Letting Go of My Fears and Finding the Silver Lining in Chronic IllnessOn November 8, 2017 by fluffmonger
I recently spent a few days near Asheville, NC, for a much-needed change of scenery. This past year has been a difficult one for me due to some changes in my health, so it was therapeutic to get out of the house and spend some time in the mountains. I look forward to when I can go out on trails and enjoy the restorative effects of reconnecting with nature. While standing at the top of Cedar Rock Mountain and overlooking the vast expanse rolling hills, I realized I was ready to let go of one of my fears.
Those of you who read my blog regularly may know that I’ve had some issues with health problems. I’ve had debilitating migraines for over 20 years, and in 2012, I left my job as a public school teacher after being diagnosed with Lupus and mold illness. Long story short, I was experiencing daily migraines in addition to a mysterious illness that felt like a never-ending stomach bug. By the time I resigned, I had run the gamut of pharmaceutical options for treating my symptoms, so I started looking into natural ways to improve my health. I switched to a whole food, organic diet and started preparing all of my meals at home, I replaced my personal and household products with natural, fragrance free alternatives, and I sought alternative medicine. My health improved enough for me to take up a hobby, and that’s how I got into sewing.
When people ask me about myself, that’s typically where I end the story. There’s more to it, but until now, I’ve been too embarrassed to talk about it. While my health did improve after leaving my job, I’ve been unable to lead a “normal” life. I still experience frequent migraines and other symptoms that go along with having an auto-immune disease, but there’s one symptom that keeps me confined to my house the majority of the time—hypersensitivity.
For those of you who experience, or know someone who experiences migraines, you know that sensitivity to smells, lights, and sounds commonly occur with migraine headaches. Over the years, I’ve had hundreds of migraines that lasted for days or weeks. Somewhere along the way, the hypersensitivity that occurred with my headaches started persisting even when I didn’t have a headache. Over time, my sensitivities, especially to smells, intensified, and I began reacting to more and more things. I’ve developed sensitivity to fragrances, certain chemicals, bright or flashing lights, and an embarrassingly long list of foods.
My hypersensitivity has impacted how I live my life in every way. I seldom leave my house other than to walk at the park or go to the doctor. All it takes is a few whiffs of perfume, laundry detergent, air freshener, cigarette smoke, paint fumes, etc. for me to be knocked out with a migraine for a few days. When I’m exposed to irritating aerosols, I generally experience dizziness, heart palpitations, difficulty concentrating, and feel like the energy has been drained from my body. If I can’t get away from something that’s bothering me, I’ll eventually get to where my speech is jumbled and I have coordination issues.
It’s incredibly difficult to avoid fragrances and other aerosols that trigger migraines for me, so I typically won’t go anywhere other than an uncrowded, outdoor park unless it’s absolutely necessary. If there’s something I really want to do, like meet a friend, sell at a craft fair, take a class, or even visit a family member’s house, I try to plan my week so I can have a few days to recuperate if I get ill from the outing. I’m incredibly thankful for the handful of my friends and family members who have gone completely fragrance free and only use green cleaning products in their home so I can spend time with them without discomfort.
For a long time, I thought I was crazy—and many people over the years have kindly made that assertion for me—but when a number of new neurological symptoms popped up, I started thinking that perhaps there was more to it.
A couple of years ago, I developed tremors in my hands that would come and go. They would generally last for a few days or weeks, during which I couldn’t work, and I could only find mild comfort by sitting or lying on my hands to minimize the jerking. Random numbness and weakness also appeared on areas of my head, eyelids, and throat that caused blurry vision and difficulty swallowing at times. My neurologist couldn’t pinpoint what was causing my symptoms, so I started seeing an integrative physician who diagnosed me with Lyme Disease and a few co-infections of Lyme. While I’ve had tick bites that resulted in a rash before, I initially didn’t think much of the diagnosis. I’ve been given a number of diagnoses over the years—Lupus/Sjogren’s/Undifferentiated Connective Tissue Disease, Cerebellar Ectopia, Hashimoto’s Thyroiditis, Polycystic Ovarian Syndrome, Interstitial Cystitis, OCD, depression, and anxiety—none of which ever led to a treatment plan that brought improvement. I didn’t want to start rounds of antibiotics and antivirals because I don’t do well with pharmaceuticals due to my sensitivities (the last time I tried a new medication, I ended up in the hospital for a week with rhabdomyolysis). I also didn’t want to have to tell people I have Lyme Disease. There’s a lot of stigma that comes with the diagnosis—primarily, people think you’re crazy—so I took the news with a grain of salt and went on my way. It wasn’t until I started having numbness and weakness on a daily basis, incessant ice pick stabbing pains in my head, and my neck became so stiff I had to turn my whole body to look to my side that I started to wonder if my symptoms might be Lyme related.
I made one last trip to my neurologist to rule out any other possibilities. He ran more tests, and determined I had “something like viral meningitis” that should get better in a week. When it didn’t improve, he offered steroids. At that point, I talked with my integrative doctor who said, “Yeah, those can all be symptoms of Lyme Disease.”
After finally accepting the diagnosis, I opted to go with an alternative treatment for Lyme, which I started in September. I’ve seen a few improvements with some of the meningitis-like symptoms, not yet with the migraines or hypersensitivity, but I’ve been able to return to working from home at least a few days a week.
If there’s one thing I can say living with chronic illness has given me, it’s direction in life. If it weren’t for my experience with illness and hypersensitivity, I wouldn’t have started a home-based business selling organic plush toys. I loved teaching when I was a public school teacher, but I always felt like something was missing. After connecting with other people suffering from chronic illness and hypersensitivity through my business, I’ve become aware of the demand for information on how to work with natural sewing materials. There are so many people who, like me, have had to abandon their old diet, the products they use, their job, their hobbies, and even quality time with friends and family just to be able to function. Because using natural products is a necessity for them, they’re eager to find resources on how to work with those types of materials. Since getting back into sewing again, I feel drawn to combine my passions for making organic plush toys and teaching to start a new chapter with my business creating sewing tutorials.
I’ve spent the majority of my adult life ashamed of my chronic illness and have been reluctant to talk about it in detail on my blog for fear of judgment. I’ve finally realized the benefits of being completely open about my journey with chronic illness and connecting with people who relate to my experience is what will allow me to do what I really feel like I’m meant to with my life.
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Thank you for being brave and sharing your journey. I can very much relate!!! And it makes me so sad that shame has to be a part of such a difficult process coping with a chronic, misunderstood illness or illnesses. I’m glad you are finding some light though as well and what you are doing is a very wonderful thing!!!!
Lyme Disease is real = even in Australia (where the Authorities still deny is exists). No need to be ashamed just be thankful that it has been recognised and can be dealt with. I feel for all those who ‘know’ that have it but who can’t convince the powers that be. It must be so frustrating for them. Your words are sure to encourage everyone who takes the time to read and understand. Thank you for sharing your struggles… I had wondered if there was more to this ‘bit of a funk’ you said you had been in for a while and am glad you have turned a corner and are well enough to get back to what you love and are so skilled at doing. <3
Thank you so much, Janette ❤️. I do hope that Lyme Disease awareness improves. It’s really sad how many people are suffering and can’t get a diagnosis or take years to get one.
Thank you so much for sharing this! I want to reach out and hug you for all of what you have been through. Most people do not understand your daily struggles and pain! My son is going through similar unexplained illness and he gets so frustrated because he’s sick of medications that don’t work and doctors passing him off to just another “expensive” doctor. He’s going the all organic, low acid/alcaline diet, but he’s 5’ 10” and maybe 110 lbs fully clothed with shoes. Please know there are people out there that care! You do such marvelous work and I’m proud to have been able to know you through my daughter! Just don’t give up hope!
Thank you so much for your kind words of support, Robyn! I am so so sorry to hear that your son has been having a rough time. I know what he is going through is extremely frustrating. I hope that he is able to find a treatment plan that works for him. I’m so glad that I’ve been able to connect with you online through Cindy as well! Jon, my husband, and I think so much of her :).
I to have had health problems with terrible pain in my lower body. the Dr. picked me with a pin and I didn’t feel it until he got to just below my shoulder blade and at the same time the nerves were damaged by this “virus”.. He tested me for MS but it was something else under the umbrella of MS and I spent 9 years curled up in a ball in pain. I did 3 year of physio to get back on my feet (paid for by me) and now I am doing better but I believe I got a miracle as there is no cure for what I had. So I encourage you to pray and have faith God will help you improve even more and get better!
I was not able to sew for years but now I am back to sewing, driving and soon I take up painting again. One step at a time and pace yourself.
I can imagine that must have been a difficult nine years for you, but I’m glad you hear you are doing better now. That’s great that you have returned to sewing and other activities you enjoy! Thank you for your words of encouragement!
Hello from down under in New Zealand. I had migraines for many years, after spinal surgery, with a Myleogram that involved oily dye before a special X-Ray. They would start, early a.m. and vomiting followed, At first just a day., but over the years, they lasted longer. Finally a long spell in hospital, an understanding doctor, then some acupuncture, and now after many years I am headache free. But flickering sunshine, fresh fish or meat, petrol, or strong soap powder are all things I try to avoid. Writing today , you tell us how life is for you, and those who do not understand or have no sense of caring or what is right in the world, should keep their opinions quiet . I hope you continue to be in better health, and each day can enjoy all that nature gives us, sunshine, rainbows, a blue sky, or a frosty morning. Fond greetings from NZ.
Jean, that’s so wonderful that you are living headache free now! It’s encouraging for those of us living with chronic illness to hear success stories! Thank you so much for your kind words!
You are a trooper and a treasure! Keep up the good fight. And thank you for your precious patterns- you’re very talented, too. I’m working on the kitty right now. :-). Rest when you must, work when you can.
Thank you so much for your kind words, Suzanne! I hope you enjoyed the cat pattern :).
Lyme disease is very real and debilitating and anyone who doesn’t believe it is only fooling himself. In 1988 I worked for a chiropractor who did blood tests on me that showed Lyme Disease. He prescribed a naturopathic remedy (I don’t remember the name). It helped to some degree but my hypersensitivity to all things, especially sound and smell, has never stopped. Like you, I am also hypersensitive to perfume, laundry detergent, air freshener, cigarette smoke, paint fumes, boom boxes, loud noise and so much more, I live on five wooded acres, which helps, and only go to town when I have to. I had to continue working and a few years was later I was diagnosed with fibromyalgia, which I was told is pain in the muscles, tendons and ligaments because they don’t relax. It feels like you have the flu all of the time I hurt all the time. I wake up feeling like I didn’t sleep and had worked all night long. Just sweeping the floor or even sitting at the sewing machine caused extreme flareups. There is no know cause or treatment but I recently read that Lyme disease can cause it. Thank God I don’t get migraines (my mother had them so I understand your pain) but I have had headaches all my life, which are bad enough. I finally retired in 2011 and not having to deal with the stress of people, perfumes and sitting at the computer all day has helped a lot. Stress is a huge factor in creating pain.
It is heart warming to see you take charge of your life and continue to help yourself and family (and so many others) with your wonderful gift of sewing! At work I saw so many people who just gave up because they couldn’t deal with the pain. Some of them were 20 years younger than me and were on disability. I haven’t made any of your patterns yet but couldn’t resist downloading for future use. I’m allergic to wool so won’t be using it. You are really gifted and I thank your for sharing with the world.
Thank you for sharing your story and for your kind words, Doreen. I’m glad you’ve been able to find some relief by retiring and living where you do. Hope you enjoy the patterns if you decide to try them out!
Thank you for sharing your story. Lyme Disease is very real and awful. Several members of my family have been diagnosed with the disease and are using alternative medicine to heal. My sister-in-law, niece and nephew have the Lyme under control and are dealing with the co-infections. A second nephew and his wife have also been diagnosed with the disease and are undergoing treatment.
On another note, which is how I came across your website, your patterns are adorable and my grandchildren are going to love the stuffed animals once I get them made. Thank you for sharing them.
I’m so sorry to hear so many of your family members have been affected by Lyme disease, Esther. I hope their treatments are successful.
I’m so happy you like the patterns! I hope you enjoy them!
I’m a little late on this post but I’m a fairly new follower and complete Fan Girl. Thank you for being brave enough to talk about what you go through. I think it’s important that the world know what we go through with chronic illnesses. The stigma that’s pinned on us is unfair. We have enough to battle without having to deal with the harsh judgement of others and feeling guilty for something we have no control over!
I wanted to ask how you found your Integrative Physician. Along with a spinal cord injury caused during a surgery 5 years ago, I’m also battling through what I call “episodes” of extreme tiredness and sudden exhaustion. I’ve seen so many doctors and specialists with no answers. So many of the medications I have to take to help just survive through the day end up making me sick. It’s like being caught in a Medical Catch 22. Maybe a physician with a different perspective on things could help out a bit. Thanks for all you do, sharing your talent and your brave spirit.
I’m so sorry to hear about your health struggles, Rachel. I found my integrative physician through word of mouth. Thankfully, integrative doctors are becoming a bit more common. If you happen to live in NC, I’ll be glad to give you the info for the integrative office I went to.
I am inspired by you! You have a wonderful gift of creativity and a heartfelt caring that comes across in your work. Thanks for sharing. I think your wonderful.
Aww, thank you so much, Tracey! I really appreciate your kind words! ❤️
God bless you! You have found a way to bless others with your wonderful, creative patterns and plush art even in your suffering and (dare I say) found a way to redeem some of that suffering. I live with chronic illness as well and understand the struggle to find answers. May God help you! Many of your struggles sound so familiar to my own. My own quest for answers led me to discover something called MCAS (Mast Cell Activation Syndrome). I hope you get to a healthy place and thanks for sharing you amazing creativity with the world!
Hi, Rose! I apologize for the late reply. Thank you for your sweet message! I’m so sorry to hear you have been struggling with your health as well. I hope you are able to get to a healthy place too!
Thank you for sharing your health story. It is very hard to talk about your disease because people do judge. By sharing your story, you will have probably helped someone else who is experiencing ill health & cannot find out why.
I too have a number of ill health problems & it took 11 years to be diagnosed because the GP’s don’t believe you! I am thankful that I can go out & not worry about smells affecting me, but live with 24/7 pain, cannot eat certain foods, headaches everyday etc.
I have discovered that there are a lot of sick people with an autoimmune diseases in the world! Keep on sewing & designing your lovely animals. Big hugs
Thank you so much for your kind message, Susan! It’s wonderful to meet so many thoughtful people like you who understand. Big hugs to you as well!
I guess, only nature and solitude can help you to get rid of fears. You must understand, what you were born for and what you are living for.
I’m so glad I stumbled upon your site! After reading your story, I’m surprised to see I’ve had a lot of the same issues as you. I too have learned a whole food diet helps me tremendously but I still struggle with what else causes my hyper sensitivity. Thank you for being open about your health discoveries!
Hi, Dawn! I’m so sorry to hear you deal with sensitivities as well. I’m glad changing your diet has helped!