a stranger at home

It’s been a month since we moved to a new apartment. With dramatic change in my functionality and becoming bed-bound, we had to find and move to a new place ASAP to accommodate the hospital bed and mobility devices. We had to move later in the summer anyway, but with my sudden worsening of ME, any kind of “plans” we had meant nothing.

Within a week after my discharge, my husband managed to find us a new place, and we moved the week after. I was (am) still bed-bound, so you might wonder how I got around, getting to doctors and moving to a new place. The magic device is my reclining wheelchair.

I was discharged with the order for one (how I got it ordered is a part of a long story that I will write sometime), but the DME vendor that the hospital used didn’t have one in stock, and they didn’t know when their order would come in. Medical transport service that the hospital case manager referred us to quoted us $600 for a round trip to my doctor’s office. We (my husband) called around but the best we could get was $450. Yeah, no. So my awesome husband called around other DME vendors to locate a reclining wheelchair rental, and he found one!

My first outing was to see my doctor who has been working with me since this February to treat my ME. He does offer phone consultations, but it’s harder to follow what’s going on for me on the phone. A physical meeting is also easier for people to recognize when I start losing my focus and need a long break. It’s difficult to express when I start to get overwhelmed that, well, I’m getting overwhelmed, and people usually end up talking over me, compounding the problem, unless my husband is there to interrupt/take over the conversation for me. Anyway, I wanted to go see him in person, although I did let the office know I might have to switch to a phone consultation last minute.

Reclining wheelchair

Reclining wheelchair helps with orthostatic intolerance, common with ME. Sun glasses and a hat are a must with most lightings on the ceiling glaring directly on the face (the light sensitivity). Even when I would (or used to) be able to sit up regularly, head support, which is always present on a reclining chair, will extend my sitting tolerance greatly for me. Freedom of being able to lie down (almost) flat anytime allows me to leave home while “bed-bound.”

It was quite a learning experience. We tried to be prepared as much as possible, but it was something very new to us, and there were a lot of “I wish”es. The chaos my friends told me about preparing to travel with their small children – I imagine it is something similar. It gets easier for them more they do it and as their kids grow up; we have been getting better with more experience under our belt and as my functional capacity improves. Anyhow, I am fortunate that I feel well enough to travel this way occasionally when necessary. I do feel sick afterwards, sometimes for days, but I have been recovering. I know many ME patients are completely bound within their home due to various reasons.

The following week, we moved me to our new apartment. We allocated a full day for my transportation. The hospital bed that I was discharged with was delivered the day before, and movers were coming to do full packing and moving the next day. Of course, I was carted in the same fashion to our car.

My seat in our car is laid flat to keep my head as low as possible, so I can’t see much outside. My husband randomly makes a comment about something interesting outside while driving, and a lot of times I tell him “all I see is the sky and the tree tops!” He is actually learning the roads in the neighborhood because I can’t be his navigator anymore! We’ve been together since high school, all the way before our drivers’ licenses, so I never knew he’d learn the roads so well when he has to, hah!

Meanwhile, I am clueless where we are. We moved to a newly developing area, so I am not familiar with this neighborhood at all. I can’t even check it on Google satellite images because our apartment complex is still under construction in those pictures. Even inside, I have no clue where my unit is located. I get calls from my nurse, PT, etc., asking for directions, and I tell them I have never been outside and cannot help. When my friends were visiting, we had a good laugh after realizing that they were more familiar with the apartment layout and common areas. I have never been outside on the ground floor. It is always from the basement garage to my apartment.

I have a general idea of the layout thanks to a “tour” of my apartment through a video chat. It was nauseating to watch the unsteady images, but I was curious. Except for brief passage through the living room to leave home, I have yet to be in other parts of my own apartment. We just got a recliner to allow me to go out to our living room. I’ve been able to tolerate sitting reclined for a bit nowadays (Yay!) and wheelchair transfer has been getting easier, so I am preparing for a new adventure!*

With ME, home became a strange place. Stretch out my dirty feet on the coffee table; spending an idle Sunday afternoon still in pajamas, watching football games on TV all day; inviting friends over for a game night; unwinding after a busy day of work in a warm bath. Home for me is no longer a place with these activities (although to be technical, I am unable to do these things because of my health, not due to a specific place that I’m at). I am in a smaller room, confined to a hospital bed, while my own comfy bed is sitting in our real bedroom. I have not been in the bedroom, or used any other space at home.

I am a bad guest. I am difficult – I have so many requirements to be (somewhat) comfortable. I am rude – I demand everyone to act accordingly depending on how I am doing, and get grumpy easily otherwise. I am demanding – meals in the bed; asking things to be done while I’m just lying down; requesting everyone to be quiet in the living room. I am inconsiderate – I am staying without giving any sign of leaving. I am a stranger at my own home.

But I need to remember that it’s M.E., not me, that is all those negatives. It’s so easy for us, patients, and people around us to forget that we seem like different people because we have to adapt to this unyielding disease, not because we changed who we really are. I am still the same outgoing, vibrant, enthusiastic person who is full of life. I cannot show my inner passion nowadays in order to conserve my energy and avoid crashing because if I don’t watch out, I easily get over-excited and too eager, and end up paying for it heavily later on. But that myself is still there, and it’s confusing to people around me. Thankfully, I’ve learned to separate my conscious self and my physical ailing body, but in the past, I spent many days wondering if I became lazy, apathetic, or disconnected. M.E. changed how I live my daily life and interact with others and myself, creating the illusion of a stranger. The stranger at home is M.E., not me (bad/corny pun intended).

*My recliner arrived this morning, but thanks to a major crash since yesterday from an unexpected outing to a clinic, my adventure is postponed until I recover more. It takes me a while to type up a new blog post (typically at least several days) and thankfully, this particular post was mostly finished a couple days ago; otherwise I would have added another week or so to the composition time. I left in the original writing before the big crash to highlight the unpredictability of ME. I was doing so well, making steady improvement** – in fact I even went out to try different recliners a week ago after my husband narrowed it down to a few chairs from a single store. All it took was one single outing to the hospital to set me back by at least a couple of weeks.

** I would also like to point out that typically steady improvement is not something someone should “expect” from most ME patients (so please don’t pass a negative judgment on a patient with ME who is not getting better because you read someone mention/expect steady improvement!). Personally here, I am referring to recovery from the sudden exacerbation of my ME in May, which was the absolute worst point of my illness so far. It’s like a regression to the mean: I am simply trying to make my way back prior to that specific exacerbation, sort of like a day to day fluctuations, except in this case, months to months.

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5 thoughts on “a stranger at home

  1. Vicki says:

    I have been bed and house bound following a relapse in 2009 and a extended hospital stay in 2010. Earlier this year I got an electric tilt and recline chair it makes life so much easier. I don’t have a consultant but my GP (PMP) does do home visits and he is incredibly supportive as is our district nursing team.. It’s an incredibly sad situation. I moved house whilst bed bound and was moved by ambulance.. I know the feeling of not knowing where you live too well.. I can really relate to this. Keep safe and hope you keep improving in the subtle ways we can at times.. Take care

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    • Actually the clinic visit I mentioned here was to do wheelchair evaluation! They are going to order me an electric tilt and reclining wheelchair, just like you mentioned, and when I was trying it out, I could see how helpful it would be for me. I’m well enough to do the “transfer” by myself nowadays, so it would give me quite a lot of independence.
      And thank you for your well-wishes. Luckily for me, I have been this bad for a short time, so I see a lot of room for improvement that is feasible and realistic. I am trying to do things “right” this time. I used to push myself every time I felt even tiny bit better and ended up getting worse. I am being much more patient this time, and it seems to be helping!

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    • Don’t be sad, Papa! I am not mourning anymore. It’s been that way for quite a while and probably why (that I “finished” mourning) I have been coping so well since the mega-crash. We should chat sometime!

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