Another update: Good morning folk's I do... - British Liver Trust

British Liver Trust

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Another update

simonwilde42 profile image
28 Replies

Good morning folk's I do hope all are OK, this weekend has been a nightmare for me.It started on Tuesday by me getting bit by a stray cat on my hand.This gave me an infection and for some reason has made me feel really poorly.I am so tired all the time my doctors won't sign me off from work even though I am suffering from HCV.Even though I'm eligible for all the benefits they won't pay me.My doctors is giving me such a hard time I got my prescription for protein shakes from the hospital that diagnosed me but my doctors keep cancelling it.Im so weak everyday I am so close to just giving up on life cause I can't take the pain anymore.Knowbody will help me I feel so alone I have tried to stay upbeat involved but when you reach as many Road blocks As I have its so hard to keep going.all you guys on this site have been good to me and I wish you all the best but I can't do this dance anymore.I am totally lost and really feeling it.take care you lot.

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simonwilde42 profile image
simonwilde42
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28 Replies
RodeoJoe profile image
RodeoJoe

Hi Simon,

Sounds like you're not coping too well at the moment. I read your bio and it said you have depression, bi-polar and PTSD. Perhaps this is why you're feeling like Dr's etc aren't working with you???

simonwilde42 profile image
simonwilde42 in reply to RodeoJoe

I don't think it's got anything to do with my mental state.I have been dismissed by everyone their attitudes are if it doesn't directly affect them then screw me.And your right I'm not coping at all anymore.I don't know what I'm going to do I am sick an tired and just want it to all stop.Thanx for taking the time out to talk to me.Its nice,your a kind person.

RodeoJoe profile image
RodeoJoe in reply to simonwilde42

Simon,

I know when I got really ill, I desperately needed support from family. On a number of occasions I had to go back to the consultant with members of my family. On one occasion I was told I'd left things too late, I had to go back with my family in tow and say we weren't happy unless I got a referral to Kings. I found that without getting confrontational, sometimes you have to persuade.

Have you got people who can do the same for you? It say's in your bio that you're married?

It sounds to me like you're really not coping, that in itself should be enough to get signed off for some time.

Look after yourself mate

simonwilde42 profile image
simonwilde42 in reply to RodeoJoe

I have a beautiful wife and two lovely children.They are extremely supportive.They are not in question.I think I have an amazing support network.But that's just it.Professionals are telling me things should be a certain way that I should be getting this and that that hospitals should be doing this and that but no matter who I go to within my network I seemed to be getting brushed off.Im exhusted.My wife works as a school teacher full time I don't want to put on her anymore I don't want my kids seeing me crying all the time.I have used all my savings as although I'm eligible for benefits they just won't pay me them.My doctors play with me mainly the reception woman I have complained along with my wife.Now I have a letter attached to my file saying I am extremely difficult to deal with.they laugh in my face and I can't deal with things like that very well I just withdraw and don't bother.They know this and it just keeps repeating time and time again.I don't even have a liver team to identify with to ask questions cause I can't get them to treat me.

wightlady profile image
wightlady

Sorry to hear you're suffering Simon. The older treatment, peg/riba did cause problems, but I was one of the lucky ones who didn't suffer too much with the depression but just anaemia, hair breakage and loss, and low white blood cells. Here I am, 11 years post treatment and loving life.

Does your GP have any knowledge of hcv? If not they do really need to study it and what it can cause. My GP was great - he had gone to lectures by my gastro and when I became a regular at his surgery whilst on treatment he was learning from me as well about all the side effects. The GP has to understand that HCV does cause fatigue - I reduced my hours at work, much to my boss's disgust as my doc said it was important I got the rest.

I do think you need to get help with the mental issues to start with. Especially as you have PTSD - that definitely should be your GP's priority to get you onto meds and maybe talking therapy before tackling the others issues. Try to stay calm when talking to the surgery - which I know can be hard when they appear not to be listening - and you may get through to them.

Good luck - know that people here are on your side.

simonwilde42 profile image
simonwilde42 in reply to wightlady

Thank you so very much for your kind words.I rely on this site as my doctors just don't seem to care.

simonwilde42 profile image
simonwilde42 in reply to simonwilde42

I'm lost completely and feel I don't know where to turn

H1ghtower profile image
H1ghtower

Hiya, Simon. You ok fella? I think if my own experience in Leeds is anything to go by it seems to depend on the gp,s surgery you belong to as much as the illness as to the willingness of a gp to sort out the company atos on your behalf. I am lucky in Hyde Park as my GP always does home visits and provided i think all my hospital records etc that where needed to pass me. You dont get told which part of your illness you,re passed on as its open to abuse if everyone knows but i,m a liver cirrhosis sufferer with similar mental issues. He actually threatened to get staff to forcably take me to hospital after refusing if i didnt promise id go within 4 hours by phoning them myself. He put himself in a difficult position to just to help me which ive never encountered before in any medical institution. Makes you feel better mentally as well knowing someone actually wants you to get better and backs it up with actions rather than words.

If you're known on your file as being ext difficult mentally then how can you deal with the benefit system credibly? Its a contradiction really cos the worse you get the less you,re able to deal with things and the less chance you have of getting benefit, but, if youre just depressed and ok for work then you can make phonecalls etc to sort out going on sick even though youre well enough to work?

H1ghtower profile image
H1ghtower

You should get your wife to complain if she wouldn,t mind. Govt institutions seem to respond more favouably if they know theres consequences if they fail you. Unless its just yourself in which case your ignored usually whether your complaint is credable or not. Ive been through stuff you wouldnt believe whilst under hospital care and that bad i remember the staff failures and abuse more than the illness i was in there for

simonwilde42 profile image
simonwilde42 in reply to H1ghtower

Pal thank you. Me and my wife are completely lost.we don't know who to go to anymore cab.doc.and hospitals have been a complete waste of time for us.Complaints procedures don't seem be much help.Now are landlord has just served us with possession paperwork.even though we have never with held any payments.And cause we rent privately as we have always the council tell us tough shit we can't help you.I am literally hoping that someone can advise us cause we are scared to death.Im weak as hell and can just about get out the bed in a morning.

AyrshireK profile image
AyrshireK

Have you made contact with the WELFARE RIGHTS department at your local council?

They will look at all your circumstances and provide guidance and help with benefits. We had fantastic help from our local welfare rights officer when it came to appealing a PIP decision. They also provide an IN to the council with regards to your potential housing issue.

I can't understand why you are receiving such poor care from your GP and the hospital and I don't know where you could go from there with that. Are you under the mental health team? You perhaps need more help from them too.

All the best, Katie

simonwilde42 profile image
simonwilde42 in reply to AyrshireK

I am scared to death of my local community mental health team as last time I approached them they started the ball moving with social services cause I have 2 children they actually put me in a position that made me fear I was going to loose them.They made me prove to them I was compitent to continue looking after them.Who do we approach in concerns to welfare rights officer.

AyrshireK profile image
AyrshireK in reply to simonwilde42

Your local council will have a Welfare Rights Office, check your local council website and it should give you contact details. They can sit down with you and look at all your circumstances, give guidance on what benefits you are eligible for and should help you with the claims process and any appeals. As I say ours was wonderful.

Jmears profile image
Jmears

I know how you feel, luckily my GP is so understanding. My advice to you is change your GP, has no right to cancel your prescription the Specialist don't prescribe these drinks for nothing. I have them regularly. I have been singed off work since 2012.

Hope you get some thing sorted soon it is very worrying.

Regards

Jacqui

simonwilde42 profile image
simonwilde42 in reply to Jmears

Thanks

Hi pal i dont really know what to say to that but sounds like horrific treatment.i think iv'e posted before about benefits.Get all your paper work together from

hospital,gp's key workers etc.As much ammo as you can get before claiming pip

or esa .You will get there in the end,i know how frustrating it can be,you do need to chase these issue's up but you have these pro people around you so no surrender and keep on keepin on.

Best of luck to you and good health.

Brummi profile image
Brummi

Hi. I am sure we all know how you feel. You can and will get over every thing. We are all with you. Take care.

wightlady profile image
wightlady

Simon, where do the PTSD come from? If it was from serving in the Forces can't you contact their welface office etc? There is help from them I'm sure. Stay strong!

simonwilde42 profile image
simonwilde42 in reply to wightlady

From the states.89 to 95 2 tours desert shield and desert storm Iraq.British service wouldn't support me.

Footygirl profile image
Footygirl in reply to simonwilde42

Simon, there must be an association linked to your regt. Get in touch. There's SSAFFA too. Please try as there is support out there for service personnel. Your country owes you. I know,the establishment don't look at it that way but we do. Supporting ex services is very sexy these days. Ring your local paper and ask them if they want a story. It may ask questions re your home too. Please don't stop exploring all avenues.

If you are from USA surely your regts are hotter on this than over here.

I have been in a position where I was alone and desperate with a child, and I know how SServices like neat boxes. You need help? Pass over the kid. I have been there and struggled through it but that was ages ago.

I feel so frustrated that you are experiencing all this.

I feel ashamed that you are having to go through this.

I will keep you all close.

Please let us know how things go on.

God bless you

⚽️

simonwilde42 profile image
simonwilde42 in reply to Footygirl

Your so sweet for that.I am British born and bred but lived in states for 20 years.I was naturalised over there so after high school I went straight into service mainly for the foundation or start in life.But they are ignoring me now cause I live over here.and because I was there UK are being difficult about everything saying I haven't enough stamps or something.All I know is I always paid my taxes did the right thing and people are hanging me out to dry.I cling to the lovely comments and support you all have given me on this site and appriciate all of your support and kind words.

Footygirl profile image
Footygirl

Hi

So sorry for your living nightmare. One bit of advice re landlord. Do you have a note of how much notice he has to give you? May buy you a bit of time. Your local councilor and MP. Copy all you have posted here to them. Get them to visit you at home. They may help. The welfare advice should be online, tell them they should have some suggestions.

So sorry Simon. I wish I had a wand to make it all right.

You are all in my thoughts and heart buddy. Do let us know how you get on please.

Hugs alround at your house

OXOX

⚽️

simonwilde42 profile image
simonwilde42 in reply to Footygirl

I've informed the council housing and all and hope I have the ball moving in the right direction jow. Thanx again for all your support guys.I really do appricate it.

RodeoJoe profile image
RodeoJoe

Yes I agree with Footygirl, get a print out of this conversation and take it to your GP as well. If communications between you and them have broken down perhaps this will help them understand, and help you with the relevant treatment.

Get your wife to make the appointment and request a different GP, and you won't even have to engage with the receptionist.

wightlady profile image
wightlady

Simon, found a few organisations where you may be able to get some advice etc. Have family arriving tonight for a few days so may not be around much but will try to pop in to see how you and Pear and others are doing.

There are many sites out there but many are US based. Just Google help for PTSD after wars etc and you can have a browse around.

mind.org.uk

ptsdresolution.org/

ptsdresolution.org/

combatstress.org.uk

Stay strong - talking is the best thing for you at the moment.

simonwilde42 profile image
simonwilde42 in reply to wightlady

Yes indeed I saw a great many things that I never thought humans were capable of doing to one another.But hay there is always someone worse off than me.Especially now I have my little family on this site now.ypu guys really mean alot to me and hope I can return the favour one day.

Footygirl profile image
Footygirl in reply to simonwilde42

You probably already have, who knows how many people have gained from your brave post.

Night

⚽️

H1ghtower profile image
H1ghtower

So are you gonna tell us what happened to the cat?

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