What is autoimmune disease to me?

15 comments

What is autoimmune disease? The medical definition is as follows; An illness that occurs when the body tissues are attacked by its own immune system. 

However, I have my own thoughts on what autoimmune disease means to me.

For me it’s not knowing what comes next. My good days are a normal person’s worst day. It’s the daily renewing of my mind to fight against depression, aggravation, and anger. It’s a daily awareness of how I feel, things I do, and how much I do.  It’s a daily fight for my life. 

 

Chronic illness is more than just a disease that makes my body hurt and an illness that won’t ever go away. It’s mentally draining, it attacks me to my core. Some of my biggest fears in life have had to be confronted in order to survive this illness. There isn’t room for wasting precious energy on things that I can’t control.

Facing a chronic illness is not easy, it’s scary and full of unknowns and unanswered questions. It can be lonely at times, even if you do have a full circle of supporters. I often see that other people say that no one understands them, and that is right! No one can possibly understand what you are going through except for yourself. It is your journey. However, we can’t get caught up in how much others do or do not understand what we are going through when we really can’t fully understand it ourselves. 

If you are a caretaker of someone with Autoimmune disease, the biggest gift you can give to your loved one is to say I believe you and listen. Understand that this illness is beyond what you can see, physically and psychologically. 

If you are one of my fellow spoonies, find a support system of others that you can gather information from and that can relate. If you need a support buddy, message me!

What is autoimmune disease to you? 

 

 

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15 comments on “What is autoimmune disease to me?”

  1. I have fibromyalgia. I have managed this disease by changing my diet. I went to a naturopath and she said it could be food making me sick. I found out bread (wheat), spices, aspertame, sucralose and chocolate (any candy) were the worst offenders. Then I read a doctor said he thought the ingredients in cold pills made fibro better. I took some, and yes, this really helped me. I’ve been taking them daily for 15 years. It took about a month of changing my diet to feel the good effects. I had to give up a lot of foods, but it has been worth it.

    Later, I found out about histamines. I knew that plants made me sick, but I didn’t know histamines are in all foods. I started a low-histamine diet (google it) and got a lot better. Also, I started taking a cold pill with an antihistamine: Benylin Total. It has made me feel the best I’ve ever felt. I still get symptoms, but they are small compared with when I was first sick.

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    1. Thankyou I appreciate the time that you took out to share this information 🙂 Unfortunately I have over ten autoimmune diseases that are very rare, and complex, is attacking my major organs. 😦 I absolutely agree that gluten, bread, simple sugars, and chocolate are triggers. I can’t eat those things because I have major intestinal/digestive problems. But wow, that would definitely be amazing if I could turn this thing around with diet. A dream come true. I am so so glad that you were able to hold your fibromyalgia back and get some relief from changing things up. Fibro is extremely painful and if anyone is reading this, listen to her, this is good advice about diet changes.

      Liked by 1 person

      1. Sounds like you are much sicker than I am. I’m sorry, and I hope you can find some relief. My sister also has an autoimmune disease – chronic fatigue.

        My mother has pernicious anemia. I looked it up the other day and it is an autoimmune disease! I wondered where my sister and I got our diseases and now I know. We both have to take vitamin B12 in tablets. My mom gets a shot twice a month.

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        1. Yes I am very sick. I have mixed connective tissue disease, Lupus, Nuerocardiogenic syncope, Autonomic dysfunction, esophageal dysfunction, arthritis, spondololithisis, sjogens, Raynauds, beginnings of Lupus nuphritis and blockages in my heart, fibromyalgia, chronic fatigue, mytosis, anemia. I forgot some of my autoimmune diseases but you get the picture. Basically Mixed Connective tissue disease and Lupus is causing my body to kill me.

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  2. You have so eloquently and accurately shared the frustrations of living with chronic illness. Being diagnosed with chronic fatigue over 15 years ago, it was a very long and lonely journey to wellness (I have been successfully managing it for several years now).

    One of the greatest gifts in this experience has been my strengthened and deepened spirituality. For when no one could identify what was happening to me and my body, and I continued to get sicker and sicker, my only relief was in prayer and God’s guidance. I have believed my entire life that “With God all things are possible,” and subsequently as you also state, “I can do all things through Christ who strengthens me.”

    Having an invisible illness is difficult for others to understand, and your words of advice to caregivers and the concerned are so apropos. My heart feels for you, for what you have been through most of your life yet you are a shining example of miracles. Offering your experience, understanding, encouragement and wisdom through your blog is another miraculous gift to the world. Warm wishes of healing to you.

    Liked by 1 person

    1. Thankyou so much! This really made my day today. 🙂 I am so happy to hear you have been able to manage your chronic fatigue syndrome for over 15 years! Wow, thats amazing! What are your secrets? Chronic Fatigue is a small part of my autoimmune illnesses but even still that small part feels like a mountain.

      Fighting something that you can’t just make better all by yourself sure puts a new perspective on things. I had to realize Jesus is all that I have, he is the only hope I have if I am going to get through this. I had to find my purpose and a big part of that was finding what he wanted for me. I never thought I would be sharing anything about my life but truthfully sharing with others has been a blessing for me.

      Liked by 2 people

      1. Happy to have given you a smile.

        I have no “secrets” really. After a year of frustration and western medical doctors who could not tell me what was wrong, I traveled 125 miles to an old-time naturopath who correctly diagnosed me. When he died, I began treating at their sister clinic with a DO who has slowly helped me regain life (through herbs and natural remedies as my body was too toxic and rejected pharmaceuticals; diet change-no caffeine, no white sugar or flour; and lifestyle changes-managing stress, thoughts-beginning every day with gratitude and finding the gift in even the bleakest situations; setting boundaries to protect my energy levels; reduced work and activity schedule; improving sleep-very hard and tedious to do; listening to my body).

        After a few years, I plateaued at 80% recovery. I then began yoga and weekly acupuncture treatments along with hand drumming which has brought be back I’d say to 100% where I can travel now and participate in more activities (always mindful of my limits). Diligence is key. As for so many others with CFS, when I began to feel better I would take on too much then slide back. It is a very delicate balance to learn but I think I’ve gotten a good handle on it.

        I realize CFS isn’t the only thing you are dealing with but hope some of this will be helpful to you as well. FYI, if you are interested, my post this coming Sunday (1/21/18, https://wrightingmylife.com) will offer more information on the health benefits of hand drumming. In the meantime, best wishes to you on your journey toward wellness.

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  3. What a great post! I love what you said about people not being able to understand, but we can’t get caught up in how much they do or don’t understand. I couldn’t agree more. Holding onto that can keep us from moving forward. Knowing that our loved ones believe us and are there for us is a real blessing.

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