Fibronaut At Home

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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What is Next?

As I wrote yesterday, I received my Social Security Disability denial in the mail.  Bummer.  I wasn’t really surprised, just disappointed.  We will be contacting an attorney that we found on http://www.fmaware.org.  I am dreading the continuation of this whole process.  Much of my anxiety is tied to feeling judged so the possibility of months of close scrutiny has me feeling, well, anxious.

I am also torn because I am only 34 years old.  Who wants to be disabled at my age?  No one.  I feel like I’m giving up by pursuing this disability claim.  I guess deep down, I am still wishing I could be the old me.  The letter from Social Security stated that my condition is stabilized on medications and while my conditions result in some limitations, I should not be prevented from performing work I’ve done in the past as a teller.  Tellers stand at a station all day.  Even when they sit, the amount of repetitive movement required would have me resting more than working.

I’m really trying to think positively.  I have more to say but the tablet is spazzing out and I am about to chuck it.

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There Are No Coincidences

My Social Security Disability denial came the same day as Mother Nature’s Gift.  Enough said.

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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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Happy Mother’s Day/Fibromyalgia Awareness Day

My Mother’s Day weekend was pretty awesome.  I did some sewing, went to Goodwill (a thrift store) for their half-off everything sale and my hubby and children got my first garden plot ready.  We went to my Mom’s for dinner yesterday, and thanks to a caramel mocha iced latte, the fatigue didn’t hit me until we were thinking of leaving.  I dozed the entire hour and a half drive home.  I wore purple, as did my Mom and my three-year-old.  My nine-year-old started out in purple but five outfit changes later, the purple didn’t last.  She did paint her NAILS purple with purple f’ s.  My eleven-year-old son owns no purple and the hubby wore his purple shirt the day before.  Maybe if we started a tradition, somewhat like St. Patrick’s Day, where you get a slap to the back of the head for not wearing purple on Fibromyalgia Awareness Day, more people would go along with it.  Maybe not.  Something less violent, perhaps?  That would probably hurt us worse than it would hurt them.

I have to tell you about my trip to Goodwill.  I had purple and butterflies on the brain, for obvious reasons.  I always check out the sheets because fibromyalgia has forced me to do more re-fashioning than from-scratch sewing.  Sheets allow me to make skirts that already have a hem, so I just have to do side seams and elastic.  Easy-peasy.  I found a sheet set that is purple with butterflies on it.  The angels sang in my head when I saw them.  I was thinking of making infinity scarves for all my fibromyalgia friends.  When I got them home, I studied them more closely, and realized they were more worn than I originally thought, so I’m now thinking maybe bags instead of scarves.

I also always check the men’s shirts because men’s Hawaiian shirts make great skirts.  The material is soft, the colors are bright and all I have to do is chop and sew down the sides and top to fit my waist.  I found some Hawaiian shirts, but my really exciting find was a t-shirt.  It is blue, but it has a Spartan stabbing through a lavender ribbon on the front with “Warrior” underneath.  The back has a pretty design and it says “Fighting for a cure”, also in lavender.  My hubby thinks it was meant for cancer.  Well, guess what?  Now a fibromyalgia sufferer owns it, so it’s for fibro.  I’m going to refashion it into a tank top for summer and maybe paint the ribbon a darker purple.

When we returned from our shopping trip, I realized that my planned outfit of purple tank top and butterfly t-shirt was dirty.  Instead of washing those, which would have been a lot easier, I decided to make myself a quick skirt.  It didn’t take me that long to do a circle skirt with a simple waistband.  The best part was that I could make this without a pattern.  Pattern sewing is nearly impossible for me because cutting out the pattern, then pinning the pattern on the fabric, then cutting out the pattern, then following the pattern-maker’s instructions, is just too much time with little reward.  I was really glad that the next day was Mother’s Day because I needed the rest badly after that undertaking.

Besides getting the garden ready for planting, my daughter loaded and unloaded the dishwasher and swept and mopped the kitchen floor.  I haven’t mopped in weeks, so this was quite the task for my skinny little nine-year-old.  In years past, I would’ve probably hinted that I didn’t want to wash dishes on Mother’s Day and my hubby would’ve told me not to worry about it and would’ve made me breakfast, making a huge mess.  Then, the day after Mother’s Day, I would’ve been cleaning the dishes and the rest of the kitchen myself.  Not that I wouldn’t appreciate the gesture, but it used to drive me crazy.  It shows how much my family has learned and adapted since my diagnosis.  I love them to pieces and I know I’m so fortunate to have such understanding people in my life.

Fibromyalgia Awareness Day took a back burner to Mother’s Day for me.  It was more important for me to spend time with my family and be able to enjoy all their hard work for me and bask in the love of my family.  I ended the day with pain, depression and fatigue.  I felt guilty that I hadn’t blogged.  All the activity of the weekend caught up with me.  It hurt to move, and my skin was overly sensitive.  Today, I’m feeling overwhelmed because I have my garden ready to go, but I hurt still and I don’t know if I’ll have the energy to plant seeds.  There is laundry to do.  It’s a beautiful day, but I’m still on the couch.  I’m not sure how blogging turned into this massive freak out.  Blogging is supposed to help me, not make me more anxious.

Excuse me while I talk myself through this.  It is not quite eleven in the morning.  If you don’t get things planted today, that’s okay.  If you don’t get laundry started, that’s okay.  Relax and breathe.  Turn your relaxing music back on.  Breathe.  If you felt well enough to do something else, you’d be doing it.  Be kind to yourself.  Open the shades, let in the sun.  Breathe.  Stop gritting your teeth.  Relax.

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Fibro Fog Theory

I have a theory that the term fibro fog is really just a fibromyalgia-specific way of saying brain fart.  Fibro fog is just one brain fart after another.

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Let The Freak Out Commence!

I know I just posted this morning (if you haven’t read that one, scroll down now so we’re all on the same page)  but I’m beginning to panic.  I need to purge and then I will hopefully move on.  The Social Security doctor was nice enough and pretty cute but very brief.  I told my hubby the appointment was quick and dirty.  My hubby replied “just the way I like it”.  Hardy-har-har.  I told him “but he didn’t even buy me dinner.”  A heartier hardy-har-har with a snort at the end.  We were halfway home when I realized that the doctor didn’t even ask me about my depression and I forgot to put down anything about my anxiety or thyroid.

Sigh.  Cue the beginning of panic mode.  There is nothing I can do about it now.  He just went through his questions so fast.  I know he was probably trying to trip me up.  He made me walk and do all these other movements, which I can do, I just have a lot of pain during and after.  I made sure I told him that and I made sure I told him of the pain with repetitive motion.  I also made sure to mention the fatigue.  So now all I can do is wait for their decision.  I need to be realistic and not  get my hopes up.  The worst that could happen is for them to deny me.  We’ve been surviving for almost a year on one income.  We just have to keep on, keeping on.

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Happy Birthday to me!

Wish me understanding and compassion today.  Social Security wants me to see their doctor to determine whether I am disabled or not.  They picked my Birthday of all days at 9 o’clock in the morning.  I hope they don’t ask me to take my ball cap off.  Today I was going to wash my hair but it is too early for a shower.  My Mom is driving from Denver very early this morning to take me because I don’t/can’t drive this early.  Here is the endless wheel my hampster in my head is on:

– What if I forget to tell him something?  I didn’t write down a list of my complaints because I always freak out and end up not looking at the list.
– What if he is not nice?  Sometimes, when I think I can tell the doctor is ignoring me, I give up.
– What if he doesn’t believe me?  We have all had doctors that look at us like we’re crazy.  I even had one call me crazy.  He tried to laugh like I was going to laugh along!
– What if, what if, what if!

I think I’m going to meditate on the way there just so I don’t hyper-ventilate. 

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