We are all moved in to our new home!!!!! Oh, what a big job it was, but I’m so happy to be here in the last house we are ever going to live in! Well, let’s put it this way. If we ever move again, we’re hiring people to do the packing and unpacking for us. Ray had to do most of the work (as usual) as well as all the cleaning at the old place, but I definitely did my part as well, and (as usual) I over did things. I packed up the whole kitchen and unpacked the craft room and most of the master bedroom. Then I slept for days on end, trying to get caught up.
I also ended up seeing Dr. Leong on Tuesday, Oct. 24th to get refills on some of my meds, and made the HUGE mistake of telling him how I felt we’d found the right combination for my TN, as I’d had no flare-ups for awhile. Cue major flare-up that night that lasted for the rest of the week. FUCK! I should know by now to never, ever say stuff like that out loud because it only backfires. So, part of the sleeping has been to try and get away from the pain at the same time.
Exhaustion is a curious beast. I wrote about it on Facebook about 4 years ago, and it came back as a memory just a few days ago at a rather appropriate time. I’m going to share the post here, because I’m still too tired and too lazy to come up with a completely new blog post. I think it’s relevant though and good reading, as it shares good information about the differences between people with Fibromyalgia and “normal” people and being tired or fatigued. Let me know your thoughts in the comments.
I’ve had a number of people ask me about my Fibro and constant fatigue and how it affects me. Here’s a long, but pretty accurate depiction of my life. I’m not sharing this with you for sympathy, but for educational purposes more than anything. I love and appreciate my family and friends (especially the friends who have become my family). For those who don’t know me as well, or who haven’t kept up to date with my life, here you go (warning, it’s long!):
How Does FMS (Fibromyalgia Syndrome)/MPS (Myofascial Pain Syndrome) Make Me Feel? (adapted and modified from the fibrowelcomepackage.com)
My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors, clothing tags, etc. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to a loud and repetitious noise. I really can’t stand it.
My intolerance – I have no tolerance for temperatures. I may sweat…profusely. It’s embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. Sometimes, when I’m lucky, I feel cold and hot at the same time. My internal thermostat is broken, and nobody knows how to fix it.
My depression – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My uniqueness – Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
The difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things.
Being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
Repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what FMS/MPS does to you. – Please understand that FMS/MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
“Getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously FMS/MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, FMS/MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
If I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/MPS does not forgive. – If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.
My Family and Friends: In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the the doctor, or to the physical therapist. I need you on a different level too . you’re my link to the outside world… if you don’t come to visit me then I might not get to see you. … and, as much as it’s possible, I need you to accept me as I am, just as I have. I covet your prayers and good wishes but more than anything, I crave normality. I just want to be “normal” and enjoy life the way everyone else does. I realize it’s not possible, but please don’t give up on me. I’m still Pam/Pammi/Pammers/Pamela/Pammicakes/PJ (and any others I might have missed!)
remember…there is always hope!