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I'm 25, live on my own, 1000 km away from family (not that that matters), renting and earning my own bread. I'm also trying to save up to buy my own place so I can stop renting. So I work at home part time as a medical typist, part time as a beekeeper.
You may say, how could I possibly have CFS if I can manage to work in both physically and mentally taxing jobs, as well as manage housework, cooking, and all the things that come with living on your own. Well the truth is, I don't have a choice. I have to keep paying the bills, have to work as hard as I can, and usually - okay, always - what happens is the housework suffers - I mean really suffers. So much that I have heart failure if someone drops in to visit. Often I run out of decent food but I'm so busy and tired that I can't even make it to the supermarket for days, and the dishes...okay, let's not talk about my dishes.
I have some really good friends, but I feel like no one really understands how tired I get, and how desparately I'm drowning in everything. I feel like I'm stuck between a rock and a hard place; I must to do everything, but I can't. Some days I think I should be in bed, but there's so much to do that it's ridiculous to even contemplate staying in bed. And the fatigue is getting worse - for obvious reasons.
The other frustrating thing is that people totally don't get it...I explain it all to them, and I think they understand, but then they continue expecting too much of me. And I live in a farming environment, and farming people see it as weakness...I think it's just how they're built - they work so hard, and think anyone who can't work hard because they're "tired" is weak.
Does anyone else have a similar situation? Does anyone have advice for this kind of situation??
Well that was a longer rant than I expected...
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I have posted my CFS adventures in the past. I have CFS but it's a mild form. I work as a server and it's hard at times. My condition has improved over the past year (graduating school some say it was the stress of taking 7 years for a 4 year degree) I am in debt -$1000 usd because I don't make enough part time and I pay health insureance of $350~$370 monthly.
I can't get a "real job" with my degree because I can't pass a phsyical test because running really screws me up. I can work out a bit at home but if I get on a treadmil for more than 25 minutes I really get sick, recovery time has cut down from 2-5 hours to just under an hour. I used to get so sick I would have to lay down the rest of the day, now I am back on my feet doing work within an hour.
I notice bending over really makes it worse, picking up sticks in my yard really makes me sick, 30 minutes into yard work I am tried. Yet I can stand and work for 10 hours and be completly fine on most days. I can't explain it but I am starting to figure more problems and their cause.
I notice I am super stiff in the mornings, I feel very sluggish on average 2-4 days a week. If I drink a lot of water I will feel better and by noon I feel good.
Food, I get very hungry during an attack or when I become tried, my stomach really gets empty after a full meal at times, odd but it's all connected somehow.
It sounds tough for you. That's weird what you say about getting an empty stomach after full meals - I get that too! It kind of feels like a rock weighing down my stomach. It can take a day to go away.
Amelia--I get heart palpitations just reading your post! If your level of activity is causing your fatigue to worsen, that is not a good thing. That means you're going outside of your energy envelope, which may lessen chances for recovery. The idea (according to Dr. Luncinda Bateman, ME/CFS specialist in U.S.) is to first get a sense of how much you can do without "crashing." She advises using a Fitbit or similar device to give you feedback on your activity level. Then, she says the goal is prevention of a crash rather than recovery from a crash, which can have long-term bad results. I know you feel you have no choices now regarding work. But if you continue to get fatigued and your health worsens, your body may make the decision for you.This is what happened to me. One day I went to work fatigued, got so ill I thought I was going to die, and had to leave work. No choice. That was 15 years ago. I think your level of function is very encouraging, but you do need to get enough rest. Just the fact that you can do so much--it seems to me that you at least are not severely ill. So build on that by pacing and not pushing. I think you can be on a very good path if you take it easy.
Thanks for your response Jackie. You're right - I hear everything you're saying. The way I'm going is road to destruction. It's just that I really want to earn more to buy my own property, because I've been renting since I was 18 in horrible cheap rentals with horrible neighbours and I'm really fed up with it. I guess I feel that if I don't keep going, I'll end up in cheap rentals for many years to come...which is totally not happening! Nobody else is going to help me to move forward, so I have to do it myself.
It sounds like I'm running around really busy all day every day, and I feel like I am, but in actual fact a large part of it is time when I'm stalling because I'm too tired, but I'm not relaxing because I'm stressing about how much there is to do. So out of all the stressing I'm actually achieving less than average.
Also my typing work can be bad in that I never get away from it because I work from home - so I can't come home at 5 pm and forget work. I've tried setting myself hours before, but it simply doesn't work. I can't even manage to get weekends off, because the doctors send in a lot of their work Friday, and if I don't do it on the weekend I definitely won't cope the next week. In other ways working from home is good because if I have a really bad fatigue day I can ease up a bit - which probably means more work later - aagh.
Perhaps I need to have a closer look at my activites and find some things that I can kick off the to-do list...and make myself say no to people...aah it's good to get all this off my chest...thanks for listening!
I hope you're better than fifteen years ago!
Yes I've found very few people actually understand Amelia and at first it really bothered me but now to be honest I concentrate on me I feel for you I really do it dosent matter if your housework goes to pot so to speak the main thing is you . Your the most important factor in all this I tried to do a lot of things but found fatigue was worse coupled by dizziness etc it's incredibly hard when you live alone. Fortunately I don't. My only advice is please don't push yourself too much I understand you have to work though. 😘
Thanks for your response :-) I will try not to push myself; in fact, I'm thinking I'm going to try pushing myself to not push, if that makes sense??? Push myself to say no to people, etc. It's hard sometimes to decline - easier to say "yes, yes, I'll do it!"
It is hard at first I understand that but sometimes you have to put yourself first Amelia you take care 😘
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