but I still have odd times like that now though... I will be in the kitchen and go through to the front room to get something then I notice something that needs doing in the front room and do that and totally forget what I went in there for in the first place... The other evening I managed to get in, make myself a cup of tea and put it on the table in the front room...I then went into the kitchen for something else and ended up making myself another cup of tea! That is a first

Hi Karen Definitely go to your GP and see about getting some counselling to help you through this. I still get angry now and again but not like I used to in the early weeks and months... Once my counsellor had said that I was suffering from Post Traumatic Stress and I looked it up online, the way I was feeling started to make more sense. (Although my GP didn't diagnose this, and I forgot to mention it each time I went to them... doh!). I hope you find something that helps you, and this 'storm' passes soon Good luck Kel x

Hi Mike Welcome to BTG! You were certainly lucky to be in ICU when the main bleed occurred. Will they be able to restore your sight with further ops? That is fantastic that you are walking normally now. We all seem to suffer from trying to get to know the new person we have become... but onwards and upwards, we can keep on recovering even years down the line. We just have to take the scenic route rather than the most direct route. Remember, lots of water, lots of rest, and lots of cutting yourself some slack too (I wish I listened to my own advice sometimes... ) Take care Kel x

“I want to both tell people to leave me the *** alone and hold me at the same time” Teechur – I can so identify with your post!! I still get days like that now, even 2 years on… To be honest, it has been building up again more recently in the past month. I don’t feel like I ‘fit in’ anywhere. At work I see myself as different because I don’t have the stamina to do overtime and help out with clearing down our work queues, but I know I cannot do the overtime as I tried that a few weeks ago and totally burnt myself out! And with friends, they don’t all get it that I am still suffering to some extent, and they can’t understand why I feel so tired all the time, or get over-tired when there are too many things to contend with; people, noise and light being my worst offenders… Lisa – you are definitely not alone here. I can recall the isolation I felt in the early days and weeks after leaving hospital. It is crazy that the hospitals do not prepare us for what lays ahead. It does get better (even though I have been feeling a little down lately, it has got better over time) and you don’t have so many down days as time goes on. I did have some counselling within the first few months which really helped to validate what I was feeling, and why. I stayed at my parents for the first 10 weeks post-op, then moved back to my flat on my own. I cried when I was finally alone again. It was scary but I got through it. I would cry a river most days at first, which makes your head ache more… Better days are just around the corner for you Take care Kel x

Hi Dawn I have used earplugs before to be able to sleep, as I was able to hear clocks ticking downstairs, others snoring, cars being driven down the road 2 roads away etc etc... very acute hearing... but I have only recently decided to use earplugs at work as the noise level crescendoes every few minutes and leaves me worn out. I have actually just recieved a delivery of new discreet earplugs today, so will try them next week! Sounds like a good plan to wear them in supermarkets though! Kel x

Hi Teechur I have always struggled with this question... as you don't know you are overdoing it, until you have overdone it! However, over time you will learn to recognise the signs that you are overdoing it. I tend to get more sensitive to light than usual, more sensitive to noise, and a headache/burning sensation in the top right-hand-side of my head (my brain-burn). These things tell me that I am over-doing it and need to take some time out to rest and re-charge my poor brain... I am now more than 2 yrs post-sah and as well as working fill-time, I: go to the gym or do a zumba class a couple of times per week, some days I go for 30min walks at lunchtime, go to an art-class for 2hrs on a sunday evening (when I feel ok to do so), attend a slimming club every Weds eve, catch up with friends & family, do washing, cooking, cleaning, ironing etc... catch up with facebook, BTG and emails... and am working on a painting for someone too!! phew...no wonder that brain-burn happens daily! Try to rest as much as possible, but push to do a little something extra each week if you can, and look back each month at how far you have come from the first few days back home after the event. Take care Kel x p.s. it has taken 2 yrs to build up to being able to do all of this... initially getting out of bed, showering & putting pyjamas back on again was a full day!