A step too far and not so funny!

When I wrote my last blog I was looking forward to meeting lots of new people, and putting faces to those I’ve already had contact with, at the co-ordinators conference and 10th Birthday lunch. That all seems such a long while ago now and yet in another way it doesn’t seem five minutes. Both events went really well, although busy, and I thoroughly enjoyed them. I wish I’d had the opportunity to meet more people at the lunch but time, as always, ran out far too quickly. The conference was also very busy and we had to try and fit everything into one and a half days because we had to get to the birthday lunch. It was lovely to put faces to so many names though and I look forward to the next opportunity to meet more people.

We have a really busy month ahead of us in the Volunteer Network department. There are three launch meetings coming up in September - Maidstone, Salford and Salisbury and another one in October - Oldham. We also have a new member of staff starting mid way through the month. All very exciting but I think you’ll hear more about that another time.

I was promised a quiet month in August where we could catch up on everything and have a good sort out. The month is now over and I’m still waiting for that ‘quiet time’. At least there is no chance of getting bored working here!

It will soon be time to work on another Joint Endeavour, the small newsletter we produce for NRAS volunteers. I’d love to have a few stories to put in it so any volunteers reading this please send me something. If you’re not a volunteer and would like to send something that would be fine too! It doesn’t always have to be something you’re doing with your group or the various fundraising activities you’ve been doing to raise group funds, although they would also be appreciated. Have you got any funny stories to share or acts of kindness? Perhaps you’ve been travelling abroad or had a holiday in the United Kingdom? Photographs and a small article would be interesting for everyone and if you’re concerned at all I could help you write it. The more people contribute, the better it is. It’s for your interest as well. I’ve yet to have too many articles but wouldn’t mind at all if I’m ever in that fortunate position as I could always save it for the next issue!

This is my third blog in the eleven months I’ve been working here and so I decided to look back at the others to see what I’ve written before. I’d been thinking I might find a trigger for something amusing but then found the following section from my first blog, a few weeks after joining NRAS .....

-‘Already, in my short time of working here, I've felt some benefits I hadn't thought of. When I find myself with aches and pains, or feeling tired and not wanting to get up and rush round to get to work on time, I only have to think of the people that suffer with RA and I realise just how lucky I am. How can I possibly complain about such minor irritants when I'm learning so much about what you may be going through?’ -

.... if only I’d known then what I know now. So, with that in mind I thought I’d tell you what has been happening since and save something amusing for another time. The very things I referred to as ‘minor irritants’ became more and more pronounced. The more I learnt about the symptoms of RA the more I could relate to them. In February this year I suddenly got swelling on my hands. Still in almost total denial I showed them to colleagues at work. That was the point at which I put all the clues together and started the seemingly endless journey for diagnosis and treatment of RA. I’m extremely fortunate to have been working here during this time. I’m surrounded by very knowledgeable people who have encouraged me, nudged me, advised me, helped me and been a tower of strength to me. I still realise how ‘lucky I am’ but not quite in the way I’d referred to before. Like the rest of you, I appreciate this is just the beginning of another chapter, not the end. However, I still think it’s a step too far in my training at NRAS but that just makes me think of my second blog when I suggested that what we think we want isn’t always what we really want. I’ve learnt a lot more but some of that has been through experience instead of theory.

Anyway, I think I’ve probably written more than enough!

I hope I meet some of you again soon and a lot more of you in the near future.

Sue

NRAS Volunteer Network Co-ordinator

4 Replies

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  • I think developing RA is above and beyond the job description for the Post?.

    it can be a very long journey.. but with your contacts and outer london location search round for the best treatment.. london hospitals attract better funding and often drug trials alos.. wishing luck on the journey

    Summer aka Alison xx

  • Hi Sue, I feel quite touched reading your blog, I feel so terrible for you, surely knowing what you do about this disease beforehand must make it all the harder to take but yet you come across so positive..

    wishing you well and look forward to your future bogs :)

  • Hi Sue. I was busy reading your blog and was so surprised to read of your diagnosis. See that tiredness was not just being lazy! I think most of us have been there!

    Like you say it seems "lucky" that you were in the "right" place and got an early diagnosis. Hopefully this will be all for the better for you on your RA journey

    Wishing you all the very best.

    Julie xxx.

  • Hello sue, Soory that you've become a member of our ra members club, i won't welcome you to ra as its not something any of us asked for,but i will say there will be plenty of uplifting chat that will make you smile when your having a bad day.

    My philosphy to this disease is god only gives what he thinks we can cope with. There have been days i must admit when i've wondered. I'm not a massive church going person, just that i believe there's more to religon than is preached in any church.

    Take care

    Love sylvia.xx

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