I went for my 12 week nurse appointment yesterday and i would say that 12 weeks is about enough time manging this crap disease on your own. I didn't realise how much it was getting me down, until I was sat opposite my lovely kind understanding nursey telling me how well i am doing. All I get at home is ok if you don't do it I will! But I shall be late home, so don;t moan. and all that... or just "keep going mum if you stop and think about it it will make it worse" and stuff like that... which is ok BUT a little sympathy/empathy would not go amiss from my nearest and dearest.
So I have this lovely lady telling me to look after myself and asking me all about how I was feeling and the drugs I was taking and how I felt about taking them and advising what I should and shouldn't and could and couldn't do. I came out feeling so much better with a steroid injection in the botty.
So today later on I am going to sit them down, partner, stepson, daughter and tell them like it is. My RA is no way under control and just because I might be feeling better and I might look ok, doesn't mean I am. My bloods tell a different story. I have to up the MX to 20 mg and if that doesn't do the trick they are going to "give me something else". I didn't ask what that something else was going to be, i will leave that little surprise when I am hard up for surprises. For now I am going to do things my way. My guilt has just left town and I am going to be and do what I want to be and do what I feel I can and no more...
Keep your fingers crossed I can keep it up....... x
Glad you've seen the nurse and been able to set a new direction for yourself. Hope you are resting for 48 hours after the depomedrone injection!
You have carried on for months now and the time has come to get the blighter under control before it eats away those joints! Please take things easy Julie and don't feel guilty. You are very unwell and now you need 'me' time. A chance to recover and let the meds do their job. Uncontrolled disease causes joint damage, not a pretty sight I assure you, and certainly not a journey you would wish to go on.
Be positive you will keep it up ... you have to keep it for the sake of your long term health. Good luck Julie
We all know what you are going through! I feel bad for you. I know what its like to look fine, but feel like total crap and so tired, its like living in a nighmare. I am actually doing well at the moment aside from bad right wrist and ankle, but I have been where you are. You feel like a moan if you try and explain or ask for help. When I started on the Humira, I was asked to write what I hoped to achieve and to keep a diary, God do you know what I wanted? 'to be able to make the dinner again' I hate all things domestic cooking, housework etc! yet this one simple thing I wanted back and 'to be able to go walking again' these two things have now been fine for ages. The first thing my consultant put me on was plaquinil, next methotrex then steroids (they should only be used as a bridge) then cymbalta, coz I was cracking up! then Humira injections bi monthly, that is what you are going to get. Well I had the choice of that or embril, but I chose Humira (adimulab) as it is newer and less side effects. These anti tnfs are very expensive hi tech drugs that everyone should have!!!!
My consultant uses 2 dmards as she says it is a very clever disease as Julie says. Anyway, I hope ur week end goes well!
Hi Julie
Why do we feel guilty because we are ill? what are we like!!!!
Good luck with your chat and next lot of treatment, take care of yourself Sue x
Thanks for your support. I think this site is the best thing to happen since .........................
I can't think..... I know the electric blanket. That always made me feel warm and cosy! lol. No honestly just knowing there are people out there who know what you are going through and have such a wealth of knowledge and unfortunately experience with RA. It's great! x
Go Girl I had to tell my family much as you are telling yours, I wish I had known what I now, you must tell them that there will be days when you just need to sleep, I've been known to sleep for 36 hours just waking to take meds then zonk again. I haven't had a time like that for a few months but it just creps up on you we push ourselves too hard.
Good luck and your Nursey sounds nice, I'm lucky as mine are super as well.
Read your story and know how you feel, and life is hard but I think people with ra have to be selfish and look after themselves. I think people really can't understand how with feel unless they go through it and yes it does effect family life but it's the everyday pain for us and the many tablets with have to take.
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what a carry on with my hat my coat and a English Rose ( i might not s ee you lot again after this post)
Changing Rheumatologists
Severe head pain - feels like its my whole head! RA?
How can I make them understand?
