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Confusing times.


Guest mollie
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Guest mollie

Hi everyone. I hope you are all dealing ok with everything and are recovering well.

I need to pick some brains if I may (pardon the pun)

Since I had my aneurysms 2 years ago I have been forgetting to eat. If food is put in front of me then I will eat it but a lot of the time I forget to eat. They have now discovered I have low potassium levels which is causing palpitations feelings of sickness, cramps, lack of muscle tone, pains in my left kindey and God knows what else. I have just come out of hospital where I was sort of treated :-( I do not know what they are going to do next as all they gave me was some potasium effervescent tablets for 3 days (they are vile..........lol) then sent me home with no instruction as to what happens next I am just wondering if anyone else has had memory problems like those I am experiencing. I have just been for more blood tests today and an ECG. The other week I had blood tests and a lumbur puncture but nothing was picked up then (maybe they weren't looking for that) I have a lot of trouble with the oven etc mainly leaving it on like I did yesterday . I had no idea till i smelt the burning and the fire alarm went off. Good job I hadn't gone out or my house would have burnt down.

The DSS Have also stopped my DLA and I am worse now than I was after my first op. I didn't claim till after my 2nd op and have had another since so I have appealed and they still said no so now it's going to a tribunal and I have been supplied with a list of solicitors (from them) surely that can't be right........sounds biased to me.

I would appreciate it if anyone can help me with my dilema cos i am at my wits end with all of it

Thanks everyone and take care

Mollie xxxxx

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Hi Mollie

Sorry to hear that you've been so unwell lately. I hope the tribunal goes in your favour the list of Solicitors they supply are independent its just Solicitors used to handling Tribunals.

Tribunals are completely seperate from the DWP and base their decisions on the information you provide so you will get a fair hearing.

My memory is still not all it could be at times but I'm more fortunate than you as I have other people living in the house who can remind me of things. I still get confused about tablets though and can never remember if I've taken them or not which can mean a painful few hours until I can take more.

Do you have a local Headway Group you can get in touch with. I'm sure they could offer you help and support see useful websites n the Homepage.

Take care and hope things start to improve soon for you.

Janet x

Edited by Janet
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Hi Mollie, sorry to hear about your problems with the DLA, just make sure you tell them how you are when it is at its worst. Hope you get justice at the tribunal.

I agree with Janet, Headway are very helpful.

I am just over 2 years after my SAH and have quite a bad memory as well.

Good Luck

Vivien x

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Guest mollie

Hi Janet and Vivien. Thanks for your replies they are really appreciated. Thanks for putting me straight about the advocates that makes me feel better knowing they are independent of the DSS. The problem I have about telling them how I am is basically I forget whats happening on a daily basis and if they don't ask the right questions then I can't give information as to my condition. If they don't ask the right questions on the day then I am snookered which is what happened when my review was thrown out. . What i do remember is the guy (Doctor ) was in my house for all of 20 minutes to assess me and get this bit. He said that while I got dressed he would go to the skip and dump some rubbish he had in his car....that kinda floored me..lol...............can't understand why he didn't stay and assess the difficulty I have getting dressed. So in my view the assessment wasn't done properly so the outcome was unfair.

I am writing everything down now on a daily basis so that I can take it all to the advocate once I get a date for the tribunal. Just hope I don't forget where I put it...........lol

I will let you guys know how I get on with it all but its really worrying as i have so many hospital appointments at the moment and they all cost money and as you are aware being on sickness benefits doesn't make you rich........lol. I can see a day coming when I can't afford to get the bus or a taxi to the hospital cos i am skint. Then I'll be in bother for missing. Seem to be going round in ever widening circles. Anyway whinge over...........sorry

Take care and thanks for your help

Mollie xxxxx

ps. Don't think we have a headway group on the Island but will check it out xxxxx

Edited by mollie
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Hi Mollie, I am sorry to hear about your problems, I too have a very bad memory I am now thinking about getting a note pad to jot everything down, I am already writing things down too.

As for the DLA I do hope that you get a positive outcome, to be honest I really do think that we should get it because we do have problems after SAH.

I also have to take pottasium tablets and I agree they are so vile, I actually put my effervescent tablets in orange juice then it does not taste so bad.

Take care.

Myra xx

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Hi Mollie iread your bit about dla and if you go to dwp direct there is a criteria set out there about physial and mental capabilities and i think most people who are in early stages of recovery meet these .

Also the other day while my wife was at a specialist rehabilitation centre isat with nothing else to do but read the info on the wall and the disabilities discrimination act was up on the wall and it states something like this if your physial or mental heatlth is such that it impars your day to day ability to carry out day to day tasks or employment then you are classed as disabled

Think about this that if you have problems with your memory or suufer from periods of confusion and a bit wobbly when you get around and needs support then as far as mobility you could say that you are in a worse position than a man without legs because he will have upper body strenght to be mobile in a wheelchair and the mental capacity to provide safety for himself, now if you are anything like my wife her mental capacity and her needing a little support when she moves around I would say that you meet all the requirements i have read put it with the fatigue and you do not have the ability at this moment in time that many people have who we all know meets their criteria.

Good luck Rod

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hi mollie

when you go to hospital there is a dept who help pay for your fares to and from the hospital as you are on benifits talk to pals when you arrive it used to be the almoner who paid all expens take proof with you also you could ask the appiontment desk who to see to get your fares paid you could try and claim back the old fares from preveoius visits

as for the potassium problem eat bananna's they are loaded with it i hope you get sorted with dwp jot anything down when it happens so you can reffer to your notes please take someone with you who knows how you are and they can support you and jump in if you forget something important good luck

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Guest mollie

Hi Paul. Thanks for the info about claiming back my fares. I will look into it but not sure if they do this on Isle of Man. I should think they probably do but it never entered my head We don't have PALS here at Nobles Hospital........well at least not to my knowledge. I think the nearest to us is Liverpool and thats really not an option but thanks anyway.

As for bananas, If i eat any more i won't need transport to hospital i could get there swinging through the trees.................lol I have discovered also that oranges and tomatoes are a great source of potassium as well so think thats gonna be my diet for a while.........lol. Good job I love all 3. Might throw in the odd bacon butty just for the wow factor..........lol

Thanks for your help Paul...........much appreciated

Mollie xxx

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mollie you have just made my day swinging through the tree's i didnt know the isle of man had that many :lol::lol: the hospital should have some form of almor to help with fares

as for the bacon butties sounds good to me :-P:razz::biggrin: nothing like a bacon buttie to set you up for the day :lol: take care mollie and good luck

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