My 19th year...

Sarah11
Sarah11 Member Posts: 2
edited 2. Jan 2019, 10:25 in Say Hello Archive
Hi All,

My name is Sarah and I was diagnosed with Arthritis and the very small age of 7years. I am now entering my 19th year with Arthritis. I have always felt alone and have only just started to openly talk about it.

I was wondering what methods people use for exercise? I am a proud dog mum, so I walk a fair bit but as we all know...when you flare up...you can't stop it.

I have it sadly all over...from the toes travelling up to my knees, hips, hands and jaw.

I hope I can use this as a way of not being lonely/angry and bitter about it all.

m0150 t07026

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Sarah,

    Well done finding your way to the forum, one thing we can do straight away is to say 'we get it' the pain, the fluctuations that let you feel well, then not and sometimes the nots have it all their own way. It can make us tricky friends and even family can have a hard time, blimey even I have a hard time and I get the inside information!

    Come on here, have a moan if you need it - you can even shout if it’s that bad, no judging, just walking along the way and, very tenderly, sending virtual hugs (((())))

    Have you read the spoon theory? Try it, it might help you to show your friends/family a little bit how it is for you, or it might give you a 'that’s it' moment, or both

    https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    I’m sort of thinking you maybe have Juvenile Idiopathic Arthritis (JIA) - is that right? Whatever it is you will hopefully find new tips to help you every day and if you would share your tips and ideas that would be great.

    Take care and post soon

    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I hope you find the forum to be of interest. I have PsA plus OA and regard any movement I make as an exercise for something somewhere: changing or making the bed is good for my upper body, walking is good for the lower body although it screams in protest at every step, hoovering is good for everything.

    When I do make it to the gym my preferred machines are the treadmill and cross-trainer. I do what I can, ignoring the hugely advanced activities of those around me who are not disease-ridden and who would be reduced to blubbering jellies, incapable of coherent thought it they had to endure just five minutes of my reality. :lol:

    I began the PsA when I was 37 and I was always a candidate for the nonsense having been born with auto-immune troubles. Never mind, I realised aged eight that others would be living much better lives then me in the physical sense but there is more to life than that. I am happily married, deliberately and happily childless, had a job I loved and live in a house I adore, all things that many healthy people do not accomplish so so overall things are pretty good. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hi Sarah and welcome from me too :)

    I was diagnosed when I was 15 but it probably started with a bout of 'rheumatic fever' when I was 11. Arthritis and I have now jogged along together for nearly 60 years. Phew!

    I think it's much harder when you're young and wanting to do all the things your friends are doing but can't. Mine were great at helping me to school but I think it only really hit when my younger son started school. All my contemporaries were starting work again but I couldn't. In some ways I was worse then than now as the only DMARD on offer back then was gold injections.

    Anyway, you are here and so are not alone.

    I have certainly felt lonely but not really angry or bitter because I've always seen it as the luck of the draw. To balance things out I've been very lucky in my family, my husband and sons. I'd rather have RA with them than a very healthy life without them.

    Have you looked at the exercise booklet Arthritis Care have? It's here https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/ and is very good for basic ones. When I'm feeling strong I add weights. When I'm not, I don't. I did Riding for the Disabled for many years until my surgeon got a bit iffey about it after my knee revision. Like you, I have arthritis everywhere so I had to have the reins adapted but it was great fun. The booklet also mentions which type of exercise is good eg pilates, yoga etc.

    I hope you can find something to help you. Please stick around here and join in anywhere. It's a friendly place and we don't bite :D
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
    Tai Chi may be worth considering. It is a form of gentle exercise commonly practised in China and the Far East. There are various forms but I wouldn't be too focused on that aspect.

    There is a chap called Doctor Paul Lam who is / was a General Practitioner in Sydney, Australia and also has arthritis (knees I believe). He has developed aspects of the art so that it can be practised (to a degree) from sitting in chair.

    He has a website and has released a couple of DVD's the contents of which are available to view via You Tube.

    Obviously there are other masters and forms available, I cite him purely because he has developed the martial art (a modified 'Yang' form for the technically minded) specifically with Arthritis in mind.

    Perhaps worth investigating.

    I should probably point out that I have no connection whatsoever with Doctor Paul Lam.

    There is also a chap (ex-Royal Hong Kong Police) called Michael Tse who runs a Qi Gong centre in London. He used to publish a magazine called 'Qi' the entire back catalogue of which is available to download in pdf via his website. He has also published a book and (I think) some DVDs although I may be wrong regarding the latter.

    His website has more details.

    I have no connection with him either but have found the exercises, videos and written matter from both individuals to be of interest and benefit. 'Qi' magazine contains some fascinating articles examining health and wellbeing from the traditional Chinese perspective but with similar aims to western allopathic medicine regarding arthritis - I.e reduce pain, restore / retain flexibility and maintain / restore a sense of well being.

    I hope this is of some interest.

    Arthur
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello again, Sarah, I've been thinking about your post. I think one of the major troubles with an auto-immune inflammatory conditions is that we have no warning of what it will do and when. I like my osteoarthritis because that is predictable: it's worse in the cold and damp weather, low pressure can also aggravate it. If I do too much then yes, there will be inflammation but that will be localised (unlike the auto-immune inflammation which affects the whole body). I feel for you to be so young and battling with the dross.

    Are other relatives affected with an anti-inflammatory arthritis? You didn't mention any medication, what are you taking at the moment and when did you last have a review? If disease activity is not properly controlled then that can make matters far worse. I pointed into depression in 2011 when the osteoarthritis was diagnosed, I cheerfully thought that once you had the one kind that was it so to discover that having both was normal was a blow. I maintain my morale through exercise, focusing on doing things I enjoy and a small daily dose of an anti-depressant:. I tried stopping it and found that, despite my long experience of self-motivating and distraction techniques, I needed that extra chemical boost as my unreliable body was too busy being negative. I suspect your boyfriend may be on the right track, have you spoken to your GP about the possibility of depression? I remember mine saying 'At last!' when I finally asked her for some help. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben