Fibronaut At Home

Back to Work

I’ve been working at my new job for a couple weeks now.  I’m part time and the longest shift I’ve worked has been seven hours.  So far, so good.  Sometimes I have to stop and stretch and sometimes I forget to take my meds.  My body always tells me what I should be doing.  I bring a small snack for when I have to take my naproxen and I’ve been trying to drink tea instead of soda, when I can.  One night, I was so busy, I had to eat a jelly donut for dinner.  Not the best dinner, but it allowed me to take my meds and get a couple (hundred? thousand?) calories, so I wouldn’t fall over.

The mental aspect of going back to work is just as hard as the physical.  I write myself positive notes, and read them before I go in.  “I am so grateful for this opportunity,”  “I’m so happy to be working again,” “You are going to do great,” and “You got this.”  I ALWAYS smile at myself in the mirror and say, “This is going to be fun!”  If I have a setback, like a grumpy customer or something goes wrong, I just tell myself to shake it off.  I read a great quote somewhere that I come back to: “Life is 10% what happens to you, and 90% how you react to it.”  I just think of that, determine that I’m not going to let someone else’s sour mood affect me, and remind myself to be patient with myself and others.

I have a lot of former bank customers and former gas station customers that come in and that is always great.  I love talking to people again.  Then, I have someone come in who asks, “What happened?” as if the worst thing in the world is me, back at a gas station.  I’ve had a couple of these.  The first one was really tough and I felt a little defeated when he left.  Then, today, as I was thinking about the interaction, I remembered a conversation I had right before he came in.  One of my old gas station customers came in.  Every day, when picking up my kids from school, I drive by a bench in front of the high school that is dedicated to her son, who died two years ago.  Normally, I wouldn’t know what to say, but I offered my condolences anyway.  We talked for awhile and then she thanked me for remembering him.  She said, “I’ve found that for me, when he died, my world stopped, but for everyone else, it kept going.”

I cannot even begin to imagine the pain of losing a child.  My losses were nothing in comparison.  When I think about those first couple years after my diagnosis, I can relate to her description of the world stopping for me.  I am so fortunate that I had Fibromyalgia and CFS, even my anxiety and depression.  I didn’t have anything life-threatening, my family and children are healthy.  The experience was in no way easy for anyone in my life.  I’m so fortunate that I have such a supportive and understanding family, friends and husband.  I might be starting over, and I’m definitely not making what I made in the bank, but I’m confident that I’m right where I am supposed to be.

Tonight, when I had my second, “What happened?”, I smiled, said “I was sick, but now I’m better.” and left it at that.  I don’t have to explain and not everyone is going to get it anyway.

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The Happiness Project

I have finally started reading “The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun” by Gretchen Rubin.  Julie Ryan of Counting My Spoons, suggested the book to me months ago and I’m so glad that she did.  I’m only half-way through, but I already love the book and I’m heading back towards the totally awesome me that I found in April.  I’ve been in a slump lately, which is the main reason why I haven’t posted here.  I didn’t want anyone to know that I was struggling, though my hubby and my Mom knew.  I’m ecstatic and relieved that I’m back.

The main goal that is sticking with me now and that could be life-altering for anyone, but especially for others like me with Fibromyalgia and Chronic Fatigue Syndrome is, “Act the way you want to feel.”  I was already trying to do this and seeing that it worked for someone else, really helped me.  I think I went into a slump because I was starting to wonder if what I was doing was really working.  Rubin had a similar experience.  Reading that made me feel like I wasn’t alone in my doubts and gave me tools for combating the negative thoughts causing those doubts.

Even though I was doing all the right things, doubts crept in and the old conflict of to-work-or-not-to-work started playing havoc with my mind.  If I don’t work, there isn’t any money for extras and if I do work, there isn’t any time for extras.  I want a part-time job so I can still pick up the kids from school and spend my evenings and weekends with them, but most places only have full-time available, or I just can’t imagine working there.  I talk myself out of jobs before I even apply for them.  I have finally come to the conclusion that, when it’s right, it’ll happen.  When I find my mind going to that black hole of never-ending worry and what-ifs, I sing to myself, “Que sera, sera.  Whatever will be will be.”  A little silly, but it works.

We’ve also had extra stress dealing with some school issues.  I’m not going to go into it.  I think we’re almost through it and I can look back and see that despite all the stress, some good things have come out of going through this.

I’ve gone back to keeping track of all I accomplish each day.  Even if no one else notices, it makes me happy to see all these tasks completed.  I have a spreadsheet I found in Microsoft Excel that’s meant for a chores list, but works perfectly for me.  Each week, I’ll start a new spreadsheet, so I can look back and see how much progress I’ve made.  There are some tasks that I do daily, some I do twice a week or more and some I only do once a week or once a month.  I don’t have to look to my hubby or my kids for validation that I’m reaching goals.  I’ve also added several items since I started.

I’m learning to find the positive in every situation, no matter how bleak.  I’m learning to be grateful for where I am, who I’m with and everything that I once took for granted in life.  Those are some pretty big statements, but I’m confident in them.

I’ll probably post again about this book because there is so much helpful advice in it.  I would recommend this book to anyone, whether you feel like you are happy and especially if you don’t.

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Gasping for Air

Anxiety is in full effect today.  I’m trying not to go into ostrich-mode, but I’ve kind of been there for the last couple weeks.  The only way I’m going to deal with this, is to get it all out.  Not exactly easy.  The holidays have me feeling vulnerable.  I have my husband’s work Christmas party to go to and I always dread those.  That’s not really what has The Hamster Wheel of Death spinning in my head.

I spent some time with friends from high school.  Felt great at the time.  After, I was full of all these self-recriminations, where I was re-visiting things I said or did and just beating myself up over them.  I know I’m supposed to acknowledge these thoughts and feelings, then see them for what they are.  I know that.  But they are still eating me up inside.  Great.  Now I’m crying.  My four year old is home and really doesn’t need to see this.  She’s watching a movie, so hopefully she doesn’t notice.  I don’t really even understand why I’m beating myself up.  I had fun.  I am able to be myself with these women.  I never feel any judgement from them, just support.  We get each other.  Part of me feels like I don’t deserve their friendship, and I suppose that could be contributing to these thoughts.  I hate myself over how I treated them years ago.

I meet with my attorney tomorrow to go over my disability case, which is putting another layer of anxiety on top of the holiday mix.  This is just a preliminary appointment to go over what to expect when I have my hearing in February.  I’m gritting my teeth, my shoulders are hunched and I have butterflies in my stomach.  I’m afraid I’ll forget something.  I’m full of what-ifs.  I’m in ostrich-mode so bad on this one.  I just want to go to sleep tonight and wake up on Thursday, with it all over and taken care of.  I don’t want to deal with it.


What Am I Doing?

After my last post, I worked on cleaning the kitchen.  Sometimes, the clutter in my house gets to me.  I start to feel buried by all the crap laying around.  I’m not a hoarder, but I do have three kids and a hubby and we all have the habit of throwing things on the counter to deal with later.  Plus, my kids, like all kids, don’t put anything away, and don’t clean up after themselves unless I ask them to.  As I’m straightening the table, rinsing dishes and stacking them in the dishwasher, thoughts that have been on my hamster wheel in my brain make themselves known.

Lately, I’ve been thinking about my old job.  As I drive my kids to school and pick them up from school, I see people from my old life.  My brain goes through a weird kind of process at that point.  I don’t consider waving, I just kind of hold my breath and wait for them to acknowledge me.  Then, I think to myself, “What do I look like right now?” or I worry about whether or not they think I look sick or not.  It doesn’t end there, because then, I start to go over the time since I quit working in my head.

The most difficult part of fibromyalgia and chronic fatigue syndrome has been staying at home.  Fibro/CFS took my ability to work and with it, my sense of self-worth.  No matter what I do during my day, in my brain, it means nothing if it doesn’t make money.  I haven’t contributed to my family’s bank account and that is something that I can’t let go of.  I was raised to work hard, no complaints, no excuses.  My Step-Father is 81 years old and he works full-time.  He has more aches and pains than anyone I’ve ever met and has health issues for the 25 years I have known him.  He gets tired, he hurts and he still works.  I have so much respect for him.

He taught me to work hard and not give up.  Staying at home, even though I have gained so much time with my kids, makes me feel like I’ve given up.  I don’t know if I can live with myself this way.  I feel like I’m hiding.  I’m scared.  I don’t know if I could do a job anymore and I’m too scared to try.  I’ve talked to my doctor about this.  I told him that I have a good day and worry that maybe I should be working.  He asked me, “But if you did go to work for 8 hours, what would you be able to do when you got home?”  The answer was obvious.  Nothing.  I’d be laid low and I probably wouldn’t be able to do anything for days after.  I have so many examples of when I pushed through the pain and fatigue to do something with my family and I don’t make it over an hour.

Why, knowing this, do I continue to beat myself up about this?  I just can’t reconcile any of this in my mind.  I don’t know if I’ll ever be able to.

Plus, I think about what kind of example I’m setting for my kids.  I don’t even know.  I don’t even want to think about this.

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Defcon Blue

I’m feeling down.  Eeyore is my spirit animal right now.  My hubby brought me flowers yesterday.  I said, “Thank you”, but inside I was shrugging my shoulders.  I tried to refashion a t-shirt to give me happy vibes, but I shrugged my shoulders at that too.  Outside my window, there is a huge tree.  Behind it, a giant pine tree is leaning and it looks like it’s peeking at me.  Again, meh.

I didn’t even sing along to the radio this morning while taking my kids to school.  I am listening to electronica music because I know there won’t be any depressing songs in that mix.  My foot is bouncing to the beat, so at least that is working.  I slept a ton yesterday.  I was in bed at 6:30 pm last night.  I woke up at 9 pm to take my night time meds, ate something and went back to sleep.  Usually, it would be a good thing, all this sleeping.  I just didn’t feel like doing anything else.  I didn’t want to talk to anyone and that was the easiest way to avoid my kids and husband.

I don’t like me like this.  I was alone all day, barely talked on the phone and should’ve been ready for some time with my kids and hubby.  It has been so long since I’ve felt this way.  I don’t feel like crying, I just don’t feel anything.


We Got This Wednesday

  • Made peanut butter, chocolate chip, banana bread and chocolate chip zucchini bread.
  • Made chicken enchiladas.
  • Did some dishes.
  • Altered some things for my girls; pajama pants, skirt, t-shirt and shorts.
  • Went to Katie’s volleyball game and went to the mall after.

Comment on your accomplishments or share.

PS.  The point of this is to focus on the positive, which is really hard for me today.  I’m missing my daughter’s helper day at school because I’m in a stupid flare.  Out of all the days to be in a flare, why does it have to be today?


Fibronaut on Vacation

I’ve been meaning to write about our vacation that we took at the end of June.  I thought about the things I did to be with my family as much as possible.  I haven’t posted about anything yet because I’ve been all up in my head since we got back.  I don’t really know where to begin.  I’ve got so much bottled up right now and I’m just trying to keep my head above water.  It was great to be able to get away.  I took it slow.  I rested as much as possible.  I’m realizing the most difficult part of vacation is coming back to reality.  I’ve really struggled the last couple weeks to get back into the swing of things.  I feel lost.  Part of the problem is that, while on vacation, we ate out every meal.  I didn’t have to worry about having the energy to feed myself or the kids.  I feel like I was able to do so much more than normal while on vacation, that now I feel like I’m doing nothing.  Now that I’ve finally realized that, you would think I would be a little easier on myself.  I continue to beat myself up about it.

Every time I sit down to rest, my brain goes to everything I should or could be doing.  I’m having trouble sleeping again and having trouble keeping my temper.  I was so rude to a girl selling magazines the other day.  I blew up at the kids for a really stupid reason.  I don’t like myself like this.  My son starts middle school at the end of this month and that is just adding to my stress.  I think I’m more anxious than he is.  I’m having trouble just breathing.  I feel like I could hyperventilate all the time.  I just want to cry and scream.  I really hate myself right now.   I don’t know how to get out of this funk.

I’m still struggling with being unable to work.  I feel like I don’t contribute anything to my family.  I know that’s not true but it feels that way sometimes.  It just sucks so bad trying to live on one income.  It isn’t fair to my kids or my hubby that I can’t work.  I even have one of those dreams that feels like it is real, where I think I’m at work again and I feel so good but then I wake up and I just feel sad.  When I worked, I missed out on a lot of things with my kids.  Sometimes they couldn’t do certain sports or activities because I couldn’t get off of work to take them.  Now I have the time but we don’t have the money for them to do those things.  It hurts to have to tell them they can’t do something because we can’t afford it.  It breaks my heart.  I would make sure I rested all day if I could just do this for them.  Makes me feel like a complete failure as a parent.  I need a hug.


Total Panic Mode

It is nearing the one month mark since I was denied SSDI.  I am entering panic mode.  My hubby has been bugging me about contacting an attorney and updating my explanation of my difficulties.  Just writing about it has my stomach in knots.  My breathing is shallow, my stomach has butterflies and my teeth are clenched.  Last night, he started to talk to me about what he wanted me to work on and I had to cut him off.  I told him to make me a list of what he wanted me to do.  I could not deal with any of it.  I put on my headphones, listened to calming music and escaped into the book I’m reading until I couldn’t keep my eyes open.  Then I went to bed and kept repeating “You can’t do anything about it tonight. Deal with it tomorrow.”  This allowed me to get to sleep last night.  Not sure why I decided to post about this when it is bringing me back to this anxious space.  The anxiety just compounds until I’m a nervous wreck, barking at my kids and in pain from all the tension.  I meet with the attorney next week.  I cannot be a basket case until then.

This is why I know going back to work is not a possibility for me.  I cannot handle stress.  I go into ostrich mode, where I just want to bury my head in the sand until the coast is clear.  Add to that the pain and fatigue and I wouldn’t be able to function.  Since the denial, I’ve considered the possibility of working from home, just to bring in a little income.  I love to sew.  Why not turn that love into something profitable.  So I checked out books from the library on starting your own Etsy shop and I can’t even get past the first chapter.  I become overwhelmed by all the what-ifs.  I know that just getting started is going to be a lot of work.  My hubby starts questioning me about certain aspects of selling online and I freak out.  I know he just wants me to be aware of all the work my idea will take but it feels like discouragement.

So, I feel like I should be doing more, but every time I try, my doubts surface and I give up.


Weekend Warrior

Weekends have always been the most difficult times for me. My normal schedule is interrupted by family events, kids’ activities and whatever else didn’t get done during the week. I rarely get to rest like I need to because we’ve always been ones to get started early with whatever we’re doing. So I often push myself too hard on the weekend. With only one income, we are less likely to squander any time at an activity that we’ve paid for, such as the zoo or the museum, since we don’t know when we’ll next be able to afford to do something fun outside the home. That means that we leave as early as possible and stay as long as possible. I spend most Mondays recovering.  My husband works all week and has the most desire to get things done on the weekend. When the kids are in school, this is not a problem but during the summer, weekends are hell. I don’t get several days during the week with the kids in school to recuperate. I’m in Mommy mode 24/7.

We had family visiting from Texas this weekend. It is now Wednesday and they left on Monday but I am still recovering. We had some stormy weather come in yesterday so today has been spent trying to get comfortable with the lingering aches from this weekend and the headache and body aches from the weather. We did so much this weekend and I didn’t want to miss out on anything. Two full days is nothing when you haven’t seen someone you love in what feels like forever. I have learned that there are some moments in life, that no matter the consequences you have to grasp. Pain and fatigue are going to be there whether you are sitting on the couch alone or going somewhere with your family. Focus on the smiles and laughter. This is the hardest part for me because it hurts my face to smile or laugh.

We went to an amusement park. I did things with the little kids mostly. They wanted to swim, which mostly involved standing in the shallow end of the wave pool. There was some walking between the kiddie area, the wave pool and our cabana, but I took it slow. A couple trips on the lazy river holding my three-year-old in an inner-tube was doable. One trip down a raft ride was a huge mistake though. There were a lot of stairs and I was shaking and nauseous by the time we got to the top. I almost gave up but figured it would be easier to climb the rest of the way up and ride down than to trust my shaking legs with walking back down. With the reserved cabana and plenty of other adults, I was able to rest as much as I needed. I took the two youngest on little kid rides and they were tall enough to ride by themselves thankfully. I sat a lot, hurt a lot and yawned all day but I had fun. Fun! Such a foreign concept to me now as I spend most of my time just trying to be comfortable enough to be present.

We also went fishing the day before but I spent the majority of that venture in my lawn chair. But I was there. That is the important part. Just call me the human bump on a log. I don’t care. I was in my element, watching my kids and their cousins on the playground, refereeing their disagreements and laughing at their antics. So I’m still recovering three days later. Who cares? It isn’t like I have anywhere else to be or anything else to do. I would like to be working on my daughter’s Birthday present. I would rather be sewing and laundry is piling up again. I have a very dirty bathroom and should be cleaning it but that just isn’t going to happen right now. I am going to watch the rain and hope that the aches subside soon.

I’ve already spent too long on this post according to my fingers and my shoulders. As I’ve been zoning out for the last five minutes, trying to determine how to end this post, it has stopped raining and the birds are playing in the puddle at the end of our driveway. I can see some blue skies on the horizon and the sun has started to shine through the gray clouds. A kid is out riding his bike already and a little squirrel just scampered across the lawn. Now the birds are singing and I am zoning out again. The pain is still here, along with the fatigue. I feel like I have cotton for brains. I’m hungry and there are plenty of leftovers but I’m feeling kind of down so I’m craving chocolate cupcakes. Weekend Warrior + Fibromyalgia + CFS = the rambling randomness of this post. And I still don’t know how to end this.

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Light a Candle

On my Facebook news feed today, there was a quote that really caught my attention: “It is better to light a candle than to curse the darkness.” The meme on Facebook attributed this quote to Eleanor Roosevelt, but a quick Bing search attributed several other sources, including JFK, Chinese proverb and others. I don’t know who to attribute it to, but I like it. After my post the other day that started off positive and upbeat and devolved into a mini anxiety attack, I was feeling pretty disgusted with myself. I made a conscious decision to get up off my behind and do something more productive than whine. Not an easy task when you are tired and hurting but a necessary one. I have to stop focusing on what I can’t do and start being grateful for all that I am doing. My three-year-old was at home, so we went outside to enjoy the beautiful weather. She suggested a walk. We took the dog and walked two blocks to check the mail. That was just the motivation I needed. When we got home, we rested, re-hydrated and rested some more. After picking up the older two from school later in the afternoon, I worked on my garden. I was absolutely exhausted afterwards, but mentally I was so much better. My day started out with so much regret and guilt and ended beautifully. Two years ago, I was in my recliner all day long. I was afraid of my body. I wasn’t driving at all. I couldn’t laugh, rarely smiled and had regular thoughts of suicide and self-harm. I was on medications that were giving me more side effects than relief. I felt every glance my way, took that energy in as negative energy and assumed every opinion towards me was hateful. I had little compassion for myself. I have grown so much since then. I am off of those medications that were hurting more than helping. I can drive. I can take care of myself and my kids. I can do housework. I have a hobby I love. I have a loving, understanding family. I am up and I am moving most days. I can acknowledge the pain and fatigue without letting them take over. I have lost 30 pounds. I can wear my size 12 shorts. I can laugh and smile and enjoy myself. Will I hurt or be fatigued in the next second/minute/hour? Probably. I can’t afford to let that stop me. Finding a balance with fibromyalgia and chronic fatigue syndrome is about taking advantage of every moment. If I start feeling OK early in the day, I don’t look at the clock and think “It’s only nine am. I better sit here for another hour or two before I attempt anything”. Instead, I get up and give myself the opportunity to do something other than sit. If there is any pain or fatigue, I take it slower but I keep going. Since getting my garden half planted two days ago, I’ve been getting off the couch before 10 am so I can get it watered before the heat of the day hits. Then I rest. Then I do something else. Then I rest. And that is okay. Yesterday, while sorting laundry, I listened to upbeat music while I sorted, swaying and moving my body to keep my muscles loose. I didn’t get a headache last night so it must have worked. Today, I am trying the same thing while I fold. I have the shades open to let in the sunlight. I have to stop being afraid and what-ifing every situation to death. We went to a Birthday party for my nephew a couple weeks ago. My Mother-in-law said, “Glad you could make it.” I did a double take and I’m sure I looked at her funny. I don’t even remember what I said but that was such a nice thing to say. So much better than “How are you?” because I didn’t have to scramble for an answer to an impossible question for me. I hope I said I was glad I could come because I really was. No more focusing on the darkness. I’m lighting a candle.



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