RA is not a dreadful Disease: You have to live with... - NRAS

NRAS
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RA is not a dreadful Disease

You have to live with pain with a smile, and stay positive, it will change your life, rather than complaining. Sorry if I have hurt anyone's feeling, this is the best way I deal with.

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Definitely! although not always easy. I always find something to laugh about with my warped sense of humour :)

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ALL bones are funny bones, right? Lol.

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Sometimes, even with the best will in the world, it is necessary to say ouch! I don't like that. That doesn't mean you are negative about yourself or the disease, it just means you are human.

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Ouch?

There's a new and more genteel word to add to my vocabulary of pain. Lol.

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It's been dreadful for me. I lost my life, my job, my interests, my independence, my identity. My golden years of retirement have been taken from me with plans of travelling with my partner gone, vanished into thin air.

My role as a grandmother has become that of a grandmother who cannot climb hills, swim , ski, camp, nor travel. We are all outdoorsy people so this has been an enormous loss, other grans and grandads within the family still do these things.

I mainly stay positive and have tried to diversify into other activities, but they are not the same. I want to be out in the hills.

I try to keep busy, but RD has been the most godawful disaster on me and those around me. I would not wish it in my worse enemy.

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Hear hear. RA is certainly a taker however positive we are.

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It's been the same for me too Mm...dreadful that is!

Besides we are not all the same are we, some of us can put up with more illness, pain, stress etc than others. Just as we don't all have RA to the same degree either..some have it more severe than others for whatever reasons. I have more than my fare share of health issues, which I won't go into here or this post will only turn into another of my ranty whining ones of which there have been a few of late. :-) That said, on the whole I like to think I've made a decent fist of keeping my spirits up and my sense of humour, which I often include in my posts, including some of the negative ones, even though not everyone seems to get it! :-)

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You have lost a lot too, yes we have just got to get on with it, make the most of it...blah, blah, blah..... but let's face it, RD is 💩

Who would choose this over being healthy ? !

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Well I can’t do my job as a dance teacher anymore or walk with my rambling group anymore if it wasn’t for being put on antidepressants I know I would not be here now 😔

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Ditto Mmrr

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It is good to keep a positive attitude and a sense of humour.

But uncontrolled RD does horrible damage and as it progresses, life becomes more difficult.

That is putting it mildly. Health is precious. Losing it and the ability to do so much that used to be a pleasure, and easy, is a huge loss.

If we do not deal with the grief, we won’t get through.

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Yip. I agree. You have just got to get on with it, but sitting looking at the hills, photographing them just ain't the same as climbing them.

Reading to my grandson, pleasurable as it is, ain't the same as teaching him to ski, or climbing his first Munro with him.

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Just being able to carry out my own personal care is often not possible, so much excruciating pain; not the kind that you smile through!

I too cannot enjoy my grandchildren. Hands and wrists won’t lift even a baby.

I loved so much outdoors: gardening, hiking, sailing in an amateurish way long ago, and loved knitting etc. I can smile through those losses but not excruciating pain!

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Same here charisma! I've barely been able to move my arms all day until a couple of hours ago. I dread to think how I'd manage if it wasn't for my wife.

I loved the outdoors too...used to walk miles birdwatching with my dogs up in these here Welsh hills, and managed to keep it up for many RA ridden years despite painful deformed feet, so I don't surrender easy! That's until it proved impossible a few years ago. I used to go all night moth trapping out in the sticks too...absolutely loved it! I love music too and despite clawed hands can still safely operate and listen to my seriously good hi-fi system :-) , even though I've had to adapt when playing my record collection that dates back to the early seventies. I do miss playing my air guitar though. :-) There's still much to enjoy in life, but there's no denying that having to stop my outdoor passions has been a bitter blow.

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🎸🎸🎸🎸🎸

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Twang! :-)

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My modest guitar collection is now a thing of the past.

Unable to play anymore and lamenting that, as they hung on my walls or sat in their stands, became too much, so I flogged 'em.

Helped emotionally, as well as financially. :)

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It must have been great being able to play a guitar. I'm strictly a listener and not a player. It must have been a downer not being able to play any more.

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We all have to pay our personal prices to our diseases, although we'd all prefer to have never had any dealings with them in the first place. Lol.

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Only got as far as camping, any time the mood caught me, in the Campsies, but happy to traipse 15, 20miles before setting up camp.

No hope of that any more.

Miss gardening, too.

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🙃

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I agree when in remission life is normal, but for some remission is not acheivable. As I sit here with only 20% kidney function unable to walk like I did, cook like I did, dance as I used too and garden done by husband and housework by a cleaner I can promise you that there are worse conditions add to that shingles life ain't great at the moment. But tea is in the oven and rice pudding for desert so life is not all bad. I agree look for the posatives but understand that for some RA does not have any posatives as they live with pain and damaged hands etc. My worst issue is I look "normal" so yesterday at Sissinghurst the looks I got sitting on a bench while a lady not much older than me stood in the tea shop !

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You have been robbed of much m-l.

I have never had a normal life (as in pre RA) since RA hit.

But I enjoy life as much as possible, knowing it could be far worse.

You do well just to keep going.

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Yip.

I look a picture of health too, until you look at my hands and see me walk. And, I'm good at putting on a positive facade and despite what RD has done to me I still look much younger than my 60 years (which is good and bad !).

But, trying to remain positive, I'm off to my friends house. A, 1 mile drive to watch Poldark and have a scone and tea, then home to be in bed by 10.30pm or I'll be wiped out tomorrow.

( I used to walk 12/15 miles on a Sunday, taking in a hill or two along the way and then have a pint and pub food afterwards, come home and make sure I was prepared enough for my 2 x 3 hrs teaching stint on a Monday. Never in bed before midnight).

Ho humm.

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Some would ask... compared with what? Fortunately I'm not one who's crippled with pain & has deformed joints so not fussed by your statement Arvinder! 🙃

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Indeed. It's not a competition, but RD must be up there with some of the most miserable chronic illnesses going.

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It’s certainly a life changer and at times hard to smile but I try my hardest and try to push myself but sometimes the RA wins but hey ho we fight on to another day ,keep smiling fellow RAs xxx

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I’m glad you can do that, I really am. But RA took my life, career, my independence and my hopes for a bigger family etc etc when I was 27. I can’t just smile and be positive through it all. Everyone’s journey is different and we all cope in the best way we can. I complain if I want to, better out than kept in. Maybe you’ve just caught me on a miserable day 😊

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Love to you kittj

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Thank you Georgia x

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I'm with you, it is indeed a life changer, big time.

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😘

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Well said. Sending you a big hug x

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😘

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I am very sorry to read most of your posts. I didn't mean to hurt anyone's feelings, but if you pray to the almighty. I have stopped a few things that can cause pain are no Tamarind, no bacon, occasionally have sausages, have more vegetables than meat. I have some how changed what I eat and has made a difference. You can ask your Rhumologist to check your Kidney Function, if you don't ask you won't know how you are doing.

About 2 years ago , I had a very bad reaction to tablets , which were given to me by my GP, the Dr's in one of the hospital in London were saying it was Lupus, had a very bad reaction on my face. I was in hospital for 10 days, was in a bad stare, could not get our of bed, my husband was very understanding, and helped me most of the time, had lost a lot of weight. But thank God I am my old self ago, my Rhumologist said it was a sigh of Lupus, but it was not in my blood test. I am still a RA patient.

Don't worry everything will fall in place,just take it easy, my mum is a Kidney patient as well, she tries to do things round the house, and keeps busy, so you don't dwell on your pain, I take courage from my mum. Hope this will answer most of your questions.

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I don't mean to upset you, but things don't always fall into place. There are people on this site who really have bad experiences with RD.

Not all of us are religious. I'm pleased you get comfort from praying.

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It's natural to search your life for an answer (e.g. diet or lifestyle) to why RA struck, but that doesn't mean there actually is an answer. I'm 70, have never smoked, barely drink, eat healthily, spend the summers doing lots of hiking, used to dance every week till the RA started, exercise at home, have a happy life, do voluntary work, see my friends quite often. Where is the reason for RA? There's no point searching for an answer. Even if I found one, it would only make me feel "guilty" that I had done something to bring this condition on myself.

It's good that you can take inspiration from your mum, but I can't share your optimism that "everything will fall into place", or that it will be a good place.

I wish you well.

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I understand what your saying. This disease does change your life not only physically and mentally but financially and most importantly it effects the ones you love. My husband and I had plans to travel and walking was a pleasure I never backed down from any exciting adventure now I can’t it breaks not only my heart but my husband and family. My husband won’t leave me behind.

But I still have my sense of humour and can laugh at myself I’m also a more compassionate person in this respect the disease has made me a better person.

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Embroy it is important to try and stay positive and I am one of the lucky ones at the minute I am not in to much pain and I really feel for others when they are suffering but you are wrong RD is a dreadful disease and so many people are affected by it ....

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At work or at home I don't complain, on here I can be honest and go OWWWWW so that the people I love, see me positive as it would upset them ie. elderly parents who I don't want to see that side of me.

There is a lot of pain for some and a lot of loss but I dont think the right word is complain......I think a sense of loss which we all have the right to grieve for in some moments of our life when it stops us from doing something.

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I agree with you Deeb2908. We are bound to grieve for the loss of the good things in our lives, similar to grieving the loss of a person. My life was incredibly happy just before RA struck, just after our son's most lovely wedding and a summer of exploring different parts of GB and Europe on foot with my husband, singing with my choir in Bruges cathedral and at the Last Post ceremony at the Menin Gate. Life was wonderful and then ... a few months later I had to give up dancing, choirs, evening class, meetings, going to lunch with friends, couldn't get up from a chair without my husband lifting me. There is no way I could have felt "positive" about my life at that point, despite what embroy says. Happily, most of those things are now restored to me, but this is a permanent condition and the fear of the bad days returning is another depressing thing about it. We may keep the fears to ourselves, but no-one can command their feelings, only their actions.

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Personally living with RA pulls on all different emotions. I do curse this dreadful disease for what it has taken away and the pain it has brought to me and others on this forum - I marvel when I have a good day and sometimes there’s that part of me that says RA has caused me to slow down as I lived my life very fast paced so there’s that positive.

Overall, I try to stay positive and upbeat, but we are but human. As I alway say, life with RA is filled with good days, bad days. Learn to take one day at a time and alway be grateful.

That’s just my honest take, my truth as an RA thriver 😌 - Blessings to all.

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You haven’t hurt my feelings, but I think you are being short-sighted. Chronic diseases are dreadful, and life changing. Many people on here are amazingly positive, but that doesn’t stop pain and disability that many have to suffer. So pretending otherwise is foolish to me.

Seeking support from fellow sufferers is not complaining!

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here here

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HiddenThis reply has been deleted

Hi, if you read up the thread a little bit the OP has posted another comment.

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I just found it, thanks!

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I agree but only when its not out of hand and not controlled, then its a living hell,and it frustrating because it takes all the things you love about life away from you, then you get depressed

if its controlled you get back control of your life , then you can say that and smile

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Yes, I think you have touched on something important Veronica. If your disease is well controlled, early treatment has been successful, or perhaps the RD not too severe I can understand why you might say it's not so bad.

But if you are very unwell, cannot find a drug that works and have been struggling for a long time it's not fun.

Like all things in life we should not be judging others, nor telling them how to feel/ behave.

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I agree!!!

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Exactly Mmrr

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Bullshit! RA IS A DREADFUL DISEASE. Yes it is not as dreadful as say cancer, but it it pretty darn close!

You must have a very mild case to even suggest that it isn’t!

Was trying to stay “positive” but I am embarrassed to even go to the market anymore is dreadful!

Having to go through endless trial and error of dangerous medications being injected into our bodies is dreadful!

Not being able to get out of bed due to extreme pain and needing more dangerous drugs like prednisone being ingested into our bodies is dreadful!

People do not even recognize me! I feel like a fat cow. My long silky hair broke off up to my ears, have 2 giant fat pads protruding from the side of my neck, I look like I am 9 months pregnant and gained 25 lbs on my very small frame. Seems the fat went to my face, neck and stomach. Legs and arms are ok. Was always 115lbs. Not anymore!

What I have now is Cushingoid. Man made condition from 8 long months of non stop prednisone!

Dr cannot find right RA drug to get me off the prednisone.

So when people say oh stay positive, don’t let the ra get to you, blah, blah blah, it is hard really hard to stay positive.

I will be positive when the dr can get me off this dreadful prednisone that is destroying me more than ra ever could!

Right now On vacation by a beautiful ocean and I cannot even get out of the bed until this disgusting prednisone kicks in is dreadful!

Imagine that! Isn’t RA so not dreadful!

Yay! stay positive!

Ps you are not hurting my feelings at at.

Maybe you have a MILD case of RA and can say it is nit dreadful but those of us with moderate to severe RA have a different view of how dreadful their disease is.

I pray to god your mild case of Ra does not get like so many of us that do KNOW exactly What RA is!

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Well said Troygirl!

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With you there Troygirl 🤗

Try not to give up hope (easier said than done I know only too well) I was on pred for nearly 30 years and finally managed to come off earlier this year x

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Here here xx

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Hi, Your title is bound to antagonise people. Like a lot of disease's, there are different types and stages of RA. I have moderate to severe and I most definitely have found the symptoms to be dreadful at times. The feelings and emotions are dreadful at times but people should be free to complain, rant , cry or whatever as it's a very isolating illness. Without expression, we can feel trapped inside a body that looks well but is crumbling inside. To smile when feeling shattered on every level isn't a true reflection of what's happening and can create even less support.

Whatever works for each individual is a personal thing. One shouldn't undermine how dreadful RA can be for many people.

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It is when you are dx in childhood! Robs you of playing and doing sports like other kids. Limits your choice of career, forces you to end your career sooner than you would like to. After 50 years of this disease, life is much harder now than it was when I was in my 20's, all joints damaged and deformed, multiple surgeries, serious life threatening infection with THR, life threatening spinal cord compression, etc. etc.

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I have to agree with Troygirl. RA is a dreadful disease. It is a very lonely disease as well. Even with good friends and family.

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As pep talks go, that one is hardly up there with 'How to Win Friends and Influence People', so I'd, maybe not consider motivational speaking as a career, were I you. Lol.

I understand, however, or at least I think I do, what you were trying to convey, but you chose the wrong way to put it.

The problem is, as has been stated, the diseases tend not to comply with the one-size-fits-all criteria you've applied and we are all unique individuals with different pain thresholds, physically, mentally and emotionally, which effect personal positivity to varying degrees.

I'm happy for you that your mental outlook assists you to such a degree, as does mine and no doubt others, yet I'm unable to deny or fully express how utterly devastating RA, among other conditions, has proven to be in my own case.

Others have barely touched the surface of it's detrimental effect on their lives, so I'll leave it at that and assume your post was well meant, although misguided.

Hopefully, your own condition won't progress to the stage some now find themselves in, but if it does, feel free to moan and metaphorically scream or shout your pains and frustrations at the unfairness and arbitrary way life has dealt with you.

Some of us will listen. :)

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I physically laughed at the first paragraph as this as it was so beautifully put!

Got to love a sweeping generalisation when discussing RA.

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Fanx Deeb. :)

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Maybe they wrote this on a good day, if that's the case I hope your good days continue

xxx

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Who knows...might be having a flare now, sausage fingers unable to type?

I hope not.

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You sound just like me ! I am one of those annoying people who looks on the bright side, and rarely let anything get me down. That would be too easy to do. I mean sitting there every day thinking oh woe is me, I have pain, but not taking pain relief ! Why ? Take the pills, they give you your life back ( till they wear off )

I've had this since I was 24, and i'm now 62, a lot of damage has happened and I've been broken by this damn disease. In a wheelchair unable to walk for a year through repeated failed replacement hip till infection set in. I had no bone in my leg for a year. But I could still smile and laugh. I had my children, I could drive to get out and about, no way was it going to break me mentally - physically is different, but I will never give in to RA

So I do get a bit fed up when all I see/hear is my life is awful, I have no money ! But they can walk ! They are not struggling on those flare up days just to go to the toilet.

They don't know how good they have got it. They don't understand how someone who is in pain and struggling to walk with a crutch is happier than they are.

It is all about perspective. Look at what you have to be happy about, LIFE !

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Sanctimonious comment! RA is the most debilitating, discusting disease.

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