JayKay

Oh how I know how you feel! My mum had a severe stroke 4 years ago and then she had aspiration pneumonia, then C diff and MRSA (all this in a French hospital). It was awful to see her struggle to take each breath. She was in the hospital 6 weeks then moved to a stroke rehab place. With speech therapy, occupational therapy and physio she improved in leaps and bounds. Her speech at first was like someone sleep talking but now it's loud and clear, even though she still has difficulties. She lives alone again now, with the help of a cleaner and a home help, and she is doing amazingly well. Oh and as for writing, she wrote gibberish when she first started to write (with her other hand because of the paralysis), and even now the sentences she writes in birthday cards are quite often a bit bonkers! The hardest bit at first was being told "we don't know" to any question we asked - how long will it take? will she walk again? will she talk again? etc.... But improvements keep happening so take heart! Big hugs

Just popping in quickly to say hi and welcome! Hang in there And remember, your mum is in there somewhere - don't hesitate to talk to her and connect with her even if you feel she doesn't know you are there or doesn't know who you are. Take care and I hope mum makes a good recovery. Remember we are here, and you can ask us anything! Make sure you get some rest. Best wishes x

Oh I heard about her!! Thank you for the links!

Hi there! I'm sorry you are having these feelings. I know that the counselling I'm getting at the rehab place is very very helpful. I hope you can get some help too - we've lived through a life-changing event, and some of us need help to come to terms with it. Take care!

Aw Blueday - thank you I know, I've been lucky and don't have probs with my limbs but I know some of you do, and of course my mum went through it after her stroke, although she is using her right arm and leg ok now. Yes, it's very interesting to have someone's perspective, who is very articulate and who can make us realise what it is like. Glad to have helped

My sister-in-law switched me on to this blog after my SAH - the author is a University Professor who had a stroke earlier this year. She writes so well, and this recent post is particularly interesting because it describes what it is like to learn to use your arm and leg again. Fascinating!!

Hi Blueday - do you get a sense of achievement reading/writing that? Because you've come so far! Re the IQ = mine hasn't been tested, but it struck a chord because one of the things I said to my psychologist is that I feel "stupid" now. She said not understanding things or getting things wrong doesn't make me stupid and that made me feel better!! I wonder how well designed the IQ test is - does it take into account the speech and understanding issues you have since the stroke? I'm not sure your IQ has actually dropped Blueday!! I have very high standards and I don't like some of the things I do now, but I'm trying hard to believe that this is only temporary and that I will be back to the old me one day. Good luck!

That must be so hard to deal with! I'm the opposite - can't be bothered half the time but I think it's the tiredness lol. Have you spoken to his doctors? It's lovely to see a picture of Richard

I'm sorry Luisa I have not yet gone back to work, but this is what I fear! I hope it gets better for you, and you can rest up in the afternoons and get some sleep at night. Good luck!!

I just found this on the ITV website - I think it was on tv a couple of days ago. This little 15 month old girl had a bleed on the brain. Interesting video including, at the end, their resident doctor explaining the types of stroke. The little girl is fine, apart from epilepsy now.

I know, Stephen, it's awful Well, we must stay strong and get our GPs, MPs, Stroke Association, anyone else we can think of behind us!!!

Talked to my partner at lunchtime - he says the doctor didn't tell him he couldn't talk, but it was obvious by his manner.... I've got the complaints form from Atos Healthcare so that, separate from my appeal, I can complain that the doctor blatantly disregarded things I told him. Must also remember to do that letter to our MP as told to by the Stroke Association - he'll get both barrels, from me AND the Stroke Assoc! The only bit of good news is that there was £44 of my ESA outstanding and they've paid it today.....

Hello and welcome! You're in the right place Like the others, I look forward to hearing more from you....

Well I'm glad he didn't try and tell my partner not to speak - he'd have given him what for!! I checked out the e-petition thing, it's on the No. 10 website but guess what? All petitions are put on hold until the new government "sort out" the petition bit of the website "later in the year". Harumph!

OMG Steph - you are no fraud!! I can't believe they told you your sister wouldn't be able to speak, what an absolute farce the whole thing is!! My psychologist today told me that what I'm going through is text book. Any brain trauma, let alone brain surgery and six weeks in hospital, leaves a person weak and fatigued, as well as the other cognitive problems it presents. She could not believe that I got refused ESA, nor could my GP! They say going back to soon is just going to be counter productive and set my recovery back. They will be doing reports for me, but hopefully the appeal itself will be enough. Good luck for your ESA result! I think that ex-nurse you spoke to was right - people who have jobs to go back to (like both of us) should not have to go through the medical. Even the lady who I saw on my Pathways to Work interview said they'd probably go on what we've sent them and that I shouldn't need a medical....! I think we should get a petition together. In fact, I'm going to look into it now. I know there's a website where you can do this.... I'll keep you posted. Maggie - thank you for the compliments. I do love my photography

OMG I got ZERO POINTS! The doctor blatantly disregarded everything I told him about getting confused, upset, angry etc. He said I could sit and stand for more than 30 minutes although my maximum is 10. I'm so upset I'm crying now even though I knew this was a possibility. It's just a feeling of shock that I now have to appeal. My GP even said "there's no way they'll find you fit for work". It just goes to show what a farce this whole thing is. I have to go and download the correct form now. Wish me luck.

Sorry I have no experience of this, but when I had my SAH I told them I was not a good patient and would move, so they gave me a GA (or at least something - I wasn't awake for it). I don't know if this is always possible or it was because I was so poorly, but it's worth asking. Good luck!

I agree with what John said. My memory problems aren't as severe as your husband's either, but is he seeing a neuropsychologist? They might be able to help. You sound like you might need help coping too. Can you talk to your GP and see what help is on offer, counselling or whatever? Take care!

Isn't it awful?? I think when asked what I did all day (a typical question it seems), I think I said um I read a bit, and I sleep....!! If you appeal you should get the ESA reinstated while the appeal goes through, that's what I've heard from someone who is a Pathways to Work person.... GOOD LUCK!

Good luck with everything Zoe. I hope Richard gets to see the neuropsychologist also; it's certainly helping me come to terms with everything. Fingers crossed for Xara too!

I second what everyone else has said! You must cut yourself some slack. My SAH was in Feb and I'm STILL coming to terms with it, when at first I was all "oh, I'm fine, I survived, it's nothing"!! Just last night I had a long talk with the other half, and he says I'm like the Tazmanian Devil, but I feel if I don't do it, no one else will. I have been told by the neuropsychologist to tell them I can't do this all by myself - even though I want to. I really can't stress enough how great it is to have the psychologist to talk to. She is making me realise this is actually a big thing that I (we!) have gone through and it will take a LOOOONG TIME to get better, but that it is only temporary. Hard to accept, but there you are... Take care x

LOL Blueday - you made me smile. I'm not bitter either I'm surprised you didn't qualify for ESA??? I can't understand why! Are you sure? Did you try and appeal? Oh and where are you in SE London? My partner comes from Lewisham/Catford.... and now he's here with me in NE London ha ha! Anya - that's very interesting! Yes, you described my job to a T. I am just about coming round to the idea that actually I'm not able to do what I could. I could multitask with the best of them, I was told I was "very sharp witted", was asked by Jr Doctors if I ever thought about becoming a doctor (answer = er no thanks!!!). Anyway, we are going through this with the neuropsychologist and it's very helpful. I totally thought I'd be back at work after a few weeks. Ha Ha HAAAA! I'm trying to use this time to relax and mend myself, and try and build up stamina. Mentally, I'm proofreading a Spanish friend's translations into English, which is taxing my neurones lol. It's my therapy. I would actually like to become a photographer and keep meaning to chat up some mums I know to build up my portfolio before I start charging. You can see some of my pics here , scroll down for the best ones. Anyway, keep the faith everyone!

You always having something interesting to tell us Blueday!! And I'm really impressed because your posts are long and it must take you ages. Keep it up

So about the ESA medical. What a joke! I understand why they want to do this, to weed out the scroungers (although why anyone would want to survive on benefits is beyond me!), but it makes it really hard on those really unwell people. At least I'm not too bad but even for me it was exhausting: Took us an hour to get there, then there was an hour's wait, then the nurse who was going to see me picked up my folder, took one look at it and said she couldn't see me because I'd had a stroke and I had to see the Dr. Guess what? There was only one dr and he had someone else ahead of me. I started crying and had to sit down; my partner said "look at her - this is what we are dealing with, it's too hard for her" etc. Anyway, we had to wait because no way was I going home only to come back another day. Saw the dr for about 10 minutes after that two hour wait. He took a few notes, asked me if I could stand and hold my arms out, arms behind my head, bend down or crouch down (of course I couldn't do the bending/crouching bit). I think he said it was a long healing process, but I didn't take in half of what he said. My partner says he said something about politics and trying to find me something else if I can't be a medical secretary any more. I didn't say, but I think I should have, that I have a job waiting for me at the hospital. If I could work I would, but I can't. Anyway, who knows what the answer will be. I did find this link to the points system for the medical, which is interesting and on reading it, it looks like I should get sufficient points. I also saw my GP just now, and he has signed me off for a further 2 months. He said there is no way they can find me capable of working. Only time will tell eh?! Oh and in my research I also found some information about appealing if you are turned down. Because your ESA stops if you are found capable of working, you put in an appeal and the money starts up again on the basic rate while you are waiting. Hopefully none of us will need to appeal, but who knows.... Download form gl24 here.

Wow! That's fantastic!! You're giving me hope - the more I try and do, the more I realise I can't do it... FOR NOW, but to know there's light at the end of the tunnel, that's so reassuring. And Karen, I also give thanks that BTG exists because it must be very hard to go it alone. Thank you!