Ups and Downs

My entry today is just quickie to say hi and put my word in really. I think it helps to read other people's experiences and the more varied these experiences are the better - because everyone is different so RA/Fibro/Osteo etc treats us all like individuals too.

I'm 23 and I've had joint pains and fatigue symptoms since I was 17. I believe I know what triggered it, a great deal of social stress, but I know everyone has their own theories about where it comes from. It wasn't till I saw my uni doctor to get more fibromyalgia pills that I was referred to a rheumatology department. Addenbrooke's was brilliant in identifying and breaking the news to me. Finally I thought someone was listening to me and I was put straight on the right medication. A warning to all sufferers of Fibro; If you're on old fashioned antidepressants (or any!) you must not do what I did and just come straight off them. boy oh boy don't do that!

Right now I'm having a mini flare I guess, I'm on Hydroxychloroquine and Naproxen. I was on MTX and a few other bits and bobs but I didn't like being on so many pills so they let me cut down to the basics. I say I 'guess' I'm having a flare because sometimes I think we forget that people without Arthritis also get aches and pains and right now I'm training for a 60 mile bike ride so I'm sure the hardiest of folks would get sore knees now and then. My hands are achey, my little toes complain and my shoulders are in their telltale 'I look like I'm cold' position.

Yep - I'm doing the London to Cambridge bike ride, I'm doing it in aid of Save the Children and Flora and Fauna international. It's a great excuse to do a bit of exercise - use em or lose em peeps. It also helps keep your weight down etc etc I'm sure everyone's heard it a million times.

Sometimes I worry about my future, and relationships. I've got a lovely boyfriend but do I want to put him through the potentially difficult future I have? It can't be sexy watching your girlfriend popping pills and falling asleep all the time/ complaining about pain.

Most of the time you wouldn't know that I have arthritis, and as I'm sure a lot of you know - sometimes thats a negative thing - especially if like me you go to events where people shake your hand or crush it!!! I think I might remind people every couple of months at work if I start popping pills at my desk but it doesn't come up.

My mum's had arthritis since she was 40 and she feels guilty that I have it. Thankfully mine was caught earlier than hers. I feel like we are closer because of it though and I truly understand how she's feeling when she's having a flare up. We lean on each other a little more I guess. She needn't feel bad because it is a genetic problem and I'm very glad I exist at all!!! Does anyone else have a family thing like that? With the passing of the Rheum factor?

Finally, I want to move abroad. Medication abroad might be hard, doctors may be different, but If I let Arthritis stop me at this point in my life than what is the point in living at all right? I'll find a way for sure, and I'll let everyone know how I did it so that it's easier for the next person. I've certainly not found much on the internet but if anyone else has please do let me know.

That's all for now - I know it is long but if you've got this far you probably wanted to read it anyway, so thank you for reading.

8 Replies

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  • Thank you for your positive blog. You are lucky that your mum knows what your going through. Sad to say i didn't have that luxury as my mum died a year before my diagnoses.It was down to my cousin to tell me in was in my dads side of the family. It is what is not seen that causes the damages. People look at you and you have a smile on your face and they don't understand whats wrong with you.

    You are a lucky girl to have such a lovely borfriend, it won't be your choice if he stays or goes because of your disease,if he loves you and i get the feeling he does he will stick with you through thick and thin. Worry about things that you can change not what might happen.

    Lovely to hear your story. sylvi.xx

  • Its a great read, you are young, full of hope and adventure and so you should be. Think you are quite right that you go explorin' Ra shouldn't dictate what you do, though i fall under its spell much too often.

  • wow its wonderful to hear of someone with RA so full of vigour and life. Keep at it and lots of love to your mum as well. Axx

  • Well done to you. You certainly gonna tame this RA. Live your life treat yourself and others well. You have definitely got the world at "at your feet" and your positive attitude Will serve you well.

    Best wishes and keep blogging.

    Carole

  • Hi Rachel, your positivity is a breath of fresh air.

    As you say your dianosis was confirmed at an earlier age than your Mum's, so was mine. Mine was diagnosed like your Mum's in my early 40's my late Mum was diagnosed when she was in her 50's. I'm 62 now and still walking about albeit slower (mainly due to sciatica) but by my age my Mum was in a wheel chair. Meds have got a lot better since my Mum was being treated for RA and they will get even better as time goes on and it is better understood.

    I dont know how the travelling will affect the RA but as long as you go places where you can easily see doctors and get your meds. why not. You can always come back home if you have problems which you can't resolve, travelling is not one way.

    Hope the 'bike ride' goes well I admire anyone who takes on a marathon (my daughter did the breast cancer night walk through London with her partner a few weeks back - she's expecting her first baby in just a few weeks time and her bump was definitely showing but she was determined to do the walk. She's also climbed the mountain in Peru (can't for the life of me remember what it's called let alone spell it) although that was some time back and before she was pregnant.

    You are right with the 'use it or loose it' attitude and yes even 'healthy' people have aches and pains, it easy to put things down to arthritis if we have to give it a reason.

    My attitude has always been 'so what, yes I have RA, I can't change that but I will do what I can manage to do, when I cant, well then I might need to do it a different way and if I still cant do it, someone else will have to do it' (and I let them do it .... begrudgingly) ... (< spelling ?)

    [NB: I wish there was some way I could do a spell check on here - someone please advise if there is a way]

    Oh well, sorry to go on so, I never seem able to do a quick reply (as you can see I also suffer from verbal problems !!!)

    Take care

    judi xxx

  • Hi there,

    I really enjoyed your blog and I admire your spirit! I'm with Sylvi on the relationships front, I don't believe RA need make a blind bit of difference to how loveable someone is. And the things you've been through - haven't they given you something? Of course I want my arthritis to disappear immediately (I haven't had it long) but the experience has changed me for the better in some ways. Altho' I felt a bit sorry for my husband at first I now think he's married to a far less petty, much more determined woman!

    Look forward to hearing more from you,

    Christina x

  • Thank you everyone! It's been lovely to read people's comments and blogs. I think I'm coming out of the denial phase and starting to really embrace RA as part of me, its like you say.. there've been good things to have come out of it too.

    Medication - as you note, is always improving, more effective/less side effects, here's one for the scientists!

    Thanks for all the wishings of luck for the bike ride, let me know if anyone has any tips for good exercise and RA.

    Rach x

  • Very positive Rachel good luck for the bike ride x

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