Shiz

Hi Karen I'm definitely going. I'm only going for 3 days as I wanted to be with my gran whilst she felt safe that there were others around to support her, bless her she's telling everyone that I'm a mess and can't even see, so this will put her heart at rest. I think, wonderfully, this has brought me a lot closer to my family in some respects. I don't think I'm brave, I have always been a practical, face it head on kind of person. The double vision is a problem that is frustrating a little, as I have not had any support from the opticians since December, despite them saying I would have a follow up appointment. After a little harrassing, I have an appointment on Wednesday, yay. I just want an informed conversation. I am wearing an eye patch, but I bought one from that is really comfortable, compared to the NHS standard issue. My 4 year old niece (little princess) and I ordered a fun sparkly one too!! She makes it all easier to cope with. She laughed at me the other day, when I offered to read her bedtime story, she told me it would be really funny reading with one eye. And she refers to my EVD scar as a scratch, that'll do me. Karen, how long did you need the patch or glasses for? I'll have a huge update on Wednesday I think. Opticians and hospital. It's so good to know there is somewhere to come and be understood. Also, I am listening to my body, I now hear the difference between tired and fatigue!

Hi Thank you so much for your motivating encouragement. I've gone ahead and booked. I've also paid a ludicrous amount for luggage, although I don't normally need it, even going away for a fortnight, but I think it's a case of being proactive and showing the people who love me most, that I'm aware of the limitations and taking measures to avoid overdoing it. It's so shocking having to suddenly adjust to this, but I do think I'm still lucky. I think people forget about the wieght it puts on our support network and I have to stop and think out of the box a little before reacting. I'm blessed and whatever/however it's brought me here is also a blessing. With regards special assistance they are closed over the weekend so I can't talk to them prior to departure, it's ok, I think as long as I explain that the eye patch is not a fancy dress costume and necessary they will hopefully accomodate me. My brother and sister, are both on the consultants hitlist, although they're waiting to see my dad's reports before deciding whether they will screen them. My next big adventure will be phased return to work, but I don't think I'll want to attempt that until I get my squeeze from my gran. Thanks again. I'm excited now.

Good afternoon everyone Firstly, can I please say, this site is fantastic. It's so inspiring and motivating. I thought I was lucky and doing well before and now, I know that all things considered I am. I came here looking for help and guidance and suddenly feel completely humbled and a little silly for, what I consider is a problem, but I'll still run it by you guys, hopefully you'll be able to help. No one in the "real" world quite gets it. Before I start I should introduce myself, forgive my writing skills, this is a first for me, writing a big introduction about myself and my situation, not writing in general. So mid-december I was on my way home from work, a little stressed out from a few things, with what felt like a migraine starting, i've suffered with them for 22 years so I thought nothing of a banging head. As I waited for my train, I just thought, home, bed, paracetamol, sleep it off!! As the train started pulling in I stood up to get on and my ice cold hands were no longer relieving the pain, suddenly I'm hearing a voice say, I've put you in recovery position and we've called an ambulance, that voice was Rachel in the Red coat, my angel. I've not been able to find out who she was or thank her personally, but I think a mention of her here will do some her some justice. So after the ambulance crew (who treated me like a xmas party fallout) got me to hospital, a CT scan revealed a bleed, suddenly ambulance crew want to help, I was transferred to NHNN, london. There I had an EVD and aneurysms (2) coiled. After an initial stint on the High Dependancy ward, I was on another ward for 2 weeks, in total hospitalised for 3 weeks. So now, I still have double vision, I'm suffering with fatigue and that's it, so far that's all I've noticed. Actually, that's not true, I've noticed that my balance is off on my left side, so I'll never be a tightrope walker afterall. There are so many things I'm grateful for, a supportive family, discovering I really do have a brain, seeing my true friends shine and the chance to live life to the fullest I can, my dad (RIP) was not so lucky. So now, I'm travelling alone in and out of London, for hospital visits etc. I went to a gig a week or so ago, music and comedy, was great but incredibly daunting being in big crowds. Now my gran, lives in Dublin, I miss her so much and need to hug her, she's 86. My uncle is flying from the states to see her. I've had the "all clear" to fly and want to go over and see my gran, uncle, aunts and cousins. Simple so far!! Well my brother, who's been amazingly supportive, has pointed out a few of the issues, eg being alone, long airport walks, my exhaustion after minor days of activity. I can't imagine how he feels, he lost his dad and nearly lost me, and he can't fix things. I know I'll be tired and know it'll be house rest after the flights, but if an SAH doesn't teach you life is too short, what does? My gran's husband was my grandad and bestfriend and I lost him 18 months ago, his inspiring words and strength got me through this, like "you're as sick as you let yourself be", I'm not sick, I just can't do all that I could but I can see everything twice now!! So I guess, my question is, how do you live again without upsetting your support network? I'm afraid to put off the trip in case I start to fear the trip itself. Again, this site is amazing, thanks for making it, both members and creators!!!