Feeling Pretty Good (Knock On Wood)

[Anoj]

I know I haven't been here in a little while. I just wanted to pop in and say hi to everyone. I have been feeling pretty darn good the past 1-2 months (a big knock on wood to that!). I attribute this to nothing in particular. I am still on the same medications, still doing the same routine. Haven't really been exercising, tbh. This is why I will never believe that this illness is something we can control. In my experience, it is pretty random.

I started going in to work again. I go in 3 days a week and work from home the other 2 days. It is still a hellhole, but I am employed and have income. It is not the most secure job, either (we are going through an acquisition), but my bosses have pretty much decided to leave me alone. Part of me thinks that this is because they are going to lay me off when this deal goes through, anyway. But now I know I can handle working in an office at least part-time, and I am LOOKING. It's tough out there. I have recently been rejected four times for one reason or another - mostly because I'm overqualified. Great. It's hard to be a gangster when your health is fragile.

I am still on an SSRI for the POTS, and it helps, but I continue to gain weight. On the other hand, I do think the drug helps me deal with the stress I'm under - and believe me, it's a lot.

I don't really see my doc anymore, either. He ordered a sleep study, which I just completed with no abnormal findings to my knowledge, and maybe he'll follow up with me after I get my results. Not really sure. It would be nice to have a "real" doctor who truly has compassion and understands the illness. Although this guy seems to be an expert, he blames deconditioning for everything - I have been in touch with 2-3 patients of his in the area, and he told them all the same thing. They were not happy about it, either.

So, a few of the big improvements for me are being able to go out of town on short trips (which I couldn't do before) and being able to make it through a workday. The funny thing is, I still can't manage to do other things, like walk through the mall. I went to return something the other night and felt very shaky. When I got home and the next day, I had a migraine as payback.

What still irks me is that I know people don't understand - particularly people at work and family members. They all think I look fine when they see me. What they don't understand is that any time I engage in an activity, I need a day of rest. It's all about conserving energy, as you know. I also get guilt trips from certain family members as to why I am not visiting them, or worse, some of them aren't truly aware that I even have a health condition.

I also still can't have caffeine or alcohol. Caffeine makes me "electric dizzy," and alcohol obviously makes me ridiculously tired. I hate having to explain to people over and over, so I just quit. Maybe they are tired of hearing it.

Well, that's about it for the update. In my mind, I'm just thinking and hoping that this crap will just fade, and I'm really really wishing that my recent upswing will continue and that at some point in my life this will just be something horrible I went through. November will make 2 years for me.

Take care, everyone.

[Guest maia]

Glad youre feeling better, and thank you for posting. Its nice to read soemthing which can bring hope.

[brethor9]

Glad to hear you are on an upswing Anoj I can totally sympathize with the frustrations you experience...I have been dealing with this for 5 years and still find myself explaining on a daily basis why I am so sick and cannot just be normal even though I look normal. Now when someone says oh you look good...I just say its the meds I am on not because I am actually better. They should call it the stalking illness....because even on my good days I am always looking over my shoulder (so to speak) waiting for it to creep on me lol....... hang in there and just try to enjoy your remission and don't let the negativity get to you...and remember you have people here who will always understand what you are going through

Bren

[misstraci]

Glad to hear that things are looking up for you! Hopefully this is the end of a terrible two year span. I've also been sick for two years now but unfortunately, I feel like i'm getting worse and not improving; still digging for my answers. Good luck to you and thanks for the positive update!!!

[sue1234]

That's great news! Glad you are feeling better for whatever reason LOL!