Sometimes I feel like a fraud

Bookseverywhere

When I was in hospital for a couple of weeks back in April, everyone else there seemed to be much worse off than me in terms of mobility and pain. At the time I felt I was taking up a hospital bed that could have gone to someone who really needed it.

Since then, living in a remote area, I don't really know many people with either RA or OA. In the short time I have been on this board, I have read lots of threads from and about people who are in much more regular pain than me and who have much less mobility than me.

Some days I have very little pain; other days I can have difficulty getting up. There is always some pain in my left hand, wrist and fingers (and I am left handed) and in my left ankle and foot, but a lot of the time - thanks to the medication - I can still get on with things. Some days, particularly if I have overdone things the day before, I can be in a lot of pain in various parts of my body from the neck downwards. Some days I can walk without the stick, other days even with the stick walking is difficult. On really bad days I have problems picking up a pen and writing, but this doesn't happen that often. Again on really bad days operating the clutch and brake pedals on the car (and the handbrake) can create pain, but a lot of the time I hardly notice it.

So, the amount of pain and mobility varies from day to day.

But when I see people who clearly have much more difficulty with both pain and mobility I do sometimes feel like a fraud.

Best wishes,
Kevin.

hileena111

Dont feel a fraud...pain is pain is pain.
I do know what you feel like...I feel like that a lot of the time as well. I had a THR but felt that everyone else that had one was in much more pain than i was.
Whatg kind of arthritis have you been diagnosed with?
Sorry if I've missed something......
Just remember your pain to you is bad.So you are not a fraud.
Love
Hileena

cthornley

I know what you mean I have felt the same way sometimes.
The problem with a fluctuating condition like RA its rarely black and white and pain is a difficult one as it means and feels different to different people.

I always thought (and was led to think by my wonderfully sympathetic medic husband :roll: ) that I was a bit of a wuss where pain was concerned but when I had my son and ended up having an incredibly painful induced labour...the midwife was surprised that I had such a high pain threshold (they monitor the strength of the contractions, so can actually see how much pain you should be feeling, I barely twitched til quite late on)the hospital staff reckoned that this might be as I was quite used to high levels of pain (with the RA) so it bothered me less than it might have if I hadn't had the arthritis (I think this was supposed to be a bonus :shock: )

But as Hileena says Pain is pain...the goal is to not be in pain at all, you are not a fraud until there is nothing wrong at any time then you can reassess the fraud label
Chrissie

tjt6768

Hi Kevin, you shouldn't ever feel that way mate, pain is pain and it IS hard to deal with.. I am sure that you suffer the way we all do.. I am just happy for you that you do have good days, in a geniune way....

Tony

dippydoodah

as others have said, any pain however big or small is pain and affects people in different ways. sorry to hear you're going through any pain at all, its not easy and please don't beat yourself up about it. i too am genuinely glad you have the good days too, i hope you feel a little better x

frogmorton

Hi kevin

A very big welcome from me

I know what you are saying - that you are doing ok most of the time?

I am too so when I am ok - I come on here and try to support those who are not.

then when I am rough they drag ME back up.

I hang my head for not saying hello to you sooner, but I have had a busy weekend :oops:

See you around and about

Love

Toni xx

angel1

As others have said Kevin, we have all felt this way at times, usually on joining the Forum, as you have recently done.

In my own case, I always feel particularly bad when I read about the young - sometimes very, very young - ones, suffering from this disease. Arthur didn`t rear his ugly head until I turned sixty, when the old "wear and tear" syndrome kicked in. As I had recently been widowed, it really impacted on my life. Then a hugely successful TKR gave me back my life. That, together with joining the Forum, and learning so much about the disease, and the suffering of others, actually made me feel quite lucky. I never forget though that he is waiting in the wings, eyes firmly fixed on my other joints. Shoulder at the moment!!

I believe that this Forum is particularly beneficial in helping us keep things in perspective. That and the support of like minded - and suffering - people.

So, you are most definitely not a fraud, just someone who has things in perspective, and cares about the suffering of others........Ange.x.

barbara12

Hi Kevin,
I think to some degree we are feel like this now and then, please dont feel guilty, your pain is just that...nobody else's, and how you cope with it is all down to you.
I just thank my blessing for the good days, joining this forum was the best move I have ever made.
Barbara x

dreamdaisy

We all have good days and bad days. You are not a fraud, arthritis can be a very unpredictable master/mistress (choose whichever gender suits one's mood!) and you should never judge yourself against others. Some people do the whole dying- duck-in-a-thunderstorm thing when there is very little wrong with them, others soldier on when they should really know better. The biggest problem I have is the fluctuation in my ability to cope - sometimes the flare from hell won't even ruffle the surface, other times one tiny twinge will bring on tears and wails and grizzles that would knock a three year old's temper tantrum into a cocked hat. (I have PA, like RA but with the added benefit of psoriasis). Enjoy the good days when they deign to put in an appearance, ignore the worse ones. Treat them with the disdain they deserve. I wish you well. DD

annie_mial

Kevin, you're no fraud...........I had days back in the Summer when I would come in from pottering round the garden after having put out the washing and swept the patio and I would wonder what the devil I was complaining about.......completely ignoring the fact that those activities would lay me out cold for a couple of hours as soon as lunch was over!

There's no doubt that I am better in the warmer months; I have now returned to what my hubby calls my 'robotic gorilla' mode............I walk and move now as if I've been badly programmed!

I am certainly luckier than some, but on the other hand..........

Annie

skezier

hi Kevin,

sorry one handed typing just now.

its kinda normal to feel like a fraud at times. i don't have good days as such and still feel a fraud.... mind i don't thin there is much wrong with me and that's a good way to see it i think... sometimes, like now, it reminds me but i still feel guilty taking it easier [ well ,maybe by Wednesday ]

your not a fraud and you do have to listen to your body as well.... they keep telling me that Cris x

ironic

Hi Kevin,
Welcome to the forum. Please do not think for one minute that you are a fraud. We are all different and react differently from day to day to our conditions. I really over did things on Friday because I needed to get things sorted but I knew payback would be demanded. The thing is we need to know that life does not stop and when one of us has a good day then it is a reason to celebrate and gives the rest of us hope.
I also am lucky enough to have better days. So I enjoy them.
Lv, Ix

Bookseverywhere

Thanks for all your positive comments. I did type a second post to this thread, but I must have pressed the wrong button, as it appears not to have been posted.

I think it is the pills that are keeping me on an even keel at the moment, for which I'm grateful. Also, my GP is excellent and the practice shares a physio with two other surgeries. The nearest hospital is quite some way away, but the facilities are excellent.

I do recall that a few months ago - at the end of August/beginning of September (and just before we were about to leave on our September holiday) - I began to feel more and more pain from my neck down to my feet, could hardly walk, was in constant excruciating pain and couldn't sleep much. It even affected my appetite. The day before going on holiday I was due to see my GP for my fortnightly blood tests, blood pressure tests, and general MOT (as well as my monthly injection). That morning I was making a list of the medication I would run out of while on holiday, when I saw why my pain had been so bad.

Among the many pills, I take 2 x 5mg of steroid (a year ago I was on 30mg and have been on a reduction programme). I had finished one box about a week before, so had just opened another box and started taking them. However, for a week I had been taking 2 x 1mg, hence instead of 10mg a day, just 2mg a day. The box was the same colour as the 5mg box!

When I saw the doctor that evening, I explained why I was in so much pain. We were both relieved at having found out what the problem was, we both laughed and I began to take the proper dosage again. As the steroids took effect, so the pain lessened and my mobility increased. And it turned into a wonderful holiday, involving international cricket, art galleries, theatre and some wonderful restaurants.

Anyway, thanks for all your help. This really is an excellent forum.

Best wishes,
Kevin.

spacey

I too sometimes feels a fraud, but only on good days! some days are just easier to manage than others, what can be done on one day - is a struggle the next. I think it is in most peoples nature to see that there are others often worse of than ourselves, but we must also allow ourselves some sympathy too x

speedalong

Hi Kevin, each person's pain is personal. How we cope with it depends on how we are feeling, what demands there are upon us and what else is going on in our life etc The very nature of arther is that we have better days than others. Different folks have different expectations of their own bodies and what they want/need to do. Do not compare yourself to others and do not feel a fraud.

Speedy

carola

Yep, I sometimes think that people view me as a fraud too however 'they' don't see us on our bad days, they don't see us hanging off the edge of the bed in the middle of the night in tears trying to get up to the loo, they see that my trademark red lipstick is on but they didn't see how long it took me to put it on, they don't see the broken plates dropped in pain and frustration and I could go on and on and on however we know what I'm talking about.

As my Gran says, "Your pain is YOUR pain."

So please don't feel like a fraud - that's just adding to your stress.

Keep smiling, Carol

Bookseverywhere

I'm not on any sort of benefit, I'm still working, and because I'm self employed I do have some control over my work patterns. However, I do know that there are people with arthritis of various forms who simply are unable to work.

However, as has become clear from this thread - and other threads on this forum - it does happen that mobility, pain and severity can vary from day to day, or week to week. The government is going to be introducing new rules as far as claiming invalidity benefit, and all claimants will have to have medicals. What is going to happen if someone on benefit who has some severe form of arthritis just happens to be having a "good" day on the day of the medical?

There are other medical conditions that can also mean the health of the person is up and down. For example, HIV & Aids, MS, Diabetes, etc.

I'm not sure the government has really thought about this. Or perhaps the politicians have, and have decided that cutting the benefits' bill is more important than ensuring people with serious illnesses and disabilities get enough to live on.

Best wishes,
Kevin.

tjt6768

I'm not sure the government has really thought about this. Or perhaps the politicians have, and have decided that cutting the benefits' bill is more important than ensuring people with serious illnesses and disabilities get enough to live on.

Best wishes,
Kevin.[/quote]
I really don't think they care Kevin.. They're not the ones going through it.. I have had dubious looks for many yrs, I don't look like (what does one look like really) your average disabled person, because I don't use my stick every day and in the summer I wear shorts and a vest and heavily tattooed, I can see people looking when I get out of the car in the disabled bay, you know what they're thinking... :x :roll:
My brother even had the cheek to say to Mum once, wish I had a bad back so I could get a new car!!! Needless to say, 12 yrs on I still don't talk to him..

Tony

Bookseverywhere

Tony,
I'm fortunate that my family are much more understanding (though they do all live several hundred miles away!).

This may be explained partly by the fact that my sister's son had a really appalling attack of juvenile arthritis when he was about nine. He was fine after a couple of years or so (and became a normal teenager!) Also my sister had a hip replacement last year. But we have in any case always been a closely knit family, even though we are spread out all over the place.

Best wishes,
Kevin.

donnas

I hope you feel less of a fraud now, Kevin!

I too feel the same. But only when I compare myself with other people. When I compare myself with people who are "well" I wonder why I ever think I'm a fraud. I'm off work more than anyone else I know. I'm sick more than anyone else I know, I struggle with lots of everyday things, and even though for me the good days outweigh the bad I am me and I deal with this on my own and when I suffer I suffer.

I'm glad your medication is working for you and that you enjoyed your holiday! Keep well!

valval

not been on much lately but i must admit i work 4 hours a day and for days last week could walk with no stiffness or pain it did not last and hit quite hard last night but was great while it did could even cut my toe nails lol but there are good and bad days you just make sure to enjoy the good make the most of them and rest when you need to it the only way to cope with arther never feel guilty as everyone here loves it when one of us is having a good day it helps remind us they do happen val

tjt6768

Bookseverywhere wrote:

Tony,
I'm fortunate that my family are much more understanding (though they do all live several hundred miles away!).

This may be explained partly by the fact that my sister's son had a really appalling attack of juvenile arthritis when he was about nine. He was fine after a couple of years or so (and became a normal teenager!) Also my sister had a hip replacement last year. But we have in any case always been a closely knit family, even though we are spread out all over the place.

Best wishes,
Kevin.

Sounds like you have a good family Kevin, hope that your sister is doing well now..
On the whole my family are great, some sceptical about how much pain I am really in but I ignore them..
I have a fantastic Wife, who despite her own health issues takes good care of me when I am having a hard time fighting Arthur...

Be well, hope the scenery up there is as nice as I imagine it to be!
Been to Hawick, Fife & Edinburgh, that's it, for now anyway.. Spend a lot of time in northumberland though..

Tony