As many will know I'm not having a great time at the moment ( thanks for all your invaluable support by the way) but this morning tops the lot.
None of the treatments have worked so far and I've got horrible side effects. This morning I've no water or power thanks to Storm Doris and made my way to the supermarket to buy bottled water. I was at the checkout at Tesco and the lady said would you like help with your packing? And for the first time ever I thought yes I do. I'm shattered, my throat is full of ulcers and I was nearly in tears trying to get things off the shelves because of the pain. She helped me unpack my trolley then packed my shopping. I was so grateful. But from behind me in the queue I heard "lazy cow" to which I heard someone else in the queue agree and say "it's supposed to be for disabled people, some people have no shame"
I just burst in to tears - let's just say some people got an education in rheumatoid arthritis this morning that they weren't expecting!
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Frankiefarr
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So sorry to hear you're so poorly and good for you having the courage to explain why you needed help.
I have fought so hard all my adult life not to become visibly disabled ie keeping active and as fit as possible, eating well, exercising, but the down side is that people just have no idea how difficult and painful life can be with RA, as there's not much to see.
I’m 100% with you regarding your post, I look ‘normal’ whatever that is, but have RA (8years) and a genetic heart condition but try to stay positive. No point getting down in the dumps even though I have my moments.
We can’t educate the masses and people only understand if it directly affects them. It is an invisible illness for some people and I fully understand people’s frustrations who have RA and other similar conditions.
Keep active and NRAS are brilliant providing information regarding research and support.
We are allowed to have a leaky moment every now and then.
I hope that the person gets karma some day.
Jacqui
Good for you, I say. I know your feeling like 💩, but for you putting complainers in their place, I've bet they've never felt so embarrassed about their actions.
hi I'm told too much resting is bad .one dr says rest the others say move . I'm in so pain some day I sit and cry then try and do my work this morn my ankle gave way it's pulled all my knee I'm so annoyed with myself x I sat in church talking g to hom upstairs. I get do down I don't no what 2 do xx
But exercises must be included, even if that means a gentle & slow walk. We all do what we are able to do. Me, I do exercises at home, nothing to strenuous though, my body wouldn't be able to cope, I do gentle stretching exercises several times a day, so my body dosen't seize up. Dosen't stop me being in pain though!
Sorry to hear that your not feeling to good. Maybe you should get intouch with your GP, let them know exactly how your feeling right now. Don't let them give feeble excuses to you. Your the one in pain. Not them.
hi thanks saw dr last thursd. it's taken 6 wks for app. I phoned and told the lady on desk to tell him my ankles had given way and I'd fallen and pulled my keep. I strapped or up. I have very bad osteo arthritus in my joints have had it yrs I have fibromyalgia as well and tendonipathy in my ankles had them injected been a better to walk with my stick buy not far but today it just gave 2day plus I'm having a bad job swallowing saw dr st walk in clinic ice my dr has refered me have a app in 2 wks which is gd. seeing a rheumatologist Tues stayed getting bad heads aches under a neurologist for that as well. 63 and falling apart I used to be do fit in ran swam went to gym 4 times a wk danced as well but 3 yrs bk it stopped even though iv had the arthritus for 20 yrs I woke up and seemed to seize up my knees are very bad my lower bk hands and wrists I do try every day to do house rock I take time I have a stair lift and alk in shOwer x .hubby said there's not much help iv seen Dr's put on morphine patches got very ill so on the tablets which make my tummy hurts have ibs x I just wish I could just go out walking but can't walk very far some days I can go round shop with daughter other days I barely walk to bottom of garden. my daughter helps a lot xI have exercises to do under s physio lady half the exercises I csnt for but try x.bi hope the wk end goes ok for you x
giving out big hugs today. Yes it hurts like hell but try to rest and pace yourself if u can. Today i swam a bit, then home to see my 2hrs a week helper, then shopped then to bed for 2 hours. will probably be back there by 9pm. I am getting better at pacing my life and so will you xx
Rest assured YOU ARE NOT ALONE. I think we would all admit to having really bad days and having a cry to ourselves. Use your own initiative and gut feeling. Rest a bit and move a bit - learn how to get the balance right. Yes it takes time and a lot of practice, You WILL eventually learn. I wish you well. Take care xxxx
I so feel for you, I had a similar experience when collecting my monthly meds from chemist, I burst into tears too & the place was packed, I couldn't get out of there quick enough! The rude, abrupt pharmacist probably didn't even notice how he'd upset me!
Someone once told me a quote that they use - "Karma's only a b*tch if you are". I hope karma comes back to bite that woman in the bum big time!!! Some people are so ignorant.
I too am a firm believer in karma,and esp that saying.... I've seen it happen once or twice in my lifetime,so I know it does happen,may take time,but that makes it even more worthwhile 😊
Disgusting people. Pleased you told them. Hope they felt ashamed, they must be hard faced and ignorant.
These experiences really make my blood boil and is partly why I now talk about RA to anyone who'll listen. Poor you Frankie, a horrible experience. Ignorance knows no bounds - 35 years ago when I was in a similar state, I had just been awarded a blue badge. I was only 35. I parked at Waitrose only to be confronted by a complete prat who accused me of nicking the badge from my Granny. That was not as nasty as what's been described by people here but I felt shattered by it. Fortunately I managed to yell at him that he could have the b****y badge but he'd have to have the pain as well. Because I had no visible damage at the time I'm sorry to report that similar insults became a regular part of my life. Less so since I walk like a penguin and have deformed hands! Thank goodness NRAS promotes RA and has given us a real platform in society and politically.
Witness i had a similar incident when i first started using my scooter,i asked three times to a man in a queue to get a ice cream to excuse me because i wanted to go through,i didn't want a ice cream,anyway hesaid to me"You don't think because your in that you get special treatment do you" well you can imagine the response he got from me Off was among some of the amswers he got,But god did it upset me so much that i haven't been to the carnival since.xxxx
Sheer ignorance and absolutely no concept of how it could feel to be on the receiving end of what is basically idiots being envious.
I refused to attend a walking test after 28 years of having a blue badge so gave it up. I hobble and waddle in pain rather than be subjected to that type of abuse. I know I'll have to reapply one day but isn't it pathetic that these people have had such a profound effect on me/us? And why the walking assessment? Was I miraculously going to walk well again after 28 years? And those assessments have probably come about because the public saw too many 'undeserving' people using blue badges. Human nature sucks sometimes. End of rant!
God bless you! It is very hard for us because the ill nes is for the most par invisible. People dont understand the pain, medication side effects and fatigue we struggle with daily.
Even family members dont understand fully although they see your struggle and all the pills you pop.
Just ignore the rude comments and the ignorance. Keep doing whats righ for you and leave the rest to karma.
You have the courage to explain to these morons the condition you have disability sometimes you cannot see, what would l give to have been there to tell them go to h--l morons,you are a strong person never give in to these people
I really feel for you - and well done for speaking out like that. I am wondering if it is time for a badge?! Joking (?) aside it is awful that people are so judgemental anyway - no one can ever know what someone else is going through and we all know from posts here that outward signs of RA are so often not any sort indicator of pain and disability.
Oh bless you. It's instances like this that truly show what an invisible disease we have. Sometimes people just don't get it & how could they if they don't know how you feel?
I hope you soon turn a corner, the right meds for you are round that corner so things start improving then you won't need help & have to listen to people who think that disabled & poorly people need to have outward signs of their disability. Hugs (((x)))
After 17 years of living in the UK. I still cannot get used to packing my goods at a check-out. In S. Africa, we have packers, at each till. Every time I shop, I ask for assistance. Arthritis in fingers and severe kyphosis don't allow me to pick up/ lift. Besides, why do we have to be disabled to get help???????????????? Sorry you had such an unpleasant experience.
hi I haven't got r a . I have ostioarthritus and I'm falling apart I'm 63 iv lost 2 stone in the last yr I had ankles injected they been ok but this morn my right ankle was painful and gave way here I pulled my bad knee and hurt .iv strapped my ankles and put a tight knee bandied on over tried so many tablets and PATCHES they only take the tiniest bit of pain away and as they made my tummy bad iv stopped them I have bad ibs as it is I'm always hurting I'm getting bad cluster heads aches iv had cto scan and mri. going g to have another I get up and cry when I'm on my own I ask God to help me I don't have many friends but joy and my brother and wife help my hubby works he's feeling up with Mr being in pain I wish it would go seeing another rheumatologist Tuesday x I'm hoping she can help . no one should put up with what these people said but I get it all the time as well . God bless you x hugs
Hi again, I also have Osteoarthritis, diagnosed early summer last year. Severe Osteoarthritis of my neck / shoulders / arms, which is gradually getting worse & starting to kick other parts of my body. Nerve pains in my head are unbelievable. At present I only take one Gabapentin 300mg tablet, three times a day. But gradually my pain & discomfort is increasing, so have an appointment with my GP next month, if possible, he'll increase the dosage, or try something else.
This week for me has been a tough one with the OA, but I try not to get too stressed. Having a week off work has helped, (Work at a school, so half term hols). I live by myself, so I've generally had a restful week.
My symptons are not as severe as yours, but there are plenty people on this site who know exactly what you are going through. Feel free to express how your feeling - good & bad.
Friends & family can be very supportive, but unless they have similar condition, they don't know exactly what we are going through & how much pain we suffer. That's why this site is so helpful & very friendly, because we're all in the same arthritic boat 😉
I love when someone asks what is going on with you and you tell them rheumatoid arthritis, the only word they hear is arthritis and go on to tell you about their arthritis lol. I listen because I know arthritis is painful too, but if they only knew.....
Ha, the last person who did that with me was the nurse doing my blood test - I could barely get a word in while she told me how bad her wrists were. I think she was trying to empathise...!
I am in some groups where it is mainly Americans and they don't use ra they use the words RD disease therby separating it from OA and i think this is what we should all do.xxxx
This is an AWSOME idea, then maybe others can take our issues seariously and we won't be thought of as drama queens or faking it!!! I hate it when people think I'm too young to be "walking" around like I do. One person even called me Egore and told me Halloween is over!
Many of us here & some medical professionals, my Rheumy included, use RD nowadays, Rheumatoid Disease. Not to belittle the pain & disfigurement OA can cause but the two are quite different as you know but Joe public doesn't, the arthritis tag doesn't help. I've used it for over 3 years & I've found it stops people in their tracks, they ask what it is instead of retorting my aunt's best friend's next door neighbour's dog has it too. I play it by ear how much they need or want to know or how they ask, so usually just saying it's an autoimmune disease, my own body is attacking itself which causes joint destruction but I take meds for it & what you see is thanks to them, or words to that extent! I also add I have OA too & take powerful pain relief for that so I do understand it can be painful without proper management.
Might be worth a try lovekittys next time someone assumes it's the same as OA?
Big hugs and take care. Ignorance and a loose wobble gob is a far greater disability to have.
Last week someone told me how well I look. Then another to try magnetic insoles they helped their elderly relative. Been off sick 4 weeks back at Drs straight away he said you are not moving well not fit to work.
Sometimes it is easy to smile others it gets to you.
hope your better soon people are so ignorant to RA still I have had the same as im only 33 and I have had mobility problems for over 10 years mow due to having AS the amount of times I have been given dirty looks for parking in a disabled bay is unreal people just presume because im young I am fit and well its only when I get out and walk with crutches that people realise there is something up with me people are way to quick to judge without knowing the facts its annoying and frustrating at times well done for putting them straight maybe next time they might think for a second or two before opening their big gobs.
Sorry that happened - It has happened to a lot of our folks unfortunately. I am glad you gave them an education. Wish I had a film of it...
Oh my dear so sorry for you ,R/Athritus is so very painful which people can't see if you had a big lump your face ,I feel for you some day I can hardly walk, thinking of you xx
That's so awful, but I'm so pleased that despite feeling that upset you got up the courage to educate! The one good thing you can say about people like that is that they are saying these hurtful things, completely naively, because they don't want to see something meant for disabled people to be abused, but they are just ignorant about what disability is and the large number of invisible illnesses. Hopefully they will never say this again, and may even pass on this lesson if they hear others make the same mistake. Well done!
Sendng you a BIG HUG hon- Tesco is a lifesaver but some customers ignorant pigs - Last one I encountered like that I turned and said 'just be glad u haven't got what I have - I wdn't wish this on my worst enemy . I'm tempted to say get cards printed with that phrase on but that wd be bitchy. Wearing support gluvs as i do now minimise such comments. xx
I'm so sorry that you're having such a rough time at the min,but bloody hell,good on you for giving them what for!!! Because I'm only relatively young(43,and look youngish for my age anyway) the amount of times I've pulled up in a blue badge spot,and before I can get my badge out of my bag I can already spot the people waiting to see if il put a badge up or not,and even then they still look at me as if to say they think I'm fraudulent with it...... I'm just waiting for the day someone thinks they're 'brave' enough to challenge me😤 As you most prob said,unless you've walked in our shoes,you truly can't understand the fatigue and how it hits you,and that's just one teeny tiny part of what we have to battle with daily -even tonight when I literally fell through the door at puppy class(held together under my clothing by elastic supports/splints) the guy there took one look at me and asked if I was ok.... I must've looked grey with the lack of energy,and cold I felt too,and he couldn't help me settle into a chair quick enough or get me a drink of water either. That's the kinder side of humanity,but unfortunately,also the rarer side nowadays. It's because we battle on a daily basis,trying not to let it rule our lives that we've learnt to live through most pain that the majority of people would be laid up with,and that's why people think we're 'cheating' the system ... it's just pure ignorance on their part,but yet again,I'm so pleased that you stood your ground(even though you didn't need to explain your situation to anyone) as there is only so many snide comments at a queue that any one person can take in a lifetime!!
I hope you went home and had a treat as a reward for educating those people,you certainly deserved it.
Hope the next day or two gets better and easier for you
So sorry to hear this. Unfortunately because we look normal and no one can see our pain. People do not believe we are disabled. Despite the campaign saying that not all disabilities are visible. I blame that fact that so many people know nothing about RA. How many times have you said that you have RA to be told ho I have arthritis to. It needs to be made aware to people that they have a different thing all together. Without knowledge of this difference out there we are always going to be considered soft, lazy or just a moaner. Hope your ok now.
I never understood why the cashiers in Tesco asked "Do you need any help with your packing?". I always thought "Do I look as if I need any help??". Now, sadly, I understand why they ask. My problem isn't with the checkout packing though - it's with lifting the heavy bags out of the trolley and into the car! Maybe those of us who don't accept the help need to make a point of explaining (in front of other customers) how much we appreciate the offer and why.
I understand the need for you to go to Tesco that morning,but usually I get my shopping online via Ocado - not only do they price match against the bigger shops too,but I've once had a driver stand outside my house,ringing my various contact numbers and leaving messages for me for 45 minutes!!! I'd been having a flare and had literally passed out,even though my phone was next to my head,and the alarm had been set too!! Luckily,because the lights were on and blinds were open,he figured someone was in - luckily I also have a disabled sticker on the door advising people that I may take longer to answer (although that is the only time I've ever taken THAT long before 😝) I couldn't thank him enough,and not only did I send him a very grateful text afterwards thanking him for doing that,I also spoke to their customer services to explain how that one gesture had completely restored my faith in humans at the time. After explaining how I'd managed to ignore the doorbell and phone for that length of time,I'm now on their list as a customer that may need help with my shopping,so if I'm having a really bad day,they have my permission ,and also instructions against my account, to come in and actually put my shopping away for me too - I couldn't believe they do that,and apparently they do it for quite a few of their customers too,all at no extra cost either - no matter what deals are on anywhere else,Ocado have a customer for life in me,purely because of the courteous and polite manner anyone along the chain speak or react to me,regardless of the query - I just haven't found that type of customer service anywhere else before,yep I've had Tesco ask where I want my shopping,but you can see in their eyes as soon as you say anywhere further than the hallway they generally roll their eyes😝.
Does anyone else know this about Ocado? It may come in very handy if you do online shopping,and are on your own during delivery times.
I was amazed at them delivering to us,as we can't even get papa jons or Pizza Hut to deliver here,as even though we're officially a town,we're still quite small and quite rural.... it was a blessing when I found out Ocado did deliver,as being a veggie they also have a much better selection for me too😊 But like I say,it's definitely something people should know about,and if need be, use to their advantage. Maybe Tesco would offer the same for you if you spoke to their customer services and explained?
You will probably find that they are internet trolls in their spare time. Good on you for giving them an explanation, I would have been far less gracious and would have reminded them about sex and travel instead.
Absolutely ridiculous and I feel for you, yes I know what it’s like having RA and a heart disease. People’s lack of education, compassion are things you have no control over so try and not let it affect you, I know easier said than done! You need to stay positive regarding how you think and ignore idiots.
I also looked Matilda’s reply to you and I am in the same boat, I am stable through biologicals and mtx and try and exercise regularly and eat well, even my employer doesn’t understand even though I provided some literature. If I had a walking stick I’m sure I would be treated differently.
Have look at some meditation techniques online, I’m no expert but have been trying for a few years, there’s a guy called Wim Hoff also, he’s brilliant.
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