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Layla

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Reply with quote  #31 
Oh had the camera down throat and been cut open through keywhole 7 times but they never see or find anything cos they now realise there is nothing !
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Shellly

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Reply with quote  #32 
Morning Layla ,
My doctor never comes out to me , as it's down on my notes that I'm allergic to stemitil ( sickness drug ) it's meant to be one of the safest drugs to give at home . So if and when we get a doctor out , they then have to go to JPH and get another sickness drug for me , but I always end up in hospital as I'm so dehydrated that I need a drip put up . A few times over the years I've been given stemitil even though my husband have said I can't have it , I've had fits , so every time now we ask what I'm being given .
I'm sure I've done something to my ribs , this time as the right side of my chest is hurting, hope it settles down soon .
Going a year with out being sick how lovely, I bet you were thinking, yes I've got over this and then it reared its ugly head . I was in hospital 4 -5 times last year , hopefully this year it will be less, fingers crossed.
I'm dreading going back to work on Monday as I will have to have a come back to work meeting , last time I was told I could have 6 months to a year off work to get over what I'm going through, but it's just one of those things it's with me here to stay , ( unless by some magic it goes away ).
Me and my husband were talking last night and he said he wish he could take a course to give me injections to make me better, and it would be much cheaper for the NHS as well , I did ask the doctor once if I could have a eppi pen or if they done them with a sickness drug so I could inject myself if I felt this coming on , the doctor said it would be too dangerous, so I got more sickness tablets instead.
Take care and have a lovely day
X

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Layla

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Reply with quote  #33 
Morning. Hope you had a lovely evening last night.. I have been quiet lucky with my doctors and and Norfolk and Norwich. They have gone full extent to find out about this condition as there is 2 other patients who go in with this condition..I still yet to meet them : )...but I can stsy in as long as I want and I tell them when I feel ready to go home. I've learnt not to be to quick on that one. My consultant when I was going in every month did mention it would be possible if learnt how to inject or the other half learnt how to inject me with anti sickness.. but settled alot since then so been out aside. Do you get pain in your abdomen with your cv? I get serious pain in my lower left side that I've passed out. Some people do some don't. X
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Shellly

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Reply with quote  #34 
How lucky are you Layla that the consultants at N & N have gone to all that trouble, I wish they would at JPH,
When I go into hospital I see a different person each time , and nobody knows what is going on , like this time I was moved to different wards each day and each day I see a different consultant. I wish that jph would look into this condition, I think it would help them a lot . When the ambulance took me in this time all the patients were in the hallways as their wasn't any beds or rooms left .
Towards the end of my stay this time , a lady was in the bed next to me , ( she had had a op and it was infected) she was being sick but by lunch time she was eating her dinner and talking to everyone, I thought how lovely was that ,I wish I could be like that , she asked me what was wrong with me and I told her I could be sick 200+ times a day , she said o my goodness and I was only sick about 3-4 times and that was enough, she said she'd never heard of this condition and I said not many people have .
I feel like when I'm jph , everyone thinks here she is again , and I feel like they are thinking, she's putting this on because, they haven't got any info on this condition unless they read my notes.
That's good to hear about about the injection, perhaps I'll ask my doctor about it next time I see her.
No I don't get any pain , just the sickness and sometimes a headache, with dizziness but that is normally during the night and it wakes me up , and I think here we go again 😕
Take care and have a good day
X

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Layla

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Reply with quote  #35 
I'm very lucky at n&n my consultant come see me everytime I'm in and I alway go to gastro ward and all the nurse's recognise me and are so understanding.I've even been put in a side cuboard room if no room in a n e and then within hour straight to ward...I thought I was going mad.. untill my consultant sat me and family down and said it's nothing i was doing or could do to help what I was going through..I get serious pain with mine which has mad me pass out. And even burnt half my skin and tattoo of my back where I layied on a hot water bottle and couldn't even tell it was burning me coz the pain in my tummy was so bad...don't know what scear me more the sickness or pain..hope you recovering and getting some energy back.. x
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Shellly

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Reply with quote  #36 
Your so lucky Layla at the N&N , I've been going to the James paget for 34 years with this and every time I see someone different and I'm always moving around to different wards and I've never seen the same consultant twice . This time I was moved 4 times to different wards . James paget haven't got a clue , to tell you the truth I think they think it's all in my head . Like when the ambulance came and got me two weeks ago I was in accident and emergency and the doc said she will be home tonight, but after the injection I was still being sick , and the doctor couldn't believe it , so in the end she said we will keep her in for the night and I was in till last Sunday..
On Monday I phoned up my work to say I'm home from hospital, and they said that's good are you coming into work today, I said no , I've got a sick note for a week .
I wish jph would find out more about my condition it would help a lot , as I do feel alien when I go into jph .
We still have to go through the same routine of getting me into jph even though we know what it is called now , hopefully one day jph would of caught up and they will know what I'm going through.
Take care
X

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Layla

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Reply with quote  #37 
I am lucky. Wasn't the case for the first 6 years. Was test after test till everything come back negative..and cut open so many times. Then after ruling everything out they could finally tell me what it was. But I had read a few article's in magazines where I was like oh my God that sound like me... and I collected them all together and took them to put paient appoinment with me. I think they still learning themself about it.. I'm just so thankful we don't have to pay for hospital treatment. I would b bankrupt lol. X
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Shellly

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Reply with quote  #38 
I said exactly that to my mum and daughter about hospital costs , if we had to pay I don't know what would happen, I'd be the same as you , with no money, it must cost them a bomb to take me in hospital each time .
Can you remember your consultants name , I might give it to jph next time I'm in and ask them to give N@N a call .
Before I knew what I had i used to search the net , by putting in I can be sick 200+ times a day but nothing came up , I'm so pleased that after 34 years I have a name for what I've got , I just wish JPH knew more about my condition, I wish they would do some research on what I've got and help me , I just feel I'm swept under the carpet because nobody knows what to do with me and that's why I'm sent to so many wards and never stay in the same ward for longer than a couple of days ,
My husband said to the consultant now we know what she's got can we come straight to A@E and get this sorted before she gets to bad in a cycle , they said no , you will still have to phone the doctor.
But this time I went into jph I was only sick at home a couple of times , and my husband phoned 111 as he knew what would happen, by the time the ambulance arrived I was so bad , I couldn't even talk , I got into hospital and I was sick a few times more and then sick on and off for a couple of days , but I stayed in hospital for 6 days , I wish I had one consultant looking after me .
When I go into hospital with CVS I do feel that people are thinking I'm putting this on , as in jph I'm the only person to have this .
I keep getting told I must drink , I must eat , but how can I when I being sick all the time , then I'm asked are you depressed, anything going on at home , and all I can say is no I've got CVS and then I'm looked at gone out as if to say yeah right ..... what's that and then my husband have to go through it all again to say what is happening to me , if he's said it once he's said it a thousand times .
I'm now going to bed as l want to keep to my routine,, other wise I don't know what I'll wake up too .
Take care
X

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Layla

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Reply with quote  #39 
Morning sorry I dropped of on sofa last night. I to stick to routine and when take my amitriptyline to be honest I can't fight it and I'm gone ..do sometime have the late night but feel so tired and rough the next day for it. My partner know exsacally how your husband feel. For the first few years in was a nightmare we had to go through it again and again. But know they know. X
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Shellly

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Reply with quote  #40 
Morning are you on amitriptyline everyday, I take it every night and quite a high doesage. When I was in hospital they tried to give it too me then , but I couldn't take it as it only comes in table form , I started taking it 5 days into my stay , but I take it every night know I'm home .
We're both lucky that we're got partners who understand what we're going through, I just wish jph knew what I'm going through, every time I'm in hospital, my poor husband has to say again and again what is going on , and I know the next time I'm in he will have to go through the same again , it seams to fall on deaf ears as like I've said I see different consultants every time. It's so annoying.
I know what you mean when you said you " can't fight it " as when I'm starting my cycle I go down like a ton of bricks, and can't do anything, I can't talk or move , I just want to sleep but I can't sleep because I feel so ill.
I'm back to work tomorrow ☚ī¸
I'm so glad I have a week off to recover as it takes it toll on me and I feel exhausted after a episode.
X

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Layla

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Reply with quote  #41 
Yes I'm on a night doesage at night. Like you I can't take it while being ill but as soon as I'm able to take tablets in straight back on it.. I think it's made a little difference but still have attacks. I can't move or talk and just want to lay in hot baths as it takes or eases the sicky feeling for few mins. But alibi want to do is sleep but you lay there and hours pass and you sort of go in and out of conshiness or i do and go 3or more days without sleep till all settled .I'm exhausted after an eppisodejust sleep loads and feel weak ..Hope all go ok back at work tomorrow. At the end of the day we can't help it and have no control what so ever. And this is our life's! Its just hard some people don't understand .x
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Shellly

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Reply with quote  #42 
I don't know if the amitriptyline have made any difference to me , I just know I fall asleep within half hour of taking it , I know some people who are on a much lower dose to me and they can't get up in the morning. I'm allergic to that many different tablets I'm just happy that amitriptyline is one that I can take.
I've never tried to have a bath at the beginning of a cycle , as it hits me that fast , perhaps next time ( fingers crossed it will be a long time away ) I will try to have a bath and see if it helps or not .
Sometimes when I go into a cycle I feel very moody, as I know what is going to happen,, and I get fed up with this happening, I try to carry on as normal but it is hard . Last year I only got out of hospital 6 days before I went on holiday, I was so frightened of getting ill on holiday. But we must live and we mustn't let this crazy thing take over our lives , but when I do get sick I can't do anything, no matter how hard I try .
I do feel so sorry for my family having to put up with this sickness I get, as they are all so worried about me , it must be horrible for them to watch me go down hill so fast .
I did say to my husband this time , that he didn't sign up for this when we meet , and he said to me you didn't sign up for it either .
How sweet of him .

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Layla

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Reply with quote  #43 
I am gone within an hour of taking mine but I do find the next day I feel really spaced out and so drowsy. I start feeling tired and rough and run down. Then the moodiness start and I feel i find things harder and get tearful next thing you know I'm having a eppisode. I find myself having to take naps as tiredness is a big trigger for me. All friends used to burn tbe candle at both ends as they say but I was always the one having to be in bed by nine or I would suffer.. I got my other half to film me when having a eppisode i wanted to see how sceary it is for them to see. I upset myself watching it though. It wasn't me.. but my little girl has seen mum no different and she take it in her stride bless her and the ambulance people if the same as I had before even get her involved in helping. I still have to watch her cry every time I go tho. Just wish every time was the last time. X
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Shellly

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Reply with quote  #44 
Wow your brave getting your other half to film you whilst your got a episode, I don't think I'd dare , I know I look very white and my eyes sink into my head , and I don't look the normal me .
Yes I normally go to bed at 9 , otherwise I feel ill the next day , I always take my tablets at 8.30 I must keep to my routine, which I find is very sad , but I can't have a episode as it worries me so much .
I can remember my daughter ( when she was a little girl ) she wrote me a letter saying please mummy please get better and don't be sick anymore, it broke my heart , but still years later I'm still being sick ,
Yes a lot of my friends burn the candle at both ends but no way can I , I can remember being out with my husbands friends and I asked for a still drink ( I can't drink fizzy ) and the man said to Alan ( my husband) shall we get her a " short " she will be ok , he said don't even think about it , even with a sip she will end up in hospital, he said sorry I didn't realise that , Alan said that's why she isn't drinking as she can't.
I do feel sorry for myself when I see everyone enjoying them selfs, but it's just the way I've been wired, so I have to put up without doing things and laughing when everyone is tipsy, but at least I don't end up with a hangover the next day , just very tired, so I stay in bed till late .
You poor little girl , my heart goes out to you all , it must be hard for you all .
Take care
X

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Layla

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Reply with quote  #45 
I know I'm as white as sheet and like you my eyes sink in. Look like death if honest... when was pregnant was really ill think I was in hospital for about 6 out of the 9 monthsand my father in law said I was the closed thing he had seen to death but still breathing.. it is sceary to watch but I wanted to see it through how my littlen do. . My little girl the other day said if she could have only one wish in the world it would be for mummy to never go back to hospital and to just live a normal life..break your heart ok and can't help but feel guilty. Only ever had one hang over or hospitalized the next day for having one drink never touched any since if we have a wedding or anything and it's a late night I know to try catch up with sleep and lay in when can.. Bless ya thanks so much. But my heart go out to you and your family to as we know what they go through. Think my little girl see it as this is my mummy and don't know any other way. xx
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