I’m Not Sorry…Anymore

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Plus, I can still bake cakes!

I still mourn over breakfast. I used to make elaborate breakfasts and invite family and friends over. I loved cooking early in the morning. It is a remarkable confidence boost to pull off a delicious breakfast. You have to time all the dishes so they are hot at the same time. You run back and forth with the flapjacks and coffee. It is a meal that I relate to showing love. Momma always makes a hearty breakfast. I come from a long line of people who work with their hands. Breakfast is a stick to your ribs type affair and Momma does it up. I used to too. Since I started getting fibro flares every morning, I wake up in severe pain. My feet and hands don’t want to move, and a lot of the time hubby has to massage them before I can walk or hold things in my hands. The rest of my body isn’t doing so well either, with the aching and stiff muscles and sometimes severe pain in my hips and shoulders. This really does not make me in the making breakfast mood.

My husband is the greatest in the entire world. He makes breakfast most of the time before going to work. For a while I felt intense shame, guilt and yes…mourning. I was sad I couldn’t entertain like I used too, I couldn’t show love like I used too. Luckily, husband isn’t here for my breakfasts. He loves me for my cuddles, my adoration, my conversation, and my wit. He loves me deeply and without breakfast. Every morning I was apologizing to him for not feeling well. He would say, “I know, but you are sick. I understand.”

There is only so many times you can wake up to feeling bad before depression sits in and you don’t want to do anything at all, all day. Also, saying you’re sorry over something you have no control over is also pretty debilitating. I say I am sorry for my body more times than I can count. I am sorry I am sick. I am sorry I didn’t clean today. I am sorry I am depressed. I am sorry I am emotional. I am sorry I don’t have enough energy to make breakfast. I am sorry I can’t walk there. I am sorry I can’t make that coffee date. I am sorry I can’t meet my volunteer commitment. I am sorry I can’t spend time or energy on this or that. Pain has no understanding of my schedule. Pain doesn’t care what I want and it sure as hell doesn’t care what anyone else wants.

So, I am not apologizing anymore. I’m done. I will say thank you, when my husband takes the reins on meals, when he does more than his share of chores, or applies his healing hands to my painful muscles. I will say thank you for understanding when my friend isn’t upset because I am going to miss a coffee date. I will say thank you when I have to beg off a call because the fibro fog has taken over and I just can’t deal. I will say thank you and value the people in my life who help me when I need it. I will continue to be a good friend and partner, but I will not…say…I am sorry…anymore.

I will not be sorry for my genetic makeup. I don’t believe anyone who has chronic pain, a disease or syndrome should. There is no cure. There are only treatments which slightly lessen my pain and even that seems random. I can’t fix it, you can’t fix it. Saying sorry makes me feel deficient, lacking. I don’t believe that anyone in my life would say that I am not a good friend or family member, even if I feel like it all the time. I am trying to break myself from feeling hopeless. I can’t continue to feel like I am inadequate.

To my friends and relatives: If you catch me feeling sorry for myself or saying sorry, call me on it. To my fellow fibro sufferers: You are enough. I hope you understand just being a human and friend is enough. You don’t have to bake the best cookies for your loved ones to love you. You don’t have to be at every event in their lives for them to care for you. You don’t have to show your love in the same ways you did before. The ones who truly love you, will still love you when you stop. Just find a new way to show love. Believe that you are worth being cared for when you need it, and taking a time out when you need. You are not alone.

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Also, my garlic bread is still the best in the world. Breakfast Smeakfast!!!!

And So It Goes…

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Isn’t he cute? He is super supportive and the reason I can take days off to recover in my pajamas. 

I am admonishing myself today because I am in my special soft pajamas and my softest sweater because I over did it yesterday. I did my yoga, my writing, and then I cleaned the kitchen and deep cleaned the refrigerator. I took out three trash bags from all the cleaning I did yesterday. I also washed the bathroom floor by hand because my hair just doesn’t come up with a mop. I was extremely excited when husband got home, but by the time we went to bed I could not move my head without groaning.

I am extremely lucky because my amazingly patient husband gave me a massage to loosen me up enough to go to sleep, but then this morning I woke up in full -just got hit by a mac truck- fibro mode. If you don’t have fibromyalgia I will remind you that it feels like when you have the flu, but you don’t vomit. You are sore all over, nauseous, and swollen in places. So basically it is like you have the flu but also got beat up last night. It’s a wonderful way to start the day, let me tell you.

So today I am sitting here watching Monday’s Dancing with the Stars and the fog in my head is coming and going. Right now, in a moment of mental clarity, I am wondering how long it will be before I learn my lesson. I want to manage my energy better. I feel like I make progress and then get excited and do too much. I get a little encouragement, and say I GOT THIS!!! I got this all the way to the couch. Dang it to hell. It is so frustrating. Now I have lost a whole day. I have lost an entire day to sitting around without any progress. I know I shouldn’t let it, but it pisses me off and makes me feel guilty. I know it shouldn’t but I keep going over where I went wrong and how I could have broken up tasks. Maybe I could have eaten better. Would that have made a difference? Should I have split up cleaning the fridge? Two shelves one day, the rest another? These are the questions I feel like all fibro people ask, am I wrong?

Managing your activities can be tedious. These are base activities that most humans have to do: cook, clean, walk, fold laundry. I have to dose them out like medicine. Too much medicine and I crash. Today is crash day.

Will I ever get it down? Will I ever learn? I doubt it. My mom has had fibromyalgia for years. At least once a month she is telling me about something she over did. This week she mowed the lawn and the next day her back hurt and she was out of commission. She hasn’t learned.

Also, hopefully my baseline for what I can do will improve if I keep working at it. I have to keep chipping at that line that I am not supposed to cross. I have to keep trying to move it forward. So, I guess that I will be having more days like this. By that logic, perhaps these days aren’t that bad.

I keep trying over and over to be more capable. I keep trying to push the limits of my abilities. That is a good thing. So maybe it was stupid to do too much too fast, to be excited when I feel good, and to fall for it again. This excitement (like look what I can do!) is contagious and insatiable sometimes. I want to feel normal, that is natural. I want to reach out to all those people with fibromyalgia and tell them not to feel bad when you make a mistake like this.

Fibromyalgia should be called baby steps. (Please excuse the What about Bob reference Bill Murray.) Baby steps to a clean kitchen, baby steps to a clean bathroom, baby steps to a vacuumed floor and baby steps to a rewarding life. I should make it a mantra. I should add it to my morning meditations so that I don’t forget.

It can be hard to always live a mindful life down to the most minute activity, but that is the new regime with fibromyalgia. I will always struggle with being guilty because I’ve done too much. As a fat person, I’ve always felt guilty for not doing enough, for not loving exercise. Now in my forties I am finally loving exercise and I have to put a cap on it. I struggle not to feel guilty at all anymore because it helps no one. If you have fibro or some other chronic illness, or even if you don’t – how do you stop the guilt train? It has to stop. It helps no one. How do you stop the guilt train? We have to put an end to it for our collective health. We have to band together and be encouraging to ourselves. Not just because guilt, shame, and stress can cause not just mental anguish but physical pain in fibromyalgia. I don’t think those things are good for any human.

In addendum: My husband read this before posting. He said that it would probably help for caregivers and spouses to read this. He said it helped understand better. I know if you have fibro you understand this push and pull with your abilities, but maybe your partners don’t. My husband is truly the greatest husband in all of the world. He dotes on my like I am his “precious.” So, if he is still figuring it out then I am guessing education is needed for more partners in this world. I hope this that this essay helps, but I would also recommend: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

What Gives Me Hope

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Brad took this pic and emailed it to me saying, “My wife is so pretty.”

Today was a very good day. I woke up with no pain, husband made my favorite breakfast, and I got to volunteer with full energy, and then walked home as if I hadn’t a care in the world. It was one of those days when I have felt extraordinarily lucky to be alive because I have no pain. If I hadn’t had all these health problems I don’t know if I would feel this blessed, or maybe I am just extremely smart.

I don’t mean to brag, but I believe people who can see the good stuff, the sometimes referred to silver lining, are the smart ones. You know how they say that most comedians have gone through a dark time. I know that makes sense. Sometimes we have to go through the fire to appreciate the soul soothing rain. I know that I have read other people with chronic pain talking about how blessed and lucky they feel on the good days. It is just natural to soak it up, tilt your head to the sun, when you live in the shade most of the time.

Right now I am typing but also writing letters to my family and dancing to a Pandora channel filled with Korn, Metallica, and AC/DC. That’s my feel good music. I think that any day I feel up to dancing is a good day!

I wish I felt this way every day. I wish “Dirty Deeds, Done Dirt Cheap” could help me get out of my chair and giggle and dance when I am doubled over in pain, but as good as that song is…

I know my family and friends have been worried about me. It is hard when they are so far away and they call me when I am in agony or what’s worse when I am on drugs that make me talk like Kermit the Frog on drugs. It can be excruciating to watch your loved one go through pain. I know because my Mom has chronic pain. She is strong and hides it better than I do, but she is in some form of pain most of the time.

Going through the endometriosis and adenomyosis has helped me to understand how it feels to be her. Even if you are surrounded by tons of people it can be lonely, because no matter how much you explain it…no one will know what it feels like to be you.  Also, they may not always believe you are in pain or to the extent you are and that is isolating and insulting. The cool thing is most people will believe you and those people might ask what they can do, and I have some suggestions that I might have wished for if I knew how much it helped. Now I know how to help my Mom because someone helped me.

My husband has been so awesome.  Being in pain, you would think, would make me want to be rubbed or massaged, but it hasn’t. I just want to be held. I just want two arms around me, and his strength and presence. I don’t know if that what everyone wants, but that is what I want from my husband. He holds me and I remember he is there and I am not alone.

Also when I neglect something because I have been curled up like a rolli polli all day, husband doesn’t even skip a beat, he says, “Of course you didn’t do the dishes/laundry/inane chore because someone was stabbing you in the ovaries.” Small tip here for those husbands and wives who think it’s understood. It’s not. Say the words.  We feel guilty, and shitty, and useless because of the pain. When you say the words, “Of course I didn’t expect that,” it helps and relieves so much. Absolution is a powerful thing.

He also helps me have things to look forward to. He makes plans for the future with me, like dates and vacations.

Distraction from the pain is essential. My husband entertains me with reading material, music, and my favorite action movies.

Friends and family also distract me. When I start moaning and groaning about my horrible life. It is wonderful when they listen, acknowledge how shitty the pain is, and then distract me by asking me about something else in my life. If then they transition to a funny story about themselves or even distract me by letting me help them with a problem that is awesome. It really helps to stop marinating in my problems and usually that is the only thing that kicks me out of my grief – hearing someone I love’s problems. I love my friends because this is what they do. They show me I can handle it. While it might not be dancing to AC/DC, I usually leave the phone call giggling and feeling blessed and that is what I need more than anything: hope. I hope for the good days. I hope for friendship. I hope for more laughter and dancing.

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
– Thich Nhat Hanh

For those of you who also have chronic pain what helps you? How do your friends and family help? What do you wish they’d do?

Everybody in my Apartment is Relieved!

One of the good days
One of the good days

I danced this morning to music in my head. I woke up and started singing to my husband. He had a slightly relieved but also amused look on his face while I started pumping my arms over my head and shaking my chest at breakfast saying, “Mocha, mocha, mocha, mocha!”

See, for the past three days I have been experiencing fantastical headaches to go with my endometriosis pain and sinus infection. What a boon! Right?

My CPAP mask has been leaking. When it leaks I don’t sleep so well. When I gasp for air I lunge with my neck and that causes my neck to seize up. When I wake up I feel like someone has been wrapping a rubber band around my neck all night and all the blood in my body is stuck up there. I used the alien head massager, ice, heating pad, and my husband gave me hour long massages. Nothing helped to relieve the headache until my mask got fixed. Brad got me a caramel mocha at the Starbucks across the street as a reward for my ingenuity, fixing my mask and helping myself feel better.

I am not telling you this to make you feel sorry for me. I am just struck by how wonderful I feel this morning. I want to explain how glorious it is when I don’t am not in pain. I am so happy this morning that the pain is gone, I am dancing. The thing is: I don’t know when the cramps will come back so that means that since I am feeling good, I have a long list of things to do today. I will be cleaning the kitchen, writing blogs, editing my book, emailing my new friends, writing letters, and cooking three meals.

I will try to do more if I get that done. I am excited to do things. I love getting things done. I have to pace myself though because if I don’t I will be in pain again tomorrow. So I mix sedimentary things with active things. It is a trick I have learned after ruining my good health streaks. I think sometimes these bad health streaks are there to remind me to take care of myself.

I just read an email from Myfitnesspal with a quote from a woman who lost over one hundred pounds. She said, “You need to take care of yourself like your life depends on it.” That really makes sense, because our lives do depend on it. It is a simple saying, almost like a “duh” moment, but I have never thought of it like that. I would go even further for myself to say, I have to take care of myself like my next week depends on it.  I can really mess up my week if I don’t eat right, get exercise, and sleep deeply.

These horrible times are fewer and farther between which is all I can hope for. I am slowly making things better through research and my resources. I am taking better care of myself and that is a win in itself, but the product of that is less pain. The other benefit is that I am able to listen to my body better. When I first had sleep apnea it took me years to realize why I was having the headaches. I figured out my mask was leaking the first day this time.  I am listening to my body closely now, and that is a benefit I didn’t see coming.

While I am working on my health I am going to relish the days I do feel good. I am going to live life to the fullest while I can. So today I am gonna get as much done as possible, but I will be singing and dancing while I do it.