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Sue's Story - My Day Off


Sue62

I woke up on March 14 2014 my day off feeling very peculiar don't recall having a headache just knew something didn't feel right thought that if I stayed there bit longer that I might feel better. This however was not the case and I remember thinking I really needed to get the attention of my kids who were getting ready for uni otherwise something awful was going to happen.

I managed to crawl out and lie on the lounge room floor where they found me vaguely remember asking them to call an ambulance. Much of that day is a blur went to RAH large hospital in Adelaide had an angiogram where it was discovered I had an aneurysm which had burst but had stopped bleeding at this time had no idea how sick I was. My mother and brother were now there. Next thing I remember was being on a ward Doctors telling me what had happened and organising coiling for my aneurysm the following day.

Next few days a blur of angiogram headaches tablets and having my observations taken a lot. Plus the start of what was going to turn into weeks and weeks of nausea and vomiting which resulted in large weight loss. My recovery from coiling wasn't great along with nausea I apparently became quite confused fortunately I don't remember all of it. I developed hydrocephalus which required a shunt which cleared my confusion. However nausea and vomiting remained huge issue not helped by two infections.

I then found out that unfortunately the coiling had not been a complete success and the surgeon would be required to do further surgery to clamp the aneurysm. By now though I had been in hospital 9 weeks and due to my poor condition they wanted me to go to Rehab and then home for a few weeks to build myself up.

This was a difficult period still feeling quite poorly plus the concern of a major surgery playing on my mind. Extreme fatigue and headaches were also still and issue. I had also lost the vision in my right eye following the aneurysm.

Eventually returned to hospital for clipping surgery how ever due to position of shunt I needed that removed prior which concerned me greatly as I knew how awful I felt before its insertion.

Clipping surgery ended up taking nearly 15 hours so felt completely flat following that. Nausea and vomiting didn't seem such an issue and CT scans did not indicate further hydrocephalus so I was discharged after three weeks. Didn't really feel great but persisted at home however after 2 weeks still very flat began vomiting could tell it was CSF ambulance back to hospital another CT scan massive hydrocephalus requiring another shunt and another month in hospital including a week in Rehab.

Have now been home about 10 weeks had my eye operated on last week which has caused me more balance issues than I had due for review next week.

Know how lucky I have been to go through all that and end up just about ok. But still feeling exhausted at times and wondering when I will feel almost normal again. Really wanting to go back to work be able to drive etc but just feel very flat and over it at the moment. But grateful. Would appreciate any advice helpful hints.

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Wow sue. Welcome to BTG . Congratulations on surviving all that and for gradually coming through the fog. Some shared experience with you; coiling, hydro, shunt so I know that feeling of knowing it is low pressure and having to do something! You've been through some major surgeries, recovering from effects of bleed and hydro and Things are going to improve for your but it will take time and you need to be patient and kind with yourself as there will be some strange sensations along the way as you heal.

 

I'm not sure what the rules are in Oz but in UK you have to have six months clear from brain surgery to be cleared to drive but to be honest it's a good way of reminding you to take things at a different pace to what you did previously. Accept all offers of help, set small goals and celebrate all your achievements big or small. Take care .

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Hi Sue,

Right now, I guess you feel like you've been dragged through the bush backwards and trodden face down into the dirt!  Goodness, you've had a rough ride, but then you're not alone - we understand because we've been there too!  recovery is a slow process, but as long as you don't go too fast and go at your own body's pace, you will make steady progress.  Keep a diary, you will be amazed at the progress over time!  What you have been through is tough but it does get easier!

 

Get your life into focus and look after No.1 first.  Learn to say 'No' and just chill for a bit and get yourself better - work, driving etc will all still be there for you when you are ready.  Don't be impatient because you will find your body has a sharp and robust way of telling you when it isn't ready to do something!  So please be careful!

 

Good luck and let us know how you get on!

 

Macca

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Hi Daffodil, thank you for answering much appreciated. It was only when I started writing down what happened I realised how much I had been through though that was a condensed version. Have mostly been coping quite well it's really only the past month or so I have felt a bit flat and miserable at times.

Maybe because improvements start to slow down and more so I think my expectations of myself may be a bit high and I was getting frustrated to still feel so tired especially when I haven't really been doing anything. So think I do need to start being kinder to myself and set goals for each day.

Rules for driving are much the same here but I also had the added issue of no vision in my right eye which is hopefully resolved following some eye surgery a week ago. Though I think although anaesthetic was light still made me very tired which I probably didn't allow for. A diary is a good idea so will give that a try.

Am starting some hydrotherapy next week so am hopeful that will help with some balance issues I have still.

Mostly I think I need to be somewhat more patient although that has never been one of my strong points. Again thank you for your kind supportive words it's has helped as you know what it is like and it is extremely difficult to try and explain that to others.

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Hi Macca, thank you too for your reply was most helpful. Apologies thank you for the diary idea have started that today. As I said above just writing it down has helped especially as its to people who know what it is like to go through an aneurysm and all its after effects. Will let you know how the hydrotherapy goes feeling positive about starting that.

Sue

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Good luck Sue!

I heard a great saying yesterday -"Life doesn't come tied with a bow - but it's still a gift."  I don't know who said it, unfortunately, but it's a good way to look at life!

Macca

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Macca, it's from Regina Brett's 50 lessons in life. She makes good sense! ; )

 

Just take it easy Sue. I had my SAH nearly a year ago now and I too had complications. I went back to work this September and I am exhausted. However, not as exhausted as I was a year ago. So, I have made progress and that's a positive. The diary idea is great and I wish I'd thought of it sooner. Take care of yourself.

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Hi Sue,

 

I find singing and smiling helps me, but if you need a cry have one.

We are all individuals and we can get there.  BTG has helped me no end.  Knowing I am not alone in this helps. 

We have done well with what we have been through.  look back at how you were, now look back in 4 weeks see if things are progressing for the better.  They will xx

I wish you good luck in your recovery and I'll sing you a song later. lol

Love

WinB143 xx

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Oh Sue just give it time. This all just sucks at times, but there are blessings that will reveal themselves. Just let yourself feel how you feel. Don't put on a happy face when you don't feel it, but don't wallow in self pity because that can be a dark and ugly place. Ask questions whenever you have them because this is such an odd and funky thing to go through on your own. Don't feel alone because you're not!!

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Hi Shellie, thank you for your positive comments. Am working toward returning to work. So have been doing some hydrotherapy for the past two weeks which I have discovered is deviously exhausting but feel it is helping me. Balance is my biggest issue at the moment but hopefully visit to eye specialist on Friday as recently had small eye op to clear a bleed from my SAH. So am hopeful my balance probs are related to this although I suppose it could still be from SAH itself would really just like it to improve. Hoping things are quite well with you. Sue

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Hi Teechur, your words are so true. Think recently had misplaced my positive and optimistic thoughts. However yours and all the other positive words that I have got on here have helped greatly. Sue

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A song for Sue

 

Well you gotta accentuate the positive, eliminate the negative

Latch on to the affirmative and do not mess with Mr in Between.

 

Claps hands and does a little dance  and waves to Sue.

Cheer up and join the BTG choir with Carolyn USA xx and me of course. lol

 

Keep Well

Win xx Now smile xx

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Hi Sue I have just read your story and for some reason i missed it earlier.

Sorry to hear you have had such a rough time but a lot of us have so you are in the right place for support.

Try to think of how you will improve and that you will get better from this, I think that is what I clung onto in the early part of my recovery.  It's important to know that there is light at the end of the tunnel.

As Daff has said accept all offers of help and even ask for help of you need it.

Take care and I wish you well.
 

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Thanks Shellie,

No matter what question you pose on here someone seems to have an answer - that's great news for everyone.  Sue, I hope you are coming along well and making steady progress, keep doing the diary, it really will show a difference over time!

 

Macca

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