Status update

Forgive the crappy chart. You know pre-illness me would’ve wasted time building something prettier with ggplot.

Since the illness started I have tracked my symptoms and status in a number of ways. For a period between February and April when I crashed severely I started developing a lot of new (and scary) symptoms, and so I tracked each individual symptom with a severity rating every day. It was burdensome and ultimately pointless, but at the time I didn’t have any doctors who had a clue what was going on (that late February to April period was a very scary time). Once it started to become more clear what was going on and I had slowly pulled out of that crash I dropped this. (What I now know is crashes over time tend to become more severe and last longer, so you want to avoid them. Unfortunately I compounded a smaller crash at the end of February by starting to push through it too early in the recovery, I think this is what initiated the severe crash that followed.)

The other way I’ve tracked is very much more subjective. It’s a rough weekly/monthly average rating of myself between 0 and 100 where 100 is my pre-illness self. It turns out to work pretty well, in part because you know week to week or month to month if you’re feeling better than the previous or worse. And it’s not difficult to compare yourself and your sense of function over time. The above chart is this measure, and I’ve used it a number of times to explain to doctors the history of my illness (though those versions have more hand written annotations of specifics).

Since the IVIG it’s been a pretty clear upward (albeit slow) trend. I’ve had a few rough patches over the past few weeks, and I still get PEM when I overdo it. (Overdoing it is merely being on my feet too long these days.)

My average day now involves 13 hours in bed. 10 minutes sitting in the kitchen drinking water to hydrate. We have stools dotted around the house for me to sit on. The hydration really helps the POTS first thing in the morning, so I try to get 1.5 liters in me to start the day. 15 minutes sitting in the shower. I still have to sit to conserve myself since I’d rather use my “time-on-feet” budget for other things. I’ve had to take sitting showers since February 2018. 10 minutes walking to the coffee shop. 30-60 minutes reading or similar at the coffee shop. 10 minutes walking home. And nine hours or there-about sitting or laying on the couch.

On a better day I have a couple of hours I can spend on the laptop dealing with whatever bureaucratic stuff needs attending too. It’s amazing how much work is involved in being sick between dealing with medical billing errors, managing disability insurance requests, trying to get better treatment, coordinating to get a medical review so maybe you’ll be able to go home, etc. When not dealing with that stuff I’ll read some tech news (I spend too much time reading hacker news).

Needless to say my days are still very boring. I’ve spent a year basically in bed or on the couch. It wouldn’t have been so bad if I was still able to do mental tasks. But of course that’s not been the case. I am able to increasingly read more without running into the fuzzy concentration problems, which is good since I am sooo sick of TV (and there’s nothing even remotely decent I haven’t watched, my latest theme has been post-apocalypse and antarctic/arctic — I really wish someone would do a good The Thing sequel). All those books people sent me over Christmas I’m making my way through. Thank you.

A lot of symptoms have mostly or entirely gone away now, it feels good to have a simpler symptom list. Things like the flashes of light. Or the brain “switching on and off” symptom that nobody knew entirely what to make of except maybe some kind of TIA or seizure.

The fatigue is still overwhelming. It’s impossible to describe the kind of fatigue you get with this illness, and just how it feels to be so unrelenting. The best comparison is for those who have had a bad bout of mononucleosis, it feels like that, but worse, and never ending. My mononucleosis that kicked this off was a pretty bad case, but I would very-very much welcome returning to how I felt back during that.

The POTS is improving slowly it seems. I’ve not been measuring it as much as I used to, because it just seems to be slowly improving. But I did monitor it more this week, and it’s surprisingly variable. It now ranges between about 90 and 120 bpm when standing and my standing diastolic blood pressure ranges between 86 and 99 mmHg. First thing in the morning is always worse, and improved by consuming fluids. But then during the day it can be pretty random on that range when I measure it. I’m surprised how much it varies. But while the top end of the measurements is still high, I’m encouraged by the fact that overall the bottom end of the measurements is going down and the measurements overall seem to be more often lower. (Of course the measurements are much improved over the October and November period, where the ranges were 130-160 bpm and around 105 mmHg.)

As far as the POTS goes, I still have to limit any instance of time-on-feet or I start to get symptoms of lightheadedness, confusion, a weird kind of “where am I” feeling that is hard to describe, my vision narrows, I really need to sit down and then I won’t recover well for the rest of the day, fatigue will worsen, and I will have some PEM the next couple of days. But it’s improving

I also have chest pain now, that starts after being on my feet for a bit, and gets worse over the day. I don’t know what this is, but it is getting worse. I’ve had chest pain symptoms before but this is a new kind.

Cognitively it’s still hard to concentrate and hold things in memory, but this is improving over where it was. A hard aspect to understand about the cognitive symptoms is that using your brain can bring on and worsen your symptoms of fatigue. Particularly anything requiring attention like driving (which I don’t do anyway because I feel unsafe, and like I’m going to miss something and cause an accident). But when they’ve done studies on this using MRIs they can see that perfusion of blood is reduced in the brain — so you’re not getting as much oxygen and blood as a normal person. And then they also see interesting things like they can measure the amount of lactate and other chemicals in the brain and they are increased. So essentially you’re working your thinking-muscle, and it’s not getting as much oxygen and it’s building up these chemical products that don’t clear as well, and so you get symptoms from it. Interestingly when they measure temperature in the brain (which I was surprised to learn there is a technique to do this using MRI) brains in CFS patients also run about 1 degree hotter than normal brains.

Sleep is still poor and unrefreshing. That hasn’t changed.

Neuropathic pain (the burning pain that felt like being covered in fire) is almost entirely gone now. A few patches remain on the forearms and lower legs but over the past month it’s maybe ranged between a 1 and 3, over the past week it’s been entirely a 1.

The tingling and numbness is about 50% improved (maybe a bit more, there are times I really don’t notice it now, but it varies).

The myalgia (muscle aching) is still there unfortunately and varies. It’s definitely something that gets worse after overdoing it. It’s not a good muscle ache like you get from exercise, it’s a horrible ache like something you feel during the flu.

A symptom that has gotten worse is the dry eyes. I used to just get it during PEM or crashes. But now its constant. It could in part be due to the location (generally drier inside air, although we have a humidifier keeping it between 30-40%), or it could just be getting worse. A few doctors have suspected Sjogren’s for which this is a symptom, although I was seronegative something like 60% (IIRC) of Sjogren’s patients are, and it fits with the auto-immunity).


Cabin Fever

January was an extremely rough month. The weather was much colder and icier than we’re used to, so we spent way too much time in the apartment.  February isn’t much better and we’re still generally feeling pretty stir crazy, especially Kris, since he’s so limited in what he can do.  I just started volunteering with a food pantry and soup kitchen on Monday mornings, so it’s been relieving to have some interaction again.  I wish Kris could get out and see people. We’re having a pretty difficult time emotionally. Being alone inside all the time leads to asking a lot of internal questions, reflecting on regrets, and worries about the future.

Kris hiding out in the warmth as I investigate this white stuff all over the ground.

We didn’t make it to Arizona.  I ended up taking Kris to the emergency room to have his heart monitored.  What would have been a 2-hour direct flight from Seattle was going to be 10, with connections from here – so I’d be much happier making that trip from home.  We already know that traveling makes him much worse, so I don’t know that he could survive another exacerbation of his symptoms – his last one was worst thing I’ve ever seen anyone endure.  Maybe it’s for the best we postpone it for now, as helpful as it would have been for us as we embark upon an independent review.

We’ve been able to initiate an Independent Review of Kris’s IVIG case which we hope we can use to persuade Cigna to cover his IVIG so that we can return home.  I can’t tell you how important this is to us, but also just how much stress this puts on us.  It requires a lot of our time to organize it and effort from our doctors to submit the data and the arguments for our case.  Please keep us in your thoughts, meditations, and prayers.  We would really like to come home.

Last, but not at all least, we lost our beloved pet rat Tuna and discovered that our other, Blose, is very sick and has limited time left with us.  I know this might not seem like a big deal for a lot of people, but they weren’t just rats or pets to us.  They were a part of our family and for two people who want nothing more than stability and the love of family & a home, they meant the world to us and were the glue that kept us together through hard times.