The Return from La la Land!!

Haven't written anything on the site for weeks although I have continued to read various comments and blogs.

I went to our Occupational Health Department at work and it turned out to be a bit of a catalyst for an outpouring of grief that I think had been brewing for some time. And I thought I was doing so well!! Hey ho. Well, as you can probably gather, I am on my way back from La La land and some 5 weeks later (still got a couple more signed off) I have just started to think that life is somewhat less miserable. My RA has not improved and have now been on Embrel for about 22 weeks. I have transferred to another (more local) consultant and have an appointment for a couple of weeks time so perhaps that will be reviewed then. I was diagnosed with moderate to severe depression and am on antidepressants which seem to be working well now. I am also resting more and doing what my body tells me although the nights are still bad and pretty painful. At least being off work I can allow myself to manage my condition and have stopped beating myself up about letting everyone down and feeling guilty about absolutely everything.

My surgery have been brilliant. I am looking for a local part time job whilst I am still employed as I was driving for too long and working long days which I know I cannot sustain. I am not sure if that will prove successful but I can at least try. My husband, who has seen a vast improvement in me, thinks I have gone to La La land rather than returned from it as I am more chilled than I have been for about 18 months!!

Love to one an all out there and especially those who are having a particularly bad time of it. Caroline xxxxx

5 Replies

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  • So sorry to hear that , but you have now got some new healthcare ,I always find pain worse at night and think it is common.. we have things to distract from pain in the day. but at night there is nothing. when I was poorly the bed wasnt for me and I slept in a padded recliner chair/ or rather dozed.. pehaps have a look at bed/ sleeping options and save some of the painkiller allowance for just before bed.. welcome back and take care xxx

    Alison xx

  • hello caroline,

    You sound really chilled.....

    i can understand the outpouring of grief - i think you just keep going and live with the pain, tiredness and everything else and then when you have to sit down and speak about it, it is overwhelming and you realise how it is affecting your life.

    You sound as though you are getting through the worst of times.......

    You have also had the sense to take off work to rest. I am all over the place on that one and so understand the guilt!!!!! (if i can think i can work)

    You are so doing all the right things. I hope the Embrel does something for you soon or you get something else and manage to get a decent nights sleep.

    Yours is an inspiring blog. I got diagnosed about 6 months ago and don't think i have got to the point where i really really believe that it is going to change my life and i get myself all stressed out about life and get cross with everyone else because they don't see that i can't do these things but i won't take any responsibility myself but i am starting to. I did virtually nothing today and felt a bit lazy but not guilty and on Monday going to see if i can get a cleaner for a few days at week.

  • Hi Mads, yes do get someone in to help with the heavy cleaning. I have someone who comes in each week and it has been a godsend. She also does the ironing for me as well. I also have a gardener who comes in fortnightly to do the heavy stuff which I can't manage any longer and neither can Himself since he put his back out.

    Do get plenty of rest - RA is a life changing event and it takes a while to come to terms with it and to realise you can't do what you used to be able to. Even cutting hours at work can make a big difference to how you cope with this disease. Don't forget the NRAS website - there are loads of help on there including booklets about RA and coping with it. LavendarLady x

  • Hi Caroline,

    Glad to hear that the anti-depressants have kicked in and that you are feeling that you've 'come out the other side of that strange grief-filled place that is 'adjustment to such a big life change:-}

    Getting a part-time job sounds like a good plan - taking the pressure off and allowing you to Pace yourself. It does sometimes take quite a while to find the right drug for you - or combination of drugs - but take heart, you will get there and start to feel better. I'm afraid that the fatigue never really goes but with the right drugs and Pacing you can manage joint pain / stiffness etc.

    Best Wishes,

    Cece x

  • Hi Caroline, welcome back. Glad to hear things are a little better and the tablets are working. With a part time job, you should be able to spread the hours you want to do so as to give yourself plenty of time to rest as well.

    The nights are the worst and sometimes you feel you are the only person awake and suffering in the whole world. I will sit and read, or go into the spare room, or sometimes go downstairs, make myself some tea and then rest in my recliner.

    Hope the meds will soon get to grips with the RA. Are you on methotrexate? That is often used in combination with anti tnf such as Enbrel which I am on as well.

    When you go for your review, do tell them how you are feeling and how much pain you are in on a scale of 1 - 10. and discuss the possibility of stronger pain killers/methotrexate etc . It sounds as if you need a thorough review of your condition. As Cece says it sometimes takes a while to sort out the right drug combination and it is trial and error for sometime. Best wishes. LavendarLady x

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