Wednesday, 28 December 2011
I've been struggling lately. Not so much with the physical side of being ill. The day-to-day practicalities hold no mystery for me. Most of it is simply white noise now. I know I'm getting worse and as weird as it sounds, I'm pretty meh about that side of things. My recent tests just confirmed what I have known in my heart for quite a while. It's a weird place to be. I'm not happy that I'm getting worse. But I am strangely content to have it made concrete. Now, I don't have to think about it. I don't have to sit and wonder. I can check it off my list and move on, till the next time. But the overall emotional/spiritual/psychological toll is exhausting.
I can't even pinpoint what it is that is so exhausting. It's not like there has been a specific instance that stands out. It's more like the sea washing over a rock. Slowly, wave by wave, the rock is eaten away. You can't even detect the individual bites with the naked eye. But all of a sudden where there was once a great rock there is now naught but a pebble. Chronic illness is like the sea, and my reserves are very much that pebble. There is no real respite. Respite, if you get it, comes in the form of a less symptomatic day, rather than a full day of freedom. You get drawn into a cycle where your entire existence begins to revolve around illness. The search for answers, cures, meaning. You suddenly look around, and you, and your world, are defined by that which you so despise, and you don't even know how it happened.
When you say you are meh about the physical side of things people tend to bombard you with the "but you can't give up line". Mistaking acceptance for defeat. The reality is far from it. I still do what I have to do to manage both Bob, and now, my gastric system. I take my pills, I see my doctors, I take the tests, and do the research. But I am cognisant of the fact that there are aspects that I cannot change no matter how hard I try. And part of the challenge of living with a chronic illness is to pick your battles when you have limited resources. It's about finding your priorities. And deciding what you want for your life. What those battles may look like will be different for every person. But for me I know there are things you can change and things you can't, and spending a life focused on the can't side of the ledger is slowly crushing me.
I have been fighting the good fight for nearly six years. I have a pretty good handle on where my health is presently and where it is going. Early on, focusing on my health at every opportunity served a purpose. It gained me access to a diagnosis and a doctor who understood my condition. It helped me to understand what was happening to my body and options for treatment. It helped me to find a community of people who were dealing with the same illness and provided me with a support I so desperately needed. But as time goes on needs change. Focusing on my illness every second of every day is no longer of benefit. In fact it is problematic. Practicalities aside, such focus is a thief. It steals all your time until there is no room left for life. It tells you lies and makes you believe there is nothing of you but your illness. It leaves you beyond exhausted. And I can't maintain that level of intensity any more.
My plan for this year is to find my balance once more. I am having a sabbatical, if you will, from my sick person job. I have worked long and hard at that job, 24hrs a day, 7 days a week, 52 weeks a year, for almost 6 years. I think I'm well and truly due for some long service leave. I am going to reclaim me. Because the reality is that if I don't, I'm going to burn out. The reality is that if I don't make a concerted effort to reclaim me, I'm going to waste what little energy I have. Without effort I will lose the battle for me to illness. Not because I didn't fight hard enough, but because I surrendered my life to something that doesn't even acknowledge, let alone give a crap, about the fight.
It wont be easy. Balance is hard at the best of times. When you are living with chronic illness it can can be damn near impossible. The reality is your health takes up the majority of your life. Whether it is simply the living with symptoms that require daily management, or dealing with a medical system not set up for long term or complex illness. Even when you make the decision to change, obstacles are thrown at you so fast and so frequently, sometimes all you can see are the tracer rounds. But that doesn't mean we should stop trying. It doesn't mean we should limit ourselves. Because the reality is that it is we who limit ourselves, not our illnesses.
I'm going to believe there is more good than bad in the world.
I'm not going to read more journal articles.
I'm not going to surf more medical webpages.
I'm not going to spend hours on forums discussing my health.
I'm not going to think about all the things that I can't do.
I'm not going to think about all the doom and gloom that my doctors send my way.
I'm not going to play into the sick role any more.
Because I can't.
Because for me it's not healthy.
Because for me I want to be something other than the sick girl and all that entails.
I'm choosing to swim rather than drown under the weight of it all.
That's not to say that at times I wont tread those paths. But it'll be on the periphery, and it'll be for short bursts only. Because that's what balance is about. It's not about denying my illness. It's not about giving up. As trite as it sounds, it's about finding me again. It's about making a deliberate effort to find those other aspects of life that give it meaning and bring you happiness. There will be times where I'll succeed, and no doubt times where I will spectacularly fail. But I'm still going to try. Because that's all I can do.
My dear friend, and fellow Dave Grohl groupie, Autumn, put up a video today that seems so appropriate, so I'm sharing it here.
Posted by Michelle Roger at 18:44
Labels: Bob, Coping, Dave Grohl, Dysautonomia, Ruprecht
All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx
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Michelle, this blog has changed my life. I am going to send you a private message but just had to tell you how much I appreciate you and that I thank GOD that you are in my life. Much Love to you always~ReplyDelete
Beautiful Perfect Post Michelle! I have been coming to the same place as of late, you are a step ahead in your thinking and in your conviction. But after reading your blog, I am up to speed. We share the same thoughts on this, the timing is uncanny. Will you still blog? How will your blogs change? This is what I have been thinking about this past few weeks myself...how will my blogs change? I am off to write one, I am surely inspired by yours.ReplyDelete
I love this Michelle - I came to EXACTLY the same point you are at now about a year ago after battling dysatuonomia for almost a decade. We become the illness without even realizing it and lose the people we once were - I'm on a journey to try and find that person again - to LIVE in between the flares. God Bless and I'm wishing you all the best....ReplyDelete
I am Autumn's sister Mag. First, I want to say how beautifully you write to convey your message. We not only need to learn about the illness itself but rather the "person" behind it. I educate myself as much as I can so that I will be able to help my sister when she needs me. Both physically & emotionally. Even just to be her #1 cheerleader.ReplyDelete
I too, suffer from an illness. However, I can't tell my family & friends about it. Because my illness is a source of jokes & labeling. For that, I don't want It to define who I really am.
Hyperadrenergic POTS is taking my best friend. Slowly. And, it breaks my heart. She's all I have. Recently we lost our younger brother Dan. It put an immense amount of strain on her. It challenged my own wellbeing. I pray today & always that I can be strong enough to not cry when I look into my beloved sister's face. Because behind each smile I have is a river of tears just waiting to explode. Just today I lost a job. I'm crying yes. However, it cannot match that river I feel inside for my sister.
Thank you for your story.
I have spent years trying to figure out all my health issues. Finally, this past April, I was properly diagnosed with the last two issues to add to my list. Everything now makes sense. I've backed off of constant research. I've laid low on FB pages. I'm dealing with a balance of losing my mother and gaining a grandchild. I'm finally coming to a more peaceful place and been trying to be me again. I've been knitting all week, even baked something for the first time along time. Yes, I am slowed down, for sure, but I have to live the good hours. I do have to deal with my health, for sure, but i have come to the same place, Michelle, you are finding yourself at. You have expressed this wonderfully in your article. I especially like when you spoke of acceptance. Very well written. Enjoy your life!ReplyDelete
Thanks for thisp post - I came to this same point in 2006 after about 4 years of the same struggles, and then I decided to just live and deal with it. I stopped reading anything online associated with POTS/Dysautonomia, and dealt with things as they came. It was very freeing, and lowered my stress level big time actually. My disease actually felt like it went into remission, because I wasn;t so focused on it. Now, unfortuntaley it's back with a vengance, so I am back online, but look forward to moving on again. And now I have kids to play with, so that forces me to balance a bit.ReplyDelete
Best of luck! Love your writing and will miss it!
BRAVO Michelle! The New Year coming up is the perfect opportunity for all of us to turn over new leaves! I'm right there with you! Just wanted to let you know (as I'm sure many others have) that even if you decide to never write a single word again (which would be a shame! :o) the words you have already written have definitely made their mark, served a great purpose, and saved so many people on so many occasions (me included)--When you write, it is so much like me that I feel like I'm getting advice from my best friend. Please know that my prayers are surrounding you and all of my POTSy friends as we continue on this journey! God bless you!ReplyDelete
Once again it appears you have read my mind and have written what I could not. What beautiful insight and wisdom. Yes, 2012 is going to be different than the past decade.ReplyDelete
Good Luck my dear friend, Jane
Wow Michelle this is so powerful. You are clearly reaching so many people who are growing and learning from your journey. You have a beautiful way of allowing us to walk away with something positive from this. Thank you for sharing yet again xReplyDelete
Well said Michelle. You are right. We all want to feel better but the time and energy it consumes to find remedies and relief creates an energy deficit all its own. My resolution is similar: to let go of negative thoughts and emotions. If it's any consolation, whenever I think of you I think: That Michelle, she's a brilliant writer with a great sense of humor not to mention a wonderful friend. The fact that you're also suffering from dysautonomia is way down the list. It's a part of your reality but it certainly doesn't define you. You have touched so many people around the world like me who share many of your thoughts but can't express ourselves as poignantly as you. I feel like you've found your calling in life with your writings. And I can't even tell you how excited I am to see what's in store for The Dorothy Shoes Project! :)ReplyDelete