Lin-lin Posted March 1, 2011 Share Posted March 1, 2011 Here is the link for Headway. It is a charity which helps people with brain injuries. Check on the website to see what they offer you locally. http://www.headway.org.uk/home.aspx I go to my Headway sessions twice a month. We meet at a local hall and it’s nice to spend time with people who understand what living with a brain injury is like. It’s basically like Behind The Gray but in person! Headway is not limited to SAH / stroke survivors. It includes people who have suffered accidents, meningitis, hydrocephalus etc. Despite how the brain injury is sustained, you learn at Headway how all brain injuries have a common theme. Once a month a neuro psychologist visits us for group sessions. I have found these invaluable. Lynne Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 1, 2011 Share Posted March 1, 2011 Hi Nessie, someone from the UK will reply about Headway. Oops, Lynne and I must have been typing at the same time! Sounds like recovery time from your outing is slow going. Its good to hear that you listen to your body and if you need sleep and rest that's what you do. It sounds like Hubby is supportive which relieves some pressure doesn't it. After my venture to Vegas I am on the couch. It was expected and that's just the way it is. I'm just so grateful I'm not back to work yet. I would be in tears from exhaustion if that were the case. Take care and rest lots. Sandi K. Xo Quote Link to comment Share on other sites More sharing options...
Tina Posted March 31, 2011 Share Posted March 31, 2011 Hi Nessie a very warm welcome to you and thank you for sharing your story. Take care love Tina xx Quote Link to comment Share on other sites More sharing options...
Gill C Posted March 31, 2011 Share Posted March 31, 2011 Nessie each headway offers different services, mine I go twice a week at the moment. Have done a course on understanding brain injury & relationships which were both good. I am doing communication & memory course at the moment. I used to do a craft session which was more informal & thats where i did my card making.There is also a drop in session on a Monday but I found that one hard going as it's mainly guys playing games but still good jsut not as good chatting. There is a mood management course & also a gardening one, plus IT & possibly a cooking one & talk of a creative writing one which isn't decided yet. The course are designed to help you with cognitive rehab really but still informal & relaxed. There are some social events but there doesn't seem to have been much happening in ours so far this year. hope that helps Gill ps lynne nice to see you back xx Quote Link to comment Share on other sites More sharing options...
Nessie Posted May 28, 2011 Author Share Posted May 28, 2011 Hi! A little update here, for in the green room I don't seem to get more in then an few *waves* now and then. The last weeks I've been overwhelmed with all thing things going on. Next tuesday I'll speak to my neurologist again about a new angio (i hope that's it) and following that a big possibility of a new coiling. All while my 1-year-survival anniversary is coming up next week as well... It feels like all my rehab-work has been for naught, although I realise that that's not true, really.. But I'm just scared to go back to hospital and wrecked that my last MRI didn't show what I wanted it to show. When they told me a year ago 'that I should look where I'd be in a year's time' I laughed at them out loud. Ridiculous! I'd be back on my feet in no time at all. Although I have come a long way, I'm nowhere near to where I was. And now with the prospect of getting another coiling.. (with the chance of a new stroke estimated as 1 in 20) I just feel lost. Everything is happening at the same time here, so the battle for my benefits has started as well. Luckily my sister, dad and lawyer (never had one before!) are doing all the work, so technically I don't have to worry about that. (but of course I do) If we don't win this it means that amidst all that is happening we need to sell the house and all that.. Husband is slowly getting stuck in the bogs as well. But I am grateful and happy that he sees it and is finally accepting help. He had his first appointment with a counselor ast week. So far his strategy was: i'll go and talk to people when all is over and better. But he can't keep that up anymore. And for me the thought of him getting depressed are too much to bear. I need him strong!!! ( he's trying to find a new job as he was laid off 18 months ago. Getting a new job is hard enough as it is, getting a new job while depressed is even harder. Anyways, sorry for the rant. I do try to keep reading your posts, and if you see me *wave* in the greenroom or somewhere else, It's from a good heart. Quote Link to comment Share on other sites More sharing options...
Karen Posted May 28, 2011 Share Posted May 28, 2011 Hi Ragna, I know where you're coming from ... I can't remember when I first had my MRI scan/angio after the coiling, it's probably in previous posts somewhere on BTG, but you will have to forgive my poor memory ... but the letter I had from my Consultant, was that my coiling was "Satisfactory" .... I wanted to read that it was "Excellent" I didn't want to hear that it was just "satisfactory!" ... I was then told that I had a small neck left on my aneurysm and that it may or may not need coiling in the future, but I would be monitored. It was a huge blow to me, set me back with my recovery and I was struggling with my balance, dizziness, eyesight problems, anxiety .... there was a huge list of absolutely everything ... both physical and mental! I also thought that there was no way, that I wouldn't be okay or not back to work at 3 months and 6 months was unthinkable to me .... I was a strong person, a fighter and there was no way that I was going to be the "norm" .... or a statistic, I could do it and would also be back on my feet as soon as I could. Being scared is not abnormal ... it is normal in my book after what we've been through. I found out last year, that I also have an abnormal shaped artery on the opposite side of the brain .... was I scared at that news 5 years on? Yes, I was and I cried and bawled my eyes out ... it was something else to cope with and what felt like another setback. I think that most people on here have had pretty big financial worries .... we certainly did ... My husband had just taken a job, with lower pay before my SAH that was salaried and no chance of earning any over time and our joint income was substantially lower ... but because I was earning, I was able to take up the slack and things were okay ... but after the SAH, then it was completely different, as I was self employed and wasn't entitled to any sickness pay in the UK. It was a horrible time .... we re-mortgaged our house with another building society and got a good deal with the interest rate and had to see where we could reduce all of our outgoings. I couldn't deal with any of these things and had to let Eric do it, as I wasn't capable.... I felt completely and utterly useless! I'm sorry to hear that you husband hasn't been able to find a job and I hope that he has some good luck soon .... depression is horrible to have to deal with. I hope that you have good luck with your benefits and that you are able to keep your house. Thinking of you and sending love and hugs ..... xxx Quote Link to comment Share on other sites More sharing options...
JayKay Posted May 28, 2011 Share Posted May 28, 2011 Hi there! Just commented on your blog too. I'm so sorry you didn't get the all clear, and also to hear about T being out of work. Believe me, money problems were HUGE when I had my SAH (I was in a temporary job, the other half was out of work.... no income AT ALL for 2 months, all while W and my daughter had to get the train every day to see me, which cost an arm and a leg. Awful). Luckily the benefits system here worked for us and I hope and pray that you will be ok too. Another thing I can totally sympathise with is the feeling that I'd be back at work within a few weeks. Recovery can take 18 months to 2 years they said. I also laughed at that - no way, not me. I'm strong and I'm fine, look, no paralysis, no problem. Ha. Ha. Ha. It's now coming up to 16 months and I finally, FINALLY, feel like I'm getting somewhere. So take care of yourself, don't be too hard on yourself, and don't forget I'm here if you want to talk. xxx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted May 29, 2011 Share Posted May 29, 2011 Hi Nessie, I'm really sorry you are having such a bad time just now. I had a 2nd elective coiling 3 months after my SAH and I hope it will help you to know that the experience was completely different from surgery during a bleed. I came home the next day and didn't develop any new problems. I hope things get better for you and your husband very soon. One day you will both look back and remember how awful this time was but by then you will be in a much happier state of mind. This will pass and things will get better for you. Michelle x Quote Link to comment Share on other sites More sharing options...
Nessie Posted May 29, 2011 Author Share Posted May 29, 2011 hey that's good to hear Michelle, Karen en Jen, I just hope we can get this behind us quickly. It's just all too much! But your story's are full of hope! Let's focus on that. Hope. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted May 29, 2011 Share Posted May 29, 2011 Hi Nessie, Hope is just a small part of it - the odds are in your favour. Stay strong, thinking of you. Michelle xx Quote Link to comment Share on other sites More sharing options...
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