"She is just lazy and is taking advantage of _____________" ( this was said in reference to me supposedly taking advantage of my husband). This said by a person who knows that I have had Chronic Fatigue Syndrome for years but is convinced that I'm not really sick because I look healthy.
Ignorant comments like these and other equally ignorant ones are extremely frustrating and hurtful for those of us who deal with these auto-immune illnesses that drastically altered our lives and that of our family members who also suffer collateral damage from our illnesses also. We may suffer for years as we try to find answers to what exactly it is that is making us sick. The medical bills mount as we see specialists and try different medications and treatments along the path to diagnosis. When we finally do have a diagnosis, we again play the game of what medications might or might not work, if there are indeed any available for our particular auto-immune disease. For some of us, there are no medications that help and then it is a matter of having to try to find supplements, changes in diet and lifestyles, anything that will help us cope and deal with our illnesses.
My personal experience started with extreme fatigue, pain throughout my body, constant yeast infections and feeling like I was losing my mind because my brain was in a fog some days. I had chronic infection after infection, one on top of another. We tried all kinds of medications which would lead to other infections and it became a vicious cycle. This went on for two years. I went to a specialist that confirmed what my doctor had finally diagnosed me with but basically said there was nothing they could really do for me. So began my search for ways to treat my Chronic Fatigue Syndrome with supplements, diet, and a complete change in lifestyle.
When I was first diagnosed, there was not a lot of information out there on my disease and some of the medical insurance companies were actually dropping coverage on people who had this disease because a. they did not believe it was real or b. because they were afraid of the huge costs to find a diagnoses and because the "treatments" for it could potentially cost $10,000 or more to just get a workup and plan done that might or might not help. My doctor warned me about all this so we "tip toed" through trying to find something, anything that might help me to no avail.
I wanted to just give up. I was miserable and felt like I was letting my husband and kids down. I was no longer the same woman my hubby had married or the mother to my kids that I so desperately wanted to be. I had HUGE amounts of guilt (and at times still do). I finally realized that I was going to have to figure out a way to live with this and try to find some answers for myself. It was through lots and lots of research on my part, trial and error, and tons of money spent on different supplements and things that we finally found a few things that worked for me and my particular body chemistry.
Here are a few things that I have learned along the way. I am NOT the same woman I was before and will never be again. I had to let go of that and learn to cope with my new "normal". After taking the supplements and starting to feel a bit better I still have to pace myself. I may have a day when I have lots of energy and I push myself to get as much done as I can, but I do collapse and rest for about half an hour at time when I feel like I can't even move another muscle. I also realize that if I have a day when I do have lots of energy, they next day will most likely be a crash day for me when I will not be able to do much at all. Three days in a row of even moderate activity will wear me out to the point of bringing on a crash. Stress makes my illness flare up big time. I have Chronic Systemic Yeast Overgrowth as part of this and it will explode. My body will ache and I will get horrible tension headaches along with migraines. My brain goes into goes into foggy mode and I basically just have to shut down for awhile. If things are really bad, it can take me a very long time to recover from these crashes...sometimes months. During these times, I severely limit any and all outside commitments and try to avoid any stressful situations which will just make things all that much worse. Even though I may be exhausted, sleep eludes me or my sleep cycles are completely thrown off.
Let me give you some examples of what my life is like. I may go and run errands on a day when I have a decent amount of energy. By the time I get home, I am usually exhausted and the next day I become "lump girl". I don't move much and spend most of my day recovering for the day before. They next day I may have a bit more energy, but I still can't push myself so I only get one or two critical things done that day.
Here is another example. This past Friday I pushed myself big time. I made multiple loaves of banana bread, a loaf of sourdough bread, worked on some laundry and got some seeds potted up. I also made a nice dinner. By that afternoon, I was completely exhausted and so sore I could hardly move. I soaked in the hot tub trying to get my muscles to stop aching so I could sleep that night. As per usual, even though I was exhausted, I could not fall asleep until about 3 the next morning and even then, my sleep was very fitful because my muscles ached so bad. Saturday morning, after I got up found me with brain fog and limited energy. We had plans with family for that afternoon so I pushed through but by that evening I knew that the next day was going to be a major crash day. I again had a hard time sleeping due to pain but I did manage some. Sunday morning I was achy and managed to get our bed stripped down, the sheets washed and hung out on the line to dry. I then collapsed back into bed and had a hard time concentrating on what was on tv. I finally got up after a few hours, made lunch and then had to rest again. It is now Sunday afternoon and I am writing this post and, due to my brain fog, have had to go back and edit multiple times and it has taken me over an hour just to get this far. I'm frustrated with myself and just want to cry.
I hate having this illness and I hate feeling like this. When I am out and about on my "good days", I put everything I have into it. I will also push myself when I am around people and give them my everything. I don't want them to know how hard it is at times just trying to concentrate on things when my energy is slipping. When I was substitute teaching I gave those kids everything I had because they deserved my best. By the time I would get home I would collapse. If I had a multiple day teaching job the following off days after that would find me in crash mode. When I had a long term several weeks in a row or more teaching assignment, I would come home in the afternoon, crash on the couch, and repeat. by the end of the week, I could barely move and concentrating was hard for me. The weekends were spent in bed trying to get enough rest to get me through another week. I learned that I just could not keep up that kid of pace and it frustrated me to no end because teaching is what I am trained to do and love.
It hurts when people think I am "faking" my illness or taking advantage of my husband by not working full time. I would love to be able to teach full time again. I would love to feel normal and healthy and have energy. I would love to be able to go without pain for more than a day, I would also love to not have brain fog. Most of all, I would love to be the same woman my husband married and be the mother that I was to my kids before this illness hit. But I can't and that tears me up inside. My husband and kids are wonderful and they are so supportive and understanding but I still feel guilty at times. When I see how hard my hubby works both outside our home at his job and then here at home too, it makes me love him even more but at the same time, makes me feel awful that I cannot do more to ease the burden on him.
I do hope this now going on two hours of me trying to put all this down in some coherent manner will help give a glimpse into what I and so many other people go through who have a daily battle with these kinds of diseases. Yes, there are days when I can get a lot done but what you don't always realize is that the day(s) after are ones in which I have little to no energy. If you are also going through something like this, my prayers are with you. I get it...I'm right there with you. If you are someone who loves someone who is dealing with this, my prayers are with you also and thank you for being there and understanding and supporting them. If this is all new information to you, I hope it will give you some insight into my and so many other people's world. God bless and thank you for hanging in here with me.
Bless your heart! I could identify with so much of what you wrote...even though the journey of chronic pain is new to me. God bless you, too!ReplyDelete
Georgene, I'll be keeping you in my prayers. Big HUGS!Delete
Popped in after being on a different blog with your blog mentioned on the sidebar. I have suffered thyroid cancer and never dreamt that I'd be so fatigued on the energy level and also with muscle fatigue. I have difficulty walking and sweat easily. I'll cheer you on and say we have to take this journey one day at a time and grow stronger in our Lord, attitude and knowledge. I had someone tell me recently that I was thinking too much about this. It isn't mind over matter as so many want to say. Blessings to you and I hope you don't give up.ReplyDelete
Deanna, I'm glad you stopped by to visit me here on my blog. I am so sorry that you have gone through cancer. I'm sorry someone was so insensitive to say that to you...they clearly have no clue as to what you are going through. My heart really goes out to you and I will definitely keep you in my prayers. And I won't give up...my family needs me and I need them.Delete
The most important thing is that you are as well as you can be, so take care of you! Then as long as you and your husband are happy with what you are doing that is all that matters really isn't it. So try not to worry about what others think, although I realise that it easier said than done. I hope that you will be OK. xxReplyDelete
Thank you Amy. :) I will be ok...sometimes I just get frustrated and need to vent. :)Delete
Thank you for this post. It is really important that people understand chronic illness. My husband is on a disability pension at 41 years old because of chronic neck and back pain, he also has a heart condition. There are many bad days and some good days. I have been through much of what you described with "friends" questioning why he cant work even 1-2 days a week, these people of course only see when my hubby is well and even then he puts on a brave face. I sometimes have to remind myself of this too when he is unable to do much around the house. You are not alone, sending much love and blessings to you xx
Thank you Mel and I am sorry that your husband is in so much pain with his neck and back and also has a heart condition. I know that it is hard on BOTH of you. Lots of hugs and prayers coming to you also.Delete
I'm sorry you have to go through it and deal with comments like that. It's great to have a husband and family that is supportive though!ReplyDelete
Thanks Jess. I really am blessed with my hubby and my family. :)Delete
Oh, you poor sweet woman, it must be so difficult living with this terrible illness - I'm so sorry for you. I'm glad you are finding ways to 'cope' with it using supplements and lifestyle changes. Hugs to you - xoReplyDelete
Thank you. :) It's not always easy but in looking at the greater picture, it could be worse (and was years ago). I'm just thankful that my husband and I are in a position to be able to have me home so that I don't wear myself out to the point where I am totally miserable all the time.Delete
I am so glad I stopped by today to read your post. I am having a 'crash day'. I spent all last week doing the bare minimum - minor dog walks daily and a tiny grocery store '1-bag' shop. I was getting ready for a big day Saturday when neighbors were delivering their outside storage shed to me. I had two other friends lined up to help as well. I watched as my friends did all the work. It was all done in 45 minutes. The next day I was feeling so good and it was so sunny that I went to my community garden and played in the dirt. From leaving my house to returning, I was gone an hour. And for all that 'activity', I have been in bed all day today and feeling horrible. Just now at 230pm, I am able to sit in my recliner and be on the computer.ReplyDelete
I have lost many people whom I thought were friends. When I was first sick, nearly five years ago, I read about the social isolation so many people face. I thought at the time that that would never happen to me. I had such a great and supportive group of friends. Well, it happened. Most of the people could not cope with this illness. One even said how 'inconvenient' it was when I couldn't commit to doing something until the day of the event.
But the people who have stayed, those are my friends for sure. They understand that I truly have to wait and see how I am feeling before I know if I can do something.
I'm starting to ramble. Just know that it meant a great deal to read your post. SJ in Vancouver BC
Oh SJ, first of all (((((HUGS))))). I can hear the hurt and frustration in your reply here and I am so very sorry. I wish I could be there in person for you and help you through all this. I remember being right where you are now. It took me years to find supplements and things that helped me get some energy back. May I ask you something? Have you had your vitamin D levels checked? Mine were super low and they had to put me on prescription strength megadoses to get my levels back up. That really affected my energy and pain levels and also my mood. Some of the other things that helped me were taking potassium citrate, higher doses of vitamin c, Magnesium, Flax seed oil, and Glucosamine. I cut back on sugar also because if I get too much it makes me feel like I have a hangover. I realize that everyone's body chemistry is different and what works for one person might not work for someone else. I know I tried so many things before I found a combination that helped me. There is a woman named Tawra that has a youtube channel https://www.youtube.com/user/mkellam2 and she is doing a series on living with Chronic Fatigue and Fibromyalgia. I found myself identifying with her and also found some new information on different things that she is doing and using that help her. I hope you go and watch and maybe some of it will be helpful to you also. Again, big hugs and know you are not alone.Delete
Thank you for the info on the YouTube series. It blessed me and I learned a few new things.Delete
Oh my goodness, dear Debbie, bless your heart! I can't imagine someone saying such a hurtful thing to you, or about you! I have a friend who has been diagnosed with adrenal fatigue syndrome, and she and I would get together regularly, but now she cannot even get out of the house, or even visit. She is struggling to find a balance, so we keep in touch every day or so through email, and I bring food to her as she requests it. I can't imagine someone being so hurtful with such comments, so awful. One thing you might think about trying, if you haven't, is cultured foods, especially kefir. There is a lot of research that shows kefir is able to help the gut heal, and the body's immune and digestive systems to even out. I know that I feel so much better taking it every day. I just posted today on kefir, and maybe it will be helpful for you. I sure will be praying for you... dealing with these kinds of things is so very stressful in many ways. Much love to you today dear friend!ReplyDelete
HUGS and thank you for being there for your friend. She needs you more than you can even imagine right now. There will be many friends that will not know how to deal with her illness and they will drift away leaving her feeling very hurt and alone. I have been looking into cultured foods like kefir and kombucha. Kimchee has been a staple in my diet for many years, but I want to add more foods to it. I read your post on kefir and your timing was perfect! I love how God moves in that way to connect people so we can learn from one another. Be blessed!Delete
Oh man, I hear ya. We stigmatize invisible diseases so much in this country, it's sad. I think the saddest part is the lack of empathy from the majority of people. So many people that just say, "It's all in their heads. Why can't they just suck it up and be normal?" How can we as a society not be able to put ourselves in someone's shoes and say, "Wow. That must be really hard."? I don't have Chronic Fatigue Syndrome, but I can easily empathize. A lot of aspects of the disease sound similar to aspects I deal with with my depression and anxiety. This is not in our heads. These are real diseases.ReplyDelete
I think key for me is eliminating toxic people from my life. I don't need someone around telling me to suck it up. I don't need someone asking me in amazement how it could possibly be so hard to go to the grocery store. I get enough of that in my head, thank you very much.
I'm glad your family is supportive, that always helps. Take care Debbie, I'll keep you in my thoughts :)
Thank you Jessica and I am so sorry that you are dealing with depression and anxiety issues. (((((HUGS)))) I have anxiety issues also and have really bad panic attacks. You are right about the toxic people. We have eliminated as many of them as possible from our lives but there are still a few that are "permanent fixtures" and continue to cause stress for us and those we love. We try to limit contact with them as much as possible though. ;)Delete
Be blessed and I will keep you in my prayers too!
The same is true of depression and other mental illness...if people can't see it, it can't be real.ReplyDelete
Sorry you have to deal with unkind comments.
You are so right Theresa. It's really sad isn't it.Delete
Debbie, some people were not born with empathy and can only understand something they've experienced. Unfortunately, the person who said that about you may never "get it" until she experiences something like it herself. I'd just congratulate her (in my mind) on her good health and say to myself, "What she thinks of me is none of my business!"ReplyDelete
You are right, she will never get it. I just wish she would keep her opinion to herself and not spread lies about me.Delete