LindsayAn entire book could probably be written about simple things that are made much more difficult by dysautonomia and ME/CFS. Some I have mentioned before and are probably pretty obvious: Exercise. Showering. Standing. But others may not seem so obvious.
I don’t want to be a traitor to my gender, but I hate getting my haircut. Hate. Haircuts may seem fairly easy – you let someone massage your head, then sit in a chair for 30 minutes and chit chat while someone cuts and styles your hair. Minimal energy, right?
Wrong. Getting a haircut becomes an ordeal, on multiple levels. First, I don’t like that washbasin-sink thing where you sit up, but tilt your head back at some ridiculous angle. Tilting my head in certain directions can easily result in vertigo without any warning. It’s also painful and causes a headache.
Next, salons often have those fluorescent doctor’s office bright lights overhead. I tend to have light sensitivity – for some reason it causes lightheadedness and visual disturbances. Sunglasses are my best friend, and not just because they make me look super cool. So, while the stylist is tilting my head back in the aforementioned torture chair, I’m staring up at those beautiful florescent lights and counting stars. Literally.
Dysautonomia and ME/CFS often cause me to have random nerve and muscle pains. Usually nothing too severe, but certainly persistent and annoying. Lately I have sore spots on my head that hurt to touch. I assume it’s a random nerve pain thing, like I get in my left hand. And feet. And leg. And shoulder. And ass.
Just kidding about the ass.
Parts of my head feel like they are bruised, although it has been going on for many months, so I don’t think there are actual bruises. Although I do tend to run into things a lot, so it’s possible. I should wear a helmet.
Normally head massages while getting shampooed are wonderful, but with random head nerve pain, not so much. They end up being unpleasant, at best.
Lastly, getting your haircut is primarily a social thing, and I love a good mother’s-friend’s-son’s-girlfriend’s-dog story as much as the next gal. However, chatting actually takes a lot of energy. I have to lay down while I talk on the phone because I get tired. So, thinking of clever and charming things to say for 30 minutes while getting my haircut requires a nap afterwards. Thank god for loud hair dryers.
Naturally, I put off getting my haircut for a while. There’s not usually a good day to wake up and say to myself, “I think I’d like to go pay someone to give me a headache and make me dizzy today.” I look forward to a dystopian society, only so I can shave my head like all the other nameless drones.
Eventually after putting it off for months I get frustrated and decide a moderate headache is better than the disheveled, unkempt look and book an appointment, like I did this week. The good news is, I no longer look like a hippie, and probably lost 5 pounds from the enormous amount of hair they cut off. It’s the little things.
How about you – what formerly easy tasks do you now find difficult?
“Nothing worthwhile is ever without complications.”
― Nora Roberts
Smell ya later.
Linds
WOW— I am findng many of us with invisible illness share many of the same problems!!!! I suffer from MCS– Multi Chemical Sensitivities & Environmental Illness & Electromagnetic Hypersensitivity & Fibromyalgia & Chronic Fatigue just to name a few health problems & I live in a “Safe home” as chemical & scent free as possible!!!!! And I suffer from many of theses illness because I was a licensed Cosmetologist for many years & also worked for a hair color company– & used toxic killing chemicals for years–& now I can’t allow anyone to shampoo my hair or use any type of product on my head or body– & I have to be the first person in the salon in a morning– & when no others are in the salon– & I can only use one professional who understands my health problems to cut my hair– no other services at all—- & also has an air purifier going while I am there– & can only use water in a spray bottle on my hair– has to use a special cape on my that has no scents– or fragrances– etc etc etc etc etc etc etc— & I always suffer from headache & many other symptoms after getting a “normal” hair cut!!!! 🙂
I was thinking about you MCS ladies while I wrote this post! I can’t imagine how complicated a haircut becomes when just setting foot in a salon is nearly impossible! Thanks for sharing your experience!
Haircuts are a big deal. In the beginning my previous hairdresser would bring a chair out into the alleyway of her shop, spritz my hair with water, clip, clip, clip, and I would run home and rewet it and dry it just to see if the cut was a good one and even. She sold her shop and couldn’t do my hair anymore. I found someone else who came and did it in my back yard and we plugged the hairdryer into a socket on the patio. Then he left. Number three came and did my hair outdoors the same and even came in and put a tyvek suit on in the winter.
Now I go to my daughter’s home and a woman comes there to cut my hair. The list of tasks that have become more difficult is endless. Today I had to go to the store to get my bottled water that they special order for me. I needed my 7th Generation Laundry soap. There were no store employees nearby so I wrangled a young man and asked him to go down the aisle and get it for me. Oh BOTHER!
Wow, what an ordeal just to get a haircut! As I mentioned in the comment above, I was thinking about you MCS ladies while I wrote this post! Finding a hairdresser you like is hard enough, I can’t imagine what you have to go through to find one who will come to your house and be sensitive to your chemical issues! With all the chemicals and fragrances in salons, I can understand why that’s impossible for you.
I’m glad you shared your experience with grocery shopping – things like not being able to go down the laundry soap aisle are huge complications!
By the way – I am tweeting your quote. Love it.
Reblogged this on allergictolifemybattle and commented:
Haircuts are a big deal. In the beginning my previous hairdresser would bring a chair out into the alleyway of her shop, spritz my hair with water, clip, clip, clip, and I would run home and rewet it and dry it just to see if the cut was a good one and even. She sold her shop and couldn’t do my hair anymore. I found someone else who came and did it in my back yard and we plugged the hairdryer into a socket on the patio. Then he left. Number three came and did my hair outdoors the same and even came in and put a tyvek suit on in the winter.
Now I go to my daughter’s home and a woman comes there to cut my hair. The list of tasks that have become more difficult is endless. Today I had to go to the store to get my bottled water that they special order for me. I needed my 7th Generation Laundry soap. There were no store employees nearby so I wrangled a young man and asked him to go down the aisle and get it for me. Oh BOTHER!
A haircut at a salon is a luxury I haven’t enjoyed in a long time due to my chemical sensitivity. It is very difficult to find someone competent who will cut hair outside of a salon because of the board of cosmetology laws in my state.
Standing in line is difficult. There is always someone in line with perfume or smoke on their clothes. It means I can stand in line and feel lousy or I can leave and live without whatever I need to stand in line for.
i can relate to what you said about standing in line, it is difficult for me as well. not because of chemicals, but because i get dizzy and lightheaded if i stand for too long. often i will have to decide how much i need whatever i’m standing in line for. often i just give up and leave.
thanks for your comment!
I would think the laws would be more lenient for having your hair done at home. The hairdresser could even use your own supplies.
Not so in the states I worked as a lic. Cosmetologist-(I was lic. over 45 years-) as a matter of fact it is against the law in most states to work at home— & they can give a huge fine & take your lic. away if you are reported for working at home!!
You would think, but the law is that no licensed stylist can cut hair outside of a salon. I wrote the board of cosmetology for an exemption due to my disability and never got a response.
Thanks all your knowledge. I can relate to your blogs. I have Dysatonmia, and was diagnosed a year a go . ..I have not worked for about a year or more. I have changed so much of my life with this disease, and I am in the midst of trying to get disability. Thanks for all your suggestion…………Lori//
it is certainly a difficult diagnosis to receive. i hope you have found a good doctor and some treatments and/or lifestyle changes that are helping! good look with your disability filing – i would be interested in hearing how it goes!
I get my hair cut dry to avoid the hair washing thing but still have been putting it off for 6 months now! It’s gotten to the point where it REALLY needs it, but I just cannot decide which day I’d like to ruin…
yes! that’s exactly the position i was in. i was about 6 months overdo, but there’s never a good time to have a crappy day.
thanks for commenting!
Seconded!
Holy cow. I could use this same title for a post on my blog – except use “brain tumor” in place of illness. I miss getting my hair DID! 🙁 I can’t angle my head/neck back in the basin thing because the effing tumors are right in my cerebellum and the incision is right back in the back of my head. Oh and the fact that part of my skull had to be removed. Urg.
This comment wasn’t to play the brain tumor card…..SORRY! Just to say – I HEAR YA! I Just got my hair cut last week and it was so awkward! I had to kink myself up and hold my head up so as to not lay my head in the circular pit of death (my name – not theirs). Now, it PROBABLY would be OK to lay my head there…but I’m not interested in testing it out.
🙂
Chatting is really tiring! I totally relate to that and the ordeal of a haircut. I struggle with noise sensitivity. I think there should be silent salons without the background music, other chatter, hairdryer noise etc there are silent discos so why not silent salons?!
oh my gosh, i totally agree! i often have noise sensitivity too. fortunately this time i was the only customer in the salon, but loud salons are often an issue for me as well! quiet salons would be great – they could make it a whole relaxing “zen” thing.
The smell doesn’t bother me as much as the physical logistics. Like you mentioned, the sink never feels comfortable. It was with my old hairdresser (she closed shop for health reasons). She padded it with a small towel.
Then there’s the Highland fling to get into the chair. Stepping over that metal bar and through the opening while turning to sit and keep the chair still is tricky for me. I have balance and muscle strength issues, most likely related to MG. My former stylist used an old dentist’s chair. I could step onto the solid footrest, twist and sit with ease.
When I sit for even a short while, I need something to support my head, but I’ve never seen a head support on any chair at the beauty salon.
Please, don’t misunderstand me. I love my new hairdresser and the shop. Everyone is so nice.
i’m the same – i need something to help support my head! if i’m laying down on my back, i can’t usually lift my head up on my own. my neck muscles are very weak, i’m not exactly sure why. it makes those salon chairs even more difficult.
it’s great to have a good hairdresser that is nice and understands the issues – it certainly makes dealing with those issues not as bad, but unfortunately doesn’t resolve the difficulty of using those chairs!
I used to have very long thick hair down past my waist but I am no longer able to hold my arms above my head long enough to wash it or brush it. It eventually reached the point of having to choose whether keeping long hair was worth having to pay carers to come in everyday to wash brush and brais it for me. As a result I now have to keep my share boyishly short but that then brings the whole problem of having to get a haircut as I am photosensitive, unable to sit for long and have multiple chemical sensitivities. Luckily I have found a local hairdresser who fits me in after-hours so I never have to wait for her to finish with other clients. When she knows I’m coming she opens all the windows to get rid of hairspray from the air and I always have a dry cut using water from a spray bottle to damp my hair as I can’t cope with lying back to have my hair washed or having the noise of the hair dryer.
I have short hair that needs to be done about every six weeks. My lady is a one woman show, so low noise. My teen daughter drives me and waits for me. What I hate is when dd wants to go the diner a few blocks up for breakfast and I just can’t because I’m so tuckered out from my 30 minute haircut.
I also have problems with fluorescent lights and have found that blue tinted glasses help.
I’m a hairdresser diagnosed with dysautonomia 2 months ago. Working now is generally the hardest thing I’ve ever had to do. I know I have multiple chemical sensitivities, along with food allergies. The chemicals floating around the shop have to be contibuting to how bad I’ve been feeling. I have clients that I know need quiet time for their appt just like sometimes I need to be quiet during their service so I can try to concentrate and ignore the brain fog. Tough stuff, but what do you do when you have no choice? I’ve gone to sick clients homes before to do haircuts. And possibly having a scent free day for sensitive clients. 💜
Thanks for your comment! Wow, I’m sorry to hear about your diagnoses! it must be especially difficult working in a salon with multiple chemical sensitivities. That’s wonderful that you have offered home haircuts for sick clients – I wish there were more professionals that provided services at home!