Hi - a new post full of frustration!!

louise38
louise38 Member Posts: 18
edited 4. Aug 2010, 12:12 in Say Hello Archive
Hi everyone!

Firstly I'd like to thank Arthritis care for this forum. Without you I'd be lost!!

A bit about me:

I was diagnosed (finally) in 2007 after a bad flare up in my wrists which meant I couldn't fill the kettle or lift a cup! I was put on anti inflammatory drugs when needed, but they didnt work as I can only take a few before my stomach complains. In 2009 I was put on Hydroxychloraquine and after 3 months changed to Sulflazine but had an allergic reaction so I was taken off everything and ironically my Rheumatologist left the hospital! So I moved to a local clinic, and they are fantastic. I am now on Methotrexate (15mg weekly) and Folic Acid (5mg daily). They were working well until recently when I had a virus which left me so drained and then the pain was back!

My frustration, like many others, is I cant do what I want! I am 38 and have always been a very active and independent person in the way that I do everything in the house, decorating, plumbing, flooring, re-tiling etc etc and now I can't.

I was a HR Manager and PA until February when I decided I couldn't carry on with the stress of working from 8.30 - 6.30 daily and bringing up 3 kids and having a husband who is a newsagent 7 days a week from 5am until 7.30pm. I have had to be a mum, step mum, dad, cook, cleaner and chief bottle washer for 20 years! So I gave up work to help in the shop from 5am until 11am ish daily with the occasional early Saturday, but I cant even do that some days.

I know I am lucky because I am mobile (most days) and I my children are older (18, 16 and 14) but I feel as if my life has been taken over. I don't go out because of the fatigue. I come home from work and go to bed until I have to get up to make tea. Then I go back to bed and have hot flushes (menopause!!) so its always after midnight that I get to sleep and I am so tired, then awake at 5am to start all over!

I also, believe it or not, hate moaning! But all I seem to do is moan, if its not the pain in the fatigue. I've stopped talking to my friends cos all I do is moan!!

Moan over (for now!!)

What does everyone else do about the frustration - do you just give in and accept it or fight it! Any ideas would be greatly appreciated.

Thanks for reading!

Louise xxx :oops:

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Arthritis means that a huge adjustment has to take place, not only in what one can and cannot do but also in how one approaches life. Put simply, I don't think that you can maintain that level of energy output - your body needs rest. It is the most frustrating thing about these conditions, but if you continue to over-do it, then the arthritis will stay active as your body has no recovery time. My PA (psoriatic arthritis) has flared badly since Thursday, the result being my spending most of the day in bed, asleep. I know from past experience that if I force myself to do things I just prolong the agony - it's not worth it! Now I listen to what my body says it needs - and that was sleep. Having slept, today I feel slightly brighter. I have also spent the last three years battling the menopause too, I know what that's like! Ease up on the activites, delegation is a useful skill and make sure you get plenty of rest. Dreamdaisy.
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    first thing is stop being so hard on your self you have done so much for so long if the pots do not get done straight away no one but you will notice nine times out of ten mine do not even notice if i iron there clothes so look at what you do and change your prioritys it you first from now on do your meds need sorting ????? but it takes a lot of getting your head around it so give it a while and remember we are here for you good luck val
  • louise38
    louise38 Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks Val and DaisyDream,

    I am too hard on myself and yes no one notices the dishes or ironing piling up but me. Kids hey!

    My meds do need sorting and so do I and I understand its going to take time but RA is so frustrating. I dont know how you guys stay positive you must be stars!

    Lxxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Louise and welcome to the forum!
    Please know that you are not alone with all this and the frustration really is a big part of arthritis. We all have different ways of dealing with the pain and fatigue – sometimes we find we can fight it, other times we just want to give in and weep! I have found that, by chatting on the forum, I am able to do some of my sharing with the lovely peeps on here which means that I can perhaps reduce some of the emotional burden on my lovely husband. And like you, I have found myself in tears when talking with my friends too often and then feel I am not good company and it can be very isolating.
    On a practical note, as DD and Val have said, prioritising what you can do and pacing yourself is vital and, although as a naturally very active person, you might feel as if you are giving in, in actual fact you are just giving yourself the best chance to cope. It also sounds as if the metho etc are not doing enough for you at the moment, so a review of your meds is probably needed.
    In terms of the hot-flushes, you might be interested to read my recent post on the Living with Arthritis forum entitled “hot flush miracle” – at least now it is “only” my joints disturbing my sleep and that has made a huge difference. Perhaps it might work for you too?
    Thinking of you.
    Love Tilly x
  • frogmorton
    frogmorton Member Posts: 28,053
    edited 30. Nov -1, 00:00
    Hi Louise

    Moan here moan to us - we can take it then we can moan back :wink:

    Friends and family get a rest too :wink: you can chat nice stuff to them - the REAL friends actually care too.

    I hope there is something whisch can be done meds wise to pick you up a weee bit more. if teh pain is better and it's only (ONLY?????) the tiredness getting to you now?

    It is good to meet you Louise

    Hope to see you around some more

    Love Toni xx
  • louise38
    louise38 Member Posts: 18
    edited 30. Nov -1, 00:00
    Thank so much for your wishes.

    I rang the clinic today and I have an appointment with a consultant for tomorrow night. The nurse suggested another steroid injection in my butt!! Stings like mad but worth it!

    I've tried leaving the dishes but its soooo hard... As for the ironing I might have to send it out cos its taking over the place! My daughter is an angel she's 18 but will make tea and shout at the other 2 for me! hehe.

    My ankle swelled up yesterday (not had that before) and I walking like a numpty!! Its gone down today but doesnt feel like it belongs to me!

    I'm going to have a chit chat now! Thanks again!

    Lxx
  • louise38
    louise38 Member Posts: 18
    edited 30. Nov -1, 00:00
    Tilly,

    I've ordered the book! It should arrive today. Thanks for the tip! I'm coming back as a cat with a good home next time!!

    Lxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Louise

    So glad you have ordered the book. Really hope it helps you as much as it has me. I found that chaniging my eating habits was really hard at first, because I was comfort eating big-time because I felt so rotten (bones and menopause). But it was sooo worth it. And if you need any more info/support and encouragement along the way from a fellow traveller, please do feel free to send me a personal message. Good Luck!

    And good luck too with your consultant's appointment this evening.

    Love Tilly x

    PS - I think coming back as a cat is a great idea!!
  • louise38
    louise38 Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks Tilly,

    It would have to be a neutered cat though, although the gestation period is only short but I dont think I could give them up after 8 weeks!!

    I dont have a eating habit. I have breakfast at 8am then go home at 12.00 fall asleep until 4.00 and eat at 7.30. Not good! I must try to eat properly! Probably will when the kids go back to college, then at least I'll know what food is in the fridge!!

    Lxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Louise - quite agree, I couldn't give them up after 8 weeks either!

    Oh dear, your eating is worse than mine was, but in the opposite way!
    If you decide to try the diet - best of luck! Love Tilly x

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