Someone asked me in PM what I tell people who "freely give unasked for advice" on my health. Well, I can tell you what I need to say. If this helps you, feel free to print/ use it.
Written for friends and/or family with loved ones who suffer from FM, CFS, and/or Chronic Pain and other disabling diseases.
Feel free to print and share this just keep article in it's entirety and give author credit.
What I want you to know about my health before you give me any advice; an open letter.
I look normal (gorgeous actually) but there is something wrong with me, possibly on a DNA level, but specifically a unique peripheral neurovascular pathology consistently present in the skin and in my blood vessels, so I feel temperatures and touch amplified. Once I thought that I got frostbite scraping the car windows and when I came inside and checked the weather it was -2C outside. Humid, with winds. But +2 or -2C. I forget.
I forget things from brain fog because of fibromyalgia... But not always. When my mind is clear I am extremely intelligent. Last night my husband watched me struggle to count... to 43. My mental abilities come and flee without warning or reason.
When my mind works, I use it! I'm writing a book right now. I started my Real Reviews Facebook page to "do something," productive when I could not "work," and for over a year I have written posts to help women with beauty concerns. My body may not work well but I will use my mind for as long as it lasts.
Please don't give me advice. Trust me, I have read all the latest research, actual peer reviewed research- research the public does not have access to but universities do- on my condition. I know what they are teaching in Med School NOW. I have used the last year and a half in bed wisely. I am certain I have read more than you.
I know how and why my drugs work, you likely know nothing factual about my drugs so please keep your thoughts to yourself; I do not take drugs mindlessly or without grave thought. Do not add to my guilt or stress concerning them.
Dear Granola Crunchers: I used to do yoga, meditate, ate completely organic and homemade food, used no cleaning chemicals in my house, did not smoke or drink... essentially the perfect clean life from birth until 30 years old. Negative thinking did not cause this disease, and positive thinking is not going to fix it. I am pretty positive, considering. Please don't suggest I do the above bullshit, it did not prevent the diseases and it is not going to cure them! I am glad it has helped you for 6 weeks... I lived that yoga lifestyle for 12 years.
That being said mindfulness and a positive attitude definitely go a long way, and I intentionally focus on those things. But I do not expect anything to cure me.
Please don't ask me if I've tried vitamins, supplements, or the worst woo ever: essential oils. As a licensed cosmetologist I can tell you that all they will do is heat or cool skin depending on the oil and both are damaging to the skin, even though you can't see it on the top it damages the dermal layer. No, it is not going to cure my fibromyalgia. So stop.
Don't suggest any exercise. You do not know my medical history, the complications or the consequences of anything that I choose to do. I have Chronic Fatique Syndrome and the best way to treat that is to not exercise.
I have FM and the best way to treat that is gentle exercise, specifically swimming and stretching. You see the dilemma here?
I have Delayed Pressure Urticaria and doing anything (even leaving the house) can result in me breaking out, which is extremely dangerous. I have Heat and Vibration Urticarias so sweating, summer, and gym equipment are all dangerous to me.
Leave advice to my specialists. I am pretty sure they have more training than your google search or your "mothers cousins sisters mother-in-laws friend who cured her X." Stop.
I am using Siri to dictate this because if I was to type on my iPhone I would have intensive sharp pains in my fingertips within 20 minutes.
I cannot spend my free time playing on Facebook because I can't look down at the iPhone, holding it creates too much stress in the muscles starting at my elbow and going up into my neck. This can cause my shoulder and back and neck to seize up so bad that I can have a migraine that puts me in bed for three days.
So this is why you no longer see me on Facebook except for working (from a laptop) and the odd peek in. This is why you're not seeing me and yes I do miss conversations with you. I do love and appreciate reading your messages (abide the above guidelines) and texts even if my replies are short or late.
I have not driven since last summer. Pressure required to push the pedal is too painful. I cannot wear a seat belt properly because of the DPU. I am in a wheelchair because I cannot stand to "pop into the grocery store just for one item." I cannot stand more than five or 10 minutes without pains so bad it causes a limp and my demeanor/mood changes because of the intensity of the pain. That is fun.
The pain that I suffer daily would send most people into the ER. I do not know what it is like to not be in pain. I cannot remember the last time I was not in pain. Literally. For over 3 years. Just stop and think about that. You can not even imagine. It is literally impossible for you to imagine.
If I do not get at least 12 hours sleep I wake up feeling like I have the flu. That is chronic fatigue syndrome. Please don't tell me how "nice it is to be able to sleep in until 10:30 AM," when all I want to do is have a normal work/school life back. I have to be in bed at 10 PM or I suffer the next day.
I have to bath before I go to bed so I can fall sleep as the hot water soothes for my sore muscles. I do not have much energy (CFS) so I do everything very slowly, so it takes me about an hour and a half to do that, bath and put face creams on. So I have to get ready for bed at 8:30 PM. I used to do a full face of makeup in 20 minutes.
I have a wheelchair because I cannot walk because of the FM, but now I do not have the strength to push it myself because the CFS. Ironic. If I could push it putting that kind of pressure on my hands makes my DPU flair. So I am stuck in my home.
Do not tell you this for you to feel sorry for me. I tell you this so you don't waste your life and so you appreciate your body, and so you can understand what a day is like for me.
I had to drop out of university after three years of being a Dean's list straight A honour student. I opened a salon when I was 21 years old and had it for seven years before I married my husband and moved cross the country and enrolled in UNB.
We spent our late 20s travelling all over Europe vacationing. I am a yoga instructor and used to run daily. I was very fit before these diseases hit me. I lived a very active life. I flew and traveled often. I am intelligent, creative and hard working. I had the success record of a promising future; a future my health robbed. I am doing my best to adapt.
I was (am) a perfectionist. My house was always flawlessly clean and perfectly organized. I have literally caused myself to sleep for 6 months because I over did it trying to socialize over Christmas and unpack our new home when we move to Ontario; it is still not unpacked and July will be two years we have been here. I didn't know what illnesses I had then, how they would disable me so quickly. My hard work and stubbornness revealed the disease faster.
My social life consists of leaving the house for doctors appointments at a rate of about once a week seeing specialists another break for a month or two (waiting to see someone again).
All this time my husband has been my caregiver. It has been a huge drain in his energy and I can't imagine what it has put him through to see a loved one suffer. We have "dates" out to eat when I have an odd "good" day.
I am too exhausted to explain my condition to everyone individually. I know the facts, I do not need to hear myself talk. I would love to visit, just not to discuss my medical history unless I bring it up. I appreciate listening, but not advice.
I still have a sense of humour. I hope you caught the two jests.
By Celeste Eden