Walking The Line

 

Lines are funny things. You either cross a line or not. The shortest distance between two points is a straight line. They can be sharp or fuzzy and can keep you going on the right path. The wrong line can appear to be the right way but lead you to a dead end or detour. What does all this line talk have to do with you, me or any chronic illness? The same question crossed my mind when I was getting told, or rather strongly lectured on what to do and not to do in my every day living by my well intentioned physical therapist. It was compounded on by my husband and several friends later that day when I was told by everyone to take it easy. Easy…while taking care of three young kids, holding a house together and recovering from three joint surgeries while dealing with numerous flares over the past ten months. Cue the almost incredulous laughter on my part.

After I calmed down from laughing at what seemed to be a nearly impossible request, the concept of the line popped into my very frustrated brain. It’s something each of us walk along while trying to balance the demands around us. Throw in a chronic illness and it’s enough to make us fall off that line or at times struggle to just hang on. In the same manner, the same line has kept me going, the demands made on me has forced me to look beyond the illness, at times even laugh at my situation or others comments that inevitably get made.

My question that I have yet to find an answer to at this point though when I walk the line is this; what is the right balance between rest and pushing past it in order to live as normally as possible? If I lay low, watching movies with my kids or resting on my recliner, I tend to feel lazy. I watch other moms around me doing more active things with their kids knowing that I’m not able to do the same with my own. If I am more active and push to play outside or do a lot of hands-on housework, my joints swell and I pay for it, resulting in the rather spirited discussions at physical therapy and with various well intentioned friends. What’s any of us to do in this situation? We are all here in some way or another I’m sure thanks to our “invisible” illness that is very “visible” to us and our families.

This daily struggle has frustrated the hell out of me as of late because most don’t understand what it is really like to have to have to make these kind of choices every day. The people around me are sweet and very well intentioned so it’s not that I’m not grateful for their caring suggestions. It’s more that I don’t know how to find a balance between what my brain wants to do and what my body needs me to do. Until the right balance between rest and being active is found, I will continue to have a love/hate relationship with this ever present line. Then again, I could always cut the line up and make pretty pictures with it, but I digress. My question to you is, what kind of balance have you found, or are you struggling with this line as much as I am right now?

 

Article written by staff writer, Christina Stevens

Christina is married with 3 young children while managing moderate to severe Rheumatoid Arthritis. While technically a stay at home mom, she volunteers as instructor chair for a weekend event with Women in the Outdoors, an amateur radio operator and writer. You can find her on twitter at @ss_sunset or on Facebook at @ss_sunset

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  • veann

    i struggle with the lines everyday and the worst thing is when people keep moving the lines. one day they tell you that you are being lazy then are upset that you pushed so hard your in bed for days. if i get tiered of the mess and do it myself then i’m down for days and by the time i’m up its the way it was. but i i just leave i’m frustrate and bitchy. hens come the fb games lol my farm is always clean and organized and is the way i left it when i come back lol

  • Hi again, should have read all of the reply first. as I mentioned in a different response I am a clinical social worker through and through, whether or not I’m working. This is easier said than done and I’m trying to take my own advice……. NO MORE GUILT! !! Having a chronic illness is a head trip all its ownit doesn’t next any internal fuel. We didn’t ask for this for and also everything feels different I believe the very best of us still exists. I am blessed with a wonderful friend to remind me of this and what I have forgotten about myself. as far as feeling guilty about the children I don’t have any so forgive me if I’m out of line. What I do know about them I know when are about them and than they no they are loved. I’ve seen the specific smile and look that only a Mom gets from their child/ren. That is the purest reason to get rid of that guilt. Hope it helps. sorry if it’s too long my new phone lets me talk to text!!!””

  • I do struggle with that line trip on it everyday. just when I think I have it figured out the line change the rules. my ultimate line comes with a physical warning a feeling that’s hard to explain. but it means business if not heeded it will drop me literally. I’m currently unable to work and have no children. so my line is different but we end up in the same place. 1 line I know not to cross is a vacuum. I like the idea of kind of the line, maybe we can combine them into mosaic!! Best wishes And if a great epiphany hits and I can remember it haha, I’ll be sure to share.

  • Taylor

    I have a fairly….unorthodox job. A job that requires more physical activity than my body can handle and I pay for it in spades. I ride horses for a living. Sounds fun, and it would be more fun if I could enjoy it. It’s the only thing I love to do and, as I lay in bed paying the price right this very second, it’s still all I want to do. I live with the line. It haunts my dreams and steals my life.

    I fell off of a horse and got trampled, and if that wasn’t bad enough, the physical trauma has caused an excruciating flare. So what do I do? Become a totally different person with a completely different skill set? That seems to be the only option…and, like most of my “options,” it’s an impossible one. Have a life or walk tomorrow? Clean the house or stay up past 9pm? Walk the dog or get up early? These are the questions we all have to ask ourselves and the frustrating part is that these aren’t exactly what I would call options. Lupus or any chronic illness is a lonely, difficult, guilt-inducing struggle. A struggle that few understand.

    To deal with all of the above, I’ve come to take a certain comfort in the “line” and my lack of legitimate options. Too many choices can be confusing, after all…at least I know my limitations which is more than I can say for most people. And at least I’ve caught up on my reading 🙂

  • Nona

    Walking the line is a daily, sometimes hourly struggle for me. The guilt I feel for resting when I have a 3 year old, a husband and household to take care of really beats me up emotionally. Guilt for resting, instead of paying the price for pushing myself is my most ominous struggle. I too see other Moms who are outside playing with their kids, while I can only (on good days) watch from the sidelines. My many chronic illnesses have left me a shell of my former athletic, hands-on self. Just taking care of myself and my endless doctor appointments is a job unto themselves. But the worst part of my “invisible” chronic illnesses is by far guilt.

  • I’m struggling with that line big time right now. I’m preparing to move out of state and need to pack everything I own. I’ve crossed it and I’m paying the price now – it’s Wednesday and I’m still paying for what I did last Friday.

    It’s not just things I want to do. It’s things I need to do that are out of reach and I pay the price. Thank you for writing this. It made me feel better about having to stop after no more than walking down the hall to weigh my carry on bag and keep it under 20lb.

  • Crystal

    I’ve noticed that over the years my line has moved, it even moves day to day. All anyone can do is hope the line does not move suddenly leaving us on the wrong side. I’m lucky that I have disability so I’m not struggling to work but we have a surprise baby on the way so I will be learning to walk a new line this fall.

    To keep from feeling lazy when I can’t do anything I knit, I usually have 2 projects going, one brainless and one I need to think just a bit. I’m now finishing my first sweater almost 2 years after I started it.

    For me knitting kept me sane when I was at my worst and could barely leave the house, even when I could not handle light I learned I could listen to a book and knit on something very easy. My cat who always snuggled with me decided that the first shawl is his blankie.

    I hope all of us keep getting better at walking the line and hanging on when it suddenly moves.

  • Judy

    oh,boy,can i relate! somedays are fantastic, then comes the inevitable flare! i just had a flare that lasted over a week. most only last a couple of days, cause i monitor my pain level carefully. i am on pain management now, which helps. i find myself trying to get some stuff done every day, but sometimes, it just ain’t happening! multiple spoons to you!

  • Holly Austin

    So well said. I struggle with that line all the time. It’s complicated by guilt about not doing enough, stress about all that needs to get done *somehow*, and my own furious stubbornness in refusing to give up all the active fun things in my life just because of a damn illness. I get tired of hearing people tell me to take it easy because I just don’t WANT to, even when I should, and then I start feeling guilty for being irritated by well-meaning people’s caring suggestions. It’s so good to hear from someone else who understands how it feels!

  • I do the most I can that doesn’t cause a flare. And I’ve stopped caring whether that looks or feels like I’m being lazy.

    Now, there are certain things that I allow myself to do that I know I will pay for later, like when my sister came to visit recently. But I prioritize and allow those occasions only very rarely when they are worth the flare.

  • Oh yes, I know it well. Do I go to the gym and try to get my joints moving, or just soak in a warm bath? Do I try to work in the office so there’s not the distraction of home, or do I work from home so I can go to bed when I get tired? Do I try to do some housework and teach my kids how to do this important lifeskill, or do I tighten the budget and hire a cleaner so I can use that precious energy for something more fulfilling?

    I’m so glad my 17 year old just loves to watch bad horror movies! We lie in the loungeroom together watching badly-made movies laughing at the continuity errors, badly shot sequences like where you can see the springboard a stuntman jumped off, things that are so utterly unbelievable as to be hilarious. I usually sleep through half the movie – and my son still considers he had a great afternoon with mum.

  • Christina, I can see that I am not the only one either. it is really hard to balance our lives. It is just like “spoons.” We have to balance them as well and make sure we have enough to get through the day. Great article, thanks for sharing. <3 🙂

  • Fiona

    Totally ! Thought I was the only one ” I was sure a wasn’t ! ” but after a while u start to think come on! Family & doc say take it easy ! Impossible with children&uni&housestuff! I push my body till it drops then stuck in bed, I do try to rest but feel lazy ! Oh for being able to do jobs withjust the power of our brains instead of trying to relie on faulty body’s ! My new OA lable has helped hehe well stopped me from being able to bend and get back up so that has helped curb my impulse to pick up after my man & kidlet but still happens and get stuck ! Balance if anyone finds do DM ME ! I could do with tips !