Guest brianala Posted February 28, 2009 Report Share Posted February 28, 2009 How do you do it? I mean, how do you manage, day to day?I get by because up until recently I never knew there was something officially wrong with me. I mean, I knew there was something wrong but I nobody ever believed me so I have always just kept pushing. I work full time, and I put myself to school full time while I was working. Looking back, I don't know how I ever had the energy to do it.Now that I have some official diagnoses though, I'm afraid I'll let myself give in to the excuse. I'm afraid things will get worse. I'm afraid it will get harder. I'm afraid I'll feel like giving up.I'm out sick from work for the second time in two weeks because of a cold/allergies. My stupid body isn't cooperating and I'm afraid it's going to sabotage my job. I've gotten in trouble at jobs before because of problems with sleeping, or doctor's appointments, or migraines. Thing is, I have an incredible work ethic but my stupid body just gets in the way. So how do you do it? How many of you work on a regular basis? How many of you can't work? Is it likely to get worse, or do I need to just keep pushing? I'm just so tired of always being sick in some way, both literally and figuratively. Quote Link to comment Share on other sites More sharing options...
Pokey Posted February 28, 2009 Report Share Posted February 28, 2009 How do you do it? I mean, how do you manage, day to day?I get by because up until recently I never knew there was something officially wrong with me. I mean, I knew there was something wrong but I nobody ever believed me so I have always just kept pushing. I work full time, and I put myself to school full time while I was working. Looking back, I don't know how I ever had the energy to do it.Now that I have some official diagnoses though, I'm afraid I'll let myself give in to the excuse. I'm afraid things will get worse. I'm afraid it will get harder. I'm afraid I'll feel like giving up.I'm out sick from work for the second time in two weeks because of a cold/allergies. My stupid body isn't cooperating and I'm afraid it's going to sabotage my job. I've gotten in trouble at jobs before because of problems with sleeping, or doctor's appointments, or migraines. Thing is, I have an incredible work ethic but my stupid body just gets in the way. So how do you do it? How many of you work on a regular basis? How many of you can't work? Is it likely to get worse, or do I need to just keep pushing? I'm just so tired of always being sick in some way, both literally and figuratively.Brianala, sorry to hear about the challenges you are facing. I can certainly relate, and struggle with the same issues you speak to.One thought that comes to mind is you may wish to consider contacting the appropriate HR rep of your employer, and look into taking a medical leave and disability coverage. You may also want to contact the appropriate State agency regarding state disability insurance, as well as federal SSDI. It sounds like you are tenacious, and that you may view this as "giving in," but you may be thankful for teeing things up before, god forbid, the time comes where your health is such that you cannot work. If you lose your job before raising these issues in a very prominent manner, you may encounter a lot more difficulty in continuing to receive some portion of your salary.Hang in there, and I hope things improve for you. Quote Link to comment Share on other sites More sharing options...
carinara Posted February 28, 2009 Report Share Posted February 28, 2009 Hi Brianala,i just want to let you know, that i can totaly relate. I experienced the same sort of things before i got diagnosed. I was so sick for more then 10 years, pushing myself all the time. During that time I went through a dramatic divorce, had to hold down my job to earn some money for me and my 2 year old daughter. It was so hard and i was sick every day. Sometimes i couldnt stand up at all. I tried, pushed and went over my limits almost every day. Doctors kept telling me that they cant find anything wrong with me and that i should just try harder, and i tried and tried up to an extend where i had devastating episodes all the time. When i got my diagnosis in 2007 it totally changed my life. I am so relieved that its not just in my head. I still work and iam still a single mum, but most of the pressure is gone now. I know so much more about my health situation now, that is a big plus and means that i now have the tools to manage my daily life much better. Now i feel that all the pushing i have done in the past helped me to get to know the reactons of my body better. That means that now, i dont put as much pressure on me as i used to do before my diagnosis (because i know about POTS now). on the other hand i also know from my experience that i can push (if necessary) and it wont kill me. I look after myself and try to work with my limitations and its much easier for me since i got my diagnosis. I didnt get lazier since then, i just use my energy differently now to get through the day.Iam lucky because i am a secretary and can sit all the time. I also need to lay down for a while after i come home + take breaks and take things slow but I found a routine that works for me, (hope it stays like that).I wish you all the best, take care, carinara Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 1, 2009 Report Share Posted March 1, 2009 How do you do it? I mean, how do you manage, day to day?I get by because up until recently I never knew there was something officially wrong with me. I mean, I knew there was something wrong but I nobody ever believed me so I have always just kept pushing. I work full time, and I put myself to school full time while I was working. Looking back, I don't know how I ever had the energy to do it.Now that I have some official diagnoses though, I'm afraid I'll let myself give in to the excuse. I'm afraid things will get worse. I'm afraid it will get harder. I'm afraid I'll feel like giving up.I'm out sick from work for the second time in two weeks because of a cold/allergies. My stupid body isn't cooperating and I'm afraid it's going to sabotage my job. I've gotten in trouble at jobs before because of problems with sleeping, or doctor's appointments, or migraines. Thing is, I have an incredible work ethic but my stupid body just gets in the way. So how do you do it? How many of you work on a regular basis? How many of you can't work? Is it likely to get worse, or do I need to just keep pushing? I'm just so tired of always being sick in some way, both literally and figuratively.How do you do it? You just do, the best you can, every day. Like every other person on the planet, none of us are guaranteed tomorrow. Take it in smaller steps, savor the good moments, endure the bad. Knowing and having an "official" dx has given you a reason, not an excuse. Allow yourself to feel awful when you do, but don't wallow in it. With dysautonomia, we have to become masters of moderation: never too much of anything, happy, excited, food, exercise, etc. I have always been self employed, so I have been able to set my own hours. Fall of 2007-Spring 2008 I lost almost 9 months of work because of a tremor that my doctor told me was "in my head." I have since been able to make up that lost time, but not the lost income. The better able you become to deal with what your ANS is doing, the better you'll cope. As all the doctors who actually know what they are talking about have told me: this WILL wax and wane. Sometimes, perhaps for long times, you will feel almost normal and then you will not. The best option is to do what helps, rest, fluid, salt, moderate/mild exercise...Just don't obsess or worry, that is a pointless waste of precious energy!I'm tired too, that is part of "all this" for all of us.Be weak when you have to be, and don't feel guilty for it, strength will come with knowing your limitations. Quote Link to comment Share on other sites More sharing options...
carinara Posted March 1, 2009 Report Share Posted March 1, 2009 Great answer firewatcher, i will print this one out for me:-)(since english is not my original language, i sometimes have a little difficulties putting the right words down to express what i really want to say) Thanks carinara Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted March 1, 2009 Report Share Posted March 1, 2009 Give yourself some time to come to terms with the diagnosis, particularly if you are in circumstances which means this is likely to be around long term. It is, basically, grieving and on top of feeling ill, may mean you cannot cope with so much right now and need to take time off whilst you are fighting infections which ordinarily you would have taken in your stride. Don't feel guilty about it. This will pass and you will be able to go back to the old days when you just pushed yourself to do more. Of course, there may be times when you think, perhaps I need to adjust my lifestyle and do less so I can feel better. That is a long term dilemma which I think we all face if we are well enough to have the choice. But one thing at a time; give yourself time to mentally adjust and then the rest will just follow. I can't predict how long this process might take for you. I needed a good few months to get back to myself and still have the occasional lapse when everything gets too much. But by and large I am back to my old self, have the same motivations in life, kept the same job and hobbies though probably downsized them by 20 - 30% to improve my health. Regarding work stresses, perhaps you can look at this another way. If you are not well enough to be very productive, you may as well take the time off to recoup. If you need time off for appointments, this is an investment in your future health. Is your boss concerned about the amount of time you have taken off ill? My guess from your post is that the answer is no and you aren't used to having to take time off. I've been there, got myself in a state and then discovered that I was taking less time off on average than everyone else and my line manager wasn't the least bit concerned. I tend to keep my life quite full of commitments, both from a paid and charitable work perspective. In some ways I know it is detrimental to my health because I don't leave enough time and energy to look after myself as well as I could. But, on the other hand, I'm not sure that if I had more spare time and energy that I would use it very wisely. I need the formal deadlines to keep pushing myself; I suppose it's just down to personality.Best wishes. Quote Link to comment Share on other sites More sharing options...
momofsara Posted March 1, 2009 Report Share Posted March 1, 2009 As ususal, very well said firewatcher.. you always have the best way of expressing yourself..... Great advice........Susan Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 1, 2009 Report Share Posted March 1, 2009 Hi,For 30 years doctors were telling me it was all in my head so I kept pushing. I remember going to work downtown and having to actually lie down on the sidewalk every 5 minutes to avoid fainting. I had to take the metro (subway) and I had to get out at every stop to lie down on the bench and wait for the next train. Then when I go to work I had to lie down under my desk for 15 minutes. Now that I have my diagnosis I don't push mysself like that anymore. I stop when I feel presyncopal and lie down on the couch.I have to take sitting showers, but I can only take one a week. The other days I sponge wash.My husband helps me with preparing meals and with the grocery. I can't do the housecleaning. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 1, 2009 Report Share Posted March 1, 2009 You just do your best for as long as you can. It's all you can ask of yourself. I pushed myself forever because of the "crazy" diagnoses I had. Now I wonder if I would have been better off in the long run, if I had trusted myself and my gut instead of the people around me. I haven't worked since 2003. I will never work again, as I am failing fairly rapidly at this point (I do have other health problems besides POTS) I do it day to day, sometimes minute to minute, it's the most I can ask of myself and I no longer allow myself to feel badly about something I can't control. Some days will be better than others, but bad days happen to healthy people and we are not healthy.Being too ill to work is not an excuse, it is a fact, and you have to get over that hump in order to come to terms with how to "do it." Good luck sweetie, morgan Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted March 2, 2009 Report Share Posted March 2, 2009 Thank you all for your responses, and please keep them coming. This has been a bit of a turning point in my life, and I'm just trying to take it all in as I see all of these little pieces of my health puzzle from my life finally fall into place. All these things that seemed disparate and random are clicking, and this big picture is finally taking hold. It's relieving but also scary. I guess I need to get used to allowing myself to take it easy if and when I need to, and learning how to treat my symptoms as part of something larger, instead of just shrugging them off as annoyances. Again, thank you all for your thoughts. I can't begin to tell you all how much I appreciate your wisdom and guidance through all of this! Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 2, 2009 Report Share Posted March 2, 2009 compression stockings work wonders for me. Quote Link to comment Share on other sites More sharing options...
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