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    • hileena111
      hileena111 Member Posts: 7,099
      edited 30. Nov -0001, 00:00
      Yes...go for that blue badge....I've got mine and although I dont use it all the time it is great

      Love
      Hileena
    • coco67
      coco67 Member Posts: 2,374
      edited 30. Nov -0001, 00:00
      Sending you {{{{hugs}}}} as i dont know what else to say xxxx
    • tonesp
      tonesp Member Posts: 844
      edited 30. Nov -0001, 00:00
      This is my twopennyworth for what it is worth.Most people on this forum have lively active minds and were formerly active people I think that there is a lot of frustration here as we cannot do what we want to do or what we used to do.We should scream a bit cos if ,we don't let it out it will boil up inside us and drive us crackers :x
    • hileena111
      hileena111 Member Posts: 7,099
      edited 30. Nov -0001, 00:00
      Yes......the brain says do one thing but the body disagrees with it LOL

      Love
      Hileena
    • dreamdaisy
      dreamdaisy Member Posts: 31,520
      edited 30. Nov -0001, 00:00
      Morning, stlucia. I hope you had some decent rest over the week end. Good luck for this week - pace yourself! DD
      Have you got the despatches? No, I always walk like this. Eddie Braben
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      Hello,

      Thanks for your message. I've only just logged in and saw it from yesterday. Oh dear, I have over done it big time. I've just burst into tears - I can't cope with everything. The arthur has always been in every joint but I feel so poorly now with it. I just don't know what to do. I just feel so so sad.

      How was your day?

      x
    • dreamdaisy
      dreamdaisy Member Posts: 31,520
      edited 30. Nov -0001, 00:00
      One of the hardest things to do is learning to pace yourself: it is a steep learning curve too. You will master it in due course, of that I have no doubt. My day has been hellish 'cos I couldn't be bothered to fight it all today. Hopefully I'll get some grit back tomorrow. You rest now, do as little as you can - even go to bed with a good book. I hope you have a good night's sleep and that tomorrow goes well. Be kind to yourself, give yourself time to adjust. DD
      Have you got the despatches? No, I always walk like this. Eddie Braben
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      dreamdaisy wrote:
      One of the hardest things to do is learning to pace yourself: it is a steep learning curve too. You will master it in due course, of that I have no doubt. My day has been hellish 'cos I couldn't be bothered to fight it all today. Hopefully I'll get some grit back tomorrow. You rest now, do as little as you can - even go to bed with a good book. I hope you have a good night's sleep and that tomorrow goes well. Be kind to yourself, give yourself time to adjust. DD

      Thanks so much, you would think I would have learnt by now - I've had this ridiculously stupid disease for 11 years. I just can't fight any longer. Am seriously fed up and just want to give up. It hurts more than it's ever hurt and it's getting near unbearable even when I am resting. Trying to do anything is just a no go this evening.
      Sorry for moaning
      I'm so sorry that you have had a rubbish day - I really hope that tomorrow is a better day. Have you got rain too?
    • marion1952
      marion1952 Member Posts: 963
      edited 30. Nov -0001, 00:00
      Hello stlucia

      I'm really sorry to read that you're suffering so much at the moment.. What can be done?? Would a steriod jab help??

      Please take care.

      Marion x
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      marion1952 wrote:
      Hello stlucia

      I'm really sorry to read that you're suffering so much at the moment.. What can be done?? Would a steriod jab help??

      Please take care.

      Marion x

      Thank you so much for the reply. Am feeling in such a state and keep crying....even after chocolate!!! I had a steroid jab and it didn't work. Everything is so swollen that it hurts to type, sit, move, lie down. I just want my mum!! :cry:
    • ironic
      ironic Member Posts: 2,361
      edited 30. Nov -0001, 00:00
      Not the same but here's a hug(((( ))).
      You have had a very busy week and then visitors so it really is no wonder you are feeling so down.
      A good cry now and then is not a bad thing. Maybe your asking to much of yourself. Switch off if you can, go and watch some daft repeat on the telly or get some music on.
      Feet up, comfort drink.
      Have you got some good anti inflam gel?

      Lv, Ix
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      ironic wrote:
      Not the same but here's a hug(((( ))).
      You have had a very busy week and then visitors so it really is no wonder you are feeling so down.
      A good cry now and then is not a bad thing. Maybe your asking to much of yourself. Switch off if you can, go and watch some daft repeat on the telly or get some music on.
      Feet up, comfort drink.
      Have you got some good anti inflam gel?

      Lv, Ix

      Thanks loads, I've got a bar of chocolate - does that work better than anti inflammatory gel?! I never found that worked for me - ive got ibuleve... maybe i ought to try it again.

      I think you might be right, I tend to always expect that I can do the same as other people. And then I'm surprised when I can't do it. When will I learn?
      I'm watching some awful TV!

      x
    • ironic
      ironic Member Posts: 2,361
      edited 30. Nov -0001, 00:00
      Oh Good Girl :lol::lol: Awful TV and chocolate sounds good to me.

      To be honest dont you think that anyone would be shattered going back to work? I always remember my first week at work when I left school. Came home every night and fell asleep. I was only 15 so should have had the get up and go. :shock:
      I really do think that you have done extremely well to manage so much.

      Here's an apple for the teacher. :D

      Lv, Ix
    • dreamdaisy
      dreamdaisy Member Posts: 31,520
      edited 30. Nov -0001, 00:00
      It does take time, stlucia. It's ridiculously easy to forget just how tiring doing nothing can be, let alone trying to do everything. Take care, I'll check in later on tomorrow and see how you are doing. DD

      I forgot - yes, rain and wind but thankfully the wind is confined to outdoors!
      Have you got the despatches? No, I always walk like this. Eddie Braben
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      ironic wrote:
      Oh Good Girl :lol::lol: Awful TV and chocolate sounds good to me.

      To be honest dont you think that anyone would be shattered going back to work? I always remember my first week at work when I left school. Came home every night and fell asleep. I was only 15 so should have had the get up and go. :shock:
      I really do think that you have done extremely well to manage so much.

      Here's an apple for the teacher. :D

      Lv, Ix

      The apple was very much enjoyed - thanks - a nice crispy one :D
      You are totally right, I'm expecting too much and just upset due to the pain and once I've got sleep I'm sure things will seem so much better.
      How are you?
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      dreamdaisy wrote:
      It does take time, stlucia. It's ridiculously easy to forget just how tiring doing nothing can be, let alone trying to do everything. Take care, I'll check in later on tomorrow and see how you are doing. DD

      I forgot - yes, rain and wind but thankfully the wind is confined to outdoors!

      :D Thanks so much. x
    • tkachev
      tkachev Member Posts: 8,332
      edited 30. Nov -0001, 00:00
      Hi St Lucia,

      I have had R.A for 11 years. My bloods are now normal but I went through a dreadful stage so they put me on Humira and that has really helped. I would hope they can help you now you are at such an awful stage. Work will not be helping any joint damage.
      Im not sure if you take anti- TNF. Do you get to see a rheummy soon?

      Elizabeth
      Never be bullied into silence.
      Never allow yourself to be made a victim.
      Accept no ones definition of your life

      Define yourself........

      Harvey Fierstein
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      tkachev wrote:
      Hi St Lucia,

      I have had R.A for 11 years. My bloods are now normal but I went through a dreadful stage so they put me on Humira and that has really helped. I would hope they can help you now you are at such an awful stage. Work will not be helping any joint damage.
      Im not sure if you take anti- TNF. Do you get to see a rheummy soon?

      Elizabeth

      Such good news to hear the Humira helped. That's one of the ones they are thinking of putting me on. I'm trying to organise an appointment today for hopefully not too long in the future - i cant wait much longer to get on them.
      x
    • tkachev
      tkachev Member Posts: 8,332
      edited 30. Nov -0001, 00:00
      That is really good news. I know it doesn't work for everyone but it made a big difference to me. I had so many new and different medications and they worked for a while, I felt better but then I got all the symptoms back. It felt hopeless.
      But humira has kept the symptoms at bay-been on it for nearly 2 years now.
      I worry about getting peoples hopes up but I think you need to move onto another medication.
      I feel for you as I know how bad this is and everyday is a struggle. Let's hope an appointment is sorted very soon,

      Elizabeth
      Never be bullied into silence.
      Never allow yourself to be made a victim.
      Accept no ones definition of your life

      Define yourself........

      Harvey Fierstein
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      tkachev wrote:
      That is really good news. I know it doesn't work for everyone but it made a big difference to me. I had so many new and different medications and they worked for a while, I felt better but then I got all the symptoms back. It felt hopeless.
      But humira has kept the symptoms at bay-been on it for nearly 2 years now.
      I worry about getting peoples hopes up but I think you need to move onto another medication.
      I feel for you as I know how bad this is and everyday is a struggle. Let's hope an appointment is sorted very soon,

      Elizabeth

      That's brilliant that humira has worked so well for you. When you say that it's kept the symptoms at bay for 2 years do you mean that you don't feel as if you have arthritis? wow I would love to not have any symptoms. Can you go back to 'normal' and walk and exercise and run around like a crazy headless chicken and be fine?

      x
    • tkachev
      tkachev Member Posts: 8,332
      edited 30. Nov -0001, 00:00
      The inflammation which is all over your body and makes every little movement hurt, that has gone. I dont lie in bed hurting allnight either.My rheumatologist stated I had rapid onset of R.A which had not been treated quickly enough in the early days I also had a baby(not planned) 7 years ago which caused a very bad flare which again was not treated quickly.So i have been left with some damaged joints that need operations to correct them. I have had 1 THR since starting Humira and this has stopped the awful pain in my hip.Only a few more joints to go now....

      E x
      Never be bullied into silence.
      Never allow yourself to be made a victim.
      Accept no ones definition of your life

      Define yourself........

      Harvey Fierstein
    • stlucia
      stlucia Member Posts: 392
      edited 30. Nov -0001, 00:00
      Wow it sounds like great stuff to be on. How do you find the injections?
    • tkachev
      tkachev Member Posts: 8,332
      edited 30. Nov -0001, 00:00
      I had a nurse show me the routine and inject first time. They will come as many times as you need until you feel ready to do them yourself.I am used to them now and dont fuss and worry I have done something wrong.
      When I had my first injection I noticed the difference within a day but the nurse said of 3 new patients one had no improvement, and 2 felt better. If it doesnt work for you they will try you on a different one.

      You might have a wait until approved and then there are some tests to make sure you are suitable health wise...TB check, lung function.

      In the meantime the school should make some effort to help you through the day. After all the teachers on maternity leave are well cared for and not expected to lift heavy things.

      Good luck
      Elizabeth
      Never be bullied into silence.
      Never allow yourself to be made a victim.
      Accept no ones definition of your life

      Define yourself........

      Harvey Fierstein
    • dreamdaisy
      dreamdaisy Member Posts: 31,520
      edited 30. Nov -0001, 00:00
      Hey stlucia, it's the end of another week - how are things? DD
      Have you got the despatches? No, I always walk like this. Eddie Braben

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