Friends

cthornley

I'm well versed in having RA now as its been well over 10yrs and generally I'm on top of things but I hate it when even good friend's don't understand why i'm not always sweetness and light even when I don't look poorly to them.

I've been quite run down and flaring on and off for a few weeks now mainly due to overdoing it and stress. I had a really off day the other week and someone really wound me up when I was knackered and hurting so I unloaded to a close friend in a giant moan and i'm not sure its gone down to well. I really try not to do this but it was just one of those days where it all got to much. I don't want to have to explain myself in detail to this guy as i'm not sure how comfortable he actually is with it. Sometimes wish life was just more simple I guess.
How do you explain it to friends without boring them or making it uncomfortable? Its especially hard with new friends who weren't around when I was diagnosed.
Chrissie

dreamdaisy

I don't talk to friends because their lives are so different, there's no point.

I don't tell The Husband how I feel because there is nothing he can do to change anything.

I don't tell my mother how I feel because this is all her fault: her utter selfishness in wanting a child resulted in me with rubbish genes from her and my dad. Thanks a bunch. It's been a crappy life since birth, and so it continues. The 'gift' of life. Utter tosh.

Why do people need to know, anyway? It's a never-ending topic of conversation - good days are few and far, the rubbish days are much more plentiful.

That's why the forums are good. People here know and understand, they're worth talking to. DD

speedalong

Hi Chrissie,

I let my closest colleagues know when I'm having a bad day - tho' they usually guess by my pale colour, big bags under my eyes and wincing!! They then help out rather than watch me struggle - bless them.

I let friends know if I'm struggling when we are out - then we schedule more sit-downs.

Because when I'm worse my mobility is worse - it is visually obvious - although I don't think any of them really appreciate how bad the pain can be.

I don't really mention it to my parents - they are too wrapped in their own aches and pains.

I keep my sister updated in a general kind of way - but I save all the gory details, hassles, queries and so on for the members of the forum ... because they all know what it is really like.

Speedalong

suncatcher

Hi chrissie
My one friend who said oh youve got a little ache s he now has hubby with Ra/ They dont like to find out much about the disease. At start of his she said "its only in his arms its not as bad as yours." And now" i think its getting worse. But not as bad as yours"
I have some friends who didnt understand and i was treated differently did not like it so dont bother with them now.
I have some which are ok and let me talk.
I dont really say when im ill they can tell some times . I always say im fine. I just get on with it.
new people no had problems still do. some people are nosy i dont give em info they would not find it so facinating if they had it. Nosey people i have real problems with and its dented my confidance.
I look in self help books but found no info on how to deal with these type so avoidance is my only defence. I wish i could find effective ways to deal with these sort. In a assertive way. I am glad you have brought this topic up from joanne

frogmorton

Hi Chrissie

I think that I have had to ditch a friedn or two reall - or distance myself from them to be honest...some of them DO NOT understand the pain and the fact that there are times whn you are just not up to it.

Wont moan if I can help it - save that for us lot here I dont feel the need to apologise which is lovely.

No real answers to be honest I bet will all deal with it the same sort of way.

How are you Toni?

Fine are you?

Love

toni xx

dorcas

Hi Chrissie,
I think we've all had this experience... and to be honest I find the only real place to talk openly about this disease, without worrying about the impact, is this forum!

I don't talk about my arther to friends or family unless they ask...even then I judge whether it's just the polite nicety' How are You' when I would say (just like Toni) 'Fine, how are you?'

As the years with arther have gone on I have learned that most people don't actually want to know how I am with this disease... I guess it is hard for people to understand how demanding a condition it is.
I also hate sympathy! and don't want the real 'me' as a person to disappear and to be viewed as 'being' my disability......so it's a 'no win' situation. :roll:

Iris x

suziev

hi

i was thinking about this myself the other day i have 4 people in my life that turly understand, my hubby who goes through it with me, one of my best friends who is a trianed nurse and see me on bad days and her hubby who is a paramedic. i can always have a good rant at another friend (also a trained nurse) when it all gets too much but thats about the sum of people in my life within a big circle of friends and family.
this being ill but looking well is a curse isn't it, my family just don't get it what so ever which upsets me greatly, if one of them was ill i would look the illness up and try to understand whats going on and how i could help them but am afraid they are all ostriches
i guess am trying to say is, it's the same for me and others too.
suzie

elnafinn

Hi Chrissie

You could try the spoon theory - google the spoon theory, but you don't look sick - on these new friends or friends in general......

Luv
Elna x

angel1

True friends won`t be uncomfortable, or bored when you feel the need to unburden yourself Chrissie. The rest.......**** `em....Ange.

livinglegend

My Rheumy said on my first diagnosis, "You won't have problems about RA. Everyone around you will have the problems. So you have to be really patient with them."

While we may suffer and complain about the meds, aches and pains, other people can't feel or fully understand what WE feel and understand. By letting everyone around us, (this means friends, workmates and family), know of the pain and suffering, in time they make allowances for us. Or they are avoided.

Only you can know how your aches and pains are at any time. If you are unwell, remember that mind reading is not available yet. They won't know how you feel just by looking at you. If I am unwell and in pain then I say why I am having a bad day, real people make allowances. I don't have to go into graphic detail, "My shoulders and hands hurt today", is all I need to say.

As experts on arthritis, (we all are, by first hand experience), we should expect others to ask how it feels for us. Be patient and they will come to understand in time. We will never get the help and assistance we need by keeping our problems secret or feel ashamed of them. We do ourselves and other sufferers a disservice by hiding away from the world.

Rant over for today!

Joseph 8)

dorcas

great rant Joseph

but well said.....spoke volumes to me, for one! thanks,

Iris x

chrissie691

I don't think people really know what it is tbh. I've only told a couple of friends about my RA and they've seen me hobbling around for months but even they seem to think it will just go away. I felt quite irritated with my friend the other day trying to explain it. It's something I'm beginning to realise I'm almost alone with. I'm glad I found this forum. I hope you are ok today hun.

Luv Chrissie xxx

theresa4

HI
I have the same problem I don’t like going out when Im bad as I feel really self conscious and people stare at me probably as Im quite young (38 but often mistaken for much younger).
My hubby tries very hard to understand but is exhausted as we used to run the business together now hes on his own with the added stress of all the driving and caring for me and our teenage kids.
I have a friend who is terminal with sarcoid who understands the problems Im facing and warned me people get bored unless they are ill themselves. My other friend is lovely but is a bit sensitive she is very caring and plans breaks and distance into anything we do together, she winces and gets distressed if Im in pain though.
As for my family my sis cleans for me once a week ( but chats constantly :!: ) my hubbys family are bored with me regardless of the fact I looked after their kids until Arthur moved in 4 years ago. :roll: They cant understand how one day Im ok another Im not. I sent them all the spoons theory to help them understand but its apparently too long for them to be bothered to read it. :roll: :x :shock:
Overall I find the best thing to do is to chat on here as everyone understands and i usually feel better although a comment Dream daisy said worries me I have RA as my grandmother and mum have it (faulty genes) but what if I pass it to my kids! Will they be as angry with me as you DD :shock: , for me its just unlucky I have it and I had all my kids prior to the knowledge I had it as did my mum. My biggest fear is my kids will get an auto immune but I never thought about how they feel angry about it until now .
Theresa x

caprica

theresa,
what you wrote at the end there really struck a chord with me. when my symptoms first started in december, i was a mess, crying and what not to my mum and she said something that totally threw me. She said she felt guilty for maybe passing some gene down to me (she doesn't have RA neither does anyone in my family). I was really upset when she said it - I would never dream to blame my parents, especially since they weren't to know. Don't worry, if you have a good relationship with your kids, they won't blame you, it's no one's fault, just plain bad luck. I actually really worry that my mum feels worse about all this than I do. Must be terrible to see your kid suffer so yeah.. I worry about her more than myself sometimes. haha. Don't stress, it might never happen anyway.

lindalegs

If I'm struggling more than usual I just ask for extra help and it's very rare that I let arthur keep me in if I've planned to go out.

Whoever, family and my friends understand if I say I'm having a bad day and will make allowances for me, .e.g. offer me an arm at kerbsides, help me off with my coat etc. But I don't ever tell them how much pain I'm in, only hubby has seen me in the real depths of despair and even then I try hide the worst of it because I don't want it to bring him down too.

My pain is private to me and no one can help me with it so I pop another pill and get on with things.

As for the faulty gene, my grandmother had RA but I don't feel resentment towards my family for passing it on, it's just the luck of the draw, :roll: There's no point in being bitter you just end up sad and lonely.

Luv Legs

elnafinn

lindalegs wrote:

There's no point in being bitter, Luv Legs

I agree, being bitter for more than a moment or two, wastes valuable energy that can be put to much better use.

Elna x

woodbon

I was retired sick from working as a care assistant last year. Not my choice at all and I loved my work and got on well with my colleages, but when I left I never got a card or a formal good-bye like others leaving for new jobs. I think people thought I was 'putting it on' .

When I was at work I tried not to let people know when I was in pain, or found things hard to do, I just struggled on silently as I didn't want to let the others feel they should have to do all the heavy jobs. I never mentioned the pain and just carried on although they knew I had arthritis, (oa). I was a bit bitter when I left, and even now, if I see someone, I feel as if I'm sciving, as I have a pension from work and also I don't look that bad at all.

Maybe I should have moaned more!!! :shock: But I do try not to spoil things now by being bitter, but sometimes it does creep in.

Love Sue

livinglegend

chrissie691 wrote:

I don't think people really know what it is tbh. I've only told a couple of friends about my RA and they've seen me hobbling around for months but even they seem to think it will just go away. I felt quite irritated with my friend the other day trying to explain it. It's something I'm beginning to realise I'm almost alone with. I'm glad I found this forum. I hope you are ok today hun.

Luv Chrissie xxx

People get ill, then it goes away and they get better. We have all had a cold and got over it, that's normal. And that is how illness is viewed by most people. Trying to convince people that you will never 'get better' runs against their common sense. People get ill, then it goes away and they get better.

Only we don't fit into the 'it goes away and they get better' part of things. Our illness is permanent, it fluctuates, but never goes away completely and always comes back. I usually explain that my RA is a permanent and worsening, long-term illness, it will never go away. It is like a tattoo, once you get it, you are stuck with it forever. (Now, if it was contagious as well, then we would have problems.)

Unfortunately, some people get permanently ill, it doesn't go away and we don't get better. All you can do is try to explain.

Joseph 8)

carolanivey

dreamdaisy wrote:

I don't tell my mother how I feel because this is all her fault: her utter selfishness in wanting a child resulted in me with rubbish genes from her and my dad. Thanks a bunch. It's been a crappy life since birth, and so it continues. The 'gift' of life. Utter tosh.

Funny, I've spent most of my life begging my parents not to feel guilty about giving me bad genes! It hasn't been easy, and Lord knows my family isn't perfect, but to be honest I wouldn't change anything about my life. It's been a good life despite the RA, and in some ways, because of it.

Who would I have been without RA? Would I have liked that person as much as I like the me I am now? I'm not so sure. It shaped my personality, put me on the path that took me to meet the love of my life. Gave me children who grew up with a handicapped parent, and as a result, are more patient and compassionate than other kids their age with healthy parents.

RA taught me to live in this moment and take nothing for granted.

Has it put me on the sidelines of life? In some ways, maybe, but not in others. Not in the ways that really count.

At some points in my life I've certainly experienced anger, bitterness, frustration - we wouldn't be human if we didn't. But at some point I had to make the choice not to stay in that place. RA forced me to discover and use gifts I didn't know I had. Am STILL discovering as each life stage unfolds.

It's been a great life. And I have every hope that it'll be good to the end.

theresa4

carolanivey wrote:

dreamdaisy wrote:

I don't tell my mother how I feel because this is all her fault: her utter selfishness in wanting a child resulted in me with rubbish genes from her and my dad. Thanks a bunch. It's been a crappy life since birth, and so it continues. The 'gift' of life. Utter tosh.

Funny, I've spent most of my life begging my parents not to feel guilty about giving me bad genes! It hasn't been easy, and Lord knows my family isn't perfect, but to be honest I wouldn't change anything about my life. It's been a good life despite the RA, and in some ways, because of it.

Who would I have been without RA? Would I have liked that person as much as I like the me I am now? I'm not so sure. It shaped my personality, put me on the path that took me to meet the love of my life. Gave me children who grew up with a handicapped parent, and as a result, are more patient and compassionate than other kids their age with healthy parents.

RA taught me to live in this moment and take nothing for granted.

Has it put me on the sidelines of life? In some ways, maybe, but not in others. Not in the ways that really count.

At some points in my life I've certainly experienced anger, bitterness, frustration - we wouldn't be human if we didn't. But at some point I had to make the choice not to stay in that place. RA forced me to discover and use gifts I didn't know I had. Am STILL discovering as each life stage unfolds.

It's been a great life. And I have every hope that it'll be good to the end.

THankyou
I have never felt bad about my parents giving me as fdaulty gene and feel regardless of my RA Im still a good person and many people on here are wonderful people compassionate and caring and the world would be a sadder place without them. I dont regret for a momnent procreating although the thought of passing this to my kids horrifies me but hopefully if that happens they will be able to look forwards as you do. I have to admit DD's comment really threw me and I felt awful but I would imagine every parent has something 'faulty' they pass to their kids be it cancer, bad temper, tendency to acne, RA , MS, sarcoidor even menatl illness, what do we know we have passed on if we all knew what we would or could pass on maybe no one would procreate. Lets live for the day andbring up the children we create to be decent, caring and thoughtful human beings who through adversity are better people for it. Sorry for hijacking this post and taking it sideways.

LOve to all Theresa

dreamdaisy

Morning all, hope you're all tolerably well today. It's interesting how we all vary in our approach to this arthritis malarkey, and I must admit I was in a bit of a grump when I posted my earlier comment. And I think I have good grounds on which to grump.

Firstly I have NEVER told my ma how I feel - she had that girly thing of having a baby and in the middle twentieth century that was how life went. You got married and you produced children and you stayed at home and reared them. It took years and years for me to be conceived and even now she regards her faulty offspring as the greatest thing in her life. She also had blessed ignorance on her side as medcine and genetics were nowhere near as developed as they are now. There was history in both families of eczema, psoraisis, asthma, hayfever and arthritis and lucky ol' me hit the jackpot.

I was born with eczema, covered from head to toe. Lovely baby? Nuh-uh. It went after a month and stayed away for a further seventeen, then returned with a vengeance. Not knowing anything about it, and not knowing what was causing it, she fed me on the 'good' foods that were known to promote health and growth - in fact all the stuff I was allergic to. Lovely.

I scratched and bled my way thro the early years then started the asthma aged six. Between the ages of six and fourteen my chief memories of summer are lying in a darkened room, windows closed and curtains drawn to keep out the pollen, trying desperately to breathe. There would be the occasional dash to hospital to treat me (nearly died three times, wish I had). I was a tall child (my pa was 6'4") but at aged twelve I weighed less than three stone and my poor ma was berated by members of the public for ill-treating me. I was too weak to stand and was pushed around in a wheel chair. I was eventually referred to St Mary's Hospital in Padddington, where they were undertaking ground-breaking research into allergies - I topped the poll with an astonishing list that included all dairy, all fruit, tomatoes (work of the devil!), a huge list of pollens, grasses and trees (even now, pine and silver birch trigger asthma symptoms) and quite a few moulds which are espcecially prevalent in low pressure weather (phoma, altenaria and sporobolomyces in particular).

Then new meds were developed to treat asthma and life slowly improved. I had few friends 'cos I couldn't do any of the usual stuff that children do but I didn't mind my own company, and still don't. I rigorously controlled the exzema with a very restricted diet, so at least I looked reasonable and people didn't mind being seen with me. With a cocktail of medication I worked my way thro life and was actually expecting diabetes, a known side effect of inhaled steroids. PA was totally left field, but logical, given my dodgy immune system.

Even now my ma bleats 'Why you? We loved you so much.' I reply 'why not? Stuff happens and this is my lot in life. It doesn't matter.' Love doesn't come into it. Love doesn't cure things like this. She had a terribly rough ride in rearing me - she and Pa nearly split up because he felt ignored 'cos of all the attention I received. Because of her doggedness, I now approach the PA in the same way - and it has had one AMAZING benefit. Now that my immune system is so reduced I can eat what I like. I now know what cherries, strawberries and oranges taste like. I can have cheese (well, not now, dieting etc) yoghurt, cream and eggs. Have to say tho, I'm not that fussed about fruit. You unwrap a Mars bar, you know how it's going to taste. Fruit is too variable. Overrated stuff.

I think the wisest decision I have ever made in my life is not to reproduce. Doctors have cheerily told me that it's a lottery, it can skip generations but, ye gods, I have to show some responsibility here. I cannot see the point in gambling with a child's life. Childhood was hell. I'm not inflciting that on anyone. Luckily Mother Nature did get one thing right with me - I have no maternal instinct whatsoever, so, hard luck drugs manufacturers, the line stops here with me. No more profits for you once I'm gone.

I have no idea what feeling well is like. Not a clue. It must be lovely. I equate wellness with not taking medcines so I guess I'll never know. Despite all the treatments I've had for PA the pain has never gone, I'm in my fourteenth year of it now. I don't want it to go, either, because it will only come back and I would have to start adjusting to it all over again. It's starting in other places now, hence the general low-ness and grumpiness, 'cos I'm adjusting. This morning it's toes, ankles, knees, sacro iliacs, hands, wrists, shoulder and neck. Not the hips and spine, for which I am thankful, but I can't help wondering how long before they go too. Ho-hum.
I am fortunate in that I have a lovely husband (whose father was crippled by RA so he has seen first-hand what it's like). There are some bright spots in life so that's a good thing.

People have to do and say what's right for them. My experiences are not the same as everyone else, and there are many who are far worse off than me. If having children was right for you, then that's a good thing. There's no point in fretting about what might be - hopefully they've dodged the bullet. If not, you will be able to give advice based on knowledge, which is a good thing. I get advice from someone who is 86 and permanently cold. I'm 51 and permanently hot. But I feel like 86. DD

woodbon

Hi, I'm sorry you feel so bitter and unhappy. I may be a million miles short of the truth, so forgive me, but, my family have been badly effected by genetic diseases of a fatal neurological type. I'm lucky, in that the faulty gege is from my sister in laws father, who died a long time ago, my sister in law died after a long, long illness, about 15 years ago and my niece is now going into the final stages of the disease. My brother died about 7 years ago, after caring for his wife for the whole of her illness and working full-time. He had a heart attack, which we all feel was stress and over-work related.

My Sister in law was a bitter, demanding person and I can't say I blame her, but she seemed to have no life from an early stage of the disease. My niece is very different, shes bright, happy and loves playing with her gagets like the stair lift and electric wheel chair. She goes out with lots of friends most of them old friends from her school days. She also has taken up swimming, a special session for the disabled. She has a full and happy life. Shes married since being ill to an able bodied man who spoils her to death! She spends money like it grows on trees and is addicted to the shopping channels!

We are all different and thats life. I am not as good at coping as my niece, I get down and depressed. I'm not saying you'r wrong, just that its your life and how you react to the horrible things is understandable, but, don't waste your life with bitterness if you can help it, its too short.
I hope you don't think I'm getting at you, I don't mean to its just I feel so sad and upset for you and hope you are just having a bad patch and come out the other side. Please, forgive the preaching type nature of what I've written, I'm in 2 minds about sending it!

With all good wishes and love Sue xxx

skezier

Hi Chrissie,

First a ((( ))) cus I know friends help make life better and illness can put a strain on friendships.

I was very ill a lot of years ago, got a stammer, shakes, eye trouble and vertigo non stop and actually lost all but a couple of good friends but found some I didn't know I had so well I know illness can effect it all. Back then I knew little about hiding it ( I do that now, except here) and the spoons thing didn't exist, not sure the Internet did that much either Had I know it I might have been able to explain it to the then friends.

Its horrible to have to stop doing things but it does help you to find other things to enjoy. I hope your feeling a bit better today and well another ((( ))) Cris x

Hi Theresa and Caprica,

I, Like Carolan and have never blamed my parents for the things I have that are either congenital or have hereditary links. Please also remember its not a certainty you will pass anything on to your kids and well I got 3 def autoimmune and 3 sort of congenital and well its not in out family anywhere so don't let it cloud you. Its sods law that it sometimes just happens but the odds of you passing it on are very low. A ((( ))) to you both xx

DD I know you didn't mean to worry anyone and am not getting at you. x

cthornley

Thanks everybody for your feedback and thoughts. its nice to know that everybody finds it difficult not just me.
I've had RA for 12 yrs now and still it sometimes just hits me how lonely it makes me feel. I know that I'm not. I have a lovely husband and wonderful son and loads of wonderful friends (online and off) but very few of them truly understand the bad days.
I think i'm probably going to muddle on the way I have been, telling some people and not bothering with others after all I guess everybody is different.

I wish my family were understanding and sympathetic but they really aren't like that so I tell them very little. Mainly because they are quite self absorbed and so every conversation always ends up talking about them. My mother has spent the past 12 yrs playing an escalating game of one upmanship (she is a major hypochondriac) and I just don't have the energy to play it when I'm having a bad day.
My husband has his moments but being married to a cardiologist is rarely ideal...he has stated more than once that ‘pah its not as if your dying!’
So I often end up relying on the wisdom of a 2yr old (hey they are great listeners especially if you give them a biscuit) or my friends to see me through it.
Chrissie

dreamdaisy

I've obviously phrased things badly! I'm not bitter but I am going thro an angry phase at the moment because I'm adjusting to new pain levels. I feel cheated that life is dependant upon ghastly meds which don't bloody work. I'm tired of pain. At least the early asthma meds I had did something, they controlled the wheezing so I could do stuff. At least the Betnovate (once invented, I remember the early, magical days of using it) got rid of the eczema. Beconase sorted out the hayfever (I did the trials for that - utterly revolting what they did to one!) but now it's the sodding arthritis which NOTHING TOUCHES (apart from oral steroids which my docs want me to stop). Grrrrrrrrr.

I know I'm sliding inexorably down a very long hill. I just want to crash to the bottom, have my wheelchair and electric scooter, my bunglaow with grab rails and lever taps and get the whole bloody thing over and done with. Then I'll know where I am and what I have to deal with. This slow, piecemeal subtraction of mobility and ability is awful. It is taking too long. DD

carolanivey

(((hugs for DD)))

It's okay. Thank you for the glimpse into your life. We all deserve to be grumpy about our lot. Places like this forum allow us to "dump out the grump" in a safe place - I hope I didn't come off as lecturing you, that wasn't my intention! Sometimes being grumpy is just that, being grumpy, and all I should respond with is "I understand" and a cyber hug. It's okay to tell me to back off, I won't be offended.

And I do understand your feeling of "let me just hit bottom and get it over with already"! Despite all the advances in therapies, medications, surgeries, how hard we fight it, etc., RA and its "relatives" means a lifetime of constant re-adjustments (more than the average person), and it gets EXHAUSTING!

I dont regret for a momnent procreating although the thought of passing this to my kids horrifies me but hopefully if that happens they will be able to look forwards as you do.

I thought a lot about that too, before I had children. I was fully prepared not to procreate - until I met my husband. RA runs on my mother's side of the family: her mother, and her brother. Mom didn't have it. Of ten children in my generation (my sister and cousins), I was the only one to get it. After seeking advice from my rheumie and a high-risk pregnancy specialist who'd had many RA patients, we decided the risk was probably diminishing with each generation, and our kids would probably be okay.

And if not, we'd deal with it. They're 18 and 23 now, and so far so good!