[Esofia]

Dieting software can be useful when it allows you to track activities all the way down to the really basic ones, as that way it's easier to pace yourself.

Out of curiosity, why do you feel you need more exercise if you're having flare-ups with the new job?

Do you think any of the stress of the new job could be a sensory input thing? Like 90% of people with CFIDS (according to my eye specialist, who has done research into this), I have CFIDS-related eye problems which include getting bad reactions to fluorescent lights. The eye problems are partly muscular and partly neurological, a type of visual processing disorder. I also have Auditory Processing Disorder, which seems to have been lifelong but was hugely exacerbated by the CFIDS. Being somewhere strip-lit and noisy is enough to exhaust me all on its own, which is why I mentioned that CFIDS is known to be made worse by stimulus as well as exertion. Maybe your new office is worse in this respect? If so, is there anything you could do to cut down on the stimuli? I have prescription tinted glasses to help with the fluorescents that are pretty much everywhere (look into Meares-Irlen Syndrome if you think this might affect you), and at one point the hearing therapist gave me in-ear white noise generators when I was having particular trouble with hypersensitivity to sound. I'd been using ear plugs, but they're a very bad idea, they just make the hypersensitivity worse.

[MeliZ]

I only had one day of a flare-up, really. Other than that, it's been pretty much what I normally deal with on a daily basis, which means I'm not feeling great, but I'm able to get around and function. I was just feeling the need to move more, due to just classifying myself as on a diet now. But after reading your posts, like I said, I won't push myself. And I appreciate the concern.
I joined fitday to track everything, so that should help. And it made me aware that I was burning calories just by living, so that helps me feel better, too.
It's possible. I think it's also that I have a longer drive to work, and driving on the highway tends to make me stress out and tighten up. I feel like my reaction time is slowed compared to everyone else, so have to work doubly hard to not cause any problems in my commute. I've never been in an accident, because I focus as much as I possibly can while behind the wheel. So by the time I get to work, I'm exhausted from that alone. My office is really quiet though, so that helps. There's only a few of us back there. It makes it easy to concentrate, because usually there's really only 2 of us.
I have issues with sensory input, but only really when I feel my worst. But I find the worst is touch. My husband has to be careful when he touches me if I'm not feeling well.
Gotta run.

[mamakat]

MeliZ,
I find shopping more strenuous on my body(and mind) then riding my recumbant bike. It's something about those floors and standing a lot. It kills my back and hip. I always feel so drained after shopping whereas a good 45 mins on the bike I feel invigorated (most of the time-not always).

Lately my thing has been trail hiking. In my head I think I can do this then when I'm doing it I say I can't but now if we stop I'm stuck in the woods. We tried Sleeping Giant and another lake walk. Geeze, what a mistake! Laid up for days. Now I'm researching walks instead of hikes I like to do one a week during the summer so the kids have something to do. One year we did Lake Compounce all summer. Ugh, that's a lot of work. One year we drove across country doing amusement parks. I got super sick mid trip and DH flew out and met us and took over.

It's an adventure finding out what we can do, but a nightmare finding out what we can't. I am trying to stay upbeat and positive. I stopped shopping 3 years ago (anxiety was really bad) but am doing babysteps and coming back to that world. Tried it last week-hated it. But have to do it this week as DH is out of town all week.

Have a great day/week

[MeliZ]

haha, yeah, sometimes shopping can be stressful. We only really went to two stores and didn't shop that long, so it wasn't so bad. My husband pretty much always comes with me so he can help if I start feeling too sick.
Good luck with shopping this week.

[Justwant2Bhealthy]

I don't mind shopping on days that I feel well; sometimes, my DH does the small errands & pickups. If we have lots to do, I go and do that. What we do is go by two things -- how I feel that day and by the weather. For me the hardest things is humid, hot days.

I do whatever I can each day, but sometimes, I have days that I just rest and do lighter stuff; and that works well for me. I am finally learning to pace myself (in the past, I would always overdo it and then pay for it for the next few days); now, if I have a hard day, I rest the very next one.

Had homemade pasta salad with tuna for dinner tonight; didn't have to turn on the stove. It was simple with pre=cooked Penne Pasta, baby cukes, tomato, onion, shredded carrot, knib corn (leftover from a cob), and a nice light dressing -- I used cucumber dressing on it this time.

Packed some more boxes yesterday. Had a quiet day today. Have a great week ladies ... Rosebud

[Esofia]

Originally Posted by MeliZ

I only had one day of a flare-up, really. Other than that, it's been pretty much what I normally deal with on a daily basis, which means I'm not feeling great, but I'm able to get around and function. I was just feeling the need to move more, due to just classifying myself as on a diet now. But after reading your posts, like I said, I won't push myself. And I appreciate the concern.
I joined fitday to track everything, so that should help. And it made me aware that I was burning calories just by living, so that helps me feel better, too.
It's possible. I think it's also that I have a longer drive to work, and driving on the highway tends to make me stress out and tighten up. I feel like my reaction time is slowed compared to everyone else, so have to work doubly hard to not cause any problems in my commute. I've never been in an accident, because I focus as much as I possibly can while behind the wheel. So by the time I get to work, I'm exhausted from that alone. My office is really quiet though, so that helps. There's only a few of us back there. It makes it easy to concentrate, because usually there's really only 2 of us.
I have issues with sensory input, but only really when I feel my worst. But I find the worst is touch. My husband has to be careful when he touches me if I'm not feeling well.
Gotta run.

I expect you're right about the reaction time, considering the neurological symptoms. Can you rest before and after driving? Is there any chance of a carshare? Are your eating patterns giving you fuel when you need it so that you have more energy for driving?

I reckon that with sensory overload, you notice it when it's really bad, but it's still a low-level factor at other times. Things like fiddling with the lighting can help more than you think sometimes.

The touch thing is odd, isn't it! I knew a woman who got it really badly, although it's not entirely certain that she actually had ME/CFIDS.

Sorry for assuming you're new to dealing with ME/CFIDS, by the way. I know very few people with it who've managed to stay in work that long, they mostly either get over it in a few years or end up long-term ill and more severely affected, and I was making a wild estimate based on that plus how you seemed to be coping with the pacing.

One of the nice things about this thread is that those of us who can't exercise in the way that healthy people can, can use it as a place where we all have that in common, so that we don't feel we have to be keeping up with the healthy folks' level of exercise. It really is difficult when everyone is talking happily about how much they exercised today and occasionally saying that you can't lose weight without exercising. Yes you can! The main point of exercise is to keep you healthy, and for us, keeping ourselves healthy means a different pattern of behaviour, whether that's no exercise, very small amounts of exercise, non-cardio forms of exercise, or whatever.

By the way, would some form of relaxation help at all? Very gentle yoga or something else that involves minimal physical exertion, but just enough that you feel you're doing something physical, and helps with general stress? Even a form of meditation, with a basic stretch or two thrown in? Ironically, while cardio is meant to be the best for weight loss, I think it's the worst for ME/CFIDS.

And on that note, I am going to go and do a minute on the exercise bike. Yes, a whole minute!

[Justwant2Bhealthy]

I like some of the yoga & meditation movements; it's true that some of them are quite easy. Beginner's TAI CHI is similar; I often do the sun dial one. Just putting your arms at your side and bringing them up to your head like a round sun -- repeat several times; it's a kind of very mild stretch. I made up a bunch of them and called them REPETITIVE THERAPEUTIC MOVEMENTS; some I do standing and some sitting. You can make up your own series and do them each day. GOOGLE yoga or Tai Chi and something will come up.

We had a nice cool day, so I put the oven on and baked a large pan of chicken pieces with homemade BBQ sauce; plus made an Apple-Rhubarb compote done in the oven, since it was on. We'll eat this over the next few days.

Did some more techi stuff regarding our house this week; signing papers and arranging the utility transfers, etc. Glad that's all done; now just signing at the lawyers next week and we'll be ready to move soon. This week, I'm doing more of the food and clothes, or whatever else I can find; I actually have to hunt now. I found DH some nice crates to put his stuff in and he was pleased about that; now he can do more of his stuff next week.

Time for tea & do some reading for awhile. Hope you all have a wonderful, relaxing Sunday tomorrow ... Rosebud

[Esofia]

I basted a quilt over two days and then went for a medical visit at the start of the week, and am now having a nice little relapse to celebrate. Lots of constructive resting, which translates as lying in bed watching silly TV. I'm trying to keep my calorie deficit decent (I factor in my exercise, not that it's much), but yesterday I was really hungry all day and finally gave in to a bagel in the evening. Still, it's the first time my calorie deficit has been less than 300 in the three months that I've been dieting, and I think one bagel in three months over plan is not doing too badly! Today I am planning to try a little gentle beading, and perhaps some quilt-sketching. Anything more energetic is still on the back burner until I recover some more.

[mamakat]

Esofia,
Where do you baste? When I first started quilting a friend taught me to baste on the floor. That killed my back and surely knocked out the hip. I got a basting table and still the same problem. I wanted to hire people to baste for me especially when I didn't have a friend to help. Eventually I quit quilting, the hard part took the fun out of it for me.

I learned around 2003 how to quilt (took a class) by hand. It was the first time I learned how to thread a needle! From that class I had to learn everything. I taught myself all sorts of things. My all time favorite is applique and trapunto (forgot spelling). I surpassed everyone I knew who had been doing it for years, but never venture out of just blocks. I miss it sometimes and maybe one day I'll start again. I just don't have room in this old house. But I don't miss basting and I can see how that took a lot of you.

I hope you get better soon

[Esofia]

Thanks, I'm perking up gradually, though today is being another nice lazy day.

I pin-baste on the floor with a minion to help. So this does mean a certain amount of crawling around, but the minion (ok, support worker, sometimes friend or my partner) does the pressing, moving the furniture out of the way, sweeping the floor and so forth, which means that it exhausts me less. It's more a general fatigue and muscle pain thing with me, do you have EDS or something similar? Anyway, I use safety-pins a foot apart, and then a few days later (or the next day if I'm being an enthusiastic idiot) I thread-baste on the dining table using herringbone basting. I know most people are fine with pin-basting, but for hand-quilting I really do need good close thread-basting, it prevents any mishaps and doesn't interfere with the Q-snap placement. This was a sofa quilt and I did manage to do it in one day, but I should probably have done it over two, I just didn't want to leave it and my partner was going to need the dining table.

I've been quilting since 2007, and have never been to a class. I mostly taught myself from books, plus I know a very helpful internet forum and a good friend of mine helps me down the phone too. I haven't tried trapunto yet, but so far I'm not wildly enamoured of appliqué, though I'll use it when needed. I know what you mean about people who never venture further than blocks, I don't really get that either. I've been designing my own quilts since the second one I made. I'll send you a PM with a link to my quilting blog if you're curious. Do you have photos of your work online?

Have you tried beading? Much smaller-scale, and not as physically demanding, I find. I do find that it can lead to eye-strain and be a bit obsessive, though, you're staring at this tiny area and fretting about details which no one will actually be able to notice.

And yes, tell me about the space thing. I'm in a one-bedroom flat, we have about 4000 books, and I just have my one table for sewing on. I did manage to clear enough space on it to get out the sewing machine, but I still don't know how to use it, which is a snag.

[mamakat]

Esofia,

I had surgery on both my hands last year for carpal tunnel which I had no clue I even had. Although it got rid of some of the symptoms I was having I a lot of trouble now grasping small or thin objects. I'm afraid quilting is out for me, right now. I am a hand quilter for sure. I have the nice machine but nothing beats hand quilting. I have tried basting both ways (pins and thread) I like thread the best but it's hard hard on the back and knees if you're on the floor. I even tried the iron basting (not crazy about that). Maybe one day when the kids are gone I'll have room

I tried cross stitch and needle point as those are small but I was making all this stuff and had no place to put it nor anyone to give it to so I stopped. We have local night classes every fall and I'm looking into going to something, anything would be nice. I need to get a hobby I can do or a job. I haven't decided.

[MeliZ]

Esofia, sorry it took me so long to respond. Had a long few days and then this weekend, I had some errands to do and that wiped me out so pretty much rested when I wasn't busy.
I was diagnosed with CFIDS 10 years ago. For the first few years, I was really bad and I missed like, 90 days out of my senior year of high school. However, the longer I've had it the more I've kind of learned to deal with it and push through really bad days and then take it easy the rest of the time to be able to get through it. I do have flare-ups, but I've been blessed with being able to keep a job. I know quite a few people who weren't able too. I contribute a lot of it to the support of my family and now my husband. I usually can get through work, but by the time I get home from work am unable to do anything else for the rest of the day due to the stress from managing my pain at work. Which is where the support comes in, because I was really blessed with amazing people who wanted to help on the bad days. I also take tylenol on a pretty regular basis, though I can do without sometimes. I do have some harder pain medication if absolutely needed but I try my hardest not to be dependent on it and usually stick with Tylenol unless it's a really bad day. I also find that anything other than Tylenol usually affects me weirdly so I try to avoid it when I can.
I didn't qualify for disability due to not being completely unable to work.. So, right now, I have no other choice but to get through work.
I do make sure I have plenty of rest before I drive a long way and am coherent. I go to bed super early and get up in enough time to fully wake up and make sure I can take my time to get to work. I leave myself plenty of time, so I don't have to rush and make a stupid mistake by following too close to a car or something, since my reaction time is definitely slower than a lot of people's.
I do meditate at night, because it helps me relax before bed and helps me be able to actually sleep - since I sometimes have insomnia and then I'm really in trouble. Lack of sleep for even a day can affect me a ton. I also do some stretching to try to keep my muscles loose since they tend to tighten up.
I agree that cardio is really hard. I tend to hurt a TON if I try to do cardio. Lately, because of how much I have to walk at work, I've been getting the whole body pain feeling more than I was. But after I sleep it goes away, so I've been making sure to get enough sleep at night to counter it. I never quite feel like I've rested enough, but I at least usually can manage. I think if I had to do any more than I do, I wouldn't be able too. I'm really hitting my threshold for walking / working. By the time I'm home from work I'm usually hurting too bad to even consider needing to run to a grocery store for a minute or something.
And yes, the touch thing is really strange, lol. The first time I felt it I was only 15, and thought something was SERIOUSLY wrong with me, because someone poked me and I wanted to cry. Now, I know to just tell my husband to make sure not to touch me until I start feeling better. I usually know when it's coming on and can take Tylenol to counter the pain.
One thing that helps is while I do work full-time, other than the walk to and from the office, most of my job entails sitting at a desk. A few months ago I did a temp job at a grocery store, and after 2 days of work I literally could not move for a week. All I could do is lay in bed. And I wanted to cry from the pain that two days caused me. Being on my feet is just, not possible. So I've had to tailor my career to something that I could manage with my CFS. Most of my work is customer service and data entry, and the job I'm working at now is pretty lenient if I need a 5 minute break here and there since they don't really schedule breaks other than lunch, but understand that people need breaks sometimes.
To sum up, I due maintain a full time work schedule. But it's really hard and a lot of days my husband does more than his share of the chores to make it easier on me. While I usually wait until the weekend to do my share of the chores / errands.
Oh, I also get a lot worse if I forget to take my daily vitamin C and other vitamins. I get sick really easy, so usually try to avoid people if I know they are sick, and take extra vitamin C though I take some every single day.
On a losing weight point, I am -2.2 lbs this past week. I have had a few cheat things, but overall I am doing really well with keeping up with my calories and such.
Overall, I am in a pretty happy place right now. I'm managing my pain levels for the most part, am slowly losing weight, and am eating way more healthy.

[Esofia]

Mamakat - carpel tunnel sounds grotty. I have had a few bouts of tendinitis in my shoulders, and I also managed to get RSI in the middle of making a quilt for a competition deadline. Once I had recovered enough from each to sew again, I had to be insanely careful about pacing, and by now I sew with a stopwatch and am still very careful about taking breaks. (I got the quilt finished in time by some miracle, and won the competition, I am pleased to say.) Never mind sewing, it's when I can't hold cutlery that I really hate it. Thankfully that hasn't happened in a while, though even when I can use a needle, I still can't write more than a few words. I do start to go a bit crazy when I can't sew for too long a time. If you ever get back to quilting and can't find someone to baste for you, a friend of mine who also has ME/CFIDS swears by using a basting gun, maybe that would work? There are so many gadgets and techniques around these days! I think I'm the only quilter around who's never used fusible anything.

Meli - You sound like you're doing really well! How much vitamin C are you taking? I need to take the buffered form, and I'm still not sure how well I'm tolerating that, but it's something I'm playing with. I can't tell yet if it's helping.

I'm hoping that weight loss will help the ME/CFIDS. After all, it's commonly thought that the heart is a major part of this illness, and lugging all that extra weight around can't be good for the heart, plus there's the strain on the joints. I've had more energy since I started dieting, but I also broke off a stressful family relationship at the same time so I don't know quite what has caused what. You know what it's like with this illness, there's never just one thing going on at once, it can be so hard to tell if one particular factor is helping or hindering.

The disability benefits thing is crap where I live too.

[MeliZ]

Thanks. I'm trying. I've generally learned what works and doesn't work for me personally. I think losing weight definitely will help, if not just having less to lug around every day.
I usually take 1000 mg a day of Vitamin C. It's funny, I actually for awhile though it was all in my head and I just feel the need to take it to make sure I don't get sick. And then I was super busy for a few days and somehow forgot all about my Vitamin C. I ended up really regretting that when I had a huge flare up and the only thing I realized that I was doing different was not taking it. After a few days being back on it, I regulated out again. But one thing I've learned with CFS, is that every single thing you take affects everyone with CFIDS different then it does another. It's all about how your body reacts to it.
I completely understand the there's never one thing going on at once. Whenever I really get upset, it's usually because there's so much that I just can't handle. I can handle the every day few things that always are there - the general fatigue, achey feeling, etc. But whenever anything gets thrown into the mix that is unexpected, I find myself unable to cope. I try to stay positive, but it definitely gets to me sometimes - which I'm sure you or anyone with this illness can relate too.

[Justwant2Bhealthy]

Had a great day today; ate very well over the last few days. Had that BBQ chicken and salad for dinner; had a tiny bit of rice-veggie mix, but the rest filled me up pretty good. Did the insurance on the house; did an inspection this afternoon, and tomorrow we're signing more documents, then it should be smooth sailing from there. Yippy ... almost there!

Time to go rest up my feet & back & this whole bod; kinda overdid it a bit last week. SIL volunteered to help DH paint next week -- GOD bless her for that. Took some pics today; and the flowers look great. Discovered two patches of Rhubarb today; love that.

Got lots of walking in today (for me, that is) -- have a great week all ... Rosebud