Tildes Video Thread

(From Kyle, Dianna's husband)
Huge thanks to Destin from Smarter Everyday for making a great video about Dianna’s journey, and his visit to see us earlier this year. I hope you all had a chance to watch it here [https://youtu.be/xbcjf-hrOAs]

As most of you know, Dianna has been diagnosed with ME/CFS and Long Covid (which many - but not all - experts agree are the same disease). While there haven’t been any transformational changes since she first became bed bound in February of this year, I’d like to share a little about what’s happened and how she’s doing.

In short, we’ve tried a lot, and most of it hasn’t been particularly notable. She’s done supplements, physical therapy, meditation, prescription medication, hyperbaric oxygen, you get the picture. For Dianna, some of the medication has been successful at relieving symptoms and stabilizing her conditions, but nothing has moved the needle significantly in terms of quality of life.

In early July of this year, Dianna was doing physical therapy to try to regain mobility and independence. May and June were relatively good months, and although she was very sick, we know it's important to try and prevent physical deconditioning to the extent that is possible. In retrospect, we probably pushed too hard. She had a severe crash lasting months, and only started to come out of it in early September, just before Destin’s visit.

It's difficult to explain how painful - physically, mentally, and emotionally - these crashes are. Her body reacts to everything with severe inflammation and allergic-type reactions to normal, everyday items like food and clothing, temperature changes, fragrances, basically anything that isn’t her. This “reactivity” is driven by MCAS, one of the sub-syndromes of ME/CFS. Periods of intense MCAS activity are especially difficult because the allergic reactions drive acute cognitive changes that cause severe and sudden depressive episodes. I’m sure most of you have heard about depression and mood changes with long covid, and this is one of the ways it happens. Of note, there are times that taking an antihistamine or anti inflammatory medication will immediately improve her mood or snap her out of a depressive episode. Crazy stuff.

The summer crash was likely accelerated by emotional stress inherent to the terrible living conditions she’s had to endure. As she puts it, in order to avoid overexertion, she has to “unlearn what it's like to be human.” This sentiment is common in patients with severe ME/CFS - the idea that doing the very things that bring joy and fulfillment also make you worse. This is why we desperately need better treatments for long covid and ME/CFS.

After Destin’s visit in September, we tried a new medication to which she responded poorly. And so she was back in another crash cycle. While this one was shorter, it was emotionally more difficult to go so quickly from one crash to another just as she was free from pain.

Now its mid December, and over the last several weeks she has once again stabilized. We are committed to taking it slow. We’ve tested and tweaked her medications methodically over the last few months, and we have a regiment that targets MCAS and neural inflammation. These medications work well for her with minimal side effects.

We know she has other underlying conditions as well, such as SIBO and leaky gut. The problem is that these conditions are difficult to treat when her health is so precarious - as we’ve learned, medications (especially new ones) can cause prolonged crashes. So treating these conditions will be slow or will have to wait until she’s regained more strength.

But I view this all as kind of a positive snowball effect - once one thing heals, it will be easier to treat the next. She’ll keep gaining momentum and heal faster. Get back some of her independence and activities of daily living (ADLs, as they like to say in medicine). She is pointing in the right direction, and even though she can’t walk or even stand, and she can’t talk for more than a few minutes a couple times a day, she is hanging in there. She’s had a big positive mental shift that’s making the day to day easier for her too. She knows she’s stuck here, unable to live her life, but also believes that it will get better.

And although we do believe that, I don’t want to end on a positive note here, to do so would be insincere. Dianna is suffering everyday beyond what I’ve ever had to endure, even for a day. The acute physical injuries I’ve had - broken ankle, wrist, dislocated shoulder - and the “long” recovery periods following them are nothing compared to an illness like this. She is suffering so much, and in pain all the time, but there is no objective way to measure progress. So we are prisoners, forced to wait in a room for a day when she can be released.

So that is the reality here - we gently push her mind and body with therapy and medication, and we hope that one day she will improve substantially. But there are no dates - to set a date of recovery would only lead to disappointment. This way, without expectations, we can be present for and celebrate any win that comes her way.