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RA really getting me down

Posted , 7 users are following.

AnnaDevs
AnnaDevs

Hi All 

I know i'm not the only one in this R.A boat but does anyone else feel that they have bouts of feeling really down (i'm not talking about anything major) but just generally upset alot of the time over little things and when you wake up in the mornings and know it's going to be a tough day and feel like i'm starting to let it beat me.  Everything I do is such hard work and I am finding it extremely difficult learning that I can't do things as quick or as well as I used to be able to.  I was diagnosed 3 years ago and think I possibly ignored the symptoms when they were relatively mild and just haven't come to terms with having to live with this.  Some days I just get on with it but am feeling like i've been beaten by it more often than not these days. It didn't initially sink in that this is forever! Any suggestions for coping?

0 likes, 14 replies

14 Replies

  • slm222
    slm222 AnnaDevs

    Posted

    Definitely feeling really down lately Anna and I totally understand your feelings. The past 2 weeks have been especially bad. I am 50 and assume it's a combination of the RA and menopause, but the despair has been awful. Glad I'm not the only one. Hang in there, and I'll try & do the same. smile
    • AnnaDevs
      AnnaDevs slm222

      Posted

      Thanks Sue.  I'm 36 and always used to go to the gym and be really active and I think it's possibly the feel good factor that i'm not getting anymore -it's about all I can do to get up and get dressed somedays.  Although it's horrible to hear that someone else is feeling down too, it is good to feel that yo're not alone. You're definately right though - keep on smiling :-) 
    • Tricia55
      Tricia55 AnnaDevs

      Posted

      Hi Anna, I know exactly how your feeling, I too used to be very active and find that I really have to push myself to do any form of activity these days, I especially find the winter months the worst.

      I think it's because my RA doesn't like the cold and hence it more painfull during the winter.

      I think this forum is wonderful as it helps us all to realise we're not struggling through this on our own, that there are other people out there who are in the same boat as us.

      Anyway nice to meet you and hope to keep chatting.

  • beckithered330
    beckithered330 AnnaDevs

    Posted

    Hey Anna! You might not remember me but we have spoken a few times! I'm the same as you, I suffer with depression and anxiety so I know it can be really hard to get your head out the sand some days.. I know I struggle to stand up some days with my RA so I know how you feel.. My advice would be to find something to take your mind off it that you can really focus in on.. I found listening to jazz big band music can zone you out and make you feel a bit better, it's worked for me over the last few days and has helped me really concentrate on the stuff I have to do.. Also reading poetry and stuff that's a bit different is really nice, nothing too long, just short ones.. You could maybe try doing some puzzles or something, just try and re-focus yourself on your surroundings and the tasks at hand or on your breathing if you feel really bad.. It will take your mind off it and re-focus you back onto what you should be doing:-) I know there is days where you nothing works, but just try and re focus:-) hope this has helped a little! Becki:-) x x x
    • AnnaDevs
      AnnaDevs beckithered330

      Posted

      Hi Becki - yes I remember you :-) Thanks for the good advice, I think I do need to focus on something else rather than what I can't do anymore.  I love being around animals (and i'm doing that course) and I do find that they take my mind off what is going on but then i'm wondering if that is just me ignoring what is happening to me. It's really difficult to get your head around it and that life has changed forever (sounds dramatic, I know, but it's true!)  When I feel down, is usually when i'm not around anyone else so, I will definately try the technique of listening to music - that sounds good to me and hopfully will take my mind off things for a while! Thanks Becki :-) xxx
    • beckithered330
      beckithered330 AnnaDevs

      Posted

      Any time my dear!! I am the same, when I'm not with anyone I start feeling low.. A lot lower than I am normally, but my counciller is helping me to refocus when I worry, just on what's going on around me so that I can get back on task.. I really hope it gets a bit easier.. It's just about finding what helps you feel that bit better:-) xxx
  • frances85589
    frances85589 AnnaDevs

    Posted

    So so sorry you feeling bad.Think we all have off days that lead into weeks! This RA is crap.I just want my old life back but know that cant be.I feel sucidal some days but I know I wouldnt do anything it just makes you feel so low.I could go on and on but thats not helping you.When I can a short walk helps bring my mood back up .I always think theres someone worse than me so that gives me a kick up the bum to get on.Talking on the phone to my sisters also helps.Thinking of you Anna
  • Light
    Light AnnaDevs

    Posted

    Yes, I do so sympathise. We have to re-learn so much of our lives with this illness. and sometimes the toughest part is the people around us, who so often fail to understand and see how much we're hurting.

    For anyone really wanting to tackle not just the pain but the way it makes us feel inside when your entire life seems to be upended, I recommend meditation.

    Meditation reaches "parts of us other techniques don't reach"! 

    What I mean is, it confronts both our physical pain (we become less identified with it) and our mental and emotional state (we become more even-handed, more joyous, more relaxed with what life has brought us).

    But it does take application and dedication. It doesn't bring quick results.... it's really a longtime work that can totally change your life around.

  • VictoriaM84
    VictoriaM84 AnnaDevs

    Posted

    Hi Anna,

    Yeah I definitely feel like that. Most days I try to stay positive and think that it could be worse but on other days it's a case of 'why me?'.  Small thing's tend to become big things; yesterday I couldn't open a bottle of bleach and because I refused to let it beat me I didn't ask my boyfriend to help me at first, so I was in pain with my hands, in a huff with myself and I had a go at my boyfriend for no reason.  Of course I got over it, he opened the bleach and I got on with bleaching the sink but it's things like that that really get to me. I often think if I can't even open a bottle or open a bag of sweets etc at the age of 30 then what is the point?! It's like you say this is forever and it's hard to admit that! When I'm not suffering a flare up and everything is fine, I don't even give RA a second thought....So I totally understand where you are coming from, It's nice (in a way) to hear I'm not the only who feels like i'm losing hope at times as my friends and family really don't understand......last week my sister actually rolled her eyes when I said I couldn't kneel down on the floor......if only they knew haha

    Take care :-)

    • Tricia55
      Tricia55 VictoriaM84

      Posted

      Hi Victoria,

      I think the a lot of the trouble is that friends and family hear us moan such a lot about pain, my daughter actually said to me once but mum your always in pain stop going on about it......I think they become blase (not spelt right) but you know what I mean.

      I also get days when I think oh! why me, then I get annoyed with myself as I think yes, I know there are people worse off than me and yes, I should be grateful for all the things I can do, but when your in pain at that point you really can't see past the pain and it can be so draining.

      It's simple things like changing the bed I find trying to lift the mattress to tuck the bottom sheet under an absolute nightmare.

      I find that after a time I just don't tell my friends just how sore I am as I have lost people whom I thought were friends because of how I have felt, but then again I always say if you don't want to know how I am don't ask.

      Yes, I have good days, but I also have horrendous days which drive me to distraction.

      I don't know if you have read on another post that I have started acupuncture from a doctor at my clinic, he was very nice and so far I haven't had any pain in my back since last Wednesday, although the rest of my body is making up for it, but oh my back is in heaven just now, just hoping it lasts a lot longer, I have to go back on the 2nd March for my next session and am hoping it really helps my arms this time.

      Sorry I've kind of rambled on here. 

    • VictoriaM84
      VictoriaM84 Tricia55

      Posted

      No sorry required Tricia, no rambling haha :-)

      You're totally right about them becoming blase, it's as if now that we are on medication then all of our problems are solved – if only!  

      I've used "if you don't want to know, don't ask" because at times I just lose the plot with how inconsiderate people can be! 

      My boyfriend is more understanding these days as he's done some research but my friends & family haven’t to my knowledge so I try not to talk about it.

      I'm with you on the nightmare of changing the bedding and it's pretty much everyday things people without RA take for granted as I'm sure you know – the bad days are so consuming like you say!

      I’m probably my own worst enemy at times too because I can be quite stubborn about things; I often refuse to ask for help as I feel like a burden asking people to do things that I should be able to do.  I worry all the time that if I can’t do things now imagine what I’ll be like in 30 years time?! It’s a worry I try to push away as soon as it comes.

      Anyway, I’m the one rambling now haha – I’ll definitely look into acupuncture.  It's great that it's helped with your back pain, I'll keep my fingers crossed it helps with your arms. I don’t suffer with RA in my back thankfully; it’s in my neck, shoulders, elbows, hands, knees, ankles & feet (basically every joint) and I also have joint hypermobility but I’m trying to be positive because up until the Winter hit us I was pain free most days with only the odd day here and there of flare ups…..roll on the Summer!!

      Thanks for replying, it means a lot!

    • frances85589
      frances85589 Tricia55

      Posted

      Hi Tricia.. Had to smile when you mentioned not being able to lift the mattress to tuck sheet under.My husband is s gem and does just about all in house which makes me feel so guilty.When he was out the other day I thought I would try clean sheeting bed.No way could I lift mattress so I layed on my back and tried pulling sheet through wooden slats of base.absolute agony and on each side I layed for ages on the floor.My back was killing me afterwards as were my hands.How useless it makes you feel.My biggest pain is that my children dont visit very often as I can no longer hold a child let alone look after one for the day.
  • joan69322
    joan69322 AnnaDevs

    Posted

    I can also sympathise with you all.  Some days a little effort is too much.  Changing bedding this morning was such a chore and I only do a few chores a day now.  I am not on any meds except taking paracetemol when I know I will have to do more than normal, ie walking into town, extra housework.  Also yes, somedays I could cry for the days when things were normal.  I know folk a lot worse off than me so I focus on that thought too.  All the best to RA sufferers.
  • AnnaDevs
    AnnaDevs

    Posted

    I am SO grateful to everyone for your replies.  It has made me laugh a little at some of the comments such as mattresses and bleach bottles!! Everything you were all saying are things that I really find difficulty with whch people without RA just do not understand!  Most days are a real struggle but yes, we just have to take a step back and laugh at what lengths we go to to get a job done.....thank goodness we are doing these things in our own homes and other people can't see what we are doing!!! :-) Only the other day, I had 3 bottles of squash in my fridge and I didn't want a glass of water.... I wanted squash.  I tried to open each bottle in turn and failed.... even with the gadget I have.  Then there was a bottle of wine.....I just thought, "sod it, i'll try and open that!" AND I MANAGED IT!!! some friends are laughing saying it is all in my mind but I think the truth is that it was a metal cap and the squash had plastic caps.  But it was only 1pm in the afternoon.  So I ended up having 2 glasses of wine and watching a nice chick flick (I did have the day off work :-)) I actually turned a really frustrating situation into a nice afternoon!  Thanks again for all of your replies, they have really helped me and It's nice to hear that i'm not alone in all of these day to day situations. Take care all xxx
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