Article by Wendy McCance
I’m exhausted. I’m sick of thinking about my health. Here I am in my mid 40’s and I feel most days like I’m in my 80’s. It’s not fair. I feel like I am going through my life in a fog. Carving out the things that are most important to get done each day and pushing myself to do those things is a tricky balancing act. My kids say I am the most hard-working person they know. In my head, there is so much more I would be doing if only I had the stamina to get it done.
Fibromyalgia sucks. There is no other way I would put it. I’m sick of napping in the middle of the day. I’m fed up with cancelling plans because I feel so weak and exhausted. I’ve had it with walking around the block to get some exercise just to come back winded and dizzy. The most exciting thing is the new symptoms that have decided to show up.
Breathing problems and general anxiety are the latest issues I get to deal with on a daily basis now. Yep, I obviously didn’t have enough to work with so now each day I get to gasp for breath and pray I can lay down and rest without having to sit right back up because the breathing is so difficult when I do lie down. My chest muscles feel like they are getting a heavy-duty workout whenever I struggle to breath. It’s so exhausting and painful, but, you have to breath. It’s like those bad workouts where you are trying to push through the pain for amazing results. The only problem is that the amazing results are that I am still breathing. The breathing issue has brought with it horrible insomnia because lying down makes my breathing problem worse. I am so exhausted these days that I cry fairly easily. The problem with that is that crying is tiring and makes breathing even more uncomfortable. Honestly, I can’t even cry it out without exacerbating the problem.
If I was healthy, I would be cranking out a heavy work day. I would have tripled the business because I would have more energy to get through a longer work day. I would be in shape like I used to be when I worked on the line at GM years ago. I would give anything to feel as fit as I did 10 years ago. Now I’m lucky to get in a small walk. Hell, I am breathless just from lugging laundry up from the basement. I end up sitting down on the bed for 5 to 10 minutes after I carry up that laundry hoping to catch my breath.
This is not what I expected when I was a kid. My dreams of life as an adult had nothing to do with crappy health problems that would hold me back from doing all the things I wanted to do. I’ve learned it doesn’t matter how much you are earning or what your educational background is. If you want something badly enough and have the determination, you can accomplish anything. I am jealous of that being the only deterrent to getting out of life what you want. Sure I can still go after my dreams with health issues, the part that makes me want to scream and pull my hair out is that I am much more limited. Your body tells you when you have overdone it. You are forced to slow down. If you do not heed the warnings, you will end up down for the count in bed for days or possibly weeks while you heal from the overexertion you put yourself through. Overexertion that seems like a romp in the park to the average healthy person.
Many days are spent in a dreaming of finding the miracle cures. Maybe a supplement will make all the difference. Yoga, breathing exercises, clean eating, drinking enough water, no smoking or alcohol or caffeine or sugar or something has got to be the cure for what ails me, right?
My head spins with all the information that leads me in circles. I am exhausted trying to figure out how to juggle work, family, a social life and physical activities without ending up in the hospital. I actually attempted the idea of filling in my days with as much of what I wanted in daily life as possible. It worked, surprisingly for close to two months. 4 hospital visits later, 2 by ambulance and I have scratched that dream. Pick one thing, and if you are lucky, you will have a successful day doing the one thing you picked. Pick two things and you are really risking it. Three things and you are guaranteeing a visit to the bedroom for a few days of rest. Trying to fill up my day with everything I wanted, was like a kid going and eating all the Halloween candy in one sitting. It won’t end well.
Welcome to my life. I wish I could juggle everything, but for now, family and work are my choices. A social life, physical activity, even a trip to the mall are way down the list of things I can attempt maybe once or twice a month without a relapse of pain, stiffness and exhaustion.
My favorite time of year is upon us. I love the holidays. I have also come to dread them. By the new year, I will be exhausted. The first week of January will probably be spent in bed. All of the family activities, cooking, cleaning, parties etc… will be things I won’t want to miss, but will slowly drain the life out of me. By the Christmas holiday, I will be stretched out on a sofa somewhere trying to be involved in the holiday action, but feeling like a shell of myself.
Fibromyalgia sucks and I am happy to scream and kick and cry about my predicament once in a while, but it’s no way to live a life. In the end, you are given a particular set of circumstances and it is up to you to get over the bad parts. Mourn your losses, but eventually you’ll have to move on or else you will rip yourself off from the life you have left.
Wendy McCance
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Hi Wendy, Fibro does suck, I have to agree. I have a bug at the moment and not sure if I can work tomorrow. If I get ill, it tends to linger for longer and I am starting to work much more than ever before. I am thinking, have I taken on too much, is everything going to be okay. Being on my own, i feel like I have been bleeding money, rather than saving it and with the expense of my piggies, that is what I have been doing.Winter is really bad for me. I usually get very ill, particularly with a chest infection every year. I manage my Fibro really well, but can’t help going down now and again. I tend to have a lot of energy thankfully, but do burn myself out. My boss in my day job asked me if my Fibro was getting worse lately - Because I have permission to sit down in my job and no one else does. Hey! I have a disability, which my boss has always known about, so what do they expect! My figures are still good. Apparently some other people have not been happy about it, but if I stand up for long periods of time, my legs can start shaking and that makes them worse, if I rest them, they are manageable. If I have a third time of sick this year, I could get investigated, even though I have doctors notes for my two sicknesses and every sickness I have had. Last one was January.
I’m just amazed that you can go to a job. I wish I had the energy to be able to do that as well. Take care and thanks for sharing your experience.
Thanks. I wish my boss would see it that way. Any negativity or worry about my job because of my health, is not good for me. It makes my Fibro worse, which then makes the job harder. I said to my boss, as lot of people can’t even work with it. As I live on my own, I have to work. No one to support me and can’t get DLA.
I’m so sorry. I wish more people understood too. It’s hard when you can’t see pain and exhaustion.
Hi Wendy, thanks for understanding. I think it’s amazing I can do everything I do, I know one day, I might not being able to. I want my boss to encourage me and praise me for what I do, not question it. I just have to put it down to a lack of understanding on her part, and move forward.
Exactly. Have a wonderful holiday season!!
Wendy — I’m so sorry to hear how much pain you’re in. I can’t imagine what you’re going through, though another one of my fellow blogger’s has fibromyalgia and shares the same excruciating sentiments. My heart and prayers go out to you, my friend.
For what it’s worth (I’m sure you’ve exhausted so many offers of advice and cures), have you ever considered the possibility of more going on than physical? My body isn’t screaming at me like yours but I feel stuck, there are eye issues revisited and my heart hurts (emotionally) for some reason..
I’m finding out about trapped emotional discomfort and how it can show up down-the-road physically in our bodies. It may be something we don’t even remember like when we were a baby but is imprinted energetically. It’s all connected and wired together in us with the physical, mental, emotional and spiritual. You can find out more about it in “The Presence Process” by Michael Brown.
Another thing I came across this summer that I found interesting was in Dr. Wayne Dyer’s talks about Anita Moorjani and her life-after-death experience. I read her book, “Dying to Be Me” and the one thing that struck me in her pain, cancer and eventually dying from it is that her body was desperately trying to tell her something. In fact, her pain was her body grieving over the fact that she didn’t know how to love herself. That really hit home for me and has made an impact on how I view the small stuff I’m working through compared to you.
Sending you hugs and oodles of love, Wendy, with the hope you will find some relief and be led to what you need and what you’re looking for. God bless you. <3
Thanks Pat. I saw my doctor yesterday. I had a CT scan that came back abnormal. Now I have an appointment with the cardiologist. My doctor thinks something is wrong with my heart. I was ready to blame it all of fibro, but, we’ll see what the specialist says.
Man, I’m sorry Wendy. It’s like you can’t catch a break. Well, maybe this will lead to some answers for treatment and much needed relief. Hugs, my friend — stay positive and never give up hope. 🙂
Thanks Pat. I’m actually relieved that it might be something that can be fixed (unlike the fibro). We’ll see. 🙂
I hope so, Wendy. Though scary, it might just be the answer you’re so desperately needing. My thoughts and prayers are with you. Please keep us posted.
Thanks Pat. That’s exactly how I feel. Scared but would be relieved to have an answer on what’s up.
Sending you hugs and hope you get some answers. 🙂
Hi Wendy: I’m walking with you every step of the way. I’ve had Fibro since my 20’s, when it was “all in my head”. At least we have a diagnosis now. My condition resulted from extreme and prolonged child abuse. All I can say to you is to do what you’re doing and try to remain as positive as you can. There isn’t one day that I don’t have excruciating pain. So, as I said I’m walking beside you.
Bonnie
I’m so sorry that you are going through this Bonnie. I wish you nothing but the very best. Thanks so much for the comment. It meant a lot to hear from someone else who is dealing with fibro too. 🙂
I’m no sorry to hear that you’re going through so much suffering. I agree: it seems unfair how others can just zip along getting stuff done and you have to accept severely reduced activity. I wish you all the best as you find that balance between doing what you can and letting go of some things.
I feel somewhat the same with my CLL- being weary and short of breath, huffing & puffing after a flight of stairs and after eating. Lately I take a couple of naps in the daytime. I’m thankful my sleeping & night breathing isn’t affected with this illness.
But accepting it is the big factor. And who wants to?? There HAS to be something I can do to turn this around? Others suggest this and that will surely help. So a person gropes for cures, as you said — all in vain. My husband encourages me to be a “cup half full” person rather than a “cup half empty” dissatisfied person and I’m working at that.
I’m sorry you are having these issues too. The breathing part is the worst. It’s scary feeling like you can’t get a good breath. Wishing you the very best.
A condition I know nothing about so I found this and interesting read
I’m glad you found it interesting.
I know you are fighting against a physical condition, but do you think Iron supplements might help?
I wish. I have tried all sorts of supplements. Fish Oil was a clear winner.
I’m glad you could let those feelings out instead of keeping them in. God bless you.
Wendy, strange as it may seem, your immersion in music may reveal a key. As you have discovered, ‘pacing’ is critical for you, yet the pace you desire is at times at odds with what your body tolerates. As a 2-time brain surgery survivor who still experiences unexpected temporal lobe episodes that can level me in an instant, I know the exasperation in aiming to maintain control when something seemingly bigger than me can tackle me without warning. Yet I always notice others who are more at risk than me, like the video I saw yesterday of an attractive woman experiencing sudden, instant, narcolepsy breakdowns. Somehow I realize 1) I am fortunate to be alive, that 2) despite my limitations my spirit remains strong and ‘WELL’, and that 3) it makes sense to adjust my pace to restore my weakened spirit and my body as ‘well’.
Music reveals that comforting and comfortable ‘pacing’ (tempo & rhythm) at various speeds; and willingly changing pace when physically triggered to do so … can help to restore access to more pacing options more quickly & assuredly. At minimum, hopefully all these words help to better convey what I mean when I write & encourage you to ‘Take Care -*-‘ … Nurture & Keep your Spirit Alive … For Life -*- … Adjust your pace … add to the music-*- …
I wish you well -*-
Thanks for the advice and for sharing your own personal experience. Sounds like you’ve had quite a few challenges of your own. Glad to hear your doing well.
Wendy - sorry to hear about this. At the very least, you know what your triggers how. But I can’t blame you for being upset!
Thanks Pam. I’ll be fine, just venting. 🙂