I'm having trouble getting any decent photos lately. So I'm posting some photos from the early winter (pre-camera funkiness).
The photos are from little outings I've done close to home. One to my favourite city park (with a creek and trails through the woods) and a couple from an overlook down the road.
I'm really enjoying being alone here at home (my roommates are away). I'm resting lots and also getting things done (I'm reviewing a piece of writing for an academic journal)...While I would probably get lonely over the long term living alone, since my one housemate's been off work, I'm almost never alone. I find both the lack of social interaction, the quiet, and the chance to create my days as I go, very stress free.
I continue to be healthier than I was in the fall, however, I still have hours and days that are awful. Some of it is self-induced. If I'm feeling OK, I'll take the dog for a short jaunt, run a quick errand, or sit up longer than I should (seriously, sitting or standing too much can cause a crash). Sometimes it hits me a few hours after activity, but more often 36 to 48hrs later.
I can't tell you how ANGRY this illness makes me sometimes. I get so frustrated. If I have an even somewhat decent day and I try to do something, I get punished. For a logically minded person, it really makes no sense?!! How can going for a very short walk, or out for lunch, cause me to spend a day or three feeling like I have influenza: weak and sick?
Honestly, how does this make biologic sense? Clearly I have a immune reaction to activity. I got a sore throat, swollen glands, headache, breathing ache, and dizziness from working on a puzzle too long. I thought I was coming down with a cold, but realized after resting that it was just the same old M.E. symptoms - symptoms that eased once I lay in bed for a few hours.
What bothers me even more is that I've been attentive, lately, to how deconditioned and weak my body is after 9 1/2 years of illness. For someone who was so physically active, in fact, had a job that involved continual physical activity, it is such a hard thing to observe in myself. And yet when I try to do little things to recondition, I collapse 1 to 2 days later with the inevitable crash.
Do you ever feel like you are banging your head against a brick wall? I sure do and yet I can't seem to find a way around, through, over, or under it?
First of all, your photos are absolutely beautiful and I'm so glad you shared them with us. Our favorite kind of country to look at!!
ReplyDeleteSecond, I am sorry you are still crashing badly from exertion and doing normal things. I understand the deconditioning. We are damned if we do and damned if we don't. Do too much and crash, do nothing and decondition making it harder to do more again!
I think my head has a permanent indentation from banging it again the wall :)
Yes, your photos are beautiful!
ReplyDeleteAnd yes, I do feel like I'm banging my head on a brick wall sometimes. Recently I had a doctor tell me--yes, me, a former hardcore athlete, mind you... he said whilst palpating my legs "ah, yes.. you have lost quite a bit of muscle mass."
Really? I felt like saying "Never, ever say that particular comment to a patient, especially if she was an athlete that weighed 130 lbs with muscle and now 103 lbs without." I mean, they say these comments, move on to the next patient, go home, eat dinner, get on with their lives and never give it a second thought. Meanwhile, I'm left sitting here with that little pearl of wisdom, for which I am already more than aware of because I can f e e l it! The best I can recommend is try some aqua conditioning. Keep your heart rate down, but get the gentle resistance.
Hang in, friend.
jenji
Do I ever feel like I am banging my head against the wall? Wow! The answer to that would be YES! A lot!
ReplyDeleteI totally get frustrated with not being able to do everything I want. Exercise is a huge challenge. I am so not consistent. I am actually hiring a trainer to see if there is a way to create a workout that building slowly yet methodically without making be have to pay with PENE!
I'm glad to hear that you are doing a bit better. I know you have had quite the year so any improvement is always a good thing.
I love your photos as usual. The very first one immediately made me think of peace and serenity.
Hahaha Renee, well hopefully you can cover the marks with your bangs....I too have a dent or something. And I'm glad I'm not the only one. I also don't want to give up trying you know? But I do induce misery when I do too much but can't seem to help doing it...ideas? tips?
ReplyDeleteJenji, I know you get the body stuff having been an athlete yourself. Dr.s can be so insensitive. My specialist said when I told her I'd lost a fair amount of weight, "yep, you're all fat and bone" I actually thought that was pretty funny and she meant it to be, although it is so hard to accept this reality. My body memory must be very strong because sometimes I go to do stuff even 9 years later and think I'll be able to.
ReplyDeleteDominique, a trainer is an interesting ideas...but they'd have to be able to "get" M.E. and the severity of PEM. If they did, I think it could be really useful. I had someone come here in the fall to show me some yoga and even having explained how sick I was, she had a hard time getting how weak I was. I agree about being methodical. My specialist says only ever increase by 10% and that I should be able to do whatever (5 min walk for example) for a month or so without crashing before I increase....but do I follow the rule? NO...
ReplyDeleteupnorth,
ReplyDeletebeautiful pictures! the first one is my favorite.
i know exactly how you feel. exercise has been my number one challenge, and every crash/relapse had to do with my over-estimation of my physical capability. i learned long ago that "rest" and "diet" were the first priority but i could never really follow this rule... sometime i thought how could i be so stupid, not learn from "mistakes"? but i am doing better now. i rest a lot, whenever i need. it helped.
winter is the season of storing energy, by chinese traditional medicine. i don't necessarily believe chinese medicine but i think this idea seems right to me. i believe the reason that most ME sufferers crash mostly is because they (we) don't have enough "stored" energy. i more and more believe that most chronic illnesses have more or less to do with this "energy shortage" - a condition that can "kill" people more than we can imagine. so i hope you can manage to rest some more.
hope you get better soon. never give up hope.
Hi UpNorth,
ReplyDeleteThanks for the photos. I especially liked the last one with the red roof in the foreground and the splashes of yellow further back and the mysterious island and grey sky, I can see that as sort of an abstract painting ---- I like your words "create my day." That's how I try to approach my days, and then I get pulled into some social situation, have to talk a lot, then wait to see if I pay for it a day later, usually do and like you I get so ANGRY. We live lives of constant vigilance, always wondering if we're doing too much, will we be 'punished' (good word) a day later. Well, I planned to write a little more, but the wall closing in on me and I better stop now and rest and lay down. We're in sync, that's for sure. How can it be that increasing just a fraction of an activity more results in such consequences of setbacks. Big brother, big sister always looking on and I've little say in the matter. I hope you had a better day.
Leah