Today I almost quit.

I got up, took my meds, and felt so awful by the time I rolled into work an hour later that I debated just turning around and going home. I felt way too guilty to do that (because I was already there), so I decided to stick it out.

Halfway through my shift, I started to have a full-out POTS attack. Dizzy, nauseous, sweating, shaking, aches, arrhythmia, head pounding, short of breath, heart pounding, etc... I almost started bawling right in the middle of the store.

I took my break, tried to relax and put my feet up; and forced myself to finish the day. It's the worst I've felt since I started work.

I'm home now, and I took a shower- so I'm taking the rest of the day to rest up for tomorrow; when I work again.

If I didn't need the money so badly, I would have quit today. It was that bad. I was worried I would need an ambulance.

Pushing too hard.

Last night, my work called to see if I could work again this morning. I (foolishly) said yes. I knew I was feeling awful from my 8-hour week, so adding four more hours would be rough.

Halfway through work this morning, I started to feel sick and my arrhythmia was starting up and getting progressively worse as the day went on. Yes, it was only a four hour shift, but you couldn't convince my body that four hours is "no big deal".

I could feel the blood draining out of my face, my arms were tingling and my hands kept going numb. I broke out into a sweat and my head started getting fuzzy, while my body felt 'light headed'. (It started to tingle all over like it had fallen asleep.)

I had to send out birthday presents for my dad in the mail, and hit the bank (hurray, I got paid! My first paycheck.) so I ran those two errands, then I went home, took a shower and crashed.

My boss today asked if I could work again tomorrow, I'm glad I said that I couldn't. I feel like hell.

Follow up

Yesterday, I had a follow up with my POTS specialist. She was very impressed with the fact that I now have a job; though she kept telling me that the type of job I have isn't exactly the best fit for someone with POTS because I'm on my feet for hours at a time. While I know that, I don't think she exactly understood that it was literally my only option, and I needed the money because POTS has brought me to my last $5. (She's a very nice person, but she's foreign and there's a definite language barrier between us, so I don't think when I tried to explain all of that to her that she really understood just what I was saying. She just kept saying to get a different type of job...if I could do that I wouldn't be working where I am!)

She's going to give me a little more freedom with my medications this time. I was taking midodrine 5mg three times daily, and now she's giving me some leeway to take an extra half or full tablet when I feel I need it. During the last few months of trying the midodrine, it has helped, but I can feel it wearing off. I'll do well for two hours or so and then I feel myself wearing down. So now, when that happens, I can try taking half of a tablet . Another example: If I'm working and I need the extra help, I can take two tablets beforehand. I'm still on a really low dose and I can be taking up to eight full tablets a day. (I wouldn't do that lol but it's good to know that I have some leeway with it.)

While I was there, I also asked if she could recommend a counselor who specializes in chronic illness. It killed me to do it, but the emotional side of dealing with this is overwhelming; especially because no one in my life understands what it's really like. It's hard to hear from schools, teachers, potential employers that you're 'damaged goods'. (Yes, someone actually told me that no one wants to buy a broken item.) Some of my family is trying to work with it, but some refuse to believe it's as bad as it is. They tell me to just get over it and deal with it. Anytime I meet someone and they ask "what do you do" and "are you in school?"...they give me a look of disappointment and distaste because I'm not in school, and I'm not working full time because I'm ill. They see that as 'an excuse'. (Yes, I've been told that too.) It's hard to deal with when I'm already thinking all of those things about myself...it's even harder to hear it from other people; strangers, friends, family and boyfriend's family.

Anyways, she did give me someone's number, and maybe if I can work enough to afford it I'll give it a try.

Beyond that, she's recommending finding another type of job where it's a desk job or something like that. We're going to see how this medication change helps- hopefully it will. She's also wanting me to start exercising- which I've started to do but I should try to do more.

My boyfriend was a bit unhappy with me because he thinks I never tell her how bad it really still is; but that's hard for me. I went through 3 years of doctors blowing me off and telling me to stop complaining; so it's hard to believe I can trust this person and tell her everything that's wrong. I'll do better next time.

Overall, I think it was a pretty positive appointment. Hey, at least she's impressed with me right?

I have a job!

Last weekend, I was hired at a local business.
(I say that, but really they're a national business with a local branch)

Anyways, I started work right away this week. I worked two four-hour shifts. So far, I like it.
My POTS, however, doesn't seem to like it. I have a really hard time getting moving in the morning despite the motivation to do so. I did some research and it seems like this is normal for a POTS patient.

I've been wearing my compression stockings to my shifts and they seem to do an okay job at helping me. I know they're helping somewhat because I do a lot of crouching/standing stocking shelves and I don't get as dizzy or disoriented as I used to but when I'm working the customer service end of things, I have a really hard time still with the pooling of blood in my feet. Yesterday, just standing there, I could feel all of the blood draining down into my legs.

The toughest parts are still the insomnia and the nausea. I eat and I get nauseous; I don't eat and I still get nauseous. When I put the compression stockings on, I'm nauseous and when I take them off...you guessed it! Nauseous.

Last night, and today, I'm achy, shaky and exhausted. My brain's very foggy too and my vision's wonky. I'm going to see the POTS specialist this week, so I'll be telling her all of this and seeing what she has to say.

***

It's hard. Much harder than I thought it would be- and it's only eight hours a week. I can't imagine doing any more just yet and that upsets me. I'm in my mid-twenties and I have no savings anymore thanks to POTS, and I'm completely worn out just working eight hours. There was a lot more that I wanted to do, and have done, in my life than this. Right now, I'm hoping that I can at least make enough money to pay my bills and pay for my meds every month...which looks like it's going to be tight. I guess we'll see. For now, I'm just grateful that someone is willing to take me on, POTS and all.

Update

The interview turned out to be more-or-less a waste. The job was very labor intensive and when I told them about POTS, the interviewer expressed a lot of doubts over my ability to handle it. (I have quite a few doubts about it too.) They said they'll let me know in a couple of weeks, but I have a feeling it wasn't a good fit for me or for the company.

The only upsetting part for me, was hearing the doubts from the employer because of POTS. While I appreciate that they're (partially) thinking about my health and safety, it still was awful to hear it.