Denial and Acceptance

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jordanr111
jordanr111 Member Posts: 3
edited 2. Mar 2013, 16:17 in Young people's community
Hi, I'm Jordan, I'm 19 and from Northern Ireland.

I was diagnosed with polyarthritus in 2008 - saw my illness arrive in the form of a pain in my right hand which stopped me from being able to grip a pen, since then, I've had to use a laptop and am isolated during exams because of this.

When I was diagnosed I specifically remember insisting "its one joint, this is a one off, won't happen in any others"... how wrong was I? I've been taking piroixcam since then, and had an operation to remove the inflammation in my hand.

Fast forward to 2012, I've just received results of an MRI showing inflammation in both ankle joints and in my posterior tibial tendon. (I also have tendonitis) So today when I was finally prescribed Methotrexate, I let go of denial, and made the sudden realisation that I have arthritis and I have to live with it. No more denial, I decided I'm facing it head on. This is with me for life, and I'll have to come to terms with that.

I know there are people far worse than I, but at 19, being told you won't be able to drink, or wear heels. You're too sore, and tired to socialise, well it feels like your worlds ending. I can't walk without crutches, I can't drive anymore. and it sucks!

Anyway, with the acceptance of my illness today, I decided I needed to talk to someone, anyone, as long as they understand and share my frustration

(I'm sick to the stomach of my friends saying, 'Its ok we'll come over and have a dvd night, we don't have to go out' or 'Its ok, you'll be fine' - i love my friends but they don't get it)

Feel free to post below, especially if you feel similar.

jordan x

Comments

  • stickywicket
    stickywicket Member Posts: 27,723
    edited 30. Nov -1, 00:00
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    Hi Jordan,

    I’m not a young person (far from it) but I was 15 when I was first diagnosed with arthritis. I’m impressed by the head-on way you are facing it and I’m sure you will come to terms with it although, as you have so rightly said, it’s with you for life and it’s not a temporary blip.

    Stuff is clearly bad right now and it’s bound to be if you’ve had this since 2008 and only been given anti-inflammatories. It’s quite possible that, once the methotrexate takes hold (though it can take several weeks), you will feel an awful lot better. Yes, you’ll still have arthritis for life but that life might not seem quite as limited.

    There are people worse off than all of us, Jordan, but that doesn’t lessen our own pain – either the physical stuff or the emotional. It’s tough, especially when you’re young, not being able to join in with all the things your mates are doing and of course there is a horrible sense of letting go.

    I hope that, given time, you’ll find the future isn’t as bleak as it seems right now. I got my degree, held down a responsible job, married, had kids, learnt to drive, did voluntary work, rode horses and now fly to L.A. every year to see my son and grandson. OK I could never wear heels and I couldn’t socialise anything like a much as my friends but, on the plus side, the friends you have with arthritis are the good ones. Car adaptions are plentiful and very varied these days and I’d guess that, once your blood tests have come back OK for 6 months or so, you will be able to drink in moderation. I’ve been on meth for over 10 years. It works well for me and I like my wine, and cider and the occasional whisky.

    Finally, have you tried googling ‘The Spoon Theory’? It might help your friends understand. Good luck, Jordan. I hope things turn out well for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • ShulaArcher
    ShulaArcher Member Posts: 174
    edited 30. Nov -1, 00:00
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    Hello

    Just writing to say welcome, to send sympathy and good wishes. It's quite something to have come through denial and admit acceptance. You've come to a good place, ie here, for support and advice.

    Shula
  • Beth11
    Beth11 Member Posts: 4
    edited 30. Nov -1, 00:00
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    Hi Jordan,

    i have only been diagnosed with arthritis and tendonitis this past week. I'm also 19 and I totally understand how it feels when your friends don't understand. While mine affects my wrist and so is not as delibilitating as being stuck on crutches, it's really hard trying to make people understand that you're too tired and too in pain to be bouncing off the walls the whole time.

    I'm pretty new to all this and still in the shock/surprised phase so I can't offer much more than my understanding. But believe me when I say that I understand how frustrating it is. I feel old and boring or at least like my friends think so.

    I have a friend actually who is on crutches permanently with another condition who is able to drive an automatic - i don't knwo if this is a possibilty for you, you could also look into specialised cars in the future that have the ignition and breaks around the wheel. Again, this is probably more possible in a few years when you've got some disposable income! My friend still very much goes out drinking. Although I am not advising getting smashed, it might be worth hunting out the bars and clubs with lots of seating, which is what my friend does, so when you do start to get uncomfortable at least you're not stuck in a sweaty, heaving crowd and can have a seat and maybe a redbull to keep you going. As for heels - totally guted for you, who doesn't love a great pair of heels?

    However, instead you could save the money for some gorgeous flats instead. You could even make it a thing about always wearing really awesome shoes. Nice shoes always make me feel better :)

    Anyway, sorry I couldn't be much more help. Good, good luck for the future Jordan, wishing you all the best.

    Beth
  • Sezeelson
    Sezeelson Member Posts: 133
    edited 30. Nov -1, 00:00
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    Hi Jorden

    I really feel for you and thinks it is brilliant you have managed to come to terms with your arthritis and decided to face it head on! I have just join this forum as I feel I am finally comfortable enough to talk about it to others.

    I am 21 years of age and I was diagnosed as a 16 month old baby. I have it in all my joints. I have had to fight my way through life when others have tried to put me down I have gotten angry at friends and family for thinking they know what I am going through or pretending that everything is going to be ok when it is not. I have this for life, it's not going to suddenly disappear. I have always been called lazy when I just don't have the energy, people don't understand how much of an effect arthritis has on your body and it is not just physical pain.

    I only have 2 real friends and 1 of them is my ex partner, I have given up on being around people who think I don't like them because I can't go out with them or what ever and sometimes I just end up losing touch with people.

    It's not all bad though. I was told I would definitely be in a wheelchair by the time I was 20! 1 year on and I am still walking and so far without support (apart from bad days) you have to use all your joints no matter how much it hurts! If you don't use it you will lose it. Swimming in my opinion is the no.1 thing you can do.

    I was told I could never drink, but I did! I was on methotrexate at the time and as long as you drink smaller amounts or weaker strength booze you can still enjoy a beer to 2 with your mates :)

    Find something your passionate about! It helps to have something that makes you stronger then the arthritis makes you feel bad. I have recently found my passion in life which has turned out to be dogs! I rescued an aggressive, Ill mannered pooch and has ended up turning my life around!

    Stay strong! I'm always about if you want a chat :)
    Sarah
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    jordanr111 wrote:
    Hi, I'm Jordan, I'm 19 and from Northern Ireland.

    I was diagnosed with polyarthritus in 2008 - saw my illness arrive in the form of a pain in my right hand which stopped me from being able to grip a pen, since then, I've had to use a laptop and am isolated during exams because of this.

    When I was diagnosed I specifically remember insisting "its one joint, this is a one off, won't happen in any others"... how wrong was I? I've been taking piroixcam since then, and had an operation to remove the inflammation in my hand.

    Fast forward to 2012, I've just received results of an MRI showing inflammation in both ankle joints and in my posterior tibial tendon. (I also have tendonitis) So today when I was finally prescribed Methotrexate, I let go of denial, and made the sudden realisation that I have arthritis and I have to live with it. No more denial, I decided I'm facing it head on. This is with me for life, and I'll have to come to terms with that.

    I know there are people far worse than I, but at 19, being told you won't be able to drink, or wear heels. You're too sore, and tired to socialise, well it feels like your worlds ending. I can't walk without crutches, I can't drive anymore. and it sucks!

    Anyway, with the acceptance of my illness today, I decided I needed to talk to someone, anyone, as long as they understand and share my frustration

    (I'm sick to the stomach of my friends saying, 'Its ok we'll come over and have a dvd night, we don't have to go out' or 'Its ok, you'll be fine' - i love my friends but they don't get it)

    Feel free to post below, especially if you feel similar.

    jordan x

    Hi Jordan, I'm 20 and have Rheumatoid Arthritis and ankylosing spondylitis. I was diagnosed with Arthritis as a child and have tried most of the drugs available, as has already been said its surprising you have not been on any of the long term drugs yet to try and control the symptoms. Things will get better when you find a medication which is right for you, I can't say things will get back to normal for you because everyone is different. Some of the drugs available now are very effective in controlling the disease and I for one can tell you that there has been periods in my life where I have virtually been unable to walk for months at a time, but things did get better with Anti TNF drugs for me. From my understanding tho Meth and a few other drugs are normally tried before the Anti TNF drugs as there is more known about the long term side effects etc. I hope you find that the meth works for you and you begin to notice a difference!