Siobhan - New member

[Shiz]

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!!!

[paul99]

hi siobhan

im please you have found us for support and making it through a terrible incident i know quens sq very well and know what good they do

you will have to take one day at a time you arnt sick your brain will have to take its own time in healing one day at a time please your brai has taken a right battering so it needs time to get itself back on track many who you meet may not understand the tiredness you suffer because of what you have gone through this is when you find out who your friends are sweetheart take one day at a time drink plenty and try to be yourself dont push things to quickly at thisstage listen to your body and take note things do get better

right young lady take the trip alert the airline that you will need a wheelchair to take you from departure to the plane and from the aircraft to arrivals arrange someone to meet you at the other end if you can that way you should be able to save some energy you may feel a little uncomfortable on the aircraft but not as bad many on here have flown and will come on here over the next day or so by the sound of it i think the holiday will boose you up no end so go for it girl

one other thing it would be prudent for your brother to be checked out by his gp and have a scan because it can be genetics in play here just to put your mind to rest so have the holiday and enjoy it take care

[Shiz]

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.

[Karen]

Hi Siobhan and a warm welcome!

I also had severe double vision and had to use an eye patch initially/then glasses with tape over the bad eye ... think that the hospital said that they use the old glasses from opticians...you know the ones that have clear lenses that you try on for just for style/frame choice? Thankfully, mine weren't too bad for frame style, but there were some real humdingers in that pile that I had to choose from..looked as though they were from the 70's! Out of interest, have you been offered taped glasses rather than the patch, as it can be pretty uncomfortable?

If you can make the trip over to Dublin (great city, my Husband's family are from there and we've visited many times) then I can only say that you're doing really well, so have a great time and I think that you're very brave!

Remember to give yourself some time to heal as well and let your family in, as we all need the support .. enjoy that lovely squeeze from your Gran, Siobahn and let us know how you get on. xx

[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!

[Winb143]

Hi Shiz,

Welcome to BTG (MY Lifeline)lol

I was so glad to be alive after SAH and still am, legs and back are weak but eyes are okay but I needed new glasses.

Go and enjoy trip, as you have said you know when to take it easy (My words).

I wish you all the Best and my brother was worried also and he is happier now I can walk a little way. ie toilet lol.

Family worry about us don't they. ~ But So Good to be Loved xx

You will be fine just rest when you need it, Good luck and have a good trip

WinB143 xx xx

[Karen]

Hi Siobhan,

I had a third nerve palsy to my right eye, as had an aneurysm on the right communicating artery which affected the blood supply to the eye muscle, so my eye was out of alignment to the good eye. I was given glasses with a patch over the wonky eye when I was moved to my local hospital after surgery and saw the Opthamologist (not sure whether I've spelt that correctly!)

Think that I used the glasses with a lens taped over for at least 18 months, but can't remember the specific amount of time, as I had my SAH about 8 years ago.

The double vision is very hard to deal with and I lost my sense of depth perception ....i.e. with kerb height, steps, stairs etc

I thought that I would ask you about your eye, as I'm thinking that you perhaps should have been referred to an eye specialist too? I was also prescribed a lubricant/moisturiser for my eye and I still occasionally need to use one, as my eye would feel dry and sore.

On a positive note, my eye is hugely better now, not the same as it was before, as it's still slightly out of kilter and I do experience the odd bit of double vision when I'm tired, but with use and some eye exercises to strengthen the muscles or head turning, it's definitely improved over the years. xxx

[Daffodil]

Siobhan. Glad you're here. I know NNH very well having spent the best part of ten weeks there last year for a few overnight stays:lol: The staff of the HDU are amazing aren't they.I owe them my life.

I'm glad you're making the trip home. I think if you plan ahead like karen and paul suggest and get help then I'm sure everything will be fine. Yes you'll be tired but the prize is you will get to cuddled within the safe confines of your Grandmothers arms and that will be healing that no pill or doctor can bring you.

It will probably be a very emotional trip. That's going to knock the stuffing out of you so be ready to slow things down if you feel rubbish.

Come back and tell us how you did. It will inspire others. . one member on here recently flew home in America post discharge so it will be ok.

Enjoy yourself. Keep being kind to yourself. And be gentle with your brother, you scared him.

[Louise]

Hi Siobhan

Warm welcome to the site, glad you found us.

Cant add more than the others have, take things slowley and easy...

take care

[jess]

Hi welcome to btg. My advice would be if u have had the all clear get on the plane and visit because u never know what is around the corner, as we know life can just be over. So go visit her give her that hug u want to give her and have a nice time. Jess.xxx

[SarahLou]

Hi Siobhan,

Welcome to BTG.

Sounds like you've a really good positive attitude which is wonderful to read, well done you for looking on the bright side of life.

I love your Grandad's quote of 'you're as sick as you let yourself be', so very, very true.

I had double vision for a while after my SAH, was referred to the Eye Hospital, saw them a few times. For me an existing problem was made worse due to my SAH. Various things were tried but they didn't work. There's nothing more they can do for my left eye now. It settled down slightly but I still have a long distance vision problem. Not so much double vision, I get a blurry image from my left eye, clear vision from right, put that together long distance and its a struggle! I've kind of learnt to cope with it.

I hope that your appointments on Wednesday give you some answers.

If your Optician recommends a patch over one lens then you can have that lens 'frosted', looks and works better than a patch.

Go and see your Gran, enjoy great big hugs. Life is all about making memories.

I wish you well with your recovery.

Take care,

SarahLou Xx

[Louise]

Yes good quote, but sometimes we just cant do anything else isn't that right!

[Mace]

Hi Siobhan, and welcome to BTG

I too had double vision (third nerve palsy) following my SAH in June 2010, and wore patches on my glasses for a time. I was referred to the Orthoptics Dept at QMC and have now had two lots of squint surgery - the second last August was the one that cured and the surgery involved adjustable sutures which had to be manipulated after surgery to gain the optimum result. Uncomfortable but worth the short-term pain for long-term gain!

The Orthoptics surgeon was very reluctant to operate the second time as he said the odds of success were 50/50. I managed to convince him that those odds were better than 100% surety of double-vision for life if he didn't operate, thankfully he listened.

I hope all goes well with you, but would advise being a little pushy as it may well be cureable!

Good luck,

Mace

[Gill C]

Hi Siobhan & welcome to BTG.

I have double vision but sadly mine is permenant so now my right lens is frosted rather than patched. My anni was pressing on the 3rd nerve for 6 weeks before the anni was found & clipped. I was under the eye dept locally until last year when they told me there was nothing more they could do for me, my eye is too far out to correct with prisms & as its nerve damage it will not repair now.I can still drive with my eye patched although judging distances isn't easy (I tend to over estimate rather than under!!) & I have got used to going about with only single vision.

I think my case is pretty unusual as the damage was caused by the anni pressing on a nerve rather than a bleed.

I'd def go & see your Gran, get as much help at the airport as you can cos the journey itself will be tiring. Healing hugs from her will def help as well as some nostalgic home cooked meals with her.

Have a fabby time & let us know how it goes xxx