[flamenco2]

Hi there,

Im quite new here and have posted a while back !

This is a very supportive caring place to come, it does give you comfort and hope also. To see we all have similar health problems, seems to me though (I sometimes feels its that sort of illness LUPUS, no one believes you, or family, work and friends dont take you very serious) sure some of you will back me up on that statement ? I do hope so.

Im at present in a mixed-up state. I live in UK, greater manchester.

Had bad horse accident over 21 years ago. (trying to cut the tale short) lol
years test etc etc. have definately got fibromyalgia. soldiered on now for 20 odd years, never out of pain, tired the WORKS, never took meds.
Horrid pain last april 08, sent to rheumy (NHS) locally. tests ON LOTS OF STUFF, bloodworks etc. I have Fms, reynauds, rheumatics "in there" and LUPUS. upsetting nightmare.
Work full-time, and quite perturbed ? Now on the sick, impossible at present to work. up to now having 3 weeks off on SSP.
I would love to know if anyone in UK or any country on here, IS IT TRUE TO SAY WITH WHAT IVE GOT IVE REASON NOT TO WORK AT SOME POINT ?
Does everyone work or what ? can they afford NOT TOO (this is the problem for me). Benefits ? - no idea where to start on THAT !!!
Im on Co-codamol 8/500 either 1 or 2 tabs 4 times a day (not exceed 8 in 24 hours), it taking THE EDGE of the pain, and im on PLAQUENIL. 200mg, one twice a day with food.
Im also very confused about, the rheumy said (he suspects I more than likely have lupus) now work are sending me TO WORK DOC ETC ETC, Ive nothing to hide either and back at hospital 14th May. Going tell rheumy need definate diagnosis. Docs surgery said plaquenil is for LUPUS.

Need someone on here to pacify me, my head is spinning with, WHAT IF THIS, WHAT IF THAT. Feel GUILTY off work even to be truthful, feel I should be IN WORK, but not well enough. Not a chance. What the **** did I ever do to derserve this pain and misery.

All answers replied to.
hugs and love Diane (Greater Manchester UK)

 

[Katharine]

Hello there flamenco

I think many people on here can and will identify with what you have been going through. Lupus and other auto-immune diseases are sneaky and unpredictable.

Often, we are used to planning life, were brought up to, and suddenly we can't. The only predictable thing about lupus is how unpredictable it is. We can't tell from one day to the next how we will feel.

Many here have had to give up work whether financially "able" or not. At first I went into a dead panic about having to stop work and put it off as long as I could...far too long. I made myself quite ill with continuing but that's not the case for everyone.

Obviously, with its varying degrees, lupus is not the same for everyone. Some people (very many in fact) have found that with treatment they have been able to resume a more normal life and go back to work. Some people haven't been able to.

Some people are "forced" to keep working as they can't afford to stop. Some people, no matter how ill they are, just can't get their heads around stopping... so many different situations.

You may not have a definite diagnosis and indeed it may not be possible to give you one (auto-immune diseases are very complex and if you don't meet enough criteria you won't get a definite diagnosis). It is true that plaquenil is for lupus (and some other auto-immune connective tissue diseases) but whether it is called lupus or "lupus-like" or UTCD has very little importance so long as you are being treated. Some docs will also avoid the lupus label if they are not 100% sure as it can have pretty serious insurance implications as well.

How long have you been on plaquenil? I don't know if you know that it is a drug that takes a long time to have full effect (often between 3-6 months but sometimes a lot longer). I'm just wondering if you are very early on in your treatment regime (everything being relative - what seems like a long time to you may be short in treatment terms). All this would, of course, have an effect on decisions you may make work wise.

There is some info on these forums on disability in the UK.
http://www.thelupussite.com/forum/forumdisplay.php?f=62

Hope that helps a bit,
hugs :hug:
Katharine

 

[elisabethm]

Hi Diane every one is diffrent i was only diagnosed a couple of years ago but i have not been able to work for 10yrs.I am on Disabilaty but it depends on what you can and cant do.But never feel guilty about being sick how long have you been on the palequine do you take any other meds.Some of us are on lots and others not much if you want to pm me then feel free.Elisabeth

 

[LolaLola]

Dear Diane,
Sorry to hear you are feeling so bad. I suspect sheer exhaustion is part of the problem. I am very fortunate in that people do know that I am ill, and do give me credit for trying hard to keep going. I do know that many people have the same experience as you with this. Many look very well indeed.

I used to work like a Donkey for many years. In the end I could not even manage two hours a month, it was always a worry if I would be fit when the day came round. I hated letting people down.

I have been on Disability for a long time now and it is a blessing to me.
I would certainly say that you should consider either ways to make your job easier or ways in which you can give up. That way you save energy for what you need to do.

Also , do remember, any change may not be forever. With the right combination of meds. you may well improve greatly- it can take time to get them just right though.

Thinking of you,
x Lola

 

[flamenco2]

message for Lola

Hi, lola thanks for your support.

If I could just touch on my situation again, it hard to explain here goes :-

Im off work (now 3rd week) on sick notes of my doctors. I work fulltime (37 hours 5 days).
No idea if to go back to docs for more sick notes, not sure (FEEL FRIGHTENED IF OFF TOO LONG).

My employers are definately sending me to a works doctor (referral) see if they need to do reasonable adjustments.

I cant afford not to work, dont get benefits or working tax credit (dont know the amount either to qualify - what cut off point, everyone I ask dont know.
cant apply cos not yet doing less days so dont have a proper new payslip !
(with proper tax/figure work if you understand) ?

work said they cant or prob not accommodate me 3 days - IF I WAS TO ASK
(ive been there 25 years by the way) .............. so they send me in another part of the organisation.

Have mentioned to my family doctor about need to DO 3 days maximum, he said would support me if I wanted try get benefits, thats as far as it is.

Just off sick (SSP). If I now do 3 days (financially crease us literally for starters) but would have to cut back, what if dont get any benefits. Would loose thousands of pounds a year.

At rheumy on 14th May. Tell him I need diagnosis, its awkward, couldnt tell employers AT MOMENT, my intentions to reduce days because of mine and husbands finances, need to get them bit healthier first.

No one at all can tell me either (wish someone here knew) the amount X ? amount i.e. my husband works fulltime = X amount and me 3 days X amount. at present I cant tell them a figure cos do 5 days. If I knew the figure NOW if WE QUALIFY, and its more or less we would get WORKING TAX CREDIT, then only then may I try and do the 3 days sooner.
sorry to bore you, realise this very "long-winded" and not easy to cut short this post either. does anyone here understand what Im meaning ?

Could someone/all/ lots of you give me some sort of direction LOL


love and hugs

Diane

will try chat room later tonite, if I can

 

[lazylegs]

Hi Diane,

Welcome to the site.

I am not from the UK so I can't help you with the benefits. I have however been right where you are today. Financially I was worried. I couldn't be assured I would be awarded benefits and even if I did how long they would last. What it came down to was quality of life.

There is no magic bullet that says when it is time to quit. I tried all avenues first. My doctor worked with me trying additional medications. Work allowed me to cut back my schedule. My husband relieved me of all my duties at home. Each thing helped for awhile allowing me to continue my career longer. Finally one day I knew I could not continue. At that point I could have cared less about the financial situation. I just wanted a chance to feel semi human again.

Good luck with your rheumy appointment. Maybe after seeing the doctor you will have a clearer picture of what is going on.

Take care,
Lazylegs

 

[onetay]

Diane,
You are not much different from any of us on here. We all feel and know that the general public does not understand about lupus at all. It is often confusing to us as we have similar symptoms but as you know it is different for each person as far as pain, rash, other coniditions, and even how the fatigue affects each of us. I have reasonly found myself facing the same things with work and all. I hope we have a chance to chat in the room. I also hope you are doing well.

 

[KarolH]

Hi Diane,

Just wanted to say welcome and sorry your having such a tough go of things.

Hope to chat with you sometime.