Finding my support groups…

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… So I started training and dancing in January 2012, I lost more weight and toned up (I’m still working on it) but noticed that even though my pain was reduced, I was still unable to sit up for more than 30 minutes without being in pain for the rest of the day. The hour grocery shop would have me nearly in tears on the way home. Every time I worked out I was in agony afterwards. Doing nothing but rest was even painful. I guessed I just hit a wall and figured I’d get over it and keep getting stronger and eventually the pain would subside.

After my wedding in September 2012 I began looking for more ways to get back to ‘normal’ and get rid of the pain. I joined a lot of online support groups (I didn’t know there were so many!) and started to read about many experiences. I noticed after about a month that I never once heard of someone saying that they got better or rid of the pain though. Which I found odd because my physio specialist said that with strong muscles these symptoms would disappear. Were these people in the support groups complaining about pain that exercise would surely remedy? Were they just lazy? Why isn’t there someone out there who has succeeded so I can grill them about how they got back to ‘normal’?!

That’s when I started asking questions and got answers I didn’t want. This condition is for life and it’s a progressive illness, which means it will just keep getting worse as I get older.

WTF?!

… yup. So then I went into denial mode for a couple weeks looking for the differences between me and my support groups. Denying that I could relate to their posts and ‘knowing’ that I could overcome this, I just needed to workout out more and be super strong. I could do this! Yah! 😀

Eventually I re-evaluated and admitted to myself that my condition had become worse in some ways over the last year, definitely over the last 5 years, and that I could relate to most of my support group friends. I told Charlie one night very casually after putting it off for a long while (we tell each other everything so this was so hard!), I was almost embarrassed in a way. I don’t know why I didn’t want him to know. I guess it’s because we just got married and throughout our whole relationship I’ve always been such a strong person. Now we get married and he’s left with this weak disabled person. It’s just not sexy… and that’s like my ‘thing’.

This was just over a month ago and since then I’ve been trying to find different ways to tackle it while dealing with more new obstacles (?!) that I’ll be blogging about soon. The nice thing about joining my support groups is finally knowing that there are hundreds of people who I can talk to who’ve had very similar lives (especially ex-gymnasts and dancers!) dealing with these irritating symptoms and went through a lot of the same things. I’m not crazy, this pain isn’t all in my head and there are so many of us dealing with daily pain. It’s a sad thing but so great to know I’m not alone in it. None of them patronise me, blow me off or tell me I’m young and deal with it because they know exactly how hard it is to live with constant, relentless pain.

I would never have found so many answers and would never have come to cope as quickly as I am now without them.

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