rabbit

Dear Suthern Girl, Well done and congratulations on making such a good physical recovery. I am sure we all sympathise with your feelings of isolation, I know I do. I look ok and people assume that I've recovered, and to a degree I have, but looks disguise how awful I usually feel. I have been left with ataxia and some speech difficulties, and terrible fatigue, so while it is great to look ok, the reality is that ny body lets me down and fails me if I push too hard. My mind is pretty good, but I get very frustrated and it's hard to hold a conversation. There ares lots of good books about brain illness and its hidden effects, which can be devastating. Bear up! We do understand. It's good to be alive, even if everything is completely different now.

Hey you have expressed so well how it feels! And the rule to appear well, when it is what everyone wants. I walk funny because I suffer from ataxia, and have "balance issues". Two years after my SAH this has not resolved, in spite of heaps of walking and other exercise. I have been told that my recovery has probably plateaued. A physiotherapist once asked me "Why do you walk funny?" I have to be very grateful for the things which have come right, which is mainly my eyesight. Family and friends are getting used to my being tired all the time, and often nauseous. Whatever the outcome, it is a huge change in lifestyle and image of oneself.

Hi there I'm a new member and I have this book on order from the UK Book Depository (paperback). Can't wait to read it!

Hi there I had very bad nausea and spontaneous vomiting for the first few weeks after my SAH, and I still had it when I came home. I had to take a bowl everywhere we went, and often we couldn't go out. My doctor connected this with the extreme vision problems, saying that once I could see better, I would keep food down better. Actually the extreme vomiting stopped suddenly after a few weeks, to our intense relief. Since then I still have nausea occasionally. The following seem to help: I take an omeprazole (losec) daily now in the morning. I have plenty of fluid, and have some water with every meal. Not getting too hungry helps, too. I find if I bend over after eating, I tend to vomit. Initially I could only eat really slowly, a little at a time. I also had problems with my swallow being affected. It felt no different to me, but I had to do lots of swallowing exercises and it gradually improved. At first I could only have pureed food and thickened water! It is a big relief to have more control over the vomiting, now. My SLT put me onto a liqud Omega 3 formula, which is easier to swallow than large capsules. Your mum may also need to change her toothpaste. So I think you may want to check for swallowing and vision problems. Hopefully it gets better soon!

Dear Neil Thanks so much for your comments, they are very helpful. I am just over 18 months since my SAH, and still feeling that it has destroyed my life. I was going to get back into everything, right away afterwards. Now I still don't drive, vision and speech are difficult, I have "balance issues" and the ever-present fatigue. It's also really hard to write neatly. But it's true, some people do realise how far I've come, and that's what I have to focus on. It's true that there are good days, as well as not-so-good, and I do find that going for a walk each day helps a great deal. Presumably one is on a different trajectory now!

Dear Rachel I'm so sorry that you lost your mum. I doubt if she suffered at all. Since my SAH (Sep 2011) many people have told me stories similar to that of your mum. I guess I'm relieved that medical science had advanced to the level where it could keep me alive. When I went back to the Neurology Ward, the nurse in charge said that the brain protects itself (and the patient) by closing down for a while. I was unconscious for several days. I just remember the really bad headache returning, and I asked my husband to call the ambulance and I went back to bed. Evidently I also told him not to go away for the day (when he asked). I missed all the ghastly procedures, the operations, anaesthesia. While I was unconscious I had some interesting dream sequences, which I wrote about afterwards. But I have no memory of any procedures, and when I came around, they were taking tubes out of me. I certainly felt no pain, and evidently I was close to death for much of the time that I was unconscious. And miraculously my family were all there to see me!

I also really miss the old me. I was going to defy the medical pundits and be back doing everything again really soon, but I now (19 months out) still find myself getting very tired very easily. People find this hard to understand. I look ok, but I still have vision, speech and balance difficulties. Background noise can be very tricky, but people don't realise either. Sometimes I just prefer my own company - how anti-social is that? I loved that line in the movie "Snow Cake" where the heroine says "I don't do social!" I often feel like that myself. What is nice is when people tell me how far I've come, and how much healing I've experienced already. My brain still works, although the rest of me is catching up! Even building up concentration is hard work.

I have found I have very limited tolerance of alcohol after my SAH. I can't tolerate red wine at all but I can drink the odd glass of white wine. I find this works better if I match sip for sip with water, and drink at least as much water as white wine. But I am still wobbly when I stand up, although not drunk.

Hi I also experienced taste changes after my SAH. I really want sweet food, now, and savoury food tends to taste yuk. I also seem to like well-seasoned food, no more bland purees for me. I also want to eat food that's bad for me now; I seem to feel that if I could have an SAH when I was taking care of myself, why bother now? although I know that this doesn't make sense. One thing that has helped is changing my toothpaste to a one for dry mouth - ask the chemist. they should know. I am also really sensitive to some foods and over-eating tends to nausea, very annoying. I am much clumsier that I used to be.

Hi there, I have had major eye problems following an intracerebellar haemorrhage. I also lost my speech and had to have pureed food and thickened water for several weeks. I had to wear a patch on one eye for the first 6 months. Then my double vision reduced and I could go without the patch. I could also walk independently after 6 months. I was prescribed prism lenses but I found these very distorting. I found that as well as diplopia I have ataxia and have issues with moving objects. So I still don't drive although I had my SAH in September 2011. Thankfully my eyes have recovered very very slowly and the double vision is much better than it was, ie much reduced. I hope to be able to drive again in a few more months. I would so love to have some independence! My speech is still coming right - it's still hard work. I joke that my mind is good but my body has taken it all very badly! I still have "balance issues". But things do come right, over time. Whenever my eyes have been changing, I have had headaches and more than usual fatigue. Evidently you can have diplopia and/or ataxia separately. Very confusing to the specialists. Thankfully I think I know what's going on! All good wishes, healing takes time and patience. I find that if I get too tired, my vision and my speech are some of the first things to go.