Jump to content

Hi... Nessie


Nessie
 Share

Recommended Posts

This is the first time I am looking on the internet to find something about the SAH I suffered from in June 2010 (at age 35). Aside from information I think it's is great to find a forum with real people who might know what it is like.

I would like to introduce myself, but atm finding this forum here is so overwhelming that all I can do is cry.

When I settle down a bit I hope to tell you more.

(and if I can find out how this forum works..it took me over an hour to register and put this up..)

Nessie

Edited by Nessie
Link to comment
Share on other sites

Hello Nessie,

It's wonderful to have you on here with us. The beauty of this site is that we all do understand and please don't worry about it all being a bit much to start with. What you have told us so far is a good step and we are all here to help and support you in your own time.

You will find many of us have felt the same during our recovery. I hope you will join us again when you feel up to it,

Take care,

Sarah.

Link to comment
Share on other sites

Hi Nessie

I to had my SAH in June 2010 and like you have found it all very traumatic with elation feelings and then crying minutes later.

Welcome to this site, it has helped me so much. Its been like a second family to me and kept me positive. I hope it does the same for you.

Hope to hear from you soon

Traci S XXX

Link to comment
Share on other sites

Welcome Nessie! ;)

I cried rivers within the the first few months :cryin: :cryin: and then small pools for many months :cryin: and now just the occassional puddle :-(

It does get better with time ;)

Glad you have found the site now, you will find invaluable information, help and support here ;)

Take care and hope to hear more from you soon

Kel x

Link to comment
Share on other sites

Hi Nessie,

Isn't it wonderful to find this site! I too was overwhelmed and cried and cried as I read the stories. And then when everyone welcomed me I cried and cried some more! I still cry but I laugh too! Like Traci says, it's up and down. But Kel says the crying lessens and that's hopeful for us.

Nessie, I'm so glad you found us. You aren't alone hun. Wish I was there to hug you.

Sandi K. Xoxox.

Link to comment
Share on other sites

Hi Nessie

This is a fantastic site that since I found it, my SAH was in Sept< has been wonderful and so supportive. Take your time we are here to support you when you need us. Just talk when you need to be listened to and magically you get what you need.

All the best

Karen;-)

Link to comment
Share on other sites

Hi Nessie! Glad you are here :-D I was overwhelmed with navigating around here at first. Read everything over time, and finally decided to join in. It's been a godsend for me and helped immensely over the last year. Take your time sweetie and join in when you can and feel up to it.

Looking forward to hearing from you :biggrin:

Carolyn

Link to comment
Share on other sites

I was making coffee; getting ready to go to work on the morning of the 4th of June. All of a sudden I heard the sea in my ear. Really loud and painful.

I dragged myself to the couch. I knew something was absolutely wrong.

Went to the doctor 45 minutes later (when her practice opened). She thought it had something to do with my hayfever and eardrum and she sent me home with paracetamol and spray.

An hour later I went back in, with my husband. I knew something was up. By then I was vomiting bile and really restless.

From there I went to the ER. Got 2 scans and then they ambulanced me to another hospital.

I couldn't believe them when they said I had a bleed.

After that things got fuzzy and I have no memories for the next 2 weeks.

When I came out of my blur I found it hard to believe what was happening. (I often still do).

My body moved as it did before (aside from the fact that I was weak from lying in bed). I could speak (Dutch and English; which is great since my husband is an english speaker), and I remembered who I was, where I've been and well.. I thought.. everything.

I thought I'd be back at work in a week or two.

There were some huge issues though. my sensory system went OVERLOAD.

I couldn't stand lights, smells, sounds, touch. I got sick when I saw something moving fast like a car, or ripples on water.

I would try to hide when it started to rain for the sound of the drops falling made me cringe, cry and lash out...

These issues are getting slightly better, (rain is no longer a problem, or wind in the trees, a car moving past) but they are still there and dealing with this forms the major part of my therapy.

I have spent 3.5 months in a clinic for people with brain damage, but I found the experience horrible. I learned a lot from the therapy, but fitting in in a group of people was just too much.

The weekends I spent at home were blissful. Finally some silence. That is, if the neighbours kids weren't playing outside and none of the people in the neighbourhood was doing any DIY.

The evenings were spent with only 1 candle lit in the room, and an obstacle hiding it from my direct vision.

Placently I thought I was doing ok, until I heard my husband say to my social worker that he felt like he was living as a caveman. That really hurt. By now there are lights on in our house, but never direct lights. And I still prefer the dark.

When I am going somewhere I have my sunglasses, a wide rimmed hat, earplugs.. So far for subtlety...

I have trouble reading (my mind reads something else than I think) but I am overjoyed that I can write. I keep a blog (in Dutch) and use twitter a lot. It is there when I want it to be, and it is QUIET!

And because I can't stand visitors (their talk, rustling of clothes, shoes and heels with leather soles... hmpf) the internet is my savior.

I can do some shopping, talk to people, and generally amuse myself a bit.

My life has gotten very lonely in a way, and I have come to know who my friends are.... But at the same time, people I have met on the internet still connect with me, and every now and then send me cards, flowers or even chocolates.

I lost my brakes when it comes to eating. Being a picky eater before, I now eat everything, really fast and in huge quantities... So that is something to be alert on. I gained about 15 kilo's and slowly now I am losing those again.. (eating less and doing more exercise which makes me really happy).

Pfft.. what a long story this has become...

I have some problems sleeping. There are terrible nightmares. They are on the rebound now, so they are only there about 3 times a week. They used to be there EVERY night and EVERY nap for about 5 months. Always violent in nature. I shot all the people that would make noise, I was sold, operated on, experimented on. Really horrible. And while I have a hard time remembering what happened last week, these dreams are still all in my memory.

(I am starting EMDR in 2 weeks to see if I can get rid of them)

Always tired, lot's of headaches, a legendary short fuse, a shipload of tears, and a big sense of Ground Hog Day. ( I hate that everyday feels the same, but on the other hand, come change my routine and I don't think you'd live to tell)

I can walk our big unruly dog again (who has lost a bit of her education when I fell sick she was only a puppy), I can cycle for about 20 minutes, so my world is expanding a bit.

It might sound weird, but in general I am happy. As long as I stay in my own bubble where I can control the sensory input I am getting.

But.. in the long run.. That's not how I can spent my life... I'm only 36...

I'm almost done guys, so thanks for reading all this...

Finally...

My husband was made redundant, so he's home now. That has helped me a lot. He is trying to get a new job , and we really need that. We don't know if we can keep this house. And I want to get out of the city and live closer to my family. I feel guilty because of this. He has to work so hard and I can't even help. I know I shouldn't and he's really nice, loving and caring about it.. but still...

My MRI made in December wasn't quite ok. There is still blood flowing in one of them. I'm getting a new one in May, and then we might have to decide to do 1 of the coilings again... Grrrr

This time last year we were doing really well. Both got a job, just got married and trying for kids... Our 1-year wedding anniversary was celebrated last october... 5 months of that 1 year was spent apart...

How life can change....

Edited by Nessie
Link to comment
Share on other sites

Welcome Nessie,

I too had my SAH in June 2010, i was 34 at the time(35 now). Fit and health before all of this so was a huge shock:crazy: Mine had no reason no annie. Im only now starting to get back on my feet. I have four children and work two days a week, things have been very hard. I too seem to cry at everything get overwhelmed at everything, i think its part of the recovery.

This site for me has been a God send as it has answered loads of questions for me, even when the DR's could'nt. You will always find somone on here that has suffered the same thing as you. I found couselling a great help too and i am still going , i dont think i could have copedwith the help. Any time you need to chat or ask question you can PM me. It will be great to hear how your recovery is going, as it is the same time frame and we are the same age.

Take care Rhiann xxxx

Link to comment
Share on other sites

Well, Nessie, it sounds like you have had more than your fair share of things to deal with.

It also strikes me that you have come a long way since those early days and I hope you continue to make progress in all aspects.

Hopefully, being on here will help you a lot, as we don't tend to make a noise! I remember having a great dislike to noise early on. In fact I came home from hospital and on the first day back, two of my three kids were bickering and I said "send me back to hospital for some peace" I also found talking to others was difficult and often left the group as I started to feel dizzy. For me things have improved greatly, but I don't think I was as bad as you describe. My hubby lost his job during my first year of recovery and again this year so I know what stress that can bring.

I also had blood entering the aneursym following the initial coiling and had to have more coiling done, and whilst it was not a nice thought with it pending, I am glad to have had it done.

I hope you gain some more improvements over the coming months and don't forget we are all here to support you along the way.

Sarah

Link to comment
Share on other sites

So glad you’ve joined us!! Reading this morning’s post reminded me of my early recovery days. Where is it you had your bleed exactly? Mine was mid brain and there are strong similarities between our cases; all sensors blitzed, acute photophobia and sensitive hearing. Couldn’t sit in a car without feeling sick, disorientated and dizzy and craved silence so stayed protected @ home - never ventured near busy shops for ages. It took my brain some time to familiarise itself to normal sounds and sensations again. Noise still irritates to a point, although I was at a children’s party yesterday with screaming singing girls and didn’t jump or flinch an eyelid, so think I'm cured of that now! Glad you're out and about on your bike and with the dog. I found it important to keep up socialising - this is your life line! I set myself little goals to reach each new day; e.g. meeting a friend at a busy café and tolerating the noise and light just a little more each time. Sometimes I had to walk out then and there, otherwise stick cotton wool in my ears. I know you’re probably doing your best with this already! Strangely my short fuse seems to have been extinguished now my brain has healed. Before there were loads of fireworks happening!!

“I lost my brakes when it comes to eating” what a vivid expression. Love your sense of humour too!!

Anya x

Edited by Karen
coloured text removed re: forum rule No.7 Post format
Link to comment
Share on other sites

I love the detail in your story, thank you for taking the time to write it for us.

You sensory experience is 10 times mine. After reading your story I sat quietly to let it sink in. I can imagine it slightly because I had the noise but my eyes and eating weren't affected so much. I couldn't watch TV with the sound on at the same time. I could listen to the TV quietly but not look at the screen at the same time. I could hear the dishes and glasses in the kitchen cupboard touching each other! I hated being in the kitchen with that noise. I heard each individual rain drop, which meant all thousands of rain drops were like a stampede coming toward me. Peter coughing sent me around the bend. I still have heightened auditory senses but it has faded significantly. I like the quiet, I don't watch TV in my bedroom anymore. I used to be a news junkie and now I don't like any bad news stories.

When I'm tired I still have trouble with noise but it's not nearly as bad. I hope yours fades with time too. The brain is an amazing thing.

Sandi K. Xoxoxo

Link to comment
Share on other sites

Hi Nessie

Welcome to the site and the the family. So glad that you managed to post your story and your feelings - it does help.

My SAH was nearly 5 years ago and I was also 35 and for the first six months I cried at the drop of a hat and was convinced that it was going to happen again with every twinge I felt. Now, I still think about it and when I get a really strong twinge it does scare me, but I know that if I'm really scared I can get myself to the hospital and be scanned straight away.

The emotional rollercoast you're on at the moment is perfectly natural after everything you've been through - I was the same for a little while with the lights and noise and too many people talking at once, but it does get better and if you introduce a little more sensory influence each day or so you can recondition yourself to accept it.

Take your time with your recovery and don't be too hard on yourself - things have changed and it is tough to accept-at first. As time passes you will adapt to what you can and can't do and you'll get used to it and things will improve.

Look forward to talking to you more - you're doing really well already :-D

Link to comment
Share on other sites

Hi Nessie,

I am glad you are now able to walk your dog again, and can get out on your bike for a bit. That will help you feel better.

I also had trouble finding the brakes on my eating post SAH! Initially whilst in hospital and for the first week or so after being discharged I had lost my appetite a bit…and I didn’t want chocolate at all?! (how odd is that?)...then it all changed! I found my taste buds again and just didn’t stop eating for a few months…! I have now lost 2.5 stone since last March so I am feeling so much better ;) (first half stone on my own and the following 2 stone lost attending a local slimming club :) )

I was only 37 when I had my SAH and I can definitely relate to sensory overload, although I don’t think I had it quite to the same extreme as you.

I still find some peoples voices really LOUD… a guy at work starts talking to another guy next to me, and then someone else will try to talk to me and I have to say I can’t really hear them! I did put one earplug in at work the other day when it got too loud. Seems worse in my right ear for some reason!? I also don’t like the sound of cutlery tapping against a bowl or plate, that seems really loud to me, especially in the evenings…when I am tired. Sensory issues are worse when I am tired, but it has got a lot better over the past 14 months since my SAH.

Hope to chat more soon

Kel x

Link to comment
Share on other sites

Hi Nessie, and welcome to the family. Reading your post reminded me too of what it was like in the early days, but all I can say is, it has got better! I've just passed the one year mark. I still don't like noise much - if there are kids screeching that's all I can hear, even if it's a long way away - and I've only just started to listen to music again recently. I like peace and quiet. It's been difficult with my partner too: although I feel "normal" I'm obviously slightly different to before, and I don't have the energy to go anywhere so we never go out and do anything much (i just turned 51 but I felt 30 before this happened lol).

Anyway, I found when I had my SAH that reading about other people's recovery really helped - I was all "ooh that's how I feel too" when I read them, and so I blogged with the blessing of my doctors. You can read my blog here, but all the posts to do with "the brain thang" are here. Keep smiling and keep coming here to join us, when you can. Take care xoxo

Link to comment
Share on other sites

  • 2 weeks later...

It's been a week since my cake-fest with a friend. and six days getting back on my my feet.

2.5 days of sleeping.

2 days without any fuse whatsoever

and 2 days with tears for every reason I could think off.

my headaches are receding a bit. although I am quite used to headaches stey still scare me.. It is horrible to feel so scared..

But, even after all this it was worth it! It was my first going-out-alone!

I feel really sorry for my hubbie, for gets all the #blah that comes out of me. I'm happy he's very sweet and loving.. (still)

Last monday I started with my first EMDR session to help get rid of some stress and horrible dreams. So far it was a good experience; I hope it helps!

I do read all you posts in the green room, but forget all your names, which makes it hard to reply..

Also.. a lot of emoticons :crazy: make it really hard for me to read.

I read that some of you talked about Headway.. could someone tell me what that is??

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...