alison-r

Oh for a good nights sleep!!

Feels like my get up and go has got up and gone. Cant say im in agony but even pain score 6 (my RA nurse wants me to score it from 1 - 10 with 1 being lowest pain level) constantly just grinds you down.

Don't want to go for steroid jab just yet as a) want to save it until I really need it and b) feel as though I've failed when I have one. How stupid is that!!

Struggling to turn taps on and off, open ring pulls, open jars etc etc, all the things I used to take for granted before this bloody disease. Yes I get depressed, yes I get angry and yes sometimes I feel totally useless and exhausted.

I'm going to give myself a kick up the backside now and tell my brain to inform my aching body to get up and do something. Its never worked before, but theres a first time for everything!!

13 Replies

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  • Hi Alison

    I really don't know how you are keeping going. I know I am getting on a bit (55 strangely enough!) but I have always been fairly fit and worked hard. Until this blooding disease got the better of me in the farming department!

    I keep thinking, right I am feeling better now getting stronger, and try and do a bit before I overdo it, but I know I have to give in. Well it's not giving in, just adjusting. I sometimes think if I had kept going and gone out to work everyday I wouldn't feel as weak and useless.. But I know that is not true. It was the working hard and every day and trying to keep going that caused the depression, which then makes everything else seem ten times worse.

    You will work things out, but please look after yourself.

    Oh, And that blooming ram of ours is getting the sack. As we speak I can see about 6 or 7 ewes around him waiting for service and all he is doing is sniffing!!!! Going to change him over useless blooming thing!

    Take care

    Julie xx

  • OH dear Alison you do sound fed up!

    BUt trust me your not alone in feeling like this I often get days like your having too often sometimes.

    Have you ever tried using the nras helpline when you feel like this I've found them so helpfull.

    Hope you feel better soon and try not to kick yourself to hard!

    Take care

    Julie x X

  • Hi Alison-r. So sorry you are feeling so rough. It sounds to me as if the time has come for that little old steroid injection - the danger of keeping going without help, is that you are increasing the likelihood of damage to your joints.

    My Rheumy nurses use the same pain score of 1 - 10 and also a score as to how you are feeling on that day also from 1 - 10. If you have a pain score of 6 then I think you need some additional help.

    It is all very well giving yourself a mental kick up the backside (I know I've done it myself on the pull myself together line), but it doesn't work when you are in pain as that is something over which you have little or no control.

    I usually tend to wait until I am so bad that I have to have a steroid injection and I do wonder if I had admitted defeat and gone earlier, if I would not have ended up so ill and in so much pain.

    Suggest you see your GP/Consultant/Rheumy Nurse and get some help - no point in being a martyr. You just make yourself worse. Help is out there to be used. So go for it. Hope you feel better soon. LavendarLady xx

  • Hi alison, your not alone. I think the taps get to me the most. Also I had a row with a tin of custard and threw it at the wall after struggling to open it. My mum came home to half open bent tin of custard over the floor and up the wall. I just totally lost it. What I've realised is it's ok to loose it every now and then. You need to reach rock bottom before you can build yourself back up again otherwise you just have the anger and depression in the background. Cry scream shout stick pins In pictures of people doing excerises what ever makes you feel better. :-) Once yove done that dust yourself of. Look in the mirror and say that's it. When you feel better in yourself you can make the decisions about the your injection.

    Hope your doing good and ok.

    Marnie x

  • marnie, i've just had delivered a betterware book. 1,jar & bottle opener, 99p 2,3in1 opener, £3.49 3,hands free can opener, £15,99, mind you, you might get this cheaper elsewhere. 4, lid opener £7.99. Hope this helps. Taps can be got at b&g or homebase, they are easy to change too.

    Sylvia. xx

  • Also I forgot to say I right my pain score 1-10 on my calendar and take it to the consultant so he can see my numbers and I dont have to remember them x

  • Dear Alison.. my real name is Alison also.. but I used the assumed name of summer for a degree of professional anomimity!.. my own blogs are locked usually ie only visible to this sites members!.. Yes dont be afraid of having the steroid injection you should feel a lot better.. opening things. is a bind.. there is a thing called a 6 in 1 opener it is brilliant, well I was shown one by an OT , but it is always out of stock.// well on the boots website which she told me is the cheapest place!. I have a battery operated jar opener. you can get these from various places including the larger super markets!. they do battery/ elec tin openers too!.. the 6 in one device does bottle tops and ring pulls but havent managed to get one yet!

    ..

    Take all drug help available! do not suffer more than you have too

    Welcome

    And best Wishes

    Summer (Alison B)

  • Hi Alison, leaving the steroid injection to late may not be a good thing, your leaving it until you feel you want it and I understand that. But, by doing this the inflammation gets more and more out of control and one steroid injection may not do the job it could have done earlier. Basically your giving the steroid more work to do! Hope that's make's sense.

    Frustration is a very big part of RA, we feel angry as we can't do the things we once could and it doesn't seem fair.

    Like Summer above said there are lot's of gadgets you can get to help. The JML ones are good too for opening tins and jars etc no force needed.

    I still get frustrated now at certain things, not often but it does happen, after all were only human.

    Pain and stiffness are the hardest thing to deal with, every time you move or do something it stops you. You can't fight it though it fights back harder, you have to listen to your body, and rest if you have to.

    You will learn as times goes on, and you will learn to accept the disease too.

    Don't give yourself such a hard time, the RA is doing that without you doing it yourself.

    Take care

    mand xx

  • I'm so grateful to you all for replying. I shouldn't get down but I thought I could beat this thing with willpower. My RA nurse says if I say it hurts it hurts (being a farmer, Julie will know what I mean). I have to go to hospital with someone on thursday who is having laser eye treatment (my ex partner) for a diabetic condition. I'll have my blood test there and then go to docs on friday for steroid jab (don't want the steroid to mask my bloods). Another problem is I cant drive at the moment because of the pain - so my mum will drive - now thats really scary.

    Thank you all once again

  • Forgot to say, going to bed now with a hot water bottle and a warm kitten. All our cats are neutered so where do these guys come from. We caught her on friday with a trap loaned from the local gamekeeper. She was just skin and bone and very scared. But, boy, has she got her paws under the table now. Thanks again you guys.

    Love Al

  • Hi Alison -r loved the story about the kitten. Sounds as if she has well settled in. Hope you are feeling a bit better now. Willpower is all very well but there are times you have to have extra help. We all try to struggle on when in pain and boy do we know what pain means. Sometimes we just have to admit defeat and get help. Hope all goes well for you. Love Lavendarlady xx

  • Hello Alison, Its sh"t having ra isn't it. My answer to some of your problems, change the taps to the ones that you just flip over, much better. We have had to have these done on all our sinks and bath. Custard, get a electric can opener, much easier. Cans, in either the betterware or kleeneze book, you'll find a gadget for pull cans very usuful, let me know if you can't get one and i'll order it for you. Jars, are the same only these its a big hard plastic ringy thing that you put round the lid abd then it makes it easier to open.

    I have to say you made me laugh when you wrote about throwing the custard tin, reminds me of myself, thats just the sort of thing i do even now, because everything still seems to go through my fingers.

    Take care

    Love Sylvia. xx

  • kittens are so great I got my youngest cat as a kitten when i was first diagnosed they are a good distraction and great company

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