margiebee Posted April 21, 2013 Report Share Posted April 21, 2013 I have always had trouble juggling too many things at once. I don't often feel super fatigued, but I feel like I subconsciously know when I'm reaching my limit and only try to do a couple things in a day. But I go to school full time, as well as working a job in retail around 20 hours per week. I have gotten quite a bit of criticism from people around me about not being able to "just suck it up" and "work hard like a normal person". I feel like this is a pretty common frustration among people with illnesses like POTS, but its just so hard for me. I would like to do more things, I do not like feeling like I haven't accomplished anything and this gives me anxiety. I try to be social but after I get home from work and school I just can't find the energy to hang out with friends. This gets even worse when they think I'm just making it up and don't want to hang out with them.I am sure this is a common thing, and I was just wondering if anyone had any advice on how to cope with situations like this. Or if any of you have found anything to boost your energy without making your symptoms worse? Caffeine, even in tiny tiny doses is a no-go for me. Quote Link to comment Share on other sites More sharing options...
dpeeps Posted April 21, 2013 Report Share Posted April 21, 2013 I used to over-commit to everything and was burned out all the time. Since POTs, if I have plans in the evening on a Saturday night, I can do something in the morning, but I plan a long afternoon nap in the middle of the day. I literally plan my day around that nap. No nap, no evening out. I don't care if people don't understand!! I am responsible for myself and I know how to take care of myself. IF there is any sort of silver lining, POTs has taught me how to slow down and listen to my body. Quote Link to comment Share on other sites More sharing options...
margiebee Posted April 21, 2013 Author Report Share Posted April 21, 2013 I also have always had a ton of trouble napping, like I just can't fall asleep in the middle of the day. I do have a little trouble sleeping at night but nothing severe, but naps are borderline impossible no matter how tired I am Some days I wish I could just have a cup of coffee haha Quote Link to comment Share on other sites More sharing options...
Tobiano Posted April 21, 2013 Report Share Posted April 21, 2013 I can so relate! I too have trouble juggling and tend to over commit. I really don’t have any magic answers. Slowly, I am learning to say no more. I also try to take rest breaks with my feet up throughout the day. I make sure to stay and home on either Saturday or Sunday, with no commitments, so that I can be rested for work. Reading this also helped me put things in perspective http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ Quote Link to comment Share on other sites More sharing options...
bebe127 Posted April 21, 2013 Report Share Posted April 21, 2013 Margiebee,Chin up girl, I know it can be hard. I say congrats on you for going to school full time and working as well, that in and of itself is encouraging I remember my college days (way, way back LOL!) when I went to school full time plus student teaching, worked two part time jobs, and was married... wasn't sick at the time and it just about wore me out!! I know it's hard, but try to look at and concentrate on all that you do accomplish. I'm with dpeeps, I don't much care what others think either. You know you and as you go along your journey with this dreaded illness, you will begin to know your limits. Stick to them!!! I also agree with Tobiano, you have to keep track of your spoons at all times. If there is something you really want to do, you might have to relinquish some other things in order to have the energy. The Spoon Theory really does put things into perspective.Hope things get better for you soon!! Try to stay positive (easier said than done, I know).Be well,Bebe Quote Link to comment Share on other sites More sharing options...
outofadream Posted April 21, 2013 Report Share Posted April 21, 2013 Like others have said, I’m totally impressed by you keeping up with so much already…I came down with POTS in college too, and honestly, I’m not sure I would have been able to do half that much!I’m so sorry you’re getting people saying or implying hurtful things like that…I know that can be so hard I’m not absolutely sure where I read this, but I seem to remember reading once that it required 4x more energy for someone with POTS to stand up as someone without POTS. The article said it was basically like people with POTS are running a marathon all the time…so no matter what ANYONE says, it seems to me that this means you're actually working harder and “sucking up” way more than many people have to.I don’t know if this is helpful at all, but when I was diagnosed with POTS (soon after graduating college), I was really, really worried that my friends would think I wasn’t hanging out with them as much because I was avoiding them or making excuses or something. I was so worried I actually sent my closest friends an email telling them what I had, explaining the basics of what the POTS made it hard for me to do, and telling them that I really did want to spend time with them all, and that if I wasn’t doing that so much, it had to do with the POTS and not them. I don’t know for sure how much that helped (and obviously, I don’t know what your friends are like or what you may have already told them), but I think that did help mine understand some. My experience has also been that just plain time has seemed to help…sometimes people who didn’t seem to understand soon after I was diagnosed (and again, I don’t know how long ago you were diagnosed, so don’t know if this applies), have understood more as time passes. I think it has just taken them some time to wrap their heads around what POTS is all about and figure out that the times I’m not able to be as social has to do with the POTS, not them.No matter what, I hope that things do get less frustrating and easier for you soon! Quote Link to comment Share on other sites More sharing options...
margiebee Posted April 21, 2013 Author Report Share Posted April 21, 2013 I do have one friend who is very understanding about most things, so she has been understanding about this as well. I have lost some other friends because they think I am avoiding them or they think I am faking my illness.I actually use the "marathon" example most frequently, I try to expain that me standing has the same effect on my heart rate as someone running a marathon. This sometimes gets the point across, if people actually believe it. It just is seeming impossible right now to get everyone on the same page, including my workplace, family, friends, professors, etc. Quote Link to comment Share on other sites More sharing options...
s-pot Posted April 21, 2013 Report Share Posted April 21, 2013 I also developed POT's in my last couple of years in college and to put it mildly the juggling was very stressful.! I had the issues wit friends not understanding and the frequent attempts at explaining my way out of nights out when alcholol would set my back for weeks and when I knew my resources were soo limited. However I also know that during this early time of my diagnosis...I put MYSELF under alot of pressure to perform like I wasnt dealing with a chronic debilitating illness every day. I expected the same out of myself as I would have years previously and made no allowances for what I was going through or as *outofadream stated,...the marathon my body was running everyday before i attempted study/work etc. However I Sometimes wonder if I relieved the psychological pressure off of myself and made some allowances I probably would have gotten the same result but without the constant feeling like I was battling my way through and only just surviving. i.e give oneself the permission not to have to *do* any of it...and then see how much of it gets done.I got the highest degree in my class...but was half dead by finishing time. I look back and see I worked hard and battled my illness every single day of the last two years. It was all consuming...but didnt prioritise any fun.I have since learned that the way of life is often to prioritise the things we see as 'important' things in life....school/work etc and see what one has left over for the rest. However it is these things that are energy consumers/stress drivers and it really is as important to strike a balance.....allocate some time and energy to the fun stuff/time with friends etc. I have learned that allocating time/energy with friends/doing stuff I enjoy is just as important as all the rest. Laughter and fun is energising too. When I lose the balance the stress of lots of work and no play is what makes me unwell.Suppose what im saying is that when I started to make allowances for the illness and let myself off the hook a bit, gave myself the permission not to keep forcing and pushing myself through it all, things got done anyway and I had resources for the fun stuff too. I dont know if this resonates or not but it was my experience of those college times and the fight between trying to keep things 'normal' and accepting the illness!Best of Luck! S Quote Link to comment Share on other sites More sharing options...
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