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!
{ 15 comments… read them below or add one }
I think after the day you had, any phone call would have been too much for me!
I don’t know how much flexibility your insurance office, but I think you need a different physical therapist’s office. I’ve been to several that have clearly posted signs asking patients not to wear any fragrances.
I’m both angry and sad that you had to have this experience. How dare they be so insensitive and treat you so badly!
My PT is wonderful and very caring. The lighting in her office is kept low, and there’s always soothing music in the background, just loud enough to hear. She is very gentle and said upfront that if something she did during therapy hurt me, I should speak up so she could lighten up or work on a different area. She’s amazing, and I highly recommend her.
My rheumatologist is also great and considerate of those who have sensitivities to cologne and other strong fragrances.
I have a great support team, and am very grateful to be in their care. You should ditch that meanie PT and find someone who’s compassionate.
Good luck!
It is amazing that the office has lasted this long without someone explaining to them that fragrance is inappropriate as is loud music. My husband pointed out when we were there last week that it actually is a radio station playing so it has talking, news, etc. No wonder I couldn’t think! Glad you have such a caring PT!
Oops! Wasn’t done with that comment!
Anyway, I strongly recommend you call ahead to offices like that and discuss your sensitivity to fragrances and what their policies are. I hope your insurance will let you shop around to find a place where they will be able to work with you on that and the frequency of appointments!
I am learning as I go since this level of sensitivity and disability is fairly new to me. I get confused about what I should expect from an office and what I should do myself to manage my own needs. The input that other offices are being sensitive to things like not wearing fragrances is helpful. I am going to speak to my PT on Wed. and explain ME/CFS and see how willing he is to make some changes. If not, I will be looking for another PT office. My insurance isn’t as much the issue as this guy came highly recommended. However, if I am using up all of my spoons dealing with fragrance, bright lights, music, etc. then I don’t have any left for the actual appointment. That obviously won’t work!
I think that every office should send questionnaires well ahead of a scheduled first visit. I finally typed a list of my prescription meds and supplements, and just say on the medication part of all forms, “See list,” and attach the list. It’s helped a lot.
Great idea with the meds. I have mine listed out in my phone, but I should type them up and print them out. That would make life easier.
Fred Myer sells brimmed hats for women. They are attractive and appropriate to wear indoors. They change the style with the seasons. I leave one of these in my car to help with the lights. They are more socially acceptable than the sunglasses if you can get enough relief from the hats alone. They also keep the rain off of my glasses!
Great idea with the hat, Sandy. I am not sure if it will be enough to ward off the evil lights, but it is worth a try!
I am very impressed with your list. Fibro and CFS is such a varied and individualized illness that it seems like everyone has different triggers that seem to throw us out of kilter – just when we think we have control of our life. It is so important to take control of the external factors that impact our bodies internally. Who cares if you have to wear sunglasses indoors. PTs – as well as any medical professional – should know better than to wear perfume or cologne since so many of us have sensitivities and allergies to them.
Take care of you and gentle hugs!
Thanks Laura! Yes, I am learning that it is good to have a plan, but also good to speak up and say that the fragrance is not okay!
Oh I can sooo relate! One time I had to leave the doctor’s waiting room, because they used some kind of strong-odored, toxic antiseptic cleaner…I never went back. Have had to leave full baskets of groceries in the store, to flea the ammonia floor cleaners, leave restaurants in a hurry because they spray the tables and clean the floors with commercial cleaners while customers are eating…left many a movie theatre for perfume and for ammonia odors…they lower my immune system so much, I can wind up with bronchitis…have learned to adapt and handle situations better…still got really sick when the community highered guys to tar the roads with petrochemicals that had me sick for days…this has been on-going for 20 years…I usually stay indoors with air cleaners on and when I venture out, I do take my benadryls and a few valiums with me…the valium works…because it is the the nerves that attack my breathing system that get all worked up…this is how they told me to treat it, when I was in emergency with tongue and throat swelling from I know not what.
Sorry you have had to deal with all of that, Camille. My sensitivity is not that great yet although it seems to be getting worse. This world uses too many harsh chemicals, doesn’t it? Interesting about the valium. I would never have thought of that as a solution. Glad it helps you.
Sounded like any one of a number of my days. Different circumstances, etc., but as I was reading it, I was thinking how my body / mind would be reacting. Good for you for being a Strong Advocate for yourself, as well as setting a great example for those of us in your shoes to follow. I have gotten better about setting my boundries, but at times can’t get the gumption to to so. Thanks ~
Believe me, it isn’t easy for me. I hate having to stand up for myself and assert my needs. I would much rather suffer the assaults of the sounds, smells, lights, etc. and crash later if it wasn’t going to be an ongoing weekly appointment. Since it is, I really had to let them know. I comfort myself with the fact that they really needed to be educated for those that come after me.