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Weirdly unexpected


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A weird thing this week which has taken me a bit by surprise. I've always thought I've been lucky and done well with this SAH thing. Well, I have really. OK there have been a few ups and downs but nothing dramatic. Sunday night I slept badly. That always sets me back and I've felt sea sick since. I'm 16 weeks now and had a follow up at the hospital this week. I'm signed off which should be great. Yet now I feel bizarrely cut off. Even though I have had no reason to contact the hospital since the early days. How weird is that? I suppose the reason is being signed off as OK yet actually not feeling quite right either. And I hadn't expected that to catch me out. But it has slightly. Even though I know it's a bit irrational. I am beginning to wonder when I will feel 100%? Next week? Maybe next year? Who knows?

I am guessing others have experienced this? And I hope maybe it will help others to hear this tale?

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JellyB signed off is great but it's also scary. I felt very cut off when discharged from he hospital after 17 days of intensive 24/7 care. It's a huge step from that to being home alone or with your partner. For me my SA was completely out of the blue so who was to say that it couldn't happen again & as I wasn't being checked how would I know? I know you are at Wessex so you can alwyas contact lesley or Jane with any concerns & i certainly did in the early months. I also had help from headway so it's worth contacting them for support if you want to.

There is also the Wessex support group meet in November which should be great & then you can share your thoughts with people who have been through the same thing, it really does help when it's in person!

Hope that helps in some way xxx

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Hi JellyB,

I know how you feel,it's a strange kinda feeling, hard to find words for to explain.

I felt a bit adrift. It's a major thing to go through yet I felt kind of left to get on with things. Don't get me wrong Lesley has been a god send to me, always there to speak to whenever needed. However, I've drawn most of my strength from this site with other peoples advice and stories. As Gill says, the Wessex support group was really good and I'll be going to the next one in November.

It's such a long mental and physical journey of recovery, one that for me has been very lonely at times. Only people who've been through what we've been through can truly understand.

Hope to meet you at the next Wessex meeting.

Take care,

SarahLou Xx

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Jelly B, go see your GP. I suggest this because I was given the 'all will be well in time' by the neurosurgeon in mid-December so I thought that meant in a couple of weeks I would be back to my old self. When I wasn't I thought it was something I was doing wrong and that next week I would be fine. I should have just gone to my GP and shared how I was feeling. It took me a couple of months to get back to my GP and by then I had worn myself out trying to be all better.

You may be discharged but you are not fully healed. That takes time. The amount of time is different for everyone. This is why it's good to stay in touch with your GP to track your progress and ensure you stay on the right track. : )

Sandi K. Xo

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Hi Jelly

I saw Surgeon this year and he said he would keep an open door ie if I feel rough or ill or worried about brainbox not working correctly.

I am to go and see Doctor and he will make appointment with Surgeon straight away....So I am quite happy with this.....I have to have another MRI in 2 years.....arghhhhhh my fat botty doesnt fit in the thing they put me on for MRI lol

It is understandable you are worried but you have your Doctor and if he thought anything was wrong he will contact Hospital as he has your history ......I think you'll be alright....in fact I am sure you will be.

Cheer up and keep getting better as they say "Onwards and Upwards"..ok off to start my diet again !!

All the Best

WinB143 xx

Edited by Winb143
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Thanks all for your comments. Yep will definitely be OK. I just found it a strange feeling really and surprised about that. Anyway, no major thing. We are v lucky down here as the Wessex team stay available to help with any concerns etc. I am still amazed by them there. Maybe will come along in November. Good luck all.

Bye

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  • 3 weeks later...

Hi Jelly B.

Welcome to BTG.

The isolation that follows being signed off is quite startling.

I assume that the neuros involved with you have given you a date for a follow-up scan.

This is normally the case, so I would be surprised if they cut you loose completely.

Please don't expect to feel normal too soon. It can take months or years , in some cases, to return to your old self.

Some of us have to completely re-invent ourselves.

It sound like, physically, you are doing really well, so far, but don't underestimate the psychological repercussions of your event.

Fear of re-occurrence or unexpected nausea/dizziness/fatigue/numbness, can all invade your recovery and leave you feeling vulnerable and isolated.

It is a common subject, on this site, how we are left alone to work out how to cope with all these new alien feelings.

The follow-up care is lagging, sadly, behind the clever surgery.

This is the priceless value of BTG.

All of us have felt these things to some extent or other, and though, no two people are the same, we all understand the uncertainty that you feel at the

moment.

Sixteen weeks is a very short time. I am seven years down the line and still reaching for the 100% that may never come.

You have to be alive to reach.

Keep talking, keep in touch, there are a lot of clever people on this site who will help in ways far beyond clinical matters.

All the best.

Bill B.

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