Sunday, January 10, 2016



Why I Don’t Always Want Your Help

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    I have been sick for twenty years. My diagnoses are Sjogren’s, Mixed connective Tissue Disease, and Fibromyalgia. My chart also says Inflammatory Arthritis. I think that’s redundant at this point, but it gets me my number one medication. Anyway, the point is, I’m sick and it’s not going away any time soon.
    The point also is that all my conditions are degenerative. They get worse over time. And I have had them a long time. So yes, I am much worse now than when I started. And that’s OK. That’s what I prepared for. I don’t like it. But I always knew it was coming.
    Which leads me to this: there are things that I used to be able to do that I can’t do anymore. A lot. More than I actually care to admit really. Like the standard arthritic inability to open jars of any kind. I’m an Italian who cannot open sauce jars! Oh! And there’s this... We’re old school. My car does not have power windows or locks and my fingers just don’t have the grip anymore making me an inadvertent victim of child safety locks on my own car doors! I am waiting for the day I lock myself in!
    I also can’t carry stuff anymore. Not just up and down stairs, but almost anywhere. I am ‘Queen of the Dropsies’. Whether it’s losing my balance, too heavy, or my insanely weak hands; I drop everything unless it’s strapped to my body. Which I have actually done with bags of groceries. That did not go well.
    So with these issues (and more) after twenty years of being sick, you’d think I’d be grateful for any help I can get. But that’s not always the case. And here’s why: With all I have lost the ability to do over the years, I need to know there are still things I can do.
    Don’t get me wrong here, I appreciate help. Especially when my body is in full blown attack mode. But on days when it’s calm, I need to feel normal. It’s important for my psyche. And I need to be useful. That may be one of the biggest things I have lost-my purpose.
    You see, I have struggled all these years not to give in to this disease. I tried to do everything I could not to let it show. I raised a family, I held a job, I cooked and cleaned. I know I didn’t do it all well, but I did it. And over the years, I slowly gave up things here and there that hurt the worst or I just could not do anymore. And I accepted it because I was able to keep doing the big stuff.
    But that changed a few years ago when I had to stop working. It changed even more last year when I had to go on disability.  Just like people are identified by what they do for a living, those of us on disability tend to be identified by that word and all of its negative connotations. Like getting something for doing nothing or being paid while sitting around and doing nothing. Being purposeless.
    So now I still struggle against this disease. But not to keep going and do everything. I know my limits and I accept them. I struggle to keep my identity. To keep my purpose. And a big part of that is continuing to do what I can when I can. So although I appreciate all the offers of help when they come, please understand that when I don’t accept them, it’s because I need to be doing it myself. I need to be purposeful. And for this short time, I need to be normal.

     

Friday, January 1, 2016



A New Start

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   Happy New Year Everyone! What an exciting day! I have to say, I love New Year’s. I think most people do. It’s a chance to start all over again even if it is arbitrary. So many resolutions are made! I used to make them myself, but I stopped a few years ago. I realized something surprising about them. At least for me. Resolutions stress me out. A lot! And that’s not what they are meant for. And definitely not what I need in my life. How bout you?
    You see, the resolutions I always made were meant to make me better in some way. Like losing weight. I don’t know how many years I had that one on my list. Or how many years I failed it by March. And that depressed me. I ended up feeling worse about myself. All because of something meant to make me feel better. If that’s not irony!
    I did this until I realised that I can’t just change because it's a new year. Our minds don’t work like that. We have to be truly ready to change. No matter what that change is. You always hear that an addict cannot change unless they admit they have a problem and are ready to accept responsibility. It works the same way for all of us.
    Not necessarily the admitting a problem part, although with my weight I certainly do have issues to face. But accepting responsibility for where we are in our lives. And that includes those of us with Chronic Illnesses. I don’t mean that to sound as if we are to blame for our diseases. I certainly did not get married, have two kids, and say “What would be the biggest challenge I can think of to add to my life? I know! Sjogren’s!” None of us did. But, we are sick and that sickness is our responsibility.
    By that I mean we need to be the ones to deal with it. To treat it. And to advocate for ourselves. Doctors cannot heal us. Unfortunately for most of us there is no cure. And that can be very frustrating for a Doctor. Some even shut down around us. I am not letting them off the hook, I am just making a point that they are human too. And that we need to be our own experts.
    But we also need to be our own office managers. We need to learn what to allow into our lives and what to turn away. Part of having a Chronic Illness is the fact that there are too many medications, too many doctors, too many tests, and too many demands on us. And this being the New Year, I know way too many who are resolving to be better parents, better employees, and have better health. But I say don’t. I say resolve to put less stress on yourself by not resolving to do these things.
    As I said in the beginning, resolutions can be a losing battle. So is the idea of controlling our diseases. So don’t. Allow yourself to be who you are, disease and all. It is a part of you but it not who you are. It does not define you so don’t give it the power to. Remove the stress by removing the fight to be “better”. Roll with the waves rather than trying to stand and power through them. That does not work.

    I know this sounds easier said than done. I’ve tried and succeeded. And I’ve tried and failed. Miserably. But I can tell you that when you succeed in removing the fight from your life and just roll with it, the rest follows. When you remove the stress you put on yourself about being “better”, you can actually be you. And that is perfect.