Going a bit Harpic....

Hmmm that's me. CLEAN ROUND THE RUDDY BEND!

This is the third time I have written this and I don't get this on the website I am going to give up.

Right then. As I said before (but you didn;t read it because I lost it somewhere). This bloody disease has got me beat again. I don;t know how all you people who have had it for years, have worked and raised a family and had to put up with RA during most of your adult life. have managed it. You are absolutely marvellous and deserve a medal. At least I got to 54 before I had my first full blown bout of it, and I don't think I shall ever learn to live with it.

Just when I was thinking I had got myself sorted, I suddenly came over a bit tired on Saturday morning. By 1.30 I had had enough and told Mr Shepherd, in my new found steadfastness I was going to lie down for a while. I eventually came too properly 8 a.m. the next morning. I slept for 18 hours. I know some others had experienced marathon sleep ins but I never thought I would... it's not going to happen to me syndrome. It's only now late on Monday afternoon that I feel anything like almost normal, brainwise, to manage to do anything outside of buttering bread and drinking tea!

It is so easy to think of yourself as selfish and self-centred, but how can we not when we spend the whole time wondering how we are going to feel. Having to plan ahead, think about whether we have enough energy.

We should not think how this affects other people, the most important thing is IT AFFECTS YOU. After a period of adjustment, life is different, it has to be. It becomes who you are, not how you affect things, but who you are. It's the norm. It takes some blooming getting used to I know, but it is your life. I don't quite know what I am trying to say, other than, you are what you are. Life is different for you, your family and others just like is it different for someone with a different belief, religion, cultures, missing legs, whatever. Life becomes different. Don't worry about how it affects others, people will react how they want to react, and they are free to do what they want to do, they are either with you or without you. Just like RA you've either got it or not?? Am I rambling. I'll stop now. Make some soup.... sorry... take it easy peeps. See you soon and look after yourselves. Julie xx

[Tricia-P]

Julie, you are so right it affects us with the RA, we know how we feel and that should be good enough, but i'm sure that each and everyone of us has apologised because our illness has affected something or someone.

Now I'm going to point out you have a ghosty thing hanging around!!

and whoops forgot I'd got the stock from the gammon i did yesterday when the family came. thanks for reminding me.

gentle hugs

Tricia

x

[emandedmum]

Oh Julie, I'm glad you managed to get some decent rest in. Sounds like you really need it, grr blooming RA. It doesn't matter who we are or what we do it hits us all in the same way!

I too have been exhausted this weekend and have slept in late and gone to bed early, thanks ever so much to my lovely OH. Some weekend mornings I just can't wake up, not even the noise of the kids downstairs wakes me up so I must really need it. Sometimes it does feel a bit like I'm sleeping my time away but I'm no good to anyone wiped out!

I hope you'll be feeling a bit brighter soon, you've just got to give into it sometimes and let it take it's course, which I know from experience is much easier said than done! Take care x

[Hidden]

take care you ladies just had 2hr kip x, just have to give in some times unfortunately

[Hidden]

Hi Julie, 18hrs sleep and I bet it just felt like 2!!

Your right it is us who as the RA and others accept or they don't.

life is certainly different, I felt like I was living someone else's at times it never felt like my own, RA seemed to take everything away from me.

Take every day as it comes, I know sometimes you have to plan ahead but it's so difficult with RA because you never know how your going to feel.

Take care.

mand xx

[Hidden]

Hi Julie

I have just got back from the Hospital- Rheumatology. Been teaful with nurse specialist about how kind she was about me going onto Biologics and how she acknowledged just how ill and tired this thing makes you feel.

I told her exactly what you were saying on your blog. Except that I thought maybe I was weak in someway for having to succumb to sleep so often. She said that it was the disease and the fact it was uncontrolled etc.

Today I am going to try to forgive myself for not being the person that I used to be or wish that I could be and instead try to adjust to who I am now and learn to love and accept her.

Best wishes to all

[Hidden]

Hi Julie and everyone else too!

Sometimes, no, often, in life you just have to say 'sod it' and get on with ... life. As hard as it seems if you don't you have let your travelling companion get the better of you, it gets the upper hand, it sits in first class with you, it imposes on you. Then you're snookered.

Those of you who belong to the NRAS Forum will know of the problems I have had over the last 12 months or so, neutropenia, absence of meds for knee op., major flare in Cyprus, poor response to joint injections, nil response to depomedrone jab, unacceptable side effects of leflunomide and throughout uncontrolled RA and deteriorating joints. It hasn't been easy but staying positive is the only way forward.

I look back over 23 years and wonder how I managed four kids, three boys within 16 months! But you do, you have to, you have no choice, life goes on. You either sink or swim. It's keeping a certain perspective on life and not dwelling on things you have no ability to change. There's no point thinking about the what ifs ... we have RA, we have to adapt to survive.

If RA is taking life from you turn it round, find an alternative. Don't worry about planning because you'll end up never doing anything just in case .... make plans, if you're not up to it cancel. If you live life around the RA it is controlling you. Kick it out of first class and back into freight where it belongs.

For some of you it sounds as though the disease is not yet under control. Keep a diary, jot down the aches, pains, fatigue, difficulties experienced, side effects from meds. All the info you can offer will help to ensure good appropriate treatment in the future. (says she in a pickle!!) There is a treatment that will suit each of us ... finding it is a little harder

Lyn x

Julie, why is that 'ghostly thing' hanging around? Hope it's not you looking like a shadow of your former self!

[Hidden in reply to Hidden]

Lyn.. you are top dog you know that? You have such a way with things and turning it round, and it is obvious you keep as positive as you can. My goodness it must have been so hard. I am going to recommend you for a knighthood. What is the lady equivalent, Dame hood, MBE. George Cross??? Thank you for your wonderful words of wisdom.

That thing hanging about is a monkey, made out of towels, our cabin attendant used to come in at night and turn down the bed (how posh!) and left us a little animal made out of rolled up towels, each night. He used David's sun glasses and hung him on a coat hanger!

[Hidden]

Thanks everyone, where would I be without you all to listen and encourage me. Thanks a million Julie xxxx

[Hidden]

Hi Lyn

thanks for your encouragement. I think that life is a process of adaption. Sometimes it is necessary to go through stages to come to terms with loss.

certainly thats so for me. However I appreciate that we are all individuals and deal with the impact that RA has on our identity differently.

[Hidden]

Sending a big pain-free hug to you Julie xxx