Monday, November 16, 2009

Am I Ashamed of my Fibromyalgia Symptoms?

This morning, I woke up with sharp pains in my lower back and glutes, and heavy feelings all around my body, especially my legs. I pushed myself to get up and moved around a bit, but it was impossible to loosen up my muscles. I went for a walk hoping to walk the tightness off, but instead I felt fatigued, which shortly after I fell hard into my bed and didn’t get up for the next five hours.

I didn’t do anything out of the ordinary this weekend when it comes to training. I ran 4 miles on Saturday followed by conditioning work, then on Sunday I was on the bike trainer for an hour at moderate intensity. I did yoga afterwards. I did have a few weeks of long work hours leading up to it, perhaps sitting for long hours for weeks did it for me at the end…but regardless of what the real reason was, I was frustrated.

I have been in a new relationship this past couple of months. I have to say, having fibromyalgia and managing a relationship is tougher than I thought. I have laid out my condition from the get go and I know he knows that I have it, but I know for sure he doesn’t have a clear idea as to what is entailed in it. I am so outgoing and energetic and active normally it is difficult for anyone to imagine me completely helpless in bed, completely shut down from my world. But that is the world that I have to face, and unfortunately the person in my life has to face it too...eventually. Now that, people, I have been having a really tough time with. I never want to expose myself to my significant other when I am weak, I only feel comfortable with my strong side. It is a silly kind of pride, I know. But to be blunt I have no idea how to deal with this kind of situation without making either myself or the other person potentially really uncomfortable.

So today, over the phone, I had to totally muster up all my energy to sound chirpy despite the pain and discomfort, as I was too worried about how he would feel about me being completely helpless and useless all day. He asked me if I needed anything – I said no, it’s just my every day thing, I’m used to it, bla bla bla… I could not get myself to say, yes, it would help me greatly if you could come by and help me have some water and eat some food, cuz I’ve been just starving all day long. But no, I had to sound in control and the last thing I wanted was for him to think that my condition could turn me into a weak person. Not that I think he would think that way, but it is my stupid ego to always wear the image of a strong person – because I am! Vulnerability is not my element…which ends up hurting me at the end.

But then I thought – why am I so cryptic and silent about the fact that I still have fibromyalgia symptoms, especially when I’m actually having them – am I ashamed? I am certainly proud of my accomplishments within the confines of my conditions – in fact I am grateful for being able to do more than I or anybody else had told me I could do. But what about my weaker side, am I proud of it? Perhaps I have been constantly touting my strong side and what I’ve accomplished, but been hiding my weak side, because, I was shameful of it? I am shameful of the weakness in me, when it was this very weakness that made me strong?

I know there is a balance in this life that I have to find – while pursuing my health by doing the things I do, I need to accept myself as someone that can be very weak and need others’ help from time to time. I only recently opened up to my closest friends to help me when I’m vulnerable, so I know it is going to take me some serious amount of time to let anyone new in my life to understand me and let that person see my vulnerable side. It is harder than I imagined. I really care about this person, so while I want to make sure I don’t overwhelm him with what I have, I would also be fooling him if I only showed my strong, energetic and strong side. But for now, I will admit I do still feel comfortable with my strong side…for now. In the mean time, I have to learn how to be vulnerable without feeling like I have to hide under my bed.

I shouldn’t have to feel shameful for my symptoms. It’s something I need to embrace, not merely cover up with my training and racing. I am not in denial of the fact that I have fibromyalgia, perhaps I never wanted it to rule my life anymore, but I do need to accept it a little more and embrace the fact that I have my condition…but be more proud of the fact that I’m working hard to overcome it.


VinaMist said...

Your story is so inspiring. Thank you for sharing. I myself have fibromyalgia and I run regularly when I can. Just blew my knee out, ACL and tore everything else up. I fell down a hill.

I also have a new boyfriend whom is very supportive of my Fibro. He has seen me on my good days and a couple bad. He has not seen me entirely though. I am nervous as he will be taking care of me after my knee surgery. I hope he can handle all the bad side of fibro too and still understand I have good days. My fibro fog is still an issue to get use to. As you I hid my fibro and get ashamed, yet it has made me strong.
Good luck to you. If he really loves you he will fully understand.

((hugs)) and Cheers!

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gp said...

hey minnie

i understand what your going thru, it is hard to explain to people. I can do amazing physical things like a sprint tri in 1:36 and yet have trouble climbing the stairs at times. this is the most frustaring illness and yes I do feel ashamed as you mentioned at times and I do my best to hide my problems even from my wife and children. I am inspired by your blog and your struggles I relate in so many ways it is almost like I have written it myself.

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salsabike said...

Minnie, I have had fibromyalgia since the early 90s. Used to be a dancer, did nothing physical for the first decade because of the severity of the pain, am now doing triathlons (because the pain by itself has eased off, although it's never gone).

I would say---try to be kind to yourself and patient with yourself about this stuff as well; that is, the psychological work it takes to live with this. It takes awhile to sort through these feelings, which are a pretty complex set of emotions.

I like checking in on your blog. You're a strong character and I don't doubt that you will work out these feelings over time and find how to deal with this in a relationship.

small town small times said...

I've been thinking of you. It's been a long time since I checked in as my computer and internet service had failed me.

I hope your flare up did not last long. I hope your relationship is still going well.

I've had back pain for the last three days and am trying to remember that sometimes we do things that give us back pain, right? Doesn't mean I'm having a flare up, right? Right.

As someone who could never be vulnerable until I met my husband, I can only tell you this: you must let people in to make your relationships real. Being weak in front of someone else takes strength. Take care.

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Vanessa said...

I am so grateful to you for your total honesty here on this blog. One of the questions which has been nagging at me for the last four days since my flare-up is, 'How many fibro friends are able to be totally open, honest and vulnerable'with their partners especially in the latter part of your life when you may land up with a terminal illness? Can you really depend on your partner/spouse or would they abandon you emotionally or physically? I am asking this question because I am experiencing this on a emotional level with my partner who goes to his cave ereytime I become fatigued or ill. I truelly want a partner who is emotionally available when I am at my weakest, is there one out there at all? Let me know your thoughts on this. Well done on accomplishing so much even with Fibromyalgia. You encourage so many of us to perservere as things will get better

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Diana Shady-Robinson said...

Honestly, I couldn't imagine being you. You are an inspiration. In the winter I can barely walk out to my car, let alone brush it off and get my son inside. But your story gives me hope that I can take control of my body, my symptoms, not just the pain but the poor circulation, the fatigue, the stiffness, and the insomnia. Thank you for sharing your story. You make it easier for me to have an 'I can do' attitude. I hope to follow you through this journey.