I haven’t had the balls to write too much about this because it is all tied up in feelings of self-worth, obsessive perfectionism and long-dormant insecurities. This illness has taken a ruthless toll on my body and the changes on the outside have, surprisingly, been some of the hardest to accept. I say surprisingly because, if you are housebound and never see anybody, who cares what you look like? But the visible manifestations of youthful vitality disappearing have really saddened me and hit it home that I’m a different person now- in every respect. Even if I came out of this tomorrow, I am changed physically as well as spiritually.
I always looked, felt and, undoubtedly, acted younger than my age. About a year after becoming sick, that abruptly changed. Obviously, I don’t have a spring in my step anymore and I’m not as chirpy, lighthearted and energetic as I was, but my looks have also changed and it was a blow to my ego. I stopped cutting and dyeing my hair and its texture changed — it is dry and fluffy, rather than smooth and shiny. It becomes greasy very quickly. The hair loss on the top and sides of my head makes me feel old and sickly. My eyes are no longer bright; the whites are a dull grey and I’ve lost eyebrows and eyelashes that were already sparse. Last year, I saw an ophthalmologist for the first time with a list of grievances: gritty eyes, dry eyes, vibrating eyes, styes, blurry vision, floaters, difficulty focusing, difficulty reading… It was a long appointment and he did a battery of tests. My vision, remarkably, is still 20/20. I thought, considering I rarely focus beyond my four walls, that it would have deteriorated. But, the health of my eyes was a different story. He told me to hold a warm cloth over my lids for a few minutes every day to open the pores and treat blepharitis and, also, to use preservative-free dry eye drops four times a day (I was very impressed with his “preservative-free” recommendation based on my reactions to drugs. I’m happy to know they exist since I was using Bausch & Lomb eye wash and it would leave red track marks down my cheeks). He also found that my eyes had two different pressures, which he said was not normal and made me a glaucoma suspect. I return next month to have a check-up.
Dilated pupils to see the optic nerve.
I went off the birth control pill 16 months ago and, immediately afterwards, my skin began to break out. But this was no normal acne. I’ve dealt with skin issues my whole life, but I was familiar with them and I knew where spots would pop up (chin, nose), why they were there (hormones, smoking, picking), and how long they would last. For the past year, I’ve had acne along my hairline and jawline. My forehead, which was always pristine, became rough and braille-like. This really took a toll on my self-esteem. Even if I could have visitors, I didn’t want anyone to see me. I went from feeling not pretty to feeling downright ugly.
My visit to the dermatologist has given me renewed hope and a plan of attack. She wanted me to take antibiotics, but I refused based on my gut dysbiosis. She wanted to try a drug that is used to lower blood pressure, but also has the side effect of clearing skin, but I can’t because my low BP is a constant challenge. She wanted to use some sulfa Rx, but I’m possibly allergic. So, I have a glycolic acid face wash, a new moisturizer, Finacea in the morning and clindamycin in the evening. It is already making a difference. The braille turned out to be eczema, which I’ve never had in my life, but Desonide cream cleared it up in 4 days. I can’t tell you how nice it is to have my smooth forehead back. I keep petting it (which will probably cause more spots).
New this year is weight loss. I spent my teen years wanting to be tall and thin, worrying about my body, and now I weigh less than I did when I was 15. It’s partly to do with my elimination diet – nuts and oats might have been the bulk of my calories – but I am eating as much as I can every day. I lather on the butter and rely too much on Terra chips for added calories.
I started experiencing what I now know is called gastroparesis. My food sits high in my stomach and doesn’t digest. I want to eat more, but physically can’t. The food I do eat, I don’t think is being absorbed properly because I’m eating more than enough for a 5 foot-nothing, mostly-bedbound lady. Muscle wasting is now more evident. I have chicken legs. One of my greatest wishes would be to bulk up my legs. I never thought I’d say that. I want muscular thighs. I want my calves back. I want to have faith in my strength like I did my whole life. My height never made me feel like I was weaker than anyone else. I tried bench-pressing with my brothers, I was good at arm wrestling, I hoisted kegs of beer around at work and ran up and down stairs with heavy plates and large trays of food and cocktails, held over my head. I was proud of my strength and now feel like every movement might injure me. My chicken legs won’t reliably carry me and my muscles feel taut and brittle.
The good news is digestive enzymes and HCl are helping me to move food on down so I can eat more. I don’t necessarily want to add fat on top of bone, so my goal is to continue to absorb nutrients and increase activity.
Vanity always seems worthless and trivial, but, in the face of chronic illness, it seems almost sinful. Tall? Thin? Nice clothes? Pretty hair? Perfect skin? All I want is strong bones, muscles and cellular energy. Who cares about the rest? Well, I still do, but it’s a work in progress. M.E. holds a mirror up and exposes your bare bones… burns away the affectation and demands you be okay with the foundation and framework, without the superficies and facade. Be okay with the soul, alone. There is a bigger lesson here for me to learn.
Rag and Bone Shop of the Heart 
It’s so mean this illness has whacked you so hard. But congrats on getting your forehead back and being able to eat more food sounds wonderful. Protein up for the muscle if you can tolerate it. I focus so much on protein now, my lovely toned muscled legs from years of running etc are long gone and I too suffer from really greasy hair on and off, its so bad sometimes, just moments after stepping out of the shower the grease has already plastered itself on my head. My locks are turning grey and my skin at times feels cracked like the Sahara dessert. And don’t get me started on the fact I was recently almost knocked down by an elderly lady walking over me! I’ve said it before and ill say it again… you are one strong lady. xx
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Oh, I’m eating a lot of protein, been trying to cut back a bit, actually, because of ketosis/ketoacidosis. What is with the greasy hair? I kept blaming it on my “healthy” shampoo, but, even when I use my old brand, it gets greasy really quickly!
It’s hard when old ladies are stronger and faster than we are- I always say a little prayer: “please let me be like that in my old age.” I want to be an old lady that walks two miles a day, you know? You are one strong lady, too!! X
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I too want to be an old lady capable of walking two miles a day.. bring it on! I’ve no idea re the greasy hair. I thought perhaps it was hormonal but looking back over my diary I don’t see a pattern there. Then I thought maybe im using too much shampoo, wasn’t that either, so I’m afraid to say, I’m bamboozelled!
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Maybe it’s because I’m eating more fat and taking fish oil and not processing fats properly??
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That’s interesting, maybe. I eat salmon and eggs and coconut oil… very possible
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I really could relate to a lot of this. Both the feelings and particulars.
Even how you described your forehead…that’s oddly exactly what’s happened with mine. If I get sicker, it really comes on.
Thanks for articulating this. It helps some.
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So happy you could relate! The outward manifestations of illness still surprise me. My nails have completely changed, too. It seems unfair when I am eating better than I ever have. I should be glowing!
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I can understand completely how you feel! Of course you want to look your best- sometimes putting on a bit of makeup to hide the pallor of illness makes you feel a little less sick- even for a moment.
Can I suggest a marvellous product I discovered? It’s called a Konjac sponge. They’re made in Japan and Korea from the root of a plant that I don’t Bellevue grows in North America. I’m not allergic to them at all- and you know that if I’m not allergic to them, it’s extremely unlikely that anyone would be :-). They gave some that are infused with French clay, which I’m ok with too, and plain ones. I ADORE mine- I have a pink clay one for my face and a plain one for my body. They clean and exfoliate without any irritation, and make me feel a bit more of that ‘youthful glow’, and they feel like I’m pampering myself, which is as important as anything else! I sound like an info martial, but you know what it’s like to find something that works, and you don’t react to.
I hope that you feel strong and ‘alive’ once again. In the meantime- forgive yourself. This is not something under your control. You’re very, very ill, and those who love you don’t care what you look like. They do care what you feel like though, so it’s ok to not be perfect!
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Thanks for the beauty tip! I’ll look into it. Thanks, also for the vote of confidence. I do forgive my body. I don’t mind a different kind of beauty, I just can’t wait until that new, muted beauty can shine from the inside out. 🙂
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It’s not vanity to wish for your strong, healthy body. Your body and soul are you. Please cherish how all of you is courageously adapting and compensating and striving to be better.
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I do cherish it, Momma, thank you! I especially cherish how much stronger I am now than four months ago!
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This illness can bash and bruise our self-esteem and confidence. God knows it has done for me, I was always quite confident, now I’m not so much. Since getting ill I’ve had acne too, and as I’m not a teenager anymore it embarrassed me. Luckily I’ve got a prescription cream that helps but it’s not just on my face, it’s on my chest and back and I go through a lot of the cream. I’ve also lost all muscle, so I feel flabby and wish I could tone up, I’m quite thin but I’m unhealthy thin not fit and toned thin. I don’t think caring about our appearance and wanting to look nice is a negative thing, it’s a good thing that we still do care, and ME hasn’t made us loose all hope and stop making an effort with our appearance. Of course improved health is the main thing, but it’s only natural to wish we could look healthy as well as feel it.
It’s interesting that you have gastroparesis, I’ve noticed a lot of ME and POTS sufferers saying they have it, do you think there is a link?
I hope you have had a good weekend so far E.M!
xx Hayley-Eszti
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It is a good thing that we still wish to feel pretty and I hadn’t thought about the fact that, without hope, I really may not give a shit, so it’s a healthy sign! I just want to come to a sort of Zen place where the outside isn’t as important to me as it used to be. Having online friends helps this because you only know me through writing – I’m bodyless!
As far as gastroparesis goes, I thought maybe it started because I don’t move much anymore, but I didn’t move for a year before it started, so I don’t know!
Thanks for stopping by, H-E! X
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I think I commented when I was partially awake and brain-fogged before … I really should avoid that. I only get half the sense of the post I’m commenting on. Anyway, I always had self-esteem issues around my appearance, and being sick has only made them worse. I also used to look much younger than my age (it was the only thing I felt good about). Now I feel 80. I do get out, but mostly I go to doctor’s appointments, acupuncture, and physical therapy. I was an exerciser, and I can’t exercise anymore, except for PT and rehab-level stuff, and that took me several years to work up to. I gained back some of my hard-won (with hypothyroidism) weight loss. As for my skin, the allergic contact dermatitis, rosacea, chronic urticaria, and now a new autoimmune skin disease have made it a nightmare. I have had blepharitis too, and I used the same compresses and preservative-free drops as you, and a scrub called “Eye Scrub” by Novartis (creative name, I know). They helped.
I don’t think it’s bad to mourn the loss of confidence in your appearance–it is just another loss that comes with illness, like loss of function, loss of the ability to travel, go out freely without planning, etc.
Your writing is very evocative–now I have an image of you hoisting kegs of beer and zipping through a restaurant carrying five trays–a petite woman with everyone wondering “how does she lift all that?” I hope you get some of the strength back.
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I agree- it’s not “bad” to mourn the loss of feeling attractive, but I feel like I’m being stripped bare so I can accept myself without all the things I once thought were important. It’ll be a really good lesson to learn in the long run.
Thank you for the nice comment. I did feel like a petit powerhouse! I hope your strength continues to grow, also. X
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I have been thinking about writing about this! I never realized the privilege of being a cute girl, always with makeup semi-done and hair at least groomed. I was certainly always showered!
I am always nice to strangers, so I just thought everyone else was always extra nice too! It was like Jackie’s lala world where everyone always held doors, apologized if they so much stepped in your path, complimented you on all sorts of tribial things, offered to do things for others for no reason, smiles were always returned, people randomly wanted to know my story… I knew some of it was because of my age, gender, and appearance, but I didn’t know how much!!
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I’ve found things change the minute you have to park in the disabled spot. And blondes might actually have more fun. 🙂
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I LOVE this post and its honesty. I became ill at 26 and am now 46, so obviously my outside has changed hugely and, like you say, even if I were cured overnight my 26 yr old self is gone forever. I’ve done some modelling, and was always judged on my looks. Of course now I’m invisible, because I’m middle aged so I don’t have to worry about that so much 😉
When I was most sick I weighed under 6 stones (84lbs) and now I’m much better I weigh 8½ stones (119 lbs) – I’m 5ft 2″. You WILL be better than you are now and don’t worry, the muscles do bulk back up and your bones do get stronger.
I’ve found the experience of my outside changing with age and ill health absolutely liberating if I’m honest. Now my outside matches my inside: inside is content in nature, reading a book when I’m able, taking pictures, just relaxed and chilling; outside happy with no make-up, wearing dirty jeans and wellies (I do wish spellcheck would stop changing that to willies, cos one day I’m not going to notice and change it lol!) with wig scraped back in a ponytail. I’m free to not have to impress anyone and it’s joyful! I wish that for you x
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What a wonderful message and SO TRUE. Maybe that is the bigger lesson for me- I’ve always been happiest in nature, with a book, relaxed… but I became someone who was a very social (my phone likes to change that to “suicidal”- doh!) city-girl.
Recently I learned about the different personality types. I am an INFJ – “I” for introvert, which I just couldn’t wrap my head around. But I’m an extrovert! The more I read, the more I know this isn’t true, I was just *told* I was extroverted and bought into it. So, it’ll be good to strip off all the outside trappings and have, like you said, the outside match the inside.
Thanks for the encouragement. X
Btw, I think you got sent the unfinished post. I hadn’t added the photo from the eye appointment. 🙂
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Regarding the skin stuff, let me guess–rosacea? When you said Finacea I just knew. I have it also. It is very common in histamine-challenged people. Btw, if you take a submicrobial dose of antibiotics (like 20-40 mg of doxycycline), supposedly it doesn’t screw with the gut flora. But if the topicals are enough, I would just stick with those. Did she want to give you propanolol or something? Was that the blood pressure drug?
I used to go on this rosacea forum (link below) a lot. There are some VERY questionable treatments people try, but there is also good info. I learned about low-histamine food plans there (well, I used to think I was low-histamine, LOL). Anyway, if you need it: http://www.rosaceagroup.org/The_Rosacea_Forum/
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I love the honesty of this post. Dealing with chronic illness has had a huge effect on my self esteem, not only for my physical limitations, but also my physical appearance. I’ve lost a lot of hair, I lost a lot of weight, now have gained a lot, even though my diet has not changed. I was always happy with my appearance before getting sick, because i worked hard to keep in shape, and i was proud of that. But now appearance is something I struggle with. I think you did a great job of capturing the struggle in this post.
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Lindsay, thank you so much for your comment. It helps me to know others have struggled with this because I read so many “invisible illness” posts and I KNOW it’s invisible to people who don’t know me, but it’s certainly not invisible to me or those closest to me.
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Good for you for doing things to take care of yourself. I know the feeling of not caring how I look because I don’t see people but I have learned it is important to look my best for myself. It gives me a better perspective on everything else if I feel like I look good enough to face the world.
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Thanks for the comment, Stephanie! That made me think… maybe I should try to get dressed more, bathe more, even put on make up! I haven’t put on a lick in 20 months… but maybe making myself feel good on the outside would help me feel better on the inside… a little reverse therapy! 🙂
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I know it’s hard but thank you for sharing.
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Thank you for reading!
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