Consultant, MTX interesting fact/fiction on ESR and me.

[caggy]

Hi RA sufferers, Thought I'd give you an update, after now been 14 weeks at home having given in my notice because my RA was as bad as it could be; I am seeing a light at the end of the tunnel. First of all I want to say a BIG THANK YOU to all on this site who have supported and encouraged me. I began this journey feeling very much that I was the only one who felt this way, that I was the only one who was angry, depressed, in constant pain, who felt I was losing my mind, who was struggling to get my head around MTX painkillers and severe exhaustion, and the mind-field of 'professionals' who know you better than you know yourself!

Now I'm feeling better and can say so, I haven't received ESA or DLA yet and I haven't got a job or money, Yet I am no longer counting the painful joints, popping masses of pills or sleeping day and night. What has changed?

Believe me when I say 'ME' I have come to the point of acceptance of this awful disease, I've accepted that unless I take MTX and painkillers and rest when my body screams, I am only fighting myself. Yes I still get angry and depressed at what i have lost, but I thank God everyday I am alive and I want to get a life.

I traveled 40 miles and waited over an hour to see my consultant for 5 minutes and have him tell me that he wants to put up my MTX to 20mg when I was quite happy to stay at 15mg, and when I said that I was told 'I'm the Consultant' So I shut up, made an appointment for 6 months and drove all the way home again, thinking what was that all about? (this the much waited for appt that was supposed to be brought forward, that stayed the same)

Today at Church I was asked again 'Are you getting better?' to which I replied YES Because now I am feeling much better and can say so, instead of the frustration of nobody really understanding.Thanks to You friendly lot mainly, because you heard my cries, AND I am back again on MTX (7 weeks) and this time without the stress of work I am believing it will do me good in the long run, and Praise God I don't have terrible side effects.

My cons said something I hadn't heard before that ESR rate at half your age is ok/normal! my question was 'Why when my mine was 9 didn't I feel 18?' and now that it's 20 why do I feel ??????

Somebody mentioned once about blogging when we're down, because thats when we need it most, so for all who are needing it most now; keep blogging and one day things will change for the better.'

Carol

ps sorry this wasn't in rhyme, may be next blog.

[sylvi]

Well thought out blog Carol. It does chaange how you see things when you have to give up work doesn't it. I am pleased that your at a place that your happy with. Love sylvi.xx

[Hidden]

Great blog Carol, thank you for sharing. I think we do get a lot of blogs on here which are written at times of stress or pain but agree that this is when we most need to open up and receive support. I try to balance my bad days by remembering to share the positive times too. Glad that you're feeling better right now and I hope you continue to improve on the mtx. Best wishes

Paula x

[caggy in reply to Hidden]

Yes thanks, when I'm happy and painfree ish, then I can blog quite positively that's when it starts to become poetic!

many blessings

[watson3]

Hi Carol

Glad to see that you have found a place that you feel comfortable in. That place in your head needs to be found, but only when you..yourself are truly ready to see what is the best way forward for " you ". This journey that we have been given tickets for, that we, neither asked nor paid for.

We are now paying a very high price with our lives, livelihood, jobs, family and general health.

We need to take account of what we want, need and how we can achieve what is best for us.

I am glad that you have taken the first steps on that journey to a recovery of the new normal. A journey we have really no choice but make.

We shall be with you on every step. I will keep blogging my funny stories and hopefully make you smile.

My journey like yours will run its course,nudged a little along the way.

Consultants will have their say, whether the patient complies to their wishes may be another reason for some poetry.

I wish you well my friend on you retirement (enforcement of being unable to work)

Rest, do things at your leisure, things that bring you please, with people who share you joy. But most of all be happy my friend.

Enforced retirement may be the start of a whole new world of exciting ventures.

I hope so.

Love

Carole

[caggy in reply to watson3]

Thank you Carole, Monday Morning and MTX and I've taken 20mg 8 little tabs that make me choke but practically painfree. So waiting for the post just to see if anyone believes me; that some days can be bad and give some money to help with staying at this place, otherwise I'm searching the net for any job and trying hard to fill in applications and send them off. It's hard to put on paper that I am worth employing and that even with RA I am capable.

Looking forward to reading more prose from you.

Love Carol

[helixhelix]

yes there is a light at the end of the tunnel. Sometimes it's pretty far away and others you can forget you're even in a tunnel and just bask in the sunshine. But keep believing that it's there.... I found that stopping work was the turning point for me, and since then I've gone from strength to strength (well mostly), so really hope that you have the same. Take care. Polly

[caggy in reply to helixhelix]

thanks Polly, Yes no stress of work has finally allowed me time to be me, but I have no money to live on, my OH works 16 hours we were working together until I couldn't anymore, we are both under pension age, and so there is this need just the same. I'm about to write a blog on the letter I got yesterday from DLA. Nobody will be laughing!

[Gina_K]

Glad you are feeling better, it does take time and is amazing when it happens, because you think you will never be right again! Stopping work has also helped me in a lot of ways especially with pacing and being able to do other things aside from work & sleep! Pills and meds are crappy, I had stopped my my mtx for couple of weeks and when I restarted the fatigue was mind numbing.

I have been having melt down lately too, mostly ok tho. even though we know we have RA sometimes it feels like maybe it was a mistake and the... oh oh why is my knee/ hip/ neck so suddenly sore, and then you get frightened, then you realise, this is RA and this is why you are taking all these scary meds...

nite nite, Gina.

[caggy in reply to Gina_K]

Hi Gina, So very true, rather than repeat myself read Polly's reply, But yes It's good to have a place where we don't have to fill in all the spaces, we understand how it feels. One day ok the next 'What on earth is happening?' I am feeling much more upbeat and not crying at the thought of losing the job I worked all my life to achieve.