This thing called PNH!

No matter how much I talk with people about what it’s like living with PNH I honestly don’t feel like people get it. I don’t blame them but it is so frustrating to feel doubt that people think the biggest symptom is simply “an excuse to be lazy. When I was first diagnosed and the symptoms started really getting bad I used to laugh them off and tell people, “the bottom line is that I’m basically just a lazy person and this gives me the excuse I need to not help with chores etc.”. Man do I wish I could take back that charade. I’m not denying that I have a tendency to lean towards lazy at times but there is nothing fake about how I feel because of PNH. I’m pretty much tired all the time with minimal energy. And even when I do try to help out more it usually just ends up in me taking a nap and being so short of breath that I literally have to lean on something until I feel recovered enough just to walk back to the trailer.

Today has been a perfect example and it’s barely 10:00 am. I woke up in the middle of the night thinking that I needed to get up and do some cleaning, mostly dusting everything from top to bottom because there is a tendency to get cobwebs if I don’t keep up and I certainly haven’t. So about 9:30 I got the duster out and decided to turn on The Trump Tapes, and get busy. The good news is that it’s a small area and I should be able to do a better job of keeping up with it, the bad news…..after about twenty minutes I was literally exhausted which is why I’m sitting here working on this blog instead of doing more work right now..Twenty minutes and I’m too tired to do more than just sit here and write for a while. 

I listened to someone on the PNH instagram site this morning talking about going from “Overwhelmed to Empowered”. Not to sound disrespectful but man talk is cheap. Everything she said was true and could be helpful if we had any control over when and how our symptoms are going to appear. Not just when and where but for how long and how many? Short of breath, tired or exhausted, weak, lethargic, GI issues, general overall and often overwhelming fatigue while doing nothing, dizziness, light headed, those are just some of the physical symptoms and they don’t include the psychological or emotional symptoms. So while it’s nice to have a “plan” to overcome being overwhelmed there better be alternative plans and all too often those plans simply mean do nothing unless you feel good enough to sit and watch TV instead of napping. 

None of this is complaining I’m just trying to put into word s what it’s like to live with this nasty disease.

I’m Blessed that despite the fact that there is no cure there is at least a treatment that I can receive every six weeks that lets me function a lot better than I did before I was diagnosed and starting getting treatments at a cost of almost $200,000 every six weeks. That’s another area where I am Blessed and I know it, the fact that the VA covers my treatments along with my other health care.

Enough whining. I just took Charlie out to pee and after walking probably less than 100 yards I came back in short of breath. 

Despite everything I’m still trying to get out and do “races” when I can. It works best for me when a race is later in the morning because I can get up and see how I feel as races time gets closer. This one last weekend was funny in a sense because I thought it was at noon on Saturday and by 9:00 I decided that there was no way I could even attempt to walk 5K so I decided to not do it and got on line to see what else was coming up As it turned out the race was Sunday at noon not Saturday so Sunday I did it all over again. Got up and waited to see how I felt before deciding. I decided I felt would drive to the race and decide whether to sign up or not. Just being around the atmosphere with other people made me decide to give it a try. Even though I was in oxygen debt less than 50 yards into the race I still finished it. I was 2:06 slower than last year but I was still glad I did it. I did get 2nd in my age group. It was my 348th race since turning 60 and my 97th since turning 70 so I’m coming up on some benchmark numbers. After 350 and 100 I don’t know what kind of goals I will set if any but I do know that I want to reach those two numbers even though they will only really have meaning for me.

What’s next? I’ve got treatment next week so I’ll try to see how I feel after that as far as making any tentative travel or “race” plans. In the meantime I’ll just continue to be grateful for what I do have and try to stay positive. Having goals helps with that.