Does anyone else get angry at this RA disease? I’m finding myself getting so very angry at things, like the injection I have to have every week that makes me tired, but if I don’t have it I’m tired anyway but get swollen parts and pain. At the fact that my little granddaughter gets poorly and I can’t help out because the hospital stress how I need to stay away from poorly people. At the fact that this stupid government now make it so my family should pay £39 or whatever it is for a PCR test incase it’s COVID because laterals don’t always pick it up. At the fact I liked a whisky or a baileys or a glass of red wine or 2 or 3, now I dared’nt in case I need pain killers later for the oesteoarthritis . Etc., etc. I guess it may be because I’m still in the early months of being diagnosed…🤷♀️
Once again vent over 🤦♀️ Sorry it’s either on here i vent or my poor hubby gets it all 🤷♀️
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Haz58
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Yep get really P****d at times and often feel left out or a kill joy. I order free lateral flow test from GOV . Uk every 7 days and give a box to my family 😜
Glad it’s not just me , but not glad you have it too if you get what I mean. Yes they’ve got laterals but it doesnt always pick it up. My sister got COVID a couple days f weeks ago, lateral tested positive. Her hubby then started with same symptoms 3 days later but for 2 weeks tested negative. It must be COVID we all reckon. My gp and hospital docs have said this omicron variant doesn’t always show on laterals so a PCR test should be done if symptoms of COVID or been in contact. P.s no idea what some of this is underlined 🤷♀️🤦♀️
And J107 as far as I know the free boxes to us of LFT are numerically registered to us now like the PCR ones were or at least that's what my paperwork seemed to say as of CEV risk so what does giving a pack to family do ?
My son was due to visit me . He did a LTF before and tested positive so he didn’t visit and I wasn’t exposed. I test myself every day I have been out I don’t report report results unless I were test positive.
I admit I don't now as took all the precautions and wore masks etc etc and still got it. The CMDU doctor said Omicrom was so virulent, no way realistically can it be avoided. So now just wear a mask in the medical situations and don't use public transport at all so it's just be careful but not obsessive. We got it long before the son and DIL did and so I'm not sure that them testing would have done anything now as we got it first. lol The antibody infusion worked so fast and is very effective so its not made me complacent but reassured.
I have to say I do the same if someone comes to see me and not tested that day I hand them a LTF as I prefer to head off an issue rather than let them in and then find out after the fact they were positive.
It is clearly understandable and i think i can say we have all felt like you at times darling. I have had RA for 20yrs now and i find it is not worth gettingt angry over ra now. If i cry it is because i am not feeling great, but angry because of the ra no. I don't know if this helps or not, but i say God only gives us what he knows we can cope with. Mind you i wonder sometimes if he has a sense of humour as he has given me everyone elses share as well. xxxxx
Aw bless you Sylvi. There’s a lot worse than me and I feel bad for complaining sometimes. I guess it’s because I’m so new to it and I’ll, maybe, hopefully, get used to it. You do help and I thank you for it. Todays another day and at least I’m still here. Xxxx
I hated it with a vengeance at the start. I still do 3years on but I just have moments of hate otherwise on the whole it’s of for goodness sake or words to that effect and keep on going xx
When I feel really sorry for myself I stop and think of a couple of friends who had RA much worse than me. One of my closest friends died at the age of 61 when she got pnuemonia, made worse by her condition, and another, who had Lupus, died at the age of 39, with sepsis! We have to take care, even it's because of people like my late friends, who would love to be here today given the chance even with severity of their symptoms. When I do this I don't feel guilty for grumbling about the pain I feel or the limitations it places upon me, but it does put things in perspective and it stops me in my tracks. I start to feel grateful for what I can do etc etc. Syvi, you are one of the stalwarts who just gets on with life...I really admire you! xx
Like you darling i just have to get on with it as it won't change whether i moan or not. Yes i do have days when i would stay indoors feeling sorry for myself. xxxxx
I used to scream inside “why me “ but that’s just stupid as I I could be a lot worse and there are more people less fortunate than me.I have learned to live with it and adapt.I am stubborn and don’t give up so I could hardly do stuff and used to cry with pain but more meds including biologic has helped me.I used to get such black thoughts when I couldn’t walk but now I can do small walks with a hiking group.Yes I am less able for a few days but I have lived that day that I want to so won’t give up
Most of the time I manage ok, then something happens which I can't do and I get sad/mad for brief spell and it passes and I accept my situation again. I'm usually a positive person, but it can be difficult at times as the things I can do are quieter sedentary activities and I was a physically active person.
Me too, i was always on the go. Gardening, decorating, walking. Last night I was told my 3 year old granddaughter and son are poorly and I always used to help out in this case, now I have to stay away. It drives me mad feeling useless at times.
Understood. Yes, the pain, the frustration and the lack of understanding from others can make me cry with rage. However, I try very hard to be upbeat and practice mindfulness. I find it helps
Hi - Try the red wine on its own without other alcohol. It contains an anti-inflammatory so you should be OK with two or three glasses but not mixed with other alcohol - says the expert. At least it will calm you down a bit. It is quite good for you anyway - lowers the blood sugar, dissolves fat. contains nutrients, improves anaemia and increases energy (in me anyway).
I would not pay £39 for a PCR - can you not get them free under certain conditions? Most people I know begrudge the £2 for the lateral flow tests though some get them free from work. I tested negative for several days even though I had symptoms. At the other end, I was still testing positive long after the symptoms had gone.
Ok. Yes I’ve read it’s good for you in moderation. Perhaps I’ll have a glass with my evening meal before 6 then hopefully if I need painkillers in the night it’ll be fine. My son can’t get them free. It’s a crazy price isn’t it.
It really isn't just you! I still, after all these years, get angry. Angry at the limitations of my life, angry at the poor standards of care, angry at being left to just manage by myself when I could do with help. Especially in the middle of the night...when everything gets out of proportion.
But I reckon it's better that feeling sorry for yourself and giving up. Fight for the best treatment!
The middle of the night stinks doesn’t it on bad nights! I’ve taken to playing online bingo at 2 in the morning if I can’t sleep until pain killers kick in. I do limit myself to what I spend though, a 10p ticket every three game, for a pound it helps take my mind of things and a bonus if I win lol. Not everyone’s cup of tea I know. X
Same. Diagnosed 20 yrs ago in late 20’s. Cheated and frustrated are how I still feel at times. And unfair! Especially at the lack of financial support system and that continued discussion from drs & consultants that you need to make changes to manage. Nothing to compensate now or into retirement. Sometimes just a discount to swim would be greatly appreciated. Sorry, my release today, now back to 3 good things.
Yes. Same here. Now in my 40s, diagnosed in my 20s. There is no help. I struggle so much working but there is no choice. I was told when diagnosed that I wouldn't be working in 10 years . Lol.
I think stop and rethink ! RA is no where near as bad as some diseases. As for the covid try not to worry as you'll have had a pack of lateral flows and if you test positive can access treatments. I've had RA for years also got a granddaughter but we got it before the son, DIL and she did. I think risk for covid is everywhere we do have to be carful but the medications do work and work well. I thank my lucky stars I don't have a good few diseases and can live happily with RA without too many issues. I think you could ask about a change of medication and also ask for blood tests as it may not all be down to RA but do you have for example thyroid disease. I don't know but might be worth asking about rather than suffer in silence assuming everything else is ok and all the issues are related to RA. I take AZA and inject Orencia and so there are meds which work so don't give up. Hope you're feeling better soon.
Oh yes, angry, frustrated, usually when it affects what I can’t do and I’m stubborn and don’t want to always ask for help but I think that’s something that never goes away totally unless you have no joint destruction. As long as you don’t let it take over your life, and can come here to rant and get it out of your system, we all understand 🤗 I’m wondering what makes you feel so vulnerable? Are you on rituximab? It’s sad you feel restricted on visits if your grandchildren are ill but I see my great niece and nephew ( who always seem to have colds) very regularly and although I’m careful with washing etc I never catch anything from them. Maybe do some research to see if you’re really that vulnerable, a shame to miss out unnecessarily especially if you’re vaccinated. I hope you feel able to see them soon.
Well im on 15mg MTX injection. But every time I see the Rheumy nurse or speak to her on a phone appointment she keeps telling me I have to be very careful and stay away if anyone is poorly. I have had steroid injections too, every 3 months but last one was in January. Mind you even before RA I had a rubbish immune system, if there was anything around I’d get it. I’ve had 4 vaccines, last one in January. I think she’s just pushed the being careful so much it’s made me very wary. Mabel, my granddaughter, had chicken pox a month ago and Rheumy told me to stop MTX and steer clear for 2 weeks then.
My nurse has Psoriatic Arthritis so I tend to hang on her every word.
Thank you for sharing Haz and yes, I absolutely get times when I feel angry about this blessed disease!!! But like everyone else I try to focus on the positives 👍 The hardest thing for me is when friends just don’t understand and get funny with me because I can no longer do what I used to. I’ve even lost a few friends over it which I still find very sad 😞 Mostly however I focus on the positives i.e. what I can do rather than what I can’t 👍 But sometimes I find a good rant does you the world of good 😊👍
Ah rant away it's like going through grief losing previous life style learning a new limiting life style. I try to not to get angry , can feel resentful, but try to save what little energy I have for positive activity.
Always have to bulid up to doing my injection, know it's a catch 22 as they say hate taking it,
but have to if I wish to have any quality of life.
I mentioned the alcohol thing once to the RA nurse, she said a glass of wine (red or rose in my case ) is ok. Plus I still enjoy a G & T reckon the quinine in the tonic helps.
I take most days hour by hour, onwards and upwards Haz58
Morning Haz58, you have every right to be angry. I certainly get mad and frustrated at times One day things were getting so bad I phoned the samaritans, lovely people, understanding. I have no family to help me. Get mad, try to vent your fury somewhere safe or on doing something constructive but importantly DON'T FEEL GUILTY. Arthritis is a frustrating, painful illness that affects people of all ages. Good luck. I wish you well. 🐕🐕
Hi Haz, I understand how angry and frustrating RA can be. If you ever need to talk to someone else who 'gets it,' you can use our Here4U service and have a chat with one of our trained volunteers.
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RA so they say.
RA so frustrating
Feel so alone stressed RA flare and uncaring workplace help
ANGRY
