This world is just not user friendly for those of us with ME/CFS. I am sure the same can be said for many different illnesses or handicaps, but I can only speak about the one I live with.
I went for my first physical therapy appointment last Friday to rehab my messed-up neck and cervical spine. I walked into the office and was immediately hit by the receptionist’s perfume, followed by the bright fluorescent lights and then the music playing. Already reeling and dizzy, I was handed several pages of forms to complete that to me were much too complex. I wished they had mailed them so that I could have done them at home where it was quiet, not so brightly lit and just less sensory stimuli in general. However, like a good little girl, I went to work trying to “do my best.”
Finally I was down to one final form that I just couldn’t grok. I told the receptionist it would have to wait until I had spoken to the physical therapist.
The physical therapist soon came to get me and he was also wearing cologne. He took me to an exam room with another bright fluorescent light. Luckily this one he was able to extinguish and turn on something dimmer. He then took me through a battery of tests for range of motion, reflexes, etc. Once finished, he explained my condition to me and what we could do about it.
He performed some therapeutic maneuvers that were painful and had me do three gentle stretching-type exercises. He stated that he needed to see me twice a week for four weeks and didn’t seem to understand when I said this wouldn’t work. As I was leaving, his assistant chased me down with the form I hadn’t completed and had me finish filling it out.
Dizzy and exhausted, I clung to my husband as he led me to the car for the roller-coaster ride home.
At home I had a phone appointment that ended up lasting an hour and a half. When this was over I was done for the next 48 hours. Yep, the old push and crash that I have almost made an art form! Because I forced my way through for a few hours on Friday, I spent the entire weekend unable to function. Not a good trade-off.
Because the world is not going to change to accommodate those of us with ME/CFS, it is up to us to anticipate these obstacles so that we can prevent as many of them as possible.
From now on…
- I will ask all new medical offices to mail me any forms so that I can complete them before my first appointment.
- While it might be embarrassing, I will wear my sunglasses inside any office that has bright fluorescent lights.
- I intend to purchase earplugs that I can use for times that loud music is playing or any other noise is disturbing me.
- I have written an explanatory sheet about ME/CFS that I intend to give to my PT and will take with me to new appointments or meetings if I think I might need to educate whomever I am seeing.
- I will remember that it is my body and my decision, so if I need to set a limit of one appointment a week, then that is what I will do.
- I know better than to be on the phone for more than 30-45 minutes at a time and so “shame on me” for not speaking up and saying that I needed to continue the call on another day when I was more rested.
I don’t know that I can do anything about the perfume and cologne; however, if I can mitigate all the other factors, then maybe I can better tolerate that assault on my senses.
No, the world is not user-friendly for those of us with ME/CFS, but we must remember that we have the power to plan ahead and do things that make our own lives easier!
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