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Back when I was healthy, the only reason an illness would keep from doing what I wanted/needed to do was if it was something like the stomach flu where I was stuck by a toilet, a high fever massive amounts of caffeine couldn’t keep me awake through, or having something contagious and not being allowed to be around others… even then, I did things that needed done. I just did them in seclusion. To me, a cold wasn’t a reason for my day to be any different outside of the addition of some medicine and an extra hot shower to open up my sinuses. I would spend a day or two throwing up with stomach flu, working on homework between trips to the bathroom, and the next day I’d be back at life, full force. I knew people needed to rest to heal, but to me that didn’t mean there needed to be a complete lack of productivity. Colds go away whether I rest or not, so I chose not.
I continued this trend when I first got this chronic illness 5.5 years ago. I fought through, did what I wanted, nothing was going to keep me down. Throughout most of those years, I had an exercise regimen and healthful diet I stuck to even though I never got any better. I was a teaching assistant, unpaid internship holder, volunteer, part-time worker, and full-time student. No obligation got less than 100% of my energy and I didn’t take sick days lightly. I had dreams to achieve and people to help. My doctors would tell me I needed to rest, I needed to drop one obligation. Maybe they were right. However, when I finally dropped my paid work, I didn’t get any better. I just got worse a little more slowly. I still maintain they just needed to figure out what was actually wrong. No amount of rest was making me any better and I doubted that was about to magically change. If rest wasn’t making me better, why rest? Fulfilling my obligations at least gave me something to show for my time. I didn’t care if I felt cruddy while fulfilling those obligations, I cared about getting closer to where I wanted to be. Plus, the doctors said nothing was wrong with me, so why would I let “nothing” mess with my life? Over the last couple of years, there were times I didn’t even know I had strep throat because my throat always hurt anyway. I’d be more tired than usual, my lymph nodes would be more swollen, or it’d go to my kidneys and I’d know something was up…Since my job required supporting and interacting with many people, the doctor would have me stay home until the antibiotics had taken effect. I was always back at work as soon as my 24 hours was up. When I got it during the week, I remember being frustrated strep was keeping me home. Luckily, I seemed to have natural affinity for coming down with strep over the weekends.
Then about 2 years ago, my illness progressed to the point where I physically couldn’t move without intense pain. I was lightheaded more often than not. As it progressed, there were days where I threw up all day, I couldn’t eat to keep up my strength, and my vision looked as though someone had turned on a strobe light. That was my normal. Finally, I was diagnosed with POTS. I learned about how with as severe of a case as I had, I needed to rest pretty much all day every day. It was like learning how to live life all over again. If I caught a cold or the flu, my body left me no choice. I couldn’t get out of bed. It wasn’t possibly for me to be okay with that. I felt like a selfish wuss. A cold keeping me down? I can’t move at all the whole day because of the flu? Strep means 3 days in bed and possibly a visit to the hospital for fluids? That is all ridiculous! I still carry these same sentiments even though my body keeps me from acting on them much of the time. I just sit, stuck in my chair thinking about all of the tasks I’d like to be completing. I also know others don’t think of me as weak for needing to rest so much, especially when I catch a routine illness. In fact, people used to beg me to rest. Well, wonderful news! After today, I have hope a cold will never again prevent me from fulfilling my obligations… which are admittedly few at the current moment… but still! Maybe strep throat will come around this Fall and knock me down on my butt, but a cold will not.
I woke up today (day 29) with Jake’s cold. I am incredibly tired. My POTS fatigue has cold fatigue. As I’ve reported in an earlier post, my pain levels are much lower than normal since treatment. Amazingly, this cold doesn’t seem to be upping the pain levels in the way it would have 30 days ago. It also isn’t triggering pre-syncope or nausea. Therefore, today I decided it’d be safe to try out being the wiser, POTSie version of old Jackie with a routine illness. I decided I would not allow my body to force me to lay around all day, letting the day escape me. I’ll never get this day back. However, I also wasn’t going to do as much as I would were I cold-free. I completed my temperature training, starting out at 82.4 and raising it to 96 in 7.5 minutes and keeping it above 96 for the rest of the 20 minutes. Those numbers are better than I performed on some of my best days recently! I did my heart rate variability (HRV) training. I was tempted to take it easy and lay flat while doing it and do it on the lowest level. Instead I challenged myself by sitting up with my feet on the floor and doing the medium level.
As you can see, I didn’t perform remarkably. Yesterday and the day before, I scored 90% sitting up on medium level. However, I didn’t have a cold yesterday and the day before. If you look at the blue blob of progression on the lower left hand side, you can see I would struggle, get my HRV under control, struggle, rein it back in, struggle, control, struggle, control…. but the periods of struggle became shorter and shorter. I had the opportunity to work on controlling my HRV, sitting up, on a rough day and I was able to take it. Unlike usual, my body didn’t take this opportunity away from me by throwing a tantrum and making me nearly faint or something silly like that.
After that, I went out to my garden to pick vegetables. It didn’t sound appealing at all, but I wanted it done and it needed done, so I did it. I also was hoping the fresh air would give my immune system a little boost. I walked out to the garden (about 70 feet from my back door) and began to open the gate only to realize I had forgotten my garden gloves. 30 days ago, I would have just accepted getting poked by vines rather than using my energy to walk back into the house. Not now. I walked back into my house, grabbed the gloves, and walked back out to the garden. The fresh air was nice and I started picking all of the ripe vegetables. Yes, I was exhausted. I wasn’t running a fever. I wasn’t lightheaded. I was only in mild pain. I wasn’t nauseous. I wasn’t having vision white-outs. I wasn’t experiencing extra pain from movement. Compared to what used to be my “normal”, having a cold and my improved POTS is a walk in the park! I think if I woke up with just a cold, and no POTS, I’d think a miracle had occurred while I was sleeping!
When I was done picking the vegetables, I headed back inside. This is where the wiser Jackie steps in. Rather than forcing my body to continue being alert by reading, getting on the computer, or watching TV, I did a relaxation session to help my body recover from the standing, bending, reaching, and being outdoors. After my session, I got on the computer and did something productive which was writing the post you are reading. To most healthy people, my day probably sounds quite sedentary, even for someone with a cold, but to someone with a disabling chronic illness, it has been quite active. I even still plan to exercise for about 5 minutes.
My treatment program has allowed me to be more like my old self and not let a cold cramp my style. Everything I had planned on doing today that was important to me, I did. It would have been easy to give myself the day off today. People would have understood. I may have wanted a day off due to fatigue zapping my drive, but deep down, I knew I didn’t require a day off. The part of me who thinks in order to require a day off, I should be physically incapable of productivity will probably never go away. I don’t mind it. I happen to really like that extremely self-disciplined part of myself — she has gotten me places. However, there is also a new part of me. That part now understands that as I continue my journey toward full health, I need to be a little easier on myself (mentally and physically) when I come down with something if I want to maintain my progress and avoid a backslide. That part of me demanded I do a relaxation session after being outside and upright. I need to get plenty of sleep, I need to take breaks, and I need to listen to my body… unless it is telling me to do nothing except lay in bed all day. Then I will kindly remind it we are getting better now and the common cold no longer puts us completely out of the game.