Feeling Down

[delphicdragon]

Hey Everyone-

I need some advice and a little pick me up. I've attempted to go back to work and find myself more exhausted than ever before. I'm pissed at my body, pissed at life, and feel like my dreams are just floating away. Had a two hour meeting yesterday and wound up SO tachycardic and shaky that I was completely non-functional for the rest of the afternoon. I want to go back to work. I want to be around people and not have to depend on anyone for my needs. I want to be "normal". I can feel myself crashing again, and I don't know what to do.

I think I'm going to try to talk to disability services again and see what can be done. Can't take the time off because I have bills to pay. I thought since the last flare this would have gotten better (and I was feeling better at home doing nothing) but now it seems like I've made no progress and I just don't have the energy to go through the rounds of doctors again.Thanks for listening.

Sara

[helen.t]

Hi Just want to say that I know how you feel but don't know if I can offer much advice. I can't work anymore because of my health probs and it gets me really frustrated, but sometimes there is a peace in acceptance that your body just isn't able to do the 'normal' things anymore. Maybe pursuing the disability road is the way to go. It was for me, and although I still don't like it very much but I know I have no choice. It is good if you get an understanding doctor on your side for that. Anyway, good luck and hope you get some help for you situation!! hugs, helen

[morgan617]

I'm sorry Sara. I have been there so many times. Every thing starts to feel like a blow to the gut doesn't it? Giving up work and most especially my nursing license, was about the hardest thing I had to do. It's very hard to get past the idea that you have failed somehow, as opposed to your body being the problems. Especially when support systems are bad too. I don't know what kind of support you have, but right now it can be essential.

Unless people have to give up things, they can never really understand what it's like, and how devastated you really are. If you can't work, you can't work. Is there any way to cut back your hours? Or a job share or something that will make it easier right now?

All I can really say is, Many many of us know what you are going through, have all felt the same way you are, and get just as frustrated and discouraged. Somehow, after time, we seem to adjust to one more limitation and keep going, but the initial stuff is very hard to deal with.

I'm not going to say, hang in there, or buck up, or it will get better, or any of those things. I will say, we all know what you are feeling, have all been there, and we all go on. Get past the new insult and so look forward to the next surprise hit we get..

I guess this probably hasn't made you feel any better, but maybe just knowing a lot of people know how how you feel will help a bit.....sorry you are so down sweetie...morgan

[hollie]

I'm right there with you! I have my own business and am having a hard time accepting that I need to slow down. I feel like the business I've worked eight years to build is going to go up in smoke because I can't do it any more. Everyone around me just expects me to just pop a pill and I'll feel better! What a joke that is! I think people need to live one day in our shoes to know what it's really like.

I'm just trying to know my limits - and not exceed them! It's hard, but I know if I over do it, I'll be shot for the rest of the week! Of course, I have my times when I still do. Like you said - you have bills to pay.

I like how it's explained at www.butyoudontlooksick.com - the spoon theory. I like the analogy. If you haven't read that, take a look. Maybe even print it off for your boss so he/she knows exactly what you're going through. Maybe they can help you cut hours or something.

Sorry I'm not much help either, but I do want you to know that you're not alone!

Hollie

[medicalenigma]

I also can understand what you're going through. In this world, we are taught to define ourselves by the work we do and are made to feel useless and non productive when out of work... i too have not come to terms with being out of work and somewhere in my fantasies, dream of going back though i know my body can't take it. Only thing I can think of is, if you go the disability route, don't give up on other stuff... find as many hobbies as you can to occupy your time and find what makes you happy outside of a career.... i know it's hard but possible.

Also, know that there are others out there that really do feel for your situation and can totally relate to what you're going through.

-Nancy

[pat57]

Do you wear graduated compression stockings? Without them I could not work.

Certainly wishing you improvement somehow......

[HoudiniCat]

Sara, is there any way you can go back part-time and work your way up to a full day? When I first went back, I too was overwhelmed with fatigue and numerous symptoms and questioned how I would get thru the day let alone a whole week of work plus commute. I used my vacation and sick days and worked part time for a few weeks till my body slowly got used to it and then I started working full-time. Again, several weeks/months for my body to get used to a full-day schedule.

It?s really hard to come to terms with the fact that this is my new ?normal? ? having a life very different from the one I had pre-POTS. Some days are better than others. I hope that things work out for you ? no matter what decision you make.

[delphicdragon]

Thanks to everyone who sent the warm wishes. It really helped.

I went to see disability services at school today and was told that as long as it is okay with my PI (principle investigator - ie boss) I can work a different set of hours than everyone else. I was also told that if he has a problem with these reduced hours, he is to talk to disability services and they will set him straight. As it stands I will work 4 hours total, but in two hour blocks, one from 10 to 12 and another from 2-4, each day. The people in disability services were SO helpful. I guess my GPA being over 4.0 might have swayed their opinion as to why I should stay on .

I also talked to my doctor (aka stopped into her office unannounced - the benefits of working at the hospital) and she took one look at me and ordered IV therapy to try to get my BP back up as well as a blood panel. (She also told her nurse that if I ever call or come in asking for bloodwork, I needed it 2 weeks ago , and I shouldn't be questioned as to why I needed it. Felt really good to have someone in my corner.)

That, and I have a (TMI warning) yeast infection. Yippee, just what I needed, but the disability services meeting and meeting with my Doc, kinda countered that "pleasant" news.

Thanks again to everyone.

Sara

[pat57]

(She also told her nurse that if I ever call or come in asking for bloodwork, I needed it 2 weeks ago

Love that.

Looks like support all around.

[runningshoe]

I HEAR you! Just wanted to say that I understand what you are feeling. I never had to think twice about how much I stuffed in to a day. Now I have to think about everything and set limits all the time. I am thinking of you!

[Megan]

I'm glad things seem to be working out for you!

Meg

[ajw4790]

Hi,

I hope that everything you discussed works out well! That is useful that you work in the hospital and the dr. will actually see you without an appmt. Sounds like a good dr!

Good luck!!!