Deep breath, this could be a long one..... my flares in recent months have seen me voluntarily reduce my hours at work, 5 days down to 3. Briefly I thought this was the answer to my prayers, but the most recent flare has left me feeling so emotionally broken, I just need to let it out somewhere, and this seems a safe space! Work (an infant school) have been as good as they possibly could be, but the fact is, my job (early years practitioner) really isn’t a job I can do in a half hearted way. Today several children needed help to pull apart some plastic construction components, and I could have cried with my feeble hands trying to do it for them. My colleagues are so sweet, and say ‘you must tell us how we can help you’, but out on my own with the children this morning I had no choice but to twist my hands so uncomfortably. I’m sick of being ‘sick’, and I expect no one at work actually wants to hear anything other than ‘I’m fine thanks’ when they ask how I am, because let’s face it, chronic illness is tedious to the onlooker..... one well meaning colleague keeps asking ‘are you properly better yet’..... to which I feebly say ‘much improved now I’ve had steroid jab, thanks’. I probably need to give myself a good shake (gently!). I have much going for me, job I love, supportive partner and daughter, and I know others are physically in a much worse mess than me but I’m just so frightened about my body really failing me at only 48 years of age.... sorry, I don’t know why I’m ranting here... just needing to get it off my chest. Oh, plus the suspicion that everyone thinks you’re ,boring, because you don’t/can’t drink on a night out... when you eventually feel able to go)
Starting to feel useless....: Deep breath, this could... - NRAS
Starting to feel useless....
So tedious to the onlooker.. something I'm starting to learn myself. This used to be nothing to me in my early teen years, I was not taught or informed on what I was going to have to go through, I thought cool my knees swollen I don't have to participate in P.E. today. I'm finally learning and understanding the severity and that it is much much more then a swollen knee, ankle, etc. I'm only 21 and just as frightened as you, I'm with ya there! Scary to not know what lies ahead. I have a friend always trying to invite me over, all I can respond with is maybe because I'm never sure if ill feel able enough until time come, and their response.. "I'll take that as a no" I'd like to explain to them.. but I know they just don't exactly understand. Mainly, you don't need to be sorry! This is exactly what this place is for! I came across it about 5 days ago and its really helping with my exploration of learning new things with this disease. I'm not a big advocate on the drugs.. because my body and underlying depression doesn't agree with them but have you tried that route? Wish you well, hang in there!
Goodness, you’re younger than my daughter, and I’m so sorry you’re already going through this. I’m on hydroxychloroquine. Been on that for about 13 years, but methotrexate has been added in in the last year as everything has recently kicked off. Hope you find solutions for you x
Wow Plaqinil worked for thirteen years. That's impressive. So sorry it did not carry you through forever.
My hands are week too and now my wrist have caused carpal tunnel and I have basal ganglion cysts. I just thought things were bad, but now I am getting horrible cramps in the palm of my hand. Right now I am wearing wrist and thumb stabilizers. I would imagine that will be until I have to have surgery on the hands.
My knees are swollen all the time. even after two full and two partial knee replacement. I have fibro too and hate the Lyrica, but it does make me hurt less. Most days it is hard for me to figure out if the pain is RA or Fibro. I also have about a thousand other diagnosis including Solitary Kidney, TMJ, Anemia, and the list goes on.
Right around the time of Diagnosis I traded mouth, kidney, knee scar infections for about a year. The mouth infection resulted in the final bone loss in my jaw and the rest of upper teeth all got so loose I lost them. Still have the most tender mouth, and having a har time working with mouth sores and the new dentures, but I put them in every morning and carry on.
I know nothing I have written will make you feel better, I guess I am just commiserating with you. I just keep fighting through it all; trying not to let it get me down.
But just like you, I can't let it really get to me. That is where this group helps so much. You can dump it all right here, talk with people who understand, and cry the whole time you are typing. Then it's time to get up, shake it off, and get back to managing your disease and your life.
You got this.
You’ve had a rough time! Yes, plaquenil was ok for 13 years, until my health went beserk - in the last two years I’ve had to have both ovaries removed, breast ducts removed, and suffered a deep vein thrombosis as a result of grade 4 endometriosis... I’ve traded all that for an early surgical menopause which has kicked off the RA 
Hi well I'm 40 work night in a residential care home and to say I love my job would be a understatement but I do understand totally what ur going through my hands are broken and we do a lot of cleaning and to have to ask someone to open the bleach bottle is embarrassing to say the least also I look at the people I care for and a 96 they are more adgile then me it's upsetting and not getting better I don't considered giving up work my last flare was my knees feet hands and I couldn't walk couldn't bend and the most embarrassing was I couldn't pull my own trousers up or down to got toilet lucky I was at home not work my family support me so much but I'm 40 and feel so ill xx
it's so hard when you have to contemplate giving up a job you love isn't it? Good wishes to you xxx
The other day, the position it took to wipe after peeing hurt like hell. Scary, what if I get to the point where I can't wipe. But then RA wondered back to my wrist after a while and now the fingers on my hand are at that normal level of ache and pain. I take that as a win!
I find saying "I'm as well as can be expected" gives them an answer that doesn't say "I'm fine".
Or when THEY say "You look well!" (when I've just upped my steroids) - I say "I always do with extra steroids".
Practice some answers that suit you - so that you don't feel that you are covering up how you feel, but not overloading someone who doesn't actually want to hear how awful you're feeling.
Hi girl 1969 I totally understand how you are feeling. It is too easy to feel like a disease and not a person with this crappy illness even loved ones treat you like you would break if they touched you. I went to see my gp who put me on a very mild anti depressants citalopram 10mg and it works a treat. I am also on biologics therapy now for my ra so much better controlled. You will get there it’s a matter of being on the right meds but talk to your gp because it could be that you are slightly depressed and gosh who would blame any of us. I’m 99% better since starting them they take about a month to work. I would say they made me feel human and in control again x good luck
Thank you, and I’m glad things have improved for you. I have had mild depression before, but don’t recognise this as depression, more like panic!
In that case you may need an anti-anxiety pill! 
There's always another pill to help. And really, what's one more pill. I have a dresser drawer of 'em.
Hi girli1969 - Most of us have gone through the same or similar things with these diseases. I am very frustrated these days with my newish tendency to drop half of the things I pick up - not heavy things mind you - just things like papers, stamps, small items. Very annoying.
It IS very scary and for many of us it does not feel like we will ever stop or hit remission, but we frequently do. That does not mean no disease and no medication by the way, but means that we are stable and reasonably high functioning. Please do not give up hope. Get back to your doc and take your list of concerns with you. 48 is far too young to give up, especially when you love your job. There may be things they have not done that they can to help.
A couple of things that might help your hands are a pain control gel or lotion - Like Voltaren, or I make a lotion that has about eight different essential oils and while it doesn't last as long as the commercial products (in terms of pain control), it works quickly and smells good too. Let me know if you would like the recipe. The other thing that might help strengthen your hands, and help control some of the pain is either compression gloves or using some KT tape. I use the tape across my thumb joint and wrist by the thumb and it is amazing how much support it offers. It may be enough to allow you use your hands with much less pain, and they last 3 - 4 days once applied, even through showers and hand washing.
Please keep a log of your symptoms and take pictures of swelling, rashes or whatever you have problems with as well as how itchy or much pain you are in, maybe what you ate before the flare, or if something emotional happened, etc., and take that with you when you to your doctor again. All of those will help show any patterns you might have going on. Best of luck and please let us know how you are doing.
Good advice, thank you. I have a thumb splint from OT, but I’m reluctant to wear it at work, firstly because I know some people would see it as attention seeking, and also the children would constantly question me about it, but from a more practical point of view my hands are in and out of water etc all day long so just not practical. I have got it on now I’m home mind you!
Thank you, I think it helps to know others are in the same boat. If I’m honest, I know I try and keep it quiet at work as everyone thinks they ‘know’ about ‘arthritis’..... I think you all know what I mean!
Oh yeah, It's just arthritis. I always tell them that RA is a little different. It attacks the Synovium and actually eats the bones. If they have more questions I answer them. If not then it does shut them up.
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