Posted in Chronic illnesses, Tough Choices

When it comes down to it, we are all just getting by

A Game Called Unpredictability

A few of you have emailed me wondering where I have been especially since I often post one to two posts a week.  You have asked if I have been doing okay and feeling well, I tried answering those questions but the fact is, I don’t quite know. So maybe I am well, maybe I am not – I just don’t know. I never know because living with rheumatoid arthritis and fibromyalgia is like a game called “Unpredictability.”  I bet us RA bloggers could invent this game using scenarios that require us to adjust at every turn. 

  • You have brain fog, go back two spaces and start your work day all over again. 
  • You lose 1000 points for that massive flare-up that just went from bad to worse in 30.5 seconds.  
  • You are having a good pain day, you move up 3 spaces, 1 space back for overdoing things.

I suppose a game like that would get people to understand what is like living with RA. You would think all these years I would get used to the unpredictable nature of this disease and it is not easy. Four years since diagnosis and seven years since I started having symptoms. My fibromyalgia symptoms go as far back as my teen years.

I don’t do pity parties

Well this is not a complaint post or a “woe is me” post. If you have followed my blog long, you know I don’t do pity parties because – quite frankly – they are ugly on me.  The last few months have been difficult with my symptoms coming and going more often than a train service from here to Tennessee (I know that was lame and the only thing I could think of). I welcome the good days like I do a winning lottery ticket and I hate the bad ones as much as I hate fast food especially from McDonalds (which angers everyone in my home). Blame that on all my hypersensitivities that I inherited from my family member, fibromyalgia. So yes, I have been struggling for a few months now but the flipping flopping of my symptoms from good to bad and back and trust me, it is more painful than watching politicians doing the same thing in their policies.

Last night, I felt more overwhelmed than usual. It was to the point where I was near tears.  I recall saying out loud, “I just want a break.”  My three year old was nearby and when he realized something was up, he sat in my lap and gave me my hug.  Leave it to kids to know precisely the right moment to put a smile on your face. I reminded myself that I am very blessed even though I have been dealt some really tough blows. My kids have a roof over heads and food on our table and I am employed.  I couldn’t ask for anything more but sometimes the pressure mounts and I feel like I am carrying the world on my shoulders.

This morning as I drove into work, I thought about my late brother. Missing him doesn’t get easier no matter how much time has passed. This Friday, August 31 marks seventeen years since we lost my dad and while I still miss him, grieving my brother seems to surpass that. Maybe it is that his loss is more recent or perhaps it is more profound.  When you lose a parent, you lose the past but when you lose a sibling, you lose the past, the present and the future.  Of course that grief is so much bigger. For me, losing a sibling is like losing a limb – it is part of you will never get back and it is a part that every time you look will still be gone.

We all struggle

Thinking about my brother this morning, I thought about what Moe would say to me if he could. He would probably tell me to not cry so much because someday we would be together again.  He would probably tell me to stop being so afraid all the time.  That is when I blurted out loud: I am afraid that I am not good enough to get in heaven.  I am afraid that my kids will lose me before they have had an opportunity to grow up. I am afraid that I will become disabled and I will not be able to take care of them or provide for them. I am afraid that Mom’s health will take a downturn and I won’t be able to take care of her if it does because of my own health needs. I am afraid that I cannot be everything to everyone who needs me to be everything.

Before RA and fibromyalgia came into my life, I was such a planner and I didn’t worry about what anyone thought of me. Now with RA and fibromyalgia, I don’t always feel strong or in control.  I hate that my life is so unpredictable. Again, I am not one for pity parties and that is why I want to be so strong all the time. I want to not feel fear or anger or hate but sometimes I do.  I know that all things make me human but sometimes, I wish I was superhuman. In so many ways, I am like most of you trying to make sense of a life with chronic illness and quite often, it doesn’t really make sense.

I struggle with other things – not just RA and fibro.  I struggle with my faith and I wonder how I can be a better person in God’s eyes. I struggle with how society views me as a Muslim and I often I don’t tell people that I am Muslim because I do not want them to treat me differently. I struggle with my parenting and I often wish I had more time with my children or that I could participate more in their schooling. I struggle in my personal relationships and I don’t always know if I can give the best of me in those. I struggle with my career and I hate that my health gets in the way of my being the best I can be at my job. Despite all this, I know these are the things that make me human. These are the very reasons why people want to read my words and I am grateful that I can offer hope when it seems like hope is impossible.

We all struggle with something and/or a whole of somethings.  Most of us just fake it and hope we make it. We struggle in life, in our jobs, in health and all the things that we try to perfect.  We struggle to be better and we struggle with a variety of challenges because things happen, and circumstances change.  Most of things in our lives we cannot control and most of us often ask why and the fact is God only knows why and He isn’t talking.  When it comes down to it, we are all just getting by.


You can also find me:

Not Tolerating Intolerance

Adventures in Chronic Illness


11 thoughts on “When it comes down to it, we are all just getting by

  1. Lana: This was certainly NOT a pity party, but it’s very obvious you’ve been dealing with a lot — not only lately, but for a while. It’s perfectly natural to worry about all those things. One of the things RA has taught me is that I can be all things at all times. It’s also taught me not to be so hard on myself and that some days whatever I can give/do is just plain going to have to be good enough. I wish I could reach through cyberspace and lift some of the load off your shoulders. Just know you have “friends” in the community who do understand what you’re going through and we’re here to support you if we can. Hang in there.

    1. Thanks Carla. I was trying to get out some of those feelings and for me, writing is my outlet. Thank you for taking the time to read my post and thank you for commenting.

  2. Hang in there Lana, and no it was not a pity party, just plain telling how it is living with RA and fibro. We all have felt like you described at some point or other, I can relate to your brother since i lost my sister in 1995 to cancer. That was harder than our dad’s death in 1988. As Carla said, take the good days and celebrste and allow yourself to do just what you are able and no more, for it will be there tomorrow for us. i truly enjoy reading your blog, you put into words of what many are feeling. Thank you for that

    1. Thank you for your kind words, Vickie. I often say my ability to express what I am feeling in words is both a gift and a curse but I guess it is important that I can. Thank your taking the time to read my post and thank you for commenting.

  3. I like your game analogy of RA and fibro. WHat a great way to describe it, Lana. The brain fog I find so frustrating and embarrassing.
    I don’t see your writing as a pity party. You’re just expressing what you feel and hopefully writing does give you some relief. It sounds as if RA and fibro feel overwhelming and you feel a lot of pressure to be ‘better’. have you ever heard the term, ‘wounded healer’ – someone who heals others based on their personal experience? I think you are quite a gifted healer to your children, your readers, and those you meet. Sometimes those who struggle the most, offer the most, without even realizing it. Blessings to you, Lana.

  4. Didn’t view this as a “woe is me” post. I gave up a while back on trying to make sense out of living with a chronic disease. I just live for the good days and do my best on the bad days now. Hang in there Lana and take all the time you need, we will be here. btw, I’m right there with you on the flip flopping of good/bad days and McDonalds.

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