This Strange Fatigue

My kid asked me today why I just couldn't get up earlier in the day (I typically sleep until 11am or later). He looked at me and asked "you know how you feel weird if you sleep in too much. Can't you just get up earlier?" I wish it were that easy. The fatigue of my illness is so strange. It isn't being tired. Sleep won't fix this. It's more like the battery in the car dying. If it were a matter of just being tired I would be able to sleep and wake up refreshed. Like shutting the car off, fixing the battery and we're good to go again. This is more like being in the middle of the highway and suddenly the headlights start to dim, the dashboard lights start to go dark and you know you are in big big trouble. It is the oddest thing. I'll be going along and I start to notice muscle weakness. My gait slows. I want desperately to sit down. My legs feel heavy and my feet start dragging. I start having dizzy spells. If I push on as when I decide to make dinner sitting on a bar stool so I can reach the stove instead of lying down like I know I should be doing, then I no longer can open lids on jars that aren't brand new. My speech starts to slur. I loose words. I can't concentrate. I loose my place in the recipe even if it is simple. I forget what I'm doing when I'm in the middle of doing it. If I keep going, keep pushing because I just want to feed my family, I get a short temper, I snap at my husband, I get upset easily and end up crying. But I keep pushing and now I can't walk straight. I have to use the counter to hold me up, to keep my balance. I am beyond talking. I can't put sentences together. I can't hold a conversation. I desperately want to lie down and literally not move a muscle. I don't have to sleep. I have to NOT move. Not even twitch. I have to lie very very still. I am done. I loose time when I get like this. I have no idea if I sleep. Time passes unnoticed. I am as still as the dead. Uncounted hours pass and I slowly, very slowly come back to life. First I change position because I finally am able to notice that body parts have fallen asleep. Hands or feet have gone numb. Shoulders or hips ache. I finally have the energy to roll over. Slowly I am able to sit up again. In small bursts at first. A few minutes up and then I have to lie down again or I have already forgotten why I wanted to get up in the first place. Slowly I can sit up for longer or even venture a walk down the hall to the kitchen or bathroom still using the walls for balance. Slowly very slowly I can walk unsupported, fetch my own drinks or a piece of fruit. Slowly I can pay attention to the TV again, watch a show or a movie. Slowly very slowly I can sit at the computer and read emails, read Facebook posts or read the blogs. Slowly I can answer emails, I can type again and hold conversations that make sense. Then, finally I am human again. A fully functional walking, talking human that can think and communicate and feel again. This happens every day.

Wise Words from Rocky Balboa

‎"It's not about how hard you make the punches, it's how many punches you can take and still move forward." - Rocky Balboa


This is how I feel today:



but so far I'm still moving forward.

Infinite Daze

Just read this article on BBC News and it might just give new meaning to my blog title. The article is on some research looking into the use of cannabis as a pain medication. Although it was a carefully controlled study I still had images of Cheech and Chong going through my head.

While the drug offers only mild pain relief without the psychotropic effects due to the lower dosages, it had some beneficial side effects. It actually reduced anxiety, depression and sleep disturbances. Those of you who live with Fibro know that these all go hand in hand. To find one drug that has minimal side effects with multiple benefits would be a godsend. I just wonder how long it is going to be before they get done with the clinical trials and bring it to market. Right now they are trying to figure out if it should be inhaled or swallowed in pill form.

My Labels Have All Fallen Off

I was reading another blog and came across this saying "Labels are for jars and not people." While in an ideal world this should be true in the real world it isn't. We all have labels. Back in college I came up with this idea that each of my labels was a single facet of a lovely diamond. We travel from group to group and present the appropriately labeled facet to its members: daughter, sister, worker, student, activist, gardener, skater. This is how we make connections with the members. It is a short hand for us to understand each other. We share our shared experiences. Then once in a while a true friend comes along and we get to share a few extra facets with them: painter, writer, cat lover. No one EVER gets to see all of our facets. Sometimes it is because we don't show them and other times the viewer literally can't see what is presented before them. That is when we say "that person just doesn't get me".

I have been through label changes, both additions and losses. I graduated from college, married and had a child. Each event drastically changed the labels on my facets. I lost some such as 'moving alone through the world' and 'living in a single sex dorm' and gained others such as 'wife of a wonderful husband' and 'mother of a weird smart kid'.

This illness though has suddenly stripped ALL of my labels off. I have never had an experience like this before. I can't work. I can't take care of the house or others. Often I can't even think straight. I am left wondering how I am going to fill up my days? How can I intellectually challenge myself when I can't even read? How can I be a wife or mother when I can't cook or play taximom? Will I have any friends left if I keep canceling on them because I don't feel well?

The interesting thing is that now that the labels are all gone I can be very selective about which ones get stuck back on. Do I want to return to my old job or train for a new one? Do I want to be a different wife, mother, sister, daughter? Naked, I am left with nothing but questions and a bottomless pile of labels to sort through. I am hoping that I come up with a better selection than before.

A Good Evening

Well, this is the happiest I've been for a while. Not sure exactly what it is maybe too much ice cream/sugar? I slept a lot today. Got to hang out in the hammock during 75F sunny weather watching a white butterfly attached to the underside of a maple leaf. Got to watch the clouds melt for a while. Watched some very funny videos on my new favorite web site, My Food Looks Funny. Eric Idle was on Craig Fergeson. My wanky cat decided it wanted lots of cuddles (very unusual for her).I had a nice turkey burger dinner ( the recipie is on my food blog). I spent some quality time with my husband. I think he is finally starting to "get" my illness. He has been so much more tolerant of me being sick these last few weeks. I have just had a nice day and a good evening. I even feel somewhat normal. My brain is half working and I'm not dropping dead from exhaustion. All in all not a bad day.

The Substitute Wife

There is an important wedding coming up. Both I and my husband have known the groom and bride for many years and are even friendly with the groom's parents. We both want to go but it is a two hour drive away. We need to come to a decision regarding the wedding which of course I can't really do until the day of. I have no idea if I'll be okay or stuck in bed. So here is what my husband of twenty years just proposed to me:

He: "What if I took someone else?"
Me: "Girl or guy?"
He: "Girl."
Me: "No. You're not taking a substitute wife."
He, appalled: "She wouldn't be a substitute just someone I know that I can sit with at dinner and talk with. I really want to go to this wedding."
Me equally appalled: "That is a substitute wife."
He: "I won't be kissing her or anything like that."
Me: "Doesn't matter. Taking a girl to a wedding to keep you company is what a wife does. Therefore you are taking a substitute wife."

It kept going on from there. Why do guys not get this? I am barely tolerating him going out and doing stuff without me as it is. I don't mind when he goes out with the guys. I can deal when he goes away for the weekend. But I draw the line at taking a lady friend to a wedding. It just isn't right. Weddings are such a couples thing. This whole episode worries me. Is he going to start looking for a substitute wife for real? He keeps telling me that I'm broken and he has never been one to sit around the house much. He misses my company. I often wonder how long he will tolerate me now that I'm broken. One of his friends divorced his wife after she became chronically ill and I'm scared that will happen to me. I think he might stay. He is very serious about wedding vows and doesn't take them lightly so he might stick around. But this whole substitute wife thing scares me.

For Fun

A woman was sitting at a bar enjoying an after work cocktail with her girlfriends when Steven, a tall, exceptionally handsome, extremely sexy, middle-aged man entered. He was so striking that the woman could not take her eyes off him.

This seasoned yet playful heartthrob noticed her overly attentive stare and walked directly toward her, as any man would. Before she could offer her apologies for staring so rudely, he leaned over and whispered to her, "I'll do anything, absolutely anything, that you want me to do, no matter how kinky, for $20.00... on one condition..."
Flabbergasted but intrigued, the woman asked what the condition was. The man replied, "You have to tell me what you want me to do in just three words."

The woman considered his proposition for a moment, and then slowly removed a $20 bill from her purse, which she pressed into the man's hand along with her address. She looked deeply and passionately into his eyes, barely concealing her anticipation and excitement, and slowly and meaningfully said....



"Clean my house."