HI Naomi,

I am so glad your consultant is on the ball. I feel for you being in such a bad place at the moment. I remember feeling that bad when first diagnosed. My consultant put her hand on my arm and told me I would not walk out of her room as bad as I had just walked in. These are words which I will never forget, and I didn't; the steroid injection had me moving within a few hours. It really is a horrible place to be until you get the drugs sorted out. You will feel a tremendous difference talking to the Psychologist, I think just having someone to listen to you helps. Keep a diary to see yourself improving, you will I am sure see things change soon. The fatigue is dreadful when it strikes, remember try not to let it get you down, easier said than done I know. I used to tell myself, things could be worse, I just kept hoping to beat this.

Naomi You will get your life back try to be positive, I have now and have been well for years, if someone had told me that years ago I would have struggled to comprehend it. There was a time I needed my husband to feed me drinks as I could not hold the cup, I needed him to cut my food up and brush my hair, he had to take the tablets out of the foils as I could not do it myself. I needed lifted onto my feet as I could not lift myself up. I was bedridden at that point, and I cried as much of the time, the pain was agony, I had lost the use of my right arm and the movement in my neck, I had pain even in my jaws and up the back of my head, it still haunts me when I think of it now. It was just 2 weeks before Xmas, I really thought my number was up. Then I was told at the first meeting I had RA ( which up to that point I had never heard of it.) I was told the blood test would prove it in two weeks, which it did and like you left me shell shocked. It took a time to get my head around it and make my mind up to beat it.

The point of my telling you this is I am as well as before now, as long as I do not push things and exhaust myself which I did yet again this week and have paid for it. I usually lose 2 days when I do this but I have been busy decorating my kitchen, I have done half of it and have been unable to do anymore for the last week as I have hurt my knee and arm doing too much. I feel better now but it can wait until after Xmas, the bit I need to do is above the cupboards, the dining area is complete. You will get a lot better than you are now, you just have to believe you will and I truly hope your new drug helps to make you smile again very soon. Lots of hugs for a lovely Xmas, you have lots of friends on here who really know how you feel.

Keep smiling, Lorna xx

Great going in putting across your thoughts to the consultant-I hope you drenched all his important papers in tears!

And we are ALWAYS here for each other.

Hi Naomi,

Glad to hear you believe us when we say there is a light at the end of the tunnel. Even bigger hugs to let you know I have been thinking about you and hoping you feel a little better knowing others do care.

My turning point came when I first had the RA confirmed and like I said was completely shell shocked. My husband and elder daughter knew of the possible outcome, but my younger 2 daughters didn't at that point. on telling them my younger daughter said through her tears she wanted " her old mum back " She had seen me struggle so much trying to do things, she was only 13 at this point. I reached forward and hugged her and told her I could not feel any worse than I had already felt, it had to start to get better, now I was given my new Triple Therapy. Seeing her crying upset me more and made me more determined to get on top of this.

It wasn't easy I had taken it for around a month when I was affected with a severe rash, I was told to stop all the drugs, I was frantic thinking I was to go back to where I had been. The RA nurses called and assured me things would be fine, I just had to start them slowly and see how I re acted this time. Fortunately it was ok this time as my system was just getting used to the powerful assortment I was now taking. I have never looked back.

This will be you in a short time too, I do sincerely hope this new drug you have been given really helps you. Ask Nras for my home number if you would like someone to chat to. I'm sure I could make you smile. I am and have always been a very positive person I try not to let things get me down. It is hard sometimes though.

I have my Consultant on Thursday, its sods law I have kept well all year even pushing things at times. This last week I have paid dearly though ( self inflicted)
I am full of aches with all my decorating. The daft thing is I will no doubt do it again another time, I can't help myself. I enjoy doing decorating and gardening, thats the two which usually causes me problems when I do overdo it. I do pace myself too, most of the time.

It Christmas, apart from the good cheer and all the festivity's,the cold and frost make me ache that bit more. I was going to check on my greenhouse today and almost fell on the slippery ground. I left it until tomorrow.

Try making yourself do the smallest little jobs you have to do, like I did, I hung out with great difficulty 2 items on the washing line, ( that was a job and a half I can tell you ) but I did it and it made me realise I was in control NOT the RA. You actually feel just that little bit better.

Please give me a call and I will try my best to make you feel a little better, someone from Nras called me when I was really bad and she helped me no end.

Lots of love and good vibes to help you.

Be strong Take care Lorna xx

Hi Naomi,

So glad to hear you're on the up and I'm moving to Torbay! I always feel like my consultant dismisses everything I say. What I was really trying to say since my last post which was a bit badly thought through was I can only give you my take on things but it went like this for me:

You feel like you want to die, you'll take anything and put up with the side effects for however long in the hope you'll feel better

You get all sorts of side effects but because its such a cocktail of drugs you don't know what's doing what

They tell you the drugs are working, the progression of the disease is slowed down and ignore anything else you have to say on the matter

You start trying to 'simplify' the cocktail to see what the minimum is you can get away with taking

You soldier on

You feel a bit better

You overdo it

You end up in bed

You up your drugs again to get on top of things

You analyse it all to distraction in an effort to work out what's doing what and it becomes a bit clearer

You soldier on

You feel a bit better

You overdo it

You end up in bed

And so it goes on until your life is slimmed down to the extent that you can manage! I'm still pushing the boundaries as I have done since a child. But everything will be OK next year!

Hopefully you'll get to 3 soon and won't go through the rest of it and be far more sensible than me.

Wishing you well
Sara
x

Big hug to you naomi and hope you have a lovely christmas and all the very best wishes.

Love
Belinda
xxx

Hi Naomi, really hope the leuflnamide and counselling helps you.

Chin up.

Bevxx