Brainline.org

Thanks for posting a link to the Lost and Found article on this forum. It should be required reading for all relatives and friends of anyone with a BI. There is so much which is so true in this piece and I was nodding at all the comments. We all know that our behaviour has changed but we are assuredly, definitely not mad, as someone cruelly said to me soon after I came out of hospital.

The NHS were amazing BUT we need much better understanding of BI and ongoing aftercare, as issues dont just stop when you leave hospital. That was actually when mine started and I left my wonderful nurses and was flung back into loud hectic full-on life and expected to be smiley and slot back into the old roles. Utterly impossible and I have never been more knackered ( shudders at memory) Happy weekend, all. I am starting a new job on Monday (Yesssss!) so will do as little as possible for 48 hours x

[cat3]

Couldn't agree more with your comments about leaving the safety & care of medical staff to face the real word.

Best wishes for Monday abi ; hope all goes well. xx

[Hidden in reply to cat3]

Yes, I got so attached to my nurses. I was in a semi comatose state and one of them talked to me. I apparently heard him because I am told that I would laugh (even in a coma) When I woke up and met him, he felt so familiar and life was so terribly weird and scary in those first few weeks on the ward, where all these strangers were coming in to tell me they were my family. I was, to be honest, so glad when they had gone and I had the peace and reassurance of my quiet ward, watching my nurse padding about. I hated him going off duty and the day I was wheeled off the ward and had to say goodbye was one if the loneliest I have ever known...

Thanks cat3 x

[cat3 in reply to Hidden]

Strange isn't it abi. Most people seem desperate to 'escape' from hospital care but I found it so emotional saying goodbye to nursing staff (I felt one would crack my ribs she hugged me so hard).

Then watching the hospital complex recede into the distance as my son drove me away, I was inconsolable. (He was an absolute star).

I think we've already sussed after such a long stay that we're very vulnerable and, despite having been home for one day the previous week, I felt my whole life-support had been severed.

Then coping with issues that seemed quite quirky and (in the safety of the ward) amusing, becomes a real challenge in our own home and even more so in the outside world.

But we seem to have muddled through don't we ? and you are bravely tackling a return to work, well done for that.

But I watched a news item earlier this week about 'Basic' which is allied to the hospital I was treated in (Salford Royal) and right next door. They are starting to recognise and treat BI survivors who, like us, received no follow-up care and are struggling to cope. It's a good start. x

[Jembly in reply to Hidden]

Good luck for tomorrow abi1

I was fortunate was with the same company, but eventually going back really scared me.

I can understand how you felt leaving hospital. Leaving hospital was sad for me even though I was going to a rehabilitation centre soon I would be until then staying with my parents of which I had never done before since they had moved away when I was in my mid teens, so very worried. Not having my friends or work mates visiting me or seeing familiar nurses and doctors I had always seen since I became unconscious. Within a week of leaving had a suspected fit but I think was because I was not used to the pace of the outside world. I should think your sadness of leaving hospital is very similar to a lot of people when they leave hospital. Luckily was taught to walk and other things like talk though have no memory of that but still could not write.

All the best for tomorrow and take it in your stride

[Hidden in reply to Jembly]

Thank you x Yes, I was not leaving hospital, just being moved to a new ward with new nurses to get used to which, as we know, when you are that vulnerable, is horrible. To make it worse I was moving to a different floor in the same hospital to start chemotherapy for my other illness, cancer, just what I needed and then, yes, I was in a rehab hospital too and got home just before Christmas, worst one i have ever had and couldnt even drink because of the meds I was on.Having a glass of wine now.tho. Hey, we made it. We are the lucky ones, although it takes a lot of anger and grieving to get to that point. I have lost jobs since my illness because of my wonky memory and been made redundant,.done zero hours work etc. HOPEFULLY this one will work out x

[Gaia_rising]

Abi- couldn't agree more about the lack of follow-up, and the expectations others have. I had people in-my-face fussing over me, which I hated BEFORE, and people who didn't know what had happened, making unreasonable demands, no middle ground, of letting me find out what I was capable of, at my own pace.

I'm a tenaciously determined creature, and was back at work four weeks post-discharge, albeit part-time. I needed that, I needed the routine, and the feeling that I was 'doing' something, rather than sitting at home, watching my body physically waste. Now, in July, after the ruptured aneurysm at the end of February, I'm back to work full-time, doing almost all of my old duties.

We need a voice, and we need that voice to be heard, I'm pig-sick of people stage-whispering "Should she be doing that?", because there just isn't enough information and communication.

Coming out of hospital was overwhelming, going to the local shopping centre was overwhelming, lots of things were suddenly not-the-same, and I've had to learn to work around them. Unfortunately, I've had to teach myself, and teach myself not to punch the husband, who is currently SHOUTING into his mobile phone, in the face. (Just open the back door, if you're going to shout.)

The husband and son don't seem to have had any wrap-around care, either, the son's doing his A-levels, and the husband thinks I'm the cook/cleaner/secretary again, they're both trying to deal with it their own way. The boy knows I'm 'Mum, but more irritable', the husband is actively avoiding me, because I didn't either die, or come out of hospital as a Stepford wife.

I'm rambling.