In the darkness

August 8th is Severe ME Day and this year’s theme is home care. I’m going a but tangential here because I’m not exactly writing about the need for home care for daily living (which I certainly do need). Nonetheless, when I heard this year’s theme, it reminded me of my experience with professional in-home care visits I received from the hospital discharge order.

Severe ME Day 2015. #sufferingthesilence photo

Severe ME Day, 2015.
I wanted to mark my arm with “M.E.” like others have done, but decided not to because, thanks to M.E., I wouldn’t be able to wash it off for a long time. Taking a shower is a luxury that I have not been able to enjoy for months now.

It’s still weird for me to associate myself with severe M.E. After all, it was only a few months ago that albeit limited, I could still enjoy occasional outings. Just this past February, I was well enough to attend the Super Bowl party (although I did spend the most of time just sitting on the couch) and go to physical therapy for my post-operative hip rehab (although the exercise intensity was continuously decreasing despite my consistent work). By this past spring, I was mostly house-bound, but I could still manage to go out to grab a quick meal here and there. I was well enough to play video games with my husband for an hour or two. I didn’t require a walker or a cane to navigate inside the tiny apartment. I would have days that I was stuck in the bed sleeping all day, but I never considered myself to be a severe M.E. patient. Maybe moderate-severe, but not severe. You can even check videos I manage to make before I got bed-bound. One could argue that my M.E. fit the category by early spring considering it took me days to recover from one hour outing, but in my mind, I was not in full grasp with how ill I had gotten, and I stuck with the moderate label.

Then things have changed rapidly. Requiring someone to care for me and physically unable to leave home at all unless I’m getting carted out, there is no getting around admitting that my M.E. is severe now. I’m gradually recovering (knock on woods) from the massive crash from this past May, but I am still far from where I was merely three months ago.

A product of our culture that heralds people who “overcome” their illness, I often find myself wanting to do more and expecting more from me. After all, I am a natural “overachiever.” But at the same time, I have learned that my want is not the same as my need, and I’ve become realistic about what I can achieve.

Until last year, I struggled with the fact that more I tried, worse my health became. I did not know I was dealing with M.E. and kept pushing myself, engaging in more activities. It was heartbreaking and I felt helpless. I was severely depressed and often suicidal. Knowing that disappointment and frustration fueled my depression, I became a realist – accepting things as they are with no judgement or emotion attached. I dropped my fighter attitude and blind optimism that things would just get better.

I’ve since learned that many people do not understand or feel comfortable with my attitude, and they confuse it with pessimism. I think I have a healthy view of my illness. I don’t catastrophize, and I am still constantly operating at my full capacity, doing what I can, instead of grieving over my life that should have been. I know there’s a possibility that I recover enough to return to school, given necessary accommodations. At the same time, barring some miracles, I know I’m not going to be attending the Taylor Swift concert next week like we had planned months ago, and I’ll likely miss the entire football season. I will probably not be returning to school next winter quarter like I hoped when I initially went on a leave early this spring. I have to admit I’m a bit bummed that I wouldn’t be able to attend football games, but I’m not sad or crying about it. I’m just being realistic that it would be an absurd goal to announce that I am going to get well enough by next week to go to a concert, or healthy enough by next month to attend the first game of the season. I was upset when I had to miss home games last year because I was not feeling well, and it was not helpful for my depression. By deciding that I wanted to attend all football games, ignoring my worsening health condition, I set myself up for a failure. Disappointment was hard to deal with. I started expressing that it is what it is – there’s no meaning behind my illness, and while it is unfortunate and I hate it, I acknowledge that this is my reality and I need to learn to live with it. It’s a simple fact that with this disease, “positive” saying like “you can achieve whatever you set your mind on” is toxic. I have to adapt to my limit and live within it in order to survive without compromising my health.

I am not a type of person who can just lie or say OK for convenience or to please others. So when PT/OTs kept “encouraging” me to set goals, I declined. I was honest with them that if I told them something to get them off my back, I would be lying. Or if I don’t lie, knowing my personality, I would over-exert myself trying to meet the set objectives, defeating the real purpose of increasing my functionality. I let them know that M.E. is different from most other diseases that pushing through “fatigue” (for the lack of a better word) can be detrimental to our long-term health, and because of variability in my condition, it was unrealistic to set goals like 5 repetitions of this exercise every day or walking to the bathroom by next week. I appealed that it was important for me to listen to my body, as recommended by top experts in this disease, and that I was a type of person who constantly pushed my limit anyway, so no need to worry about me just sitting around.

My pleas didn’t go too well. At the hospital, the OT assigned to me actually took offense at my unwillingness to do as she commanded, and decided she knew better what was best for my health than my doctors and me. She actively tried to sabotage the discharge DME orders. She gave me reasons like “it won’t fit in your car” for my wheelchair (not true, and even if it were, none of their business), or “insurance only approves if you have bed sores” for a hospital bed (it took me two minutes of web searching to find out this was not the case). I was discharged with a home care with OT/PT visits, and while my in-home therapists were not as rude as the one I encountered at the hospital, I kid you not, one of them said “I don’t believe you” when I told her that I was not supposed to push myself (thankfully, with my move, I only had to see that specific person once). After that meeting, I made sure to point others to right resources so that they would see that I was not making it up. Eventually, instead of figuring out how to help me best, they discharged me because they thought they had nothing much to offer.

Considering I’m gradually regaining some of my functionality and hoping to get more back, I should benefit from in-home therapists who understand the limitations of M.E., but with the current lack of educations about M.E. among medical professionals, I am better off with no support. I had an incident that my PT carelessly left me on my wheelchair against my request after showing us how to use a sliding board (which was a disaster itself. We tried to let her know what she was asking me to do was dangerous in situations that I wouldn’t be able to transfer to wheelchair myself. Well, turned out it was too much when I started off feeling well). I was exhausted and she initially even forgot to lower my head on the reclining wheelchair. When I let her know I need to get back to bed, she responded with “just a minute” and kept talking. My husband saw that I was not OK -I was too unwell to argue back and demand to be back in my bed- and came to my rescue. My recent steady improvement coincides with absolute resting at home with no more in-home therapies or carting out for appointments.

Severe M.E. patients are stuck in this dark area, where we are too sick to receive care we need from the medical professionals. It is counterintuitive that sicker patients receive less care, but with current lack of education about M.E., typical interactions with health care providers can be dangerous. I’m personally left wondering whether I would have returned to the moderate M.E. territory if I avoided going to the hospital and receive inappropriate care.

We initially looked for a skilled nursing facility for the discharge from the hospital, but learned that insurance would not cover it because I wouldn’t be able to participate in standard rehab activities that were designed for patients without M.E. So I came home and the burden of caring for me fell entirely in the hands of my family.

I think home is absolutely best place for me and probably most patients with M.E. While it was relieving that there was someone to take care of me all the time during the hospital stay, it was certainly not conducive to the type of recovery I needed. I lucked out initially in a single, and even then, constant in-and-outs of people were overwhelming. It was horrifying when doctors initially mentioned a four-people room (I was eventually relocated to a double, which was still a lot to deal with). At home, I wouldn’t have to worry about constant battering of people and get the rest I needed. So in a way, I was glad I was going home. But at the same time, I was in need of 24/7 care and I was delicate. Home was a safer place only because of sacrifices that my husband was willing to make.

With the current negligence of M.E., I don’t know how to feel about the irony that oftentimes the best care option for severe M.E. patients is to suffer in silence. Until the End ME/CFS Project started, very severe M.E. patients were left in the darkness even by the researchers who work hard to bring us some answers. With the news of the large donation for the project just in time for Severe ME Day, I’m cautiously hopeful that we are moving towards the turning point on understanding of this devastating disease. Until then, I’m just glad that I am not suffering from Very Severe M.E. I know there are a lot of people doing much worse than me, and if my care team didn’t turn around at the hospital, I could easily have been one of them. Just several hours spent in paralysis was scary enough for me, so I cannot even fathom how it’d be like to live in such a state everyday.


Please consider donating to the End ME/CFS Project. It’s the first study (that I am aware of) focused on severely ill M.E. patients, and is entirely crowd-funded. This study will help millions of M.E. patients, not just severely ill, but everyone. Sure a few dollars from me alone could seem like nothing compared to a single check from a generous, wealthy donor, but isn’t there something beautiful about having a large number of people gathering forces, even by small bits? If every M.E. patient, family, and friends spared a couple of dollars, many studies like this would be fully funded.



3 thoughts on “In the darkness

  1. Karen Van Tuyle says:

    As someone with all the full blown effects of CFIDS in what I think of in the moderate to severe level, I wanted to compliment you on your writing and ability to express yourself so well in your post. I am starting to have major cognitive difficulties, especially with words so please cherish your wonderful ability to communicate. Thank you also for the energy and time I know you expended.


    • Thank you so much for your compliment! My communication is much much less impaired when I write compared to speaking. I think the best part is that I can take all the time in the world with writing. I’m such a chatterbox, so I needed an outlet to express myself, and picked up writing. I did have a hard time past couple of days from pushing out this post on time, but I think the worst part is already over, phew!
      I’m sorry that you are experiencing more cognitive difficulties. I will cherish my fortune that I’m still able to express myself. And thank you so much for taking time to leave me a comment!


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