In a Word?...

Hello it's me.

My brother used to have a saying "you've got more to say than you have to eat!". He was usually talking to me at the time!

I was a PA to a partner in a firm of solicitors for 16 years, for my sins, and he used to have verbal diarrhoea. I think it rubbed off on me. I used to cus him up one side and down the other, his letters used to go on so long and he never said one word when three hundred will do and kept repeating himself. That's me too. It's also where I trained for the Carpel Tunnel Syndrome...bashing away on a typewriter all day long I had RSI and an operation on both hands 20 years ago. It was a proper typewriter mind, not one of these yere new fangled keyboard thingys and it was tough going, and hard on the fingers and wrists.

So where was I before I rudely interrupted myself.

Oh yes....pin back your lugholes...

I was reading through my old blogs, because I have a terrible memory, to remind myself what "journey" I had been on. As if I could forget! The awful despair and misery I went through after I was diagnosed and the time during December 2010 and January 2011 when I was trying to digest what was going on. I took my first dose of Methotrexate on December 28th at 8.30 a.m. by then, I had been without any medication for a couple of months, only painkillers. I was so depressed by then, I couldn't see a way clear in any direction. The terrible feelings, of anger, I was so mad, sad, lonely, afraid, hurt and my old friend self-pity followed me around like a bad smell.

Looking back it seems like I have learned so much and so fast, relatively, as it is only a few short months since that day I took that first dose and I seem to have come so far. I have learned so much about RA, about myself, the people who have RA and how they have and do cope. The support, advice and encouragement I have had has played no small part in helping me get to where I am today.

If there is one thing that I can say that has been the greatest part of this process it has to be ACCEPTANCE.

I have had to accept who I am and what I have and realise I have RA, and always will have RA until medically told otherwise. The old pre-diagnosis me has gone. The mourning and grief for that person, the sadness, and loss is all part of arriving to where I am. I may not physically be the same, but I am still me. Although I lost her for a while, I think over the last few days, she has returned. Mentally, I have the old me back. Mr Shepherd gave himself a day off yesterday, so I tagged along. We went to Ilfracome (I know not the best of places, but it tries!). Strolling (I used to march before) along the harbour and pier, with the man of my dreams, in the sunshine, it felt good to be alive and walking and talking (at the same time!) Ok so I shall never jump over the chicken range fence, or cock my leg over the sheep hurdle, jump down off the tractor, or skip, and run up and down the stairs, but I shall have to do what I can, when I can, and in what manner I am able. By accepting this, I can be much more positive, and therefore more able to manage. I have no illusions, I shall, no doubt still have my days of despair, but I know where I can turn to help and shall not be afraid to ask for it.

So there you have it. in a nutshell, or two.

I couldn't say just one word could I?

So have a nice day everyone, take care, and be kind to yourself.

Julie x

[Hidden]

nice photo julie v glam and good blog as usual.. in doing the two finger typing routine.... lol x

[Hidden in reply to Hidden]

Thank you Alison. That was me the first night aboard the Independence of the Seas as we headed off to the canary islands. Don't know about glam! but it was a lovely holiday cruise.

Two fingers is good, especially done behind the back of a traffic warden... sorry civil enforcement officer... cor!

[Hidden]

or at my hosp who wont give me my expensive drugs... just got back from gp.. another week of work... now if gold doesnt work... 2nd opinion and diff hosp is my options

[emandedmum]

Why did you not just bonk him on the head with your typewriter?! End of Mr Waffle.

Good on you Julie, it's so tough moving on and up. I only feel like I've gone sideways somedays and have only just welcomed in the new me. I'm sure if I'd have had access to this platform earlier I'd have coped much more admirably!

I once saw a locum consultant in my early RA days and I was suffering terribly and didn't have a clue then what was happening to my body. When I asked him questions he just laughed and told me the following: "There is no miracle cure for RA. You will get side effects with any medication, you will have to put up with them. Steroids are bad for you. You've got to just go away and get on with things." Needless to say I was devastated by his attitude. But sometimes I am thankful that someone said those things and I just need to think back to him to stop myself falling right down to my darkest place. I hate him for what he said and how he said it but in some respects he did me a favour!

Big hugs xx

[Hidden in reply to emandedmum]

Thanks Jo.

I once met someone who believed that the people we meet are those we need to meet in order to live the life we are supposed to. But Im sure we can do without doctors who give you stupid innane advice like your locum. My GP was a nutter, the first one tried to hang himself and thought my swollen hand was an insect sting,and the second one just told me I was overweight and if I lost some it would help. It would be kinder on my joints if I lost weight and the pains would go. He also reckoned I had to remember I was getting on and post menopausal when all womens bones and joints ached and craked a bit more. I was a decrepit 52 at the time, working a 60 hour week? It just makes you wonder what purpose these people serve to anyone really.

Thanks for the hug. hope it goes well with the social worker and family.

Take care

Julie x

[emandedmum in reply to Hidden]

Something to do with fate I believe...well, everything happens for a reason doesn't it? I must have been really naughty in my previous life...

I got told on a different ocassion that all my problems were down to my vit D def alone, that I didn't have RA and to get myself out in the sun - in Cumrbia? I ask you Sounds like you've been through the mill a bit with your medical care though - I hope your docs are all slightly less bonkers and more helpful now?! x

[Hidden]

ooh err ladies. you have made me laughxx

[Tiasteph]

Love your blog Julie & your positivity

Totally agree that you Do have to grieve the person that you were (& hoping to become) before you can move on with the one you are now…I have said this before.

My thoughts on GP doctors are Jack of all…master of none! They do their best, I always listen but I listen more to my body.

I remember being on Vioxx for 5 yrs when it was called back due to causing heart disease, my GP was so blase I wanted to hit him! Hello this is my body!! Choose not to see him anymore.

Hence I go straight to my rheumy nurse or have even called my specialist's secretary in desperate needs!

Enjoy this lovely sun…free vit D

[Hidden in reply to Tiasteph]

HI Steph, and thanks for the comments.

Agree you about the GP's I'm afraid, perhaps we have been unlucky but I always come out feeling I am wasting their time, and how dare I ask or suggest something not in my remit! I have a nice lady doctor now, but unfortunately just sees me now as RA, she definitely changed once I had the diagnosis.

I am enjoying the sunshine and feel so much stronger, thanks.

[Hidden]

Hi Julie, Pacing, Acceptance and being Positive are the three main things I feel. Although I have known this for many years it is only recently that I have realised how important they are.

I too would look upon the past as my "old life", even when I came on here and wrote my very first blogg found myself getting upset just writing about the person I once was or the mum I never was. I know I am a mum but always felt robbed by the RA, and know I feel somewhat different about things,that I have to make the most of life with or without RA and you must too.

I can tell by reading your latest blogg how much you have learned too and a lot of it is thanks to this site I feel.

take care

mand xx

[Hidden]

Hi Mand

Yep, listening to you has helped me so much. All of the advice,support, and information from my friends on this site has helped me to be where I am. The NRAS website and forum was my first port of call when i was diagnosed and I am so glad I bothered to register.