When you see me, can you see the pain I am experiencing with every step? Or do you see the fake smile and laughter I display so you don’t know how bad I hurt?
When you see me, can you see the numbness and tingling in my lower spinal area and the burning pain sensations it causes?
When you see me, do you know that I struggle to breathe when I walk any great distance?
When you see me, do you realize that I struggle to hold my emotions together at times? These are moments I am praying asking God to help me hold it all together.
When I comment that I am exhausted-even though I haven’t done anything to get that way-do you think I am exaggerating? In these moments, I am usually so exhausted and fatigued that the feeling of nausea sweeps over me and laying down becomes paramount to my well-being.
I do my best daily to put on my happy face; some days I struggle just to be pleasant. Days when I am not so pleasant and grumpy, please realize, it probably has nothing to do with you, but the pain I am in and I am tired of always being in pain. But I will continue to push through it because I was taught giving up or giving in is not an option.
When my attitude is out of whack, gently remind me to get back to a nicer me. We all have days that we struggle. Some struggles are physical, some may be mental and some may be ones we have no idea why we feel the way we do. Love me just the same as when I am not struggling.
Between the pain that is associated with fibromyalgia, the degenerative disc disease in my spine, the osteoarthritis in my hips and knees, carpal tunnel syndrome in both hands and the chronic meniscal injury to my left leg, some days I feel like I am just going to collapse. Jesus holds me up. He carries me in the palm of his hands. And now on top of all these lovely issues, if this constant aching is not enough, now my lungs are giving me problems.
I smoked menthol cigarettes for over 30 years. I breathed in silica dust and plaster dust for 12 years. I knew the risks associated with the cigarette smoking, but I was addicted to the Nicotine. So much so, that even though I knew and understood the risks of continuing to do so could ultimately harm me, I still did it. I saw my grandmother succumb to lung cancer and my best friend die of COPD and watched my father struggle to breathe as well.
I was diagnosed with Obstructive Sleep Apnea is 2007. I have always relied on a CPAP [Continuous Positive Airway Pressure]
to keep my airway open at night-time and allow me to sleep.and get rest. For many years, the CPAP alone was enough. Not anymore. It has come to my attention as well as one of my physicians, that the CPAP alone is not enough. I experience low levels of oxygen while sleeping. A normal oxygen level is anything above 90% and during my sleep times with my CPAP machine, I am showing oxygen levels of 60%. According to my doctors, anything under 90% oxygen level is dangerous to me and requires interventions. In reading some information I have found out that continued drops in oxygen levels will cause damage to cognitive function, short-term memory, stroke and heart attack during sleep and many other problems if not treated. I will be doing an overnight testing within the next week to determine if oxygen therapy will be required along with the CPAP usage.
And last but not least, I have been diagnosed with COPD[chronic obstructive pulmonary disease]. I have had asthma since childhood and suffer with Chronic Bronchitis and breathing problems.
I normally don’t share this with everyone. But it is my belief that the people in my life that God has blessed me with, which are friends that I call family, need to know what is happening with me.
I take it in stride. I know God has a plan for me and I also know that He helps me every single minute that I breathe. I am not sure what that plan is-I know he will tell me more when he is ready for me to hear it.
I am thankful. I can still walk. I might be as slow as a tortoise, but I am not in a wheelchair, without use of my legs. I may be able to feel every tender pain point on my body, but that’s okay because that means I am not paralyzed.
I may have to wear prescription glasses, because without them I struggle to see, but I am still thankful,because I am not blind.
Many mornings, I feel like I have a pharmacy in my medicine bag, 13 pills to take and two inhaler devices along with one to two breathing treatments a day. I am still thankful that there are companies that make these meds to help me function and live a fairly normal life.
Muscles spasms and incessant itching are the biggest pains in the neck because they just happen and you just have to get through them the best you can. Headaches, tummy troubles, dry skin, fatigue that always is and never seems to leave your body, Emotions that are up and down like a rollercoaster, but you learn to hold those in and only let those tears out with people who love you and understand why. When you have to explain why the tears, sometimes you are just too tired to even do that.
Edema and poor circulation issues. Weeping from your legs because the skin just won’t stretch anymore. My legs cry on a regular basis. My legs (calves/ankles) swell all the time. The only thing that stops the swelling and edema is to keep them elevated 24 hours a day-not likely considering I have a two-year old to care for, plus taking care of the home and myself.
Even in all of this grief I experience as I see my body and organs deteriorate from time to time, I am thankful because I know that each day that I awaken means God isn’t ready for me yet. He still has work for me to do here.
So when you see me, and you roll your eyes because yet again I am in pain and don’t feel good-understand this. I am not saying this to gain sympathy or do I want you to feel sorry for me, I just want you to understand that I have a lot of days when getting out of bed and getting dressed is a victory. Days when I not only get up, but take care of a 29 month old child who has endless energy, do housework and laundry and possibly cook dinner, those are wins for me too.
I miss being able to be outdoors. Taking hikes and nature walks spontaneously. It seems everything must be planned these days..Do I have my walker/cane? Do I have medication for my breathing and what happens if I need to go to the bathroom?
I would love to go to the park and play on the playground, run and jump-but my body won’t allow it right now. So I stay in most days and have found alternate way to spend with my grandchildren ( all four of them). I can’t run and chase them and play like that, but we draw and color and make and bake cookies and goodies. We play games and read stories and just spend time loving each other.
I know there are so many people in this world that face far greater trials than I have .
I am blessed by a God that loves me unconditionally, a family that does the same. Friends that treat me so special and make me feel very loved, A roof over my head, food in the fridge and clothes on my back. And a vehicle to get me where I need to go.
I am blessed and loved. I am alive. I am breathing and I am hoping that one day a cure will be found for Fibromyalgia. Until then, I will continue to do my best to educate others on what it is like to live with this disease. I have only shared the highlights. It’s too depressing to continue to dwell on it.
My mother always says, “You can’t always judge a book by its cover.”
And she’s right. I hope that when people “read” me, they see someone who loves Jesus and can’t’ imagine her life without him in it..
Jesus loves you! Blessings to each of you that read this!