This may be more random than anybody can stand. I've been thinking about how to explain, good days, bad days, what I can and can't do. When I started thinking about it, I started tearing up. Not because of what I can't do, what I've lost, or the cause of it all. But because I can't ask for things from my family worth shit. Part of this is me, or maybe all...not sure. When I ask my husband to do stuff for me, I get a heavy sigh or two...or three from him, then begrudging, sometimes surly performance. Then I feel I have to justify why I'm asking him. Doesn't help that he is from a stoic Germanic family, that never gets sick, and when they do, they just keep on going. He has stayed home from work, but he has to be almost dying, or have cut off a finger...(true story). I tried asking my son to cook eggs for me once. But my husband started bitching at him about the pan he was using, and then this, and then that. Finally my son, (a Freshman? at the time), gave up. An hour later, I summoned the energy to cook my own eggs. We've been married 27 years. I almost left him a couple of years ago. But we went through counseling. I told him if he couldn't accept me as is, I was out of here. Easier to deal with my own infirmities by myself than having to justify and explain to others AND DEAL with my infirmities. If he hadn't said he still loved me and wanted to be with me, and could deal, I would have left. I sometimes still think about it. The toughest part, is remembering what the counselor told me to do...(crazy, huh?)
So, I started thinking about how to explain my energy levels, etc. about 3 years ago, when I realized that I cared about how I looked again. Funny! I never thought about vanity taking energy. Sure, the first thing to go was me wearing make-up, but I never connected it further. So...I started thinking...always a dangerous proposition... I decided, it would be easier to define each "level" by what I CAN do, not by what I CAN'T. Otherwise, the list(s) would be repetitive and ENDLESS.
What I can and can't do, right now, are defined by my pain levels. My pain is: body aches from Fibromyalgia, Neck Pain from partially herniated discs, shoulder and back pain from referred neck pain and constant tension/knots from Fibromyalgia. Knee and hand pain from Arthritis and over-exertion. Overall inflammation and pain when I have a food allergy reaction, blinding behind the eyes headache, and food coma. Pain levels also are affected by how much sleep I did or didn't get the night before. How much sleep I get, is affected by my pain levels. Ain't it a loverly Catch-22? Overall pain is also affected by over-exertion. Cognition and memory are affected by loss of sleep, and pain levels. EVERYTHING is a trade-off, a barter system. Every task that requires physical activity, will have a trade-off in energy used/lost, recovery time, and payback pain. Even if I pace myself, there is STILL recovery time and payback. The times that I am able to dress and get myself out the door, I automatically overdo, because I have no idea, when I'll have the energy to get out the door again. Understand, that this "hierarchy" is not linear. I can skip levels, and some I haven't functioned at in years. I'll list them linearly and number them, because I can't think of any other way to do it. Most of the time, I DO have to attain the previous level in order to progress to the next one...I think you'll see what I mean once we get into it. Some things that I attain at one level, are let go when I start taking on other tasks. Apparently, I can only juggle so many balls at one time.
Level One
This is when I'm in my food allergy "coma". I sleep so deep that I am unable to awaken. I can't respond to the Alarm Clock or phone. With persistent physical prodding, I HAVE gotten out of bed and gotten dressed, but once I'm stationary, I can't stay awake. I don't usually awaken to go to the bathroom...it's just postponed. Obviously, meals and meds are skipped.
Level Two
Usually Recovery from Level One. As described in yesterday's post. I don't bathe. I am up out of bed. But mainly I am occupying space. If it can't be grabbed out of the cabinet or fridge and eaten, or zapped in the wave, I don't eat. Only pain meds are taken, my numerous supplements are usually skipped.
Level Three
I dress, usually in recycled clothes, so I don't have so much laundry. I don't shower. I can usually prepare one meal. I may or may not have the energy to take all my meds and supplements. I mostly read. Other activities are postponed because I just go in circles.
Level Four
Medical appointment or errand day. Depending on the night before, I may or may not shower. I will wet down my perm or wash my hair in the sink. I will put on clean clothes, brush my teeth. Usually do not put on make-up. At my lowest functional level, I'll just go to the appointment and back. When I get back home, I have to trade the errand, for making my meal. So, I usually open a can or zap a frozen meal.
Level Five
Out of bed, shower, and several errands. The trade-off is in poor attention. The adventure is when I unload my bags at home. I have a tendency to grab the item NEXT TO what I was reaching for. Never know what's in the bag until I get home. Adventures in Shopping! It can take up to week to recover. I do most of my non-grocery shopping on line. I eat a nuked or canned meal.
Level Six
Out of bed, shower, brush teeth and make-up. If it's a fantastic day, I meet somebody for lunch and visit. I was unable to do this until about 3 years ago.
Level Seven
Level Six, plus I now have a sense of humor. Actually, this is a trade-off too. Sometimes all the ablutions, dressing and everything precludes the humor. Sometimes, I am myself, but unable to bathe and get dressed. For about 6 years after I stopped working, I was unable to feel joy. Light housekeeping, dishwasher, clean kitchen counter, laundry, can be from Level Four on up, but again, part of the energy barter. Laundry is also in this Zone. The longest I have gone without doing laundry is two months. It helps to have a lot of underwear.
Level Eight
I can talk on the phone, or e-mail. Level Four on up and part of the energy barter. Unable to do this without REALLY paying for it until about two years ago. Definitely comes and goes. Might be able to vacuum or sweep. I can NEVER clean the tub, because I'm too sensitive to the cleaners, no matter how earth-friendly we shop. Gardening in the summer. Went 8 years without, then slowly reclaimed a plot at a time. This last summer was the first summer I had reclaimed all the flower plots in both the back and front yards. I am the official weeder. It was a lot easier when I was reclaiming, now I have to take care of EVERYTHING. That is MUCH HARDER and part of the energy barter.
Level Nine
Vanity, caring what I look like, enjoying new clothes.
Level Ten
Physical Intimacy with my Husband. The more other things I do, the more this takes a hit. Trying to make it a higher priority. Can go as long as 3 months without.
Level Eleven
Enjoying travel. It can take up to 2 months to recover from travel/vacation. Light walks (no more than once a week or knees won't let me sleep). Though I LOVE to walk, but mechanically, my body can no longer do more than one time a week. Light flirtation with sales persons. What can I say, I love people, when I have the energy. g
Level Twelve
Inconsistent Christmas Cards and Presents.
Level Thirteen
Starting to remember Birthdays, holidays, special occasions and buying and sending cards. Only in the last year.
Level Fourteen
Facebook, e-mails, blog and volunteering. Trade-off/barter meals and sex and laundry. Only able to do in the last month.
Level Fifteen / / g
Exercise regularly. I have to super-modify because of my knees and Fibromyalgia. I start off with 5 minutes each on recumbent bike, ellipticycle, and rowing machine. With 15 minutes in Sauna (to detoxify when I'm allergic). Advance by five minutes when I can do the exercises with full recovery by the second day after exercise. I was able to work up to 1 hour of exercising 2-3 x's/wk. and maintain this for 3 months. But have energy bartered for vanity, FB, and volunteering. I have gone twice in the last month.
Level Sixteen
Hobbies and doing things for fun. (except for volunteering and light visiting, have not yet attained this. Still very inconsistent in communication with family and friends.
What isn't said
My husband does all his own cooking. He has ALWAYS done his own laundry. My children have done their own laundry since 5th grade. Both my kids are out of the house now. My Son is a college Freshman, my daughter just graduated from H.S. If I don't prepare it for myself I don't eat. I never eat three meals/day, and probably just eat one meal a day about 3 days a week.
I will break down and vacuum, sweep and mop every 3-6 mos. All three of those are very hard because of lower back disc problems. I did shopping for the whole family until the last year or so. Now, we each shop for our own. I usually do the bills. That is a Level Three Function and an energy barter. My husband does all the home and auto repair and mows the lawn.
Tomorrow I will talk about what a friend can do for somebody like me...How to be An Angel....
Peace (Khotso in Sesotho) and Thank you!
Kismet
So, I started thinking about how to explain my energy levels, etc. about 3 years ago, when I realized that I cared about how I looked again. Funny! I never thought about vanity taking energy. Sure, the first thing to go was me wearing make-up, but I never connected it further. So...I started thinking...always a dangerous proposition... I decided, it would be easier to define each "level" by what I CAN do, not by what I CAN'T. Otherwise, the list(s) would be repetitive and ENDLESS.
What I can and can't do, right now, are defined by my pain levels. My pain is: body aches from Fibromyalgia, Neck Pain from partially herniated discs, shoulder and back pain from referred neck pain and constant tension/knots from Fibromyalgia. Knee and hand pain from Arthritis and over-exertion. Overall inflammation and pain when I have a food allergy reaction, blinding behind the eyes headache, and food coma. Pain levels also are affected by how much sleep I did or didn't get the night before. How much sleep I get, is affected by my pain levels. Ain't it a loverly Catch-22? Overall pain is also affected by over-exertion. Cognition and memory are affected by loss of sleep, and pain levels. EVERYTHING is a trade-off, a barter system. Every task that requires physical activity, will have a trade-off in energy used/lost, recovery time, and payback pain. Even if I pace myself, there is STILL recovery time and payback. The times that I am able to dress and get myself out the door, I automatically overdo, because I have no idea, when I'll have the energy to get out the door again. Understand, that this "hierarchy" is not linear. I can skip levels, and some I haven't functioned at in years. I'll list them linearly and number them, because I can't think of any other way to do it. Most of the time, I DO have to attain the previous level in order to progress to the next one...I think you'll see what I mean once we get into it. Some things that I attain at one level, are let go when I start taking on other tasks. Apparently, I can only juggle so many balls at one time.
Level One
This is when I'm in my food allergy "coma". I sleep so deep that I am unable to awaken. I can't respond to the Alarm Clock or phone. With persistent physical prodding, I HAVE gotten out of bed and gotten dressed, but once I'm stationary, I can't stay awake. I don't usually awaken to go to the bathroom...it's just postponed. Obviously, meals and meds are skipped.
Level Two
Usually Recovery from Level One. As described in yesterday's post. I don't bathe. I am up out of bed. But mainly I am occupying space. If it can't be grabbed out of the cabinet or fridge and eaten, or zapped in the wave, I don't eat. Only pain meds are taken, my numerous supplements are usually skipped.
Level Three
I dress, usually in recycled clothes, so I don't have so much laundry. I don't shower. I can usually prepare one meal. I may or may not have the energy to take all my meds and supplements. I mostly read. Other activities are postponed because I just go in circles.
Level Four
Medical appointment or errand day. Depending on the night before, I may or may not shower. I will wet down my perm or wash my hair in the sink. I will put on clean clothes, brush my teeth. Usually do not put on make-up. At my lowest functional level, I'll just go to the appointment and back. When I get back home, I have to trade the errand, for making my meal. So, I usually open a can or zap a frozen meal.
Level Five
Out of bed, shower, and several errands. The trade-off is in poor attention. The adventure is when I unload my bags at home. I have a tendency to grab the item NEXT TO what I was reaching for. Never know what's in the bag until I get home. Adventures in Shopping! It can take up to week to recover. I do most of my non-grocery shopping on line. I eat a nuked or canned meal.
Level Six
Out of bed, shower, brush teeth and make-up. If it's a fantastic day, I meet somebody for lunch and visit. I was unable to do this until about 3 years ago.
Level Seven
Level Six, plus I now have a sense of humor. Actually, this is a trade-off too. Sometimes all the ablutions, dressing and everything precludes the humor. Sometimes, I am myself, but unable to bathe and get dressed. For about 6 years after I stopped working, I was unable to feel joy. Light housekeeping, dishwasher, clean kitchen counter, laundry, can be from Level Four on up, but again, part of the energy barter. Laundry is also in this Zone. The longest I have gone without doing laundry is two months. It helps to have a lot of underwear.
Level Eight
I can talk on the phone, or e-mail. Level Four on up and part of the energy barter. Unable to do this without REALLY paying for it until about two years ago. Definitely comes and goes. Might be able to vacuum or sweep. I can NEVER clean the tub, because I'm too sensitive to the cleaners, no matter how earth-friendly we shop. Gardening in the summer. Went 8 years without, then slowly reclaimed a plot at a time. This last summer was the first summer I had reclaimed all the flower plots in both the back and front yards. I am the official weeder. It was a lot easier when I was reclaiming, now I have to take care of EVERYTHING. That is MUCH HARDER and part of the energy barter.
Level Nine
Vanity, caring what I look like, enjoying new clothes.
Level Ten
Physical Intimacy with my Husband. The more other things I do, the more this takes a hit. Trying to make it a higher priority. Can go as long as 3 months without.
Level Eleven
Enjoying travel. It can take up to 2 months to recover from travel/vacation. Light walks (no more than once a week or knees won't let me sleep). Though I LOVE to walk, but mechanically, my body can no longer do more than one time a week. Light flirtation with sales persons. What can I say, I love people, when I have the energy. g
Level Twelve
Inconsistent Christmas Cards and Presents.
Level Thirteen
Starting to remember Birthdays, holidays, special occasions and buying and sending cards. Only in the last year.
Level Fourteen
Facebook, e-mails, blog and volunteering. Trade-off/barter meals and sex and laundry. Only able to do in the last month.
Level Fifteen / / g
Exercise regularly. I have to super-modify because of my knees and Fibromyalgia. I start off with 5 minutes each on recumbent bike, ellipticycle, and rowing machine. With 15 minutes in Sauna (to detoxify when I'm allergic). Advance by five minutes when I can do the exercises with full recovery by the second day after exercise. I was able to work up to 1 hour of exercising 2-3 x's/wk. and maintain this for 3 months. But have energy bartered for vanity, FB, and volunteering. I have gone twice in the last month.
Level Sixteen
Hobbies and doing things for fun. (except for volunteering and light visiting, have not yet attained this. Still very inconsistent in communication with family and friends.
What isn't said
My husband does all his own cooking. He has ALWAYS done his own laundry. My children have done their own laundry since 5th grade. Both my kids are out of the house now. My Son is a college Freshman, my daughter just graduated from H.S. If I don't prepare it for myself I don't eat. I never eat three meals/day, and probably just eat one meal a day about 3 days a week.
I will break down and vacuum, sweep and mop every 3-6 mos. All three of those are very hard because of lower back disc problems. I did shopping for the whole family until the last year or so. Now, we each shop for our own. I usually do the bills. That is a Level Three Function and an energy barter. My husband does all the home and auto repair and mows the lawn.
Tomorrow I will talk about what a friend can do for somebody like me...How to be An Angel....
Peace (Khotso in Sesotho) and Thank you!
Kismet
Wow, Kismet. You sure have had a time of it, but it appears you are very in touch with it all and making it work to the best of your ability. Hang in and keep up the good work. As far as the everyday stuff like cooking, I know with not working, things might be tight, but could someone maybe come in a couple of times a week to help with that at least when you need it? You should be eating more natural foods that need to be fresh at the time instead of prepared foods from a can, etc. Just a thought. Hope this helps.
ReplyDeleteJoan, you angel! Yeah, have been trying to find somebody. The stumbling block right now, is my allergies are changing, still emerging, I almost don't know what to tell people to cook for me. But, I DO need to do this, because it really isn't as hard as I'm making it. And not eating right, does set me back. Thanx for all your encouragement and positive comments. :)
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