Friday, August 19, 2016

A Shout in the Dark

I've been working on a book about Fibromyalgia for.... too long. Part of the problem is I wanted to write the book to help people struggling with this kind of.... fuzzy illness that isn't understood well by even members of the medical community. Nobody was there to answer my questions and I wanted to help educate, empower, and encourage people. The problem is that I am not always very inspired, encouraged, or empowered myself.

So, I'm writing this post more or less as a stress reliever for myself. I'm hoping that by putting my frustration into words and sending it out -- it will be a kind of therapy. So, only read on at your own risk.

I am feeling defeated lately. I'm alone, sick, tired, in pain, and I just want it to stop. I'm a Christian - so I keep thinking that I shouldn't feel this way. I should find the lesson, know God is with me, and have hope. I don't lie though -- so I don't feel any of those things. Like Paul, I have prayed and prayed for even part of it to go away. It hasn't. Unlike Paul, I don't feel like God's strength is being glorified by my weakness. I am a failure in every part of my life.

Here's the list: Fibromyalgia, Irritable Bowel Syndrome, Asthma, Allergies, Chronic Migraines, Severe Insomnia, Hair Loss, Osler-Rendy-Weber (a blood disorder), Obesity, High Cholesterol, and a severe, chronic, and productive cough that nobody has been able to find a cause or treatment for.

It's not a life threatening list. I have had family members fight MS, Lupus, Cancer, Heart disease, and diabetes. I know my list isn't as serious as all that. Still.... The things I suffer from interact and trigger each other. Two of the most recent things are a particular problem that I can't seem to manage or overcome.

I had two boys. Both were miracles as I wasn't supposed to be able to have children. Both were born early - but both weighed almost nine pounds and I gained a lot of weight with each pregnancy. I retained water when pregnant - so much so that I had legs that looked like columns -- with none of the slimmer areas like around your ankles.

Those boys and the extra weight have weakened my bladder. Combine a weak bladder with a severe chronic cough and you have incontinence. Because physically I don't have an incontinence problem without the cough -- there is no fix for my incontinence. I don't cough a couple times a day. I cough nearly all the time. It's loud enough that we can't hear the tv, it aggravates my asthma, and sometimes it even causes my to throw up.

It won't kill me, but it means I can't do a lot of things. I love my church - and going. How can I when my coughing is a constant disruption and distraction? Plus the gross factor of over half of my coughing spells are productive. That is the case with most outings. We had a family friend who is almost like an adopted son visit and they wanted to meet at a restaurant. I took 4 different cough/cold medications and still had a cough that drew stares and eve some comments. I don't go out much, and it's hard to talk on the phone.

So, I'm isolated. My cats love me, but that's a total cliche, isn't it?

My husband. My poor husband. How can you have sex when you can't breathe and you're constantly peeing yourself? It's been months - and I can't think of a fix. I know he loves me - but it's hard for him. It hurts me that I know I am not meeting that need for him. He's only human too - and part of me does worry that eventually I'll lose him. He had enough to put up with without this last push. And the cough and incontinence aren't a couple months old. It has been years.

Yesterday I hit a new low. Showers are exhausting for me. Maybe that sounds ridiculous - but it's a fact. My husband calls it my "PSRP" (Post Shower Recovery Period). I take a shower so we can go somewhere, but I have to rest for 15 to 30 minutes afterward or I won't have the energy to do anything.

But this shower --- I coughed so hard and then this huge wave of nausea hit. I was so sick that I ended up getting out without even getting all the conditioner out of my hair. I was pretty much worthless for the rest of the day. I took that shower just after 5 pm.

So, when my husband called and asked me about my day... I just imploded. I didn't have anything worth saying. I hadn't accomplished anything and as much as I wanted to be positive and uplifting for my hard working husband - I was feeling defeated, worthless, deflated, exhausted, alone, and angry. I wasn't nice. I wasn't who I wanted to be.

I don't have any answers. I have tried tons of medications (prescribed and over the counter), essential oils, air purifiers, supplements... My next appointment isn't until the end of October. Pray for answers, healing, patience, and most of all for my attitude.

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