One of the many health sites I follow on Facebook shared this link today and it is excellent. So often we need the help of others to capture our own voices when going through chronic illness.
What We Wish Others Knew
As (most) of us know Fibromyalgia is a symptom not a disease itself. Here is a really intelligent list of some of the causes (link in title). One not listed here is of course Lyme which causes Fibromylgia-like pain, especially while herxing.
Do you ever get frustrated when people think that you should be cured of Lyme with just a few weeks of antibiotics? Here is a great Picture Post to share. Oh, and link to an interesting website as well
You all (Lymies) know how it feels….your body is heavy……it feels like there is lead in your veins……like the earth’s gravity field is pulling twice as strongly on you than the rest of the planet’s population. This might be your reality every day, or like me these days are blessedly getting fewer and fewer. Whether you are the former or the latter Lyme fatigue knocks you down and takes you out. Sometimes it can take hours to get out of bed, going to the bathroom is a great inconvenience, and your brain is telling your limbs to move but they don’t always obey.
What is hardest is when the people in your life can’t understand; why you “look okay”, or why you were fine yesterday but crash today. It breaks my heart when I hear a fellow sufferer say they have been called lazy, or have Munchhausen’s (want attention), or they “don’t want to get better”. I know people mean well most of the time, but this is devastating and cruel to someone who is suffering from Lyme because it is not their fault. My mother who is a cancer survivor equates the worst days of Lyme fatigue as being very similar to going through Chemo therapy, it can knock you down that hard. Don’t forget your body is FIGHTING a bacteria that has invaded every system in your body! I have personally had to forgive myself because I thought for a long time I was being lazy because I didn’t even have the will to do things, turns out it was the disease. Because as I am finally turning a corner almost one year into treatment I am NOT lazy, because I don’t even mind doing housework, when I feel well enough to do it.
If you know a Lyme sufferer be kind. They are going through more than you may be able to understand. Know that their systems are invaded by a hostel bacteria, and these little corkscrew shaped bugs have burrowed deeply into their muscles, their brains, their joints, their blood……You would be tired too.
Thank you Lyme Disease UK for sharing: https://www.facebook.com/LymeDiseaseUK?hc_location=stream
So I guess I would call this an Almond Green Smoothie. Safe for Lymies, Leaky Gut Diet, Anti-Candida Diet, Dairy-Free, Sugar-Free, Soy-Free, Fruit-Free, Gluten-Free, Starch-Free.
And yes, it still tastes good 🙂
2 Cups Unsweetened Almond Milk (I used Almond Breeze brand, use refrigerated if you can rather than shelf stable, in that it has fewer additives. Of course homemade is always best)
2 1/2 Cups cut up Frozen Zucchini (this is something I keep in my freezer all year long. it is an AMAZING way to thicken smoothies without changing or adding to your flavors, and of course better for you then adding thickeners, and better than ice because it doesn’t water it down).
1 Tablespoon of your favorite Green Super Food Powder (raw is best, Food Matters just released their own)
2 Tablespoons Almond Butter (I used some that I ground myself at the store, unsalted)
1 Teaspoon Almond Flavoring (burn off the alcohol first)
1/2 Teaspoon Cinnamon
2 Full droppers of Liquid Vanilla Flavored Stevia (or to taste) (vegetable glycerine based)
1 Tablespoon Maca Powder (any natural grocer should have this or some vitamin stores, it has a malty taste)
Throw it all in the blender!
Lyme Brain. If you are a Lyme sufferer whether it be chronic, acute or mild, you probably know what this is. It usually involves minor memory lapses, trouble reading and focusing, compromised word recollection, and dyslexia. These symptoms can also be very severe, thankfully I am in the category of the former, and getting much better.
Since the Lyme Spirochete and secondary infections like Bartonella can literally effect anything and everything in your entire body, it makes sense that it can wreak havoc on your brain. I think this aspect of the illness is harder for people to understand; You just end up feeling dumb when you can’t spell words you have known for years, or struggle with simple math problems, and since those around you can’t “see” the disease effecting your mind, it may be hard for the friends, family, and coworkers of Lyme sufferers to understand what is going on with you. Especially if you have yet to be diagnosed.
SO many now diagnosed Lyme sufferers have been told by doctors when complaining about their various symptoms “it is all in your head”, well thank you doctor, in your ignorance you are not completely wrong. How many of you have had doctors suggest anti-depressants or anti-anxiety meds before your diagnosis? It is sad.
Dr Martin Ross MD: “Cognitive dysfunction is a very common problem that often resolves once the Lyme germ and co-infections are under control. Cognitive impairments occur with memory and information processing.” “Cognitive symptoms of Lyme include: Confusion/difficulty thinking; Difficulty with concentration, reading, problem absorbing and new information; Word search /name block; Forgetfulness, poor short term memory, poor attention; Disorientation, getting lost, going to wrong places; Speech errors: wrong word, misspeaking; Mood swings, irritability, depression; Anxiety, panic attacks.”
So you are not crazy, you are not alone, and there is hope!
Here are some helpful links for general information and living with Lyme:
There are also links in some cases of ALS & MS in cases of those patients testing positive for Lyme. Here are some links for the ALS/MS Lyme connection: http://www.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one
A Big thank you to Lyme Disease UK: https://www.facebook.com/LymeDiseaseUK?hc_location=stream
For sharing this, The Lyme treatment “bible”:
So poignant and true. This is the feeling of anyone (may I say especially the young?) suffering from a chronic illness.
My thoughts: (on the link at the bottom)
So painful, and so true. Even though just literally in the last couple months I have started to get my head above water, to have more energy, to not feel like I am in a complete fog all the time….My body and I are still at war. I still struggle with energy, still struggle with terrible swelling and water retention, still digestive problems, and PAIN. But there is a small light. Now the hard part is feeling like a person who has awakened from a coma and has lost years of their life that they cannot get back. As my peers are mostly married, and even having their second babies, here I am 34 and single, and if I may be so bold, never even been on a date.
There is a piece of my life that should be there that isn’t, years that should have been lived and were simply lost. Where do I go from here as I look at complete wellness still being somewhere in the future…and it won’t be this year, maybe not even next year. I live day to day, because today I can manage, today I can pull through. Today I can give 100% to my job and leave nothing for myself. That is today, because tomorrow has been elusive for as long as I can remember.
Thank you Lymelight for sharing this: http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/