flare up again!!! another struggle!

psyart
psyart Member Posts: 600
edited 7. Sep 2010, 09:03 in Living with Arthritis archive
Hi

have been doing pretty well - just about coping with the pain all day and every day :cry: :!:. Fatigue comes but after some sleep goes away again :!:

but today I just feel so un well :cry: . I slept well all night and then woke up feeling poorly so had cup tea and stayed in bed. So slept from 9am till 12pm :!: :!:

Can someone tell me why I am finding it so hard to accept that sometimes I have to give in :?: . have been up since 1pm and just walking around doing little things as feel so guilty about just sitting down and doing nothing :oops: . I know that I have psoriatic arthritis - am coming to terms with that as has been 4 years now but have now been told I have Fibromyalgia :cry: . Then next week I have to have a hearing aid fitted as have tinnitus :!: :!:

I suppose I'm asking how do people continue to battle everyday :?: Feeling sorry - NO :!: Angry with myself for not seeing what is in front of my face :!: Because I am not accepting it as it is am I doing more damage :?: Or is it because I am feeling so low that more things get to me :?:
Hope you all are enjoying the good weather and feeling ok?? Sorry for only seeming to do topics when down :oops:

Louise xxx
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Comments

  • daylily
    daylily Member Posts: 619
    edited 30. Nov -1, 00:00
    psyart wrote:
    Hi

    have been doing pretty well - just about coping with the pain all day and every day :cry: :!:. Fatigue comes but after some sleep goes away again :!:

    but today I just feel so un well :cry: . I slept well all night and then woke up feeling poorly so had cup tea and stayed in bed. So slept from 9am till 12pm :!: :!:

    Can someone tell me why I am finding it so hard to accept that sometimes I have to give in :?: . have been up since 1pm and just walking around doing little things as feel so guilty about just sitting down and doing nothing :oops: . I know that I have psoriatic arthritis - am coming to terms with that as has been 4 years now but have now been told I have Fibromyalgia :cry: . Then next week I have to have a hearing aid fitted as have tinnitus :!: :!:

    I suppose I'm asking how do people continue to battle everyday :?: Feeling sorry - NO :!: Angry with myself for not seeing what is in front of my face :!: Because I am not accepting it as it is am I doing more damage :?: Or is it because I am feeling so low that more things get to me :?:
    Hope you all are enjoying the good weather and feeling ok?? Sorry for only seeming to do topics when down :oops:

    Louise xxx
    Bless you. I do hope you get better soon.Don't worry about only posting when down, that's what these forums are for- to listen when no one else will. Wrap up warm with a good cuppa and relax. thinking of you.xxanne
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Louise,

    Sorry your having a bad day flower and sending a (((( )))) and a hope you will soon feel a lot better.

    I think its a combination of all those things you know. Its something that you will find your own way through in time but I know it doesn't seem like it just now.

    To have the fibro thrown at you will have made it harder but it will get better and the flare thing, hopefully that will also stop soon for you.

    I really hope you are sitting down and not being too hard on your self flower. Least the sun is out still cus that's kinda better really than the grey gloom. Sending you another (((( )))) and a bucket of hopes. Cris xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh pysart, I am so sorry. It takes time to adjust, I'm 13 years down the line now and don't think about it any more, I just give in. I found that feeling guilty wasted too much energy that I didn't have and made me do stuff I shouldn't thus prolonging the flares so now I don't. I grind along at a snail's pace anyway, so stopping is no big deal. You will find your limits in time, learn to listen in time, and gracefully cede to it, in time. Don't be too hard on yourself. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • nanasue
    nanasue Member Posts: 465
    edited 30. Nov -1, 00:00
    Sorry to hear you are having such a bad time. We all go through these periods and it does take years to come to terms with an illness like this and also very hard to pace yourself and slow down, I still struggle with that and usually get told by my family when they think I'm doing too much. It's very frustrating isn't it ? At least you know the people on here have probably been through it and will understand if you want to have a bit of a moan and be thre to give you support when you need it. Sending you (((()))) hugs and hoping you start to feel a bit better soon.

    Love Sue x
  • frogmorton
    frogmorton Member Posts: 29,773
    edited 30. Nov -1, 00:00
    Hi louise

    Good to see you but sorry you are feeling shift at the mo :(

    I think it is a mixture of all things comspiring together that make you feeel you are not coping or in denial etc.

    You ARE run down and you ARE poorly at the mo.

    Who wouldnt try to forget bad times when they feel well?

    You are doing ok - don't beat yorself up.

    Look after yourself louise.

    Love

    Toni xx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Louise, so sorry you are feeling so horrible at the moment.

    Please don't beat yourself up about it all - you are trying to deal with a lot at the moment and, as DD says, the frustration just uses up energy you don't have.

    If you can, tell yourself firmly that, at the moment, you are not well, and, if you need to rest, so be it. If you can actually allow yourself to rest when you can, without fighting it, I'm sure you will start to find it easier to cope. Easier said than done I know, but it's perhaps a step towards coming to terms with your things.

    Thinking of you.

    Love Tilly x
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Oh, how I agree with Tilly! The minute you can feel easy about the need to rest when necessary is pretty much the minute of acceptance.

    If I am feeling low, I try to plan out small jobs (just little things like watering my houseplants) which I can cope with and list the bigger jobs in order of priority - as I feel better I try to do one a day.

    You will find your own way through the maze of feelings, but try to forget the guilty bit.....I did that thoroughly for years and let myself in for a lot of tears.......no one is at fault for not doing what they can't do.................

    Annie
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Louise,

    My friend has Tinnitus and I know it can really get you down. The aide should help though. Do hope so. You have been through a lot and it's not suprising that things get to you now and then.

    I have been off work today and managed to do the washing. Thats IT Nothing else. Guilt yes but more frustration than anything. But tomorrow is another day and maybe I can do more.
    Be kind to yourself,


    Lv, Ix
  • psyart
    psyart Member Posts: 600
    edited 30. Nov -1, 00:00
    Hi everyone.

    thanks for the support and great words of wisdom!! xx
    That is one thing with this site - because everyone understands then you know what it feels like and can give sound advice! For that I will always be grateful. xx

    I thought when i was diagnosed that I could adjust quite quickly but that is not so :( . I need some one to tell me sometimes that what I am feeling is the norm and I will adjust somewhere along the line :oops: . I suppose its when I have the flares that I find it harder to rest as feel I should be doing things, even little things. Then I do feel guilty as I cant do it :oops: . Part of the process :?: but I thought I had sussed it by now :cry:

    DD how long did it take you to adjust?

    Am still in pain but dont feel so horrid now but will see what I'm like in the morning - that is normally the worst time of the day :(

    A big thank you again and loads of hugs. I, Annie, Tilly, Toni, Sue, Anne, Cris and DD I really do appreciate your kind words and thoughts. xx

    And yes Cris the sunshine has helped :!: Sat out in it this pm for a good hour - makes me feel better. Shame its soon going away again :cry:

    Louise xxxxx
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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Strewth! That's a question and a half. I've got to go and get tea before I start trying to answer that one. Right, it's brewing. Ummmm - I think I realised back in the year 2000 that things were never going to be the same again. By then my left knee was humungous, docs were still telling me it would resolve itself and everything would be fine, but I didn't know enough then to challenge them. My knee was at least 24 inches round by then, my right knee was ten inches smaller, I looked as though a cauliflower had been wedged under my skin on that joint! I couldn't walk, I couldn't sit comfortably, my knee wouldn't bend, oh life was tricky. I felt better about it all after the first synovectomy in 2002, when they cleared out all the solidified and liquid gunk (synovial fluid) that had accumulated around that joint, and I felt so optimistic, but when it started swelling again six months later I knew it was all over. By then it had been 5 years of adjusting, but always with hope. Then it suddenly became about adjusting, but without hope, which is far better. You know where you stand, even tho I can't! Every day seems to take away a little more, well, that's arthritis, that's what it does, get on with it. I can pinpoint the month, August 2002.

    The one who can't accept it is The Husband. This irritates me so much. He keeps hoping for a huge improvement, that I'm going to lose the sticks, come off the drugs, feel better. Planet Bloke - what a wonderful place it is. Reality is never allowed to intrude. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • coco67
    coco67 Member Posts: 2,374
    edited 30. Nov -1, 00:00
    I hope you are feeling a bit better today, im also newly diagnosed and aint got my head around it, i still find myself swollowing extra pain killers and doing to much and then suffering big time for days after so we can do this journey to acceptance together.xx
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi louise

    hope you are feeling much better today and that you had a reasonable nights sleep. (not easy i know)

    sending hugs (((((()))))
    love juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Wise words, babycham. You've got it sorted. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Good. I am pleased it's a good day, hang on to the feeling! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Louise,

    Well the rain was bang on cue eh?! Still its dry at the min and is meant to be for a bit tomorrow...... I'm thinking of going down the Cape with a large set of bellows and blow it back into the Atlantic :lol:

    Hope your feeling a bit more okish today? Leaving you a (((( )))) and a bucket of hopes. Luv Cris xx
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
    Hi Louise

    Just adding to the good wishes here. Hope today is a better one for you and that you feel a bit brighter. Be nice to yourself. ((( )))
    take care.
    Chris
  • psyart
    psyart Member Posts: 600
    edited 30. Nov -1, 00:00
    Hi everyone.

    i was feeling better so went shopping and just been with OH to walk dogs so now feel very tired :cry: . yes I have done too much :oops:

    Cris - the rain came and went away again - but tomorrw is not looking good :!:

    DD - do you have PA? I do but not very much swelling with it. In the mornings my hands are slighty swollen but I dont get it anywhere else. Just pain :cry: - in my hands, ellbows, shoulders, knees and ankle :!: . Thank you for telling me as it is - I'm on the way I think :!: Its just the hope bit that I am still on :( I hope you managed to drink your cup tea :?:

    Coco67 - stick with this forum - it will help so much. I was diagnosed 4 years ago so you would think I was there by now but am not :oops:

    B/Cham - will try and follw your words of wisdom :!: luckly I have grown up kids so if not good they can help themselves - but getting it right is the hardest part :!:

    julipf and chris7 - thanks for the hugs - thanks to you all. It does make a difference when reading words of support xxxx

    Cris - I will join you and help with the bellows :) xx

    hope you are all having an ok day :?:

    Louise xxxx
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  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hello Louise,
    Great that you have been out and about. You sound alot brighter today.

    Hope your evening is a peaceful one and have a relaxing Sunday.
    Hugs,

    Lv, Ix
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Sorry psyart, I missed your question somehow. Yes I do, mostly the A, very little P. I used to have a huge amount of inflammation but the humira has knocked that on the head, CRP and ESR of 5 and 1 is about the norm now, and has been for over a year. My knees were always the worst affected and they still feel 'congested' but don't have the swelling - odd. Still in pain tho, despite the low figures. I hope you are feeling more breezy today. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • psyart
    psyart Member Posts: 600
    edited 30. Nov -1, 00:00
    Hi DD

    my imflamation markers are low but the pain is spreading :cry: .

    I am def breezey today as the wind is up and the rain has been nostop all morning :!:

    hope you are doing ok :?:

    have started to questions things again but not sure why :oops: :?: . I think that until I know what treatment I will be offered and if it works, I dont know what to do about other things - eg my teaching degree :?: and the part time job that I had before :?: I have had my head in the sand for a while now - hoping that something would happen that would tell me what to do :!: :oops: . I just dont know what is the right thing to do and that frightens me :cry:
    On top of the Pa and fibro and hearing aid I think that is why I have had head in sand :!: But it doensnt achieve anything :wink:

    Maybe Cris needs to blow the bellows over here to clear my cobwebs out :D

    take care everyone

    Louise xxxxx
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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My inflammation markers are tiny, the pain is not. I suppose the arthritis is suppressed but only to a certain extent: I still flare and I still hurt.

    You won't be able to get your head round other things in your life until your health is stabilised, somehow. It takes huge determination to forge on as tho nothing is happening/has happened and not everyone can do that. You need time to adjust and accept your new circumstances - until that happens, focus on one thing at a time. Get your health and meds sorted, then shift your focus to something else that needs attention. One thing at a time, one thing at a time. Be kind to yourself. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • psyart
    psyart Member Posts: 600
    edited 30. Nov -1, 00:00
    DD - I appreciate the reply - makes a lot of sense :!:
    I am going to me my tutor on wednesday so hopefully if I get support from them - which I have done in the past - then that will settle one thing :!:

    the next thing to learn is some patience :?: :?: not my stong point :wink:

    thanks again. hope you are doing ok?

    Louise xx
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  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Louise,

    That would be good if you could get things moving again on Wednesday. As you say it would be a good step forward for you.
    Be kind to yourself and above all keep the bellows going!!!! (Southwards if you do'nt mind).


    Lv, Ix
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
    Hi Louise

    You are doing ok there love, one day at a time. I can identify with the head in the sand and the being frightened for the future, but hope you take the time you need to get your treatment sorted first. I found that juggling worries like plates is just too exhausting. Do keep us updated when you can, we are on your side.
    take care. ((( )))
    Chris
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Louise,

    One set of bellows blowing at the cob webs. I am lucky I guess, do drekly all the time so head in the sanding isn't so much of a problem..... though I also have incorporated denial into my cope mechanism quite a bit and I promise you you will find your own way through it all.

    Small steps flower and hopefully as the treatments come together and start to offer real help you will feel a lot better as well.

    Now what are you doing sat there..... help me with these bellows cus we have to send it back to the States and not deflect it up country :lol::lol:

    You hang in there and keep posting. ((((( ))))) Cris xx
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