I woke up on fire.

I woke up on fire. I didn’t want to wake up but I couldn’t catch the sleep and hide. My skin, muscles, bones everything felt like it was covered in electricity. Sore and on fire, that’s how I felt. I could tell I had slept in one position for a long time.

It was so hard to move because I was all stove up (stiff) but I had to get up and let Boo off the bed to potty. I take all my energy and get Boo safely off the bed and go to the bathroom myself.

Boo has the bed monkey (the toy that stays on the bed). I can tell he wants to keep it but it needs to go on the bed so there is always a toy on the bed for Boo to play with. I tell him that and that he has a monkey to play with already. He doesn’t care, he wants Bed Monkey. He’s sad when I take it away and put it back on the bed. I hate that but I don’t want it messed up.

I want to rest but Boo need breakfast. My fingers burn and are stiff but he needs to eat. Now I need to take my meds, meaning opening bottles and little pills and big ones and swallowing them.

Boo wants to play fetch. I can’t throw far, but I make myself hold whatever toy he brings me and throw.

Now he wants to be held. I place him on my chest and wrap an arm around him. It’s hard to breath, but I love holding him. He puts his cold nose in the crook of my elbow and goes to sleep. My arm is barely holding any weight but it’s a struggle.

I have to move my leg because after it being bent for a little while it’s asleep and hurting, this moves Boo and I can’t hold him anymore.

I hate the way I feel. 

Fear & Anxiety

Fear & Anxiety

Fear is an emotion induced by a perceived threat which causes entities to quickly pull far away from it and usually hide. (Wikipedia)

Anxiety is an unpleasant state of inner turmoil, often accompanied by nervous behavior, such as pacing back and forth, somatic complaints and rumination. (Wikipedia)

I have a lot of fear and anxiety. If it was up to me I would not leave my home, and groceries and such would be brought to me.

When I do leave my home for class I try to get there before I get stuck in a crowd on the Oval or in the halls. I sit up front and pretend I’m the only one in class. My teachers know my situation and are very understanding. If I needed to bring Boo I could.

Today was “Day In The Life”, meaning everyone in PhotoJ classes and in SAPS club had to take pictures on campus only this year we had to write a cut line, meaning I had to talk to the people I just took a picture of. In my experience people don’t like their picture taken so this is very hard for me. But I did it and I got a good picture. Only 1. If I had been less afraid (and had a coat lol) I could have gotten more.

If I go somewhere other than class I take Boo with me. He helps distract me from too much stimuli (Allodynia) and comforts me. He also will “pull” me out of a situation if he needs to.

I don’t know what its like to live without this strong fear. It was in the belief system I grew up in. So many “do” and “don’ts” and everything you do could cause someone else to go to Hell. Being told over and over that I may be the only Bible some people read. It was constant fear about everything.

These days I refuse to think that way. I do what I do and people watching me can read a Bible, I’m not their Bible. I live in a country where information, including Bible verses are found easily and even a computer will read them to you. You don’t need to look to me to guide you and don’t blame your choices on me.  

Chicken fajitas

Having Fibro and fatigue I usually need a rest after putting a frozen pizza in the oven, but some days I can cook something easy. Here is what I made today.

Chicken fajitas
Drain & heat canned chicken. Add some fajita seasonings.

Butter an oven pan and place tortillas on it.

On each tortilla put 1 tsp of salsa & some fine shredded cheese.

Put chicken on cheese and top with another tortilla.

Butter the tops and place in oven to melt cheese.

My online family

Before I knew what was wrong I was very weak with fatigue. But then my friends online cared enough about me to insist I go to the doctor. They saved my life.

We met when I joined their OLRPG (On line role playing group) and joined their family.The RP is based on Supernatural, a tv show we love to watch.

After a while of RP online and meeting behind the scenes to plan SL (story lines) we became family behind the scenes. That’s how they got me to go to the doctor.

Alastair, more often known as Al is the leader of our family. Al makes sure I get my homework done and looks after the rest of the family just as much. Al will also find the best, most obscure spoilers for the tv shows we watch. Al knows a lot!

Sam is the other member. Sam was harder to get to know, but that’s cause she’s shy irl.  Sometimes Sam understands me better than even I do.  I will say something and he will clarify what I mean and I’m like “Yes! That’s exactly what I mean!”  

Some shows all three of us watch so we watch together, not just Supernatural, but we have found other shows we like to share. Sometimes Al & Sam watch a show I’m not into. Al used to worry this made me jealous, but it doesn’t. When they are talking about that I am there but watching tv, playing freecell or reading. I just like being there even if it’s not about me.

thick, stuffed sausages

Today my hands feel like thick, stuffed sausages with pain. Some researchers think fibro is in the hands and feet. That there are more blood vessels and pain receptors in the hands and feet than people without fibro. (There is also proof that fibro is a blood flow problem in the brain. I wonder if they are connected or different kinds of fibro).

“The discovery also reveals clues to the cause of other fibromyalgia symptoms. In the hands and feet, the blood vessels act as shunts, helping to speed blood flow and regulate body temperature.
The shunts act like a radiator in a car, Rice said, shutting down in warm conditions to radiate heat and opening up when it gets cold. The increased activity of the fibers in cold weather explains why fibromyalgia sufferers experience more pain during chilly times.
The extremities also act as reservoirs, storing blood for when the body needs it, such as during exercise. So, problems with blood vessels in the hands also interfere with blood flow throughout the body, Rice said, perhaps explaining why fibromyalgia patients feel pain in various muscle groups. A decrease in blood flow from the hands may also trigger fatigue.”  http://www.healthline.com/health-news/aging-scientists-find-physical-cause-of-fibromyalgia-062113




LATER THAT SAME DAY:
My hands are feeling better. I added several more hours of sleep in a warm bed and I feel better. Despite sleeping all night, I slept hours this morning. I wonder if sleep is a help to other people with fibro as much as it is with me. My guess is yes since we all have fatigue. But I can sleep even without the fatigue.  When I get cold I get in my bed and get warm and sleep. So a theory is that fibro is in the blood flow of the hands & feet. Maybe once I get my hands and feet warm I relax and sleep. Or the blood flow is directed “wrong” and I get tired and sleep.  

I’m Walking On Sunshine! Oh Oh and don’t it feel good!

I’m Walking On Sunshine! Oh Oh and don’t it feel good!

I heard that song on one of my favorite tv shows, Supernatural. One of my favorite characters, Charlie, was dancing to it.

It’s also how I feel today. I only hurt a little and I’m stiff so I feel good. If only I could get a massage oh how good I would feel. But I don’t have that kind of money. Oh well, I will take feeling this good.

I got Boo a new orange squeaking toy yesterday. He started playing with it in the truck and is still playing. He loves fetch. We play for hours when I feel good. Even if I have to use both hands to toss it, but then Boo senses when I can’t do anymore. He will either chew it to make it squeak or “bury” it in his blankie and dig it free. He will play that for hours too. I have such a happy puppy.

This morning it was raining and I was hurting.

This morning it was raining and I was hurting. Thank you rain. Not really. It’s actually the change in barometric pressure that makes me hurt. The faster the change, the worse the hurt.  That also means I can feel a storm over 200 miles away. How often are there storms within 200 miles? Way too many!

When a storm is bothering me, I feel like I have electricity all over my skin, my muscles feel tight and sore, my joints feel stiff and sore and my bones hurt. This pain is all over my body and is relentless.

Boo wanted to play fetch this morning. All morning. I played with him, but it took both hands to toss his toy 3 feet away at times, but I played. And Boo was very happy.

The sun is shinning now and the pain has receded. There is still a storm out there, but no fast barometric changes going on where I am.