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??
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.
Amelia--mir wird schon beim Lesen deines Posts das Herz flatternd! Wenn dein Aktivitätsniveau deine Erschöpfung verschlimmert, ist das nicht gut. Das bedeutet, dass du über dein Energiebudget hinausgehst, was die Chancen auf eine Erholung verringern kann. Die Idee (laut Dr. Luncinda Bateman, ME/CFS-Spezialistin in den USA) ist zunächst herauszufinden, wie viel du tun kannst, ohne "zusammenzubrechen". Sie rät, einen Fitbit oder ein ähnliches Gerät zu verwenden, um dir Feedback zu deinem Aktivitätsniveau zu geben. Dann sagt sie, dass das Ziel die Vermeidung eines Zusammenbruchs ist, anstatt die Erholung von einem Zusammenbruch, was langfristig schlechte Ergebnisse haben kann. Ich weiß, dass du jetzt das Gefühl hast, dass du keine Wahl hast, was die Arbeit betrifft. Aber wenn du weiterhin erschöpft bist und deine Gesundheit sich verschlechtert, könnte dein Körper die Entscheidung für dich treffen. Das ist mir passiert. Eines Tages ging ich erschöpft zur Arbeit, wurde so krank, dass ich dachte, ich würde sterben, und musste die Arbeit verlassen. Keine Wahl. Das ist 15 Jahre her. Ich finde dein Funktionsniveau sehr ermutigend, aber du musst genug Ruhe bekommen. Allein die Tatsache, dass du so viel tun kannst--mir scheint, dass du zumindest nicht schwer krank bist. Also baue darauf auf, indem du dich schonst und dich nicht überforderst. Ich denke, du kannst auf einem sehr guten Weg sein, wenn du es langsam angehen lässt.
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.
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!
Ja, ich habe nur sehr wenige Menschen gefunden, die Amelia wirklich verstehen, und anfangs hat mich das wirklich gestört, aber jetzt konzentriere ich mich auf mich selbst. Ich fühle mit dir, wirklich. Es ist egal, wenn dein Haushalt zu Bruch geht, sozusagen. Das Wichtigste bist du. Ich habe versucht, viele Dinge zu tun, aber festgestellt, dass die Müdigkeit schlimmer war, begleitet von Schwindel usw. Es ist unglaublich schwer, wenn man allein lebt. Zum Glück lebe ich nicht allein. Mein einziger Rat ist, bitte überfordere dich nicht zu sehr. Ich verstehe, dass du arbeiten musst. 😊
Lauf weg!. MTCFS ist nicht so schlimm wie jemand, der bettlägerig ist, weil ich arbeite! Aber wie Sie sagen, müssen die Rechnungen bezahlt werden, was all meine Energie verbraucht, also geht der Haushalt, das Ausgehen mit meinen Freunden und noch viel mehr flöten. Mir wurde gesagt, dass man einfach niedrigere Standards haben muss, was den Haushalt betrifft, okay, aber wenn das Ausgehen unwahrscheinlich ist, wäre es einfacher, Freunde zu sich einzuladen!. Ich bin wie Sie, ich scheine mich nur im Kreis zu drehen. ABER meine Zeit zu haben, Achtsamkeit und die Anwendung von CBT hilft ein wenig.
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!"
All these nice responses are making me feel warm and fuzzy inside! Yes I find the social life goes down the drain too. But the good faithful friends stick around, which is all I need. And yes - I found CBT helpful, and should use the techniques more.