About
Fibromyalgia is a BITCH!!!
I used to wake up with bucket loads of energy (okay, most days, more like one bucket…). But my new reality is more like a tiny cup of energy.
This energy is extremely precious because it’s all I have to make it through the day. So I have to plan my days very carefully. I have to micro plan. For example, to put my pants on it is easier to thread my pant leg onto my foot with my heal resting on the floor and then lift up my heel and rest my toes on the floor and pull up my pants, than just lifting up my leg (uses a too large portion of my energy). Yep, it’s that ridiculous.
I sleep a lot, about 10 hours a night and I have to nap in the afternoons. But my sleep is not restorative. I wake up just as tired. As soon as I open my eyes, I am looking forward to getting back to bed. Yes, I have had every test, even sleep tests. They prescribed a sleep apnea machine (CPAP), doesn’t make a difference.
My worst enemy is stress. Stress steals my energy in large chunks. Stress can be physical, mental or emotional. Makes no difference to me, they’re all killers. Stress makes me nose-dive into incoherence and extreme pain and fatigue. This takes days (sometimes weeks) to recover from.
My pain level varies greatly. Warmer months are easier although weather affects me greatly (storms are a bitch). My pain level is likely to be around 4/10 in the summer. This time of year it’s more like 6-7/10. And since pain is a form a stress... you do the math. If I could afford it, I’d move to Arizona, warm and dry...
I can still drive a car just not for very long at a time, 15-20 mins at a time max. Because you have to concentrate and focus when you drive (preferably) and that is a type of mental stress.
My pain is all over but mostly concentrated in my hips, my knees, my ankles and my right leg constantly feels sharp, stabbing pain (driving leg). My best position is the “lazy-boy” position with legs raised with an extra pillow and my back taking a part of the load. Standing and sitting straight are best done in small doses. I can manage light house work, the dishes, the laundry but in little spurts. I have a cleaning lady who visits for 3 hours once a month.
Then there is the “fibro fog” (it’s a real thing), you know when you have a head cold and concentration is elusive...fibromyalgia offers this without the cold. My mornings are spent in a fibro fog. I strive to have all my appointments in the afternoon.
I can push myself and perform beyond my known limits; I call this running on adrenaline. I do it all the time; I had to do it this weekend to be with Mom but the price is very high, the recovery time is... long and arduous. But I will willingly go into adrenaline mode, some things are “worth it”, but all the while I am calculating the price I will have to pay...
I had to cut my hair short because long hair takes too much energy to maintain. I’ve switched from bathes to showers because showers are easier to get in and out of. I wear mostly yoga pants and t-shirts because I am sensitive to the touch. I have to use a walker to stretch my energy (I transfer a lot of weight on my arms to spare my hips when using the walker).
I’ve been very pro-active in finding solutions; I try hard to stay objective and open –minded. I go to the gym twice a week for an hour with an MS group, some of them are in wheel chairs, some use walkers or canes but the exercises are adapted to our capabilities. Yes, I do break into a sweat!! (and that’s just walking into class!! (I joke)).
If I could lose weight; that would greatly help me. I take a very complex cocktail of prescriptions mostly for pain and 3 of these prescriptions have weight gain as a side effect. I am proud to say that in the 5 years that I have been ill, I have managed not to gain weight. (yea me!!!). Losing weight has been more elusive even though I have greatly changed my diet and I do move (if I stop I stiffen up).
But, I’m still me. I think my sense of humor is intact. I have a good heart. And apparently I can still piss people off (no comment).
So, please, I don’t want your sympathy, just your understanding. I would rather you ask questions than assume about me.
I used to wake up with bucket loads of energy (okay, most days, more like one bucket…). But my new reality is more like a tiny cup of energy.
This energy is extremely precious because it’s all I have to make it through the day. So I have to plan my days very carefully. I have to micro plan. For example, to put my pants on it is easier to thread my pant leg onto my foot with my heal resting on the floor and then lift up my heel and rest my toes on the floor and pull up my pants, than just lifting up my leg (uses a too large portion of my energy). Yep, it’s that ridiculous.
I sleep a lot, about 10 hours a night and I have to nap in the afternoons. But my sleep is not restorative. I wake up just as tired. As soon as I open my eyes, I am looking forward to getting back to bed. Yes, I have had every test, even sleep tests. They prescribed a sleep apnea machine (CPAP), doesn’t make a difference.
My worst enemy is stress. Stress steals my energy in large chunks. Stress can be physical, mental or emotional. Makes no difference to me, they’re all killers. Stress makes me nose-dive into incoherence and extreme pain and fatigue. This takes days (sometimes weeks) to recover from.
My pain level varies greatly. Warmer months are easier although weather affects me greatly (storms are a bitch). My pain level is likely to be around 4/10 in the summer. This time of year it’s more like 6-7/10. And since pain is a form a stress... you do the math. If I could afford it, I’d move to Arizona, warm and dry...
I can still drive a car just not for very long at a time, 15-20 mins at a time max. Because you have to concentrate and focus when you drive (preferably) and that is a type of mental stress.
My pain is all over but mostly concentrated in my hips, my knees, my ankles and my right leg constantly feels sharp, stabbing pain (driving leg). My best position is the “lazy-boy” position with legs raised with an extra pillow and my back taking a part of the load. Standing and sitting straight are best done in small doses. I can manage light house work, the dishes, the laundry but in little spurts. I have a cleaning lady who visits for 3 hours once a month.
Then there is the “fibro fog” (it’s a real thing), you know when you have a head cold and concentration is elusive...fibromyalgia offers this without the cold. My mornings are spent in a fibro fog. I strive to have all my appointments in the afternoon.
I can push myself and perform beyond my known limits; I call this running on adrenaline. I do it all the time; I had to do it this weekend to be with Mom but the price is very high, the recovery time is... long and arduous. But I will willingly go into adrenaline mode, some things are “worth it”, but all the while I am calculating the price I will have to pay...
I had to cut my hair short because long hair takes too much energy to maintain. I’ve switched from bathes to showers because showers are easier to get in and out of. I wear mostly yoga pants and t-shirts because I am sensitive to the touch. I have to use a walker to stretch my energy (I transfer a lot of weight on my arms to spare my hips when using the walker).
I’ve been very pro-active in finding solutions; I try hard to stay objective and open –minded. I go to the gym twice a week for an hour with an MS group, some of them are in wheel chairs, some use walkers or canes but the exercises are adapted to our capabilities. Yes, I do break into a sweat!! (and that’s just walking into class!! (I joke)).
If I could lose weight; that would greatly help me. I take a very complex cocktail of prescriptions mostly for pain and 3 of these prescriptions have weight gain as a side effect. I am proud to say that in the 5 years that I have been ill, I have managed not to gain weight. (yea me!!!). Losing weight has been more elusive even though I have greatly changed my diet and I do move (if I stop I stiffen up).
But, I’m still me. I think my sense of humor is intact. I have a good heart. And apparently I can still piss people off (no comment).
So, please, I don’t want your sympathy, just your understanding. I would rather you ask questions than assume about me.
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