Yep, we’ve all been there/are there, the fatigue that comes with Lyme can be completely crippling. Lifting a leg over the side of your bed can be quite a feat (ha ha). But even 6 months and beyond into treatment fatigue can be overwhelming. Here is a quick video along with supplement suggestions on how to deal with fatigue
Lyme Awareness Month
Post 1.0 Feelings and Emotions
Lyme disease can be (dependant on your symptoms) what is called an invisible illness. Meaning that you can “look” fine while inwardly you are suffering pain, fatigue, weakness, brain haze and confusion, visual problems, “Lyme brain” (dyslexia, inhibited reading comprehension, cognitive issues, memory problems, inhibited name and word recollection), digestive disorders, edema, poor circulation, cellular oxygen starvation, reduced lung function….
These are all symptoms that the people around really can’t see, and it is hard to explain sometimes to someone that you generally just don’t feel well. I think people are more understanding of people who are in cancer treatment and going through chemo, how horrible they can feel, their disabling fatigue and pain. Now please, do NOT think that I mean everyone with Lyme is going through what some cancer patients go through, I just mean that the general public know and understand cancer better.
I am going to run down some of my personal emotional experiences of being sick, before and after diagnosis. Since I have not experienced some of the very severe symptoms of Lyme I am not going to bring them up (Seizures, Palsy, MS symptoms, Alzheimer’s symptoms, ALS symptoms,….death).
ISOLATION:
It begins slowly, you are too tired on the weekend or after work so see your friends or do the activities you used to do. People who you used to see regularly don’t call as often and stop inviting you to activities, because they know you will just say no. After time you stop contacting other people, you lose interest in social activities, both because you don’t have the energy and because your brain hormones are now so out of balance you simply don’t care. A state of apathy takes over and your world is your illness. If you are able to work this requires 100% of whatever mental and physical energy you have just to function. At the end of the day you are tapped out, and you honestly don’t even have the desire to talk to anyone. For those around you it may seem like you don’t care anymore, you may be grumpy and irritable, and you don’t communicate like you used to. For you the “not caring” is true, not because you truly don’t care, but because fatigue has set into your brain and bones and you find you don’t have the ability to care.
DEPRESSION AND LOSS OF SELF:
Depression and physical/mental fatigue can be hard to separate sometimes, and honestly I do not always know where one ends and one begins, or at what point they are like paint colors mixed together, indistinguishable one from the other, but I will try.
Depression comes on slowly, fueled by the physical pain and symptoms, encouraged by the isolation, and made prominent by losing yourself. By “losing yourself” I mean I think back to who I was in the past, in those windows of time when I was fairly healthy; I loved photography, hiking, biking, yoga, writing, art, music, being creative, cooking and baking, and many other things. As illness takes over those things fall away, and then your interest in those things falls away, and then the very memory of those interests and desires falls away, and suddenly you really don’t remember what it feels like to be you. Nothing is interesting anymore, and even if it was it takes too much energy to pursue it. So when you spend what little energy you possess on just your responsibilities (job, laundry, doctor appointments) and nothing else, you go into survival mode, and life is about just getting by…..taking pills….breathing, you become a drone.
It took me a while to realize that the lack of emotion that had become my reality was itself an emotion as well. Depression is often not always “feeling” down, but shutting down. I also went through a few months in my treatment where I literally was bed ridden most of the time, during that time I did reach a few rungs lower on the depression ladder. I thought of giving up, that life wasn’t worth it anymore, that things just kept getting worse not better. I am thankful that slowly, a few steps at a time that period did dissipate, both with high doses of vitamin B and just with time…getting past that rough patch in my treatment. But I need to say most of all God was speaking to me through all of it, and trying to reach me on a deeper level, and I had to actively reach back and be embraced.
ANGER:
Anger (for me) has been strongly tied into the physical, but it is still a strong emotion I have experienced throughout all this. I have been angry at life for many years for cheating me out of my youth, for robbing me of experiences, for eating my flesh and my cells and my skin….experiencing physical time passing without reaping any of the benefits those years could have given me.
I even have to admit experiencing times when I was angry at God. I didn’t want to be, I knew He was good, that He had reason and a purpose, but when you are sick and “blind” all you know is your pain and disappointment, and anger. Thankfully I have talked it through with Him, and have been led back out. But it was not until I surrendered that God has started to open my eyes to some of the reasons I am on this journey. FYI, be very careful if you ever consider praying with an honest heart for faith and a strong testimony, you do not know what you are going to get.
Like I said, anger for me can be unexpected and mostly physical, primarily tied to my liver. This might sound odd, but it is true, and Angry Liver isn’t just some random term. When my liver is “angry” (overly toxic, backed up, overwhelmed) the anger can be very mild, or I can feel like I want to punch, kick and swear for absolutely no reason, and then be miss sunshine again the next day. Thankfully I now recognize it when it happens, and have tuned in to the actual physical feeling that comes with it. There are different methods to helping your liver along, some of which are probably TMI for the emotion page, but I have learned to deal with.
SUMMARY:
So these are the base negative emotions that I have gone through, all in various degrees at different times. I am better than I was in 2012, but I still have a long way to go. Taking care of the emotional toll an invisible illness has on you is a multiple course of action process;
Time. Just getting through the time it takes with your Lyme treatment, letting the drugs run their course, getting past when they make you feel worse, making it through the worst of your die-off and Herx reactions.
Love. I am blessed to have people in my life that love and care for me, both friends and family. Surround yourself with the people that love you, that are willing to listen to what you are going through and want to try and understand.
Acceptance. This was the hardest part for me because I did not (still don’t) want my identity to be that of a sick person. But you do come to realize that is who you are anyway, whether you label it or not. This is the life you are living. There seems to be a process when you are diagnosed with an illness; Denial, shock, depression, acceptance, fight! Accept where you are in this process, move forward with optimism but accept where your body is now. This will free your expectations and your mind so you can get better. Be kind to yourself, even if you can’t do much spoil yourself with good music, beautiful pictures, whatever brings you even a spark of joy.
Community. It has been very encouraging and supportive to find others out there that are going through similar experiences. Through WordPress and Tumblr I have found others that can support me, and that I can encourage as well. As far as you are able, reach out.
God. You may or may not be at the place where you have a relationship with God, I hope you are. I cannot imagine going through what I have without knowing that I have a Father, a Protector, a Shield. He is my Strength, my Hope, my Everything. I know “I have a future and a hope” in Him. I know that “All things work together for the good of those who love God and are called according to His purpose”. This journey has been tough, but knowing that it is being used for God’s purpose does give me peace and hope. He knew all this was going to happen, nothing is a surprise to Him, He gave me this set of circumstances because He deemed I could handle it, and submit to His will being done through it. I have been honored.
In a little less than 3 hours we begin the month of May, which is also Lyme disease awareness month. Will you please help me in sharing/reading/liking this post, and others to come?
I have only been specifically blogging about Lyme for a matter of weeks, but so many of you know about the years of undiagnosed suffering, and how completely debilitating this much misunderstood disease can be. I am also finding SO many other people on this same site writing about their battles with Lyme, and the suffering they are experiencing.
During this month as I post specifically about certain symptoms, FAQ’s, scientific facts and other information, I will ask if you if you are so inclined to shout out to me….re-post….whatever you feel is appropriate. And for those precious people I have known over the years that think I disappeared off the face of the earth, I am sorry…because you are right, I think I did. Maybe this will help in understanding why.
Love,
Jennifer
I woke up with a screaming headache this morning, one of those headaches that is caused by inflammation and engulfs your entire skull, snakes down your neck, and throbs when you move and with every heart beat. Yesterday was a hard day because I hadn’t gotten enough sleep and had to caffeinate myself past the point of reason to get through the day.
I am having to adjust my eating habits again just slightly because candida is creeping back again after being off the amphotericin for about 6 weeks. Although I am sugar-free and fruit-free right now I have been allowing myself some honey every day along with stevia, but honey is going bye bye until this gets back under control, and amphotericin is back on the drug cocktail menu….
I had an IM conversation for a short bit with a friend last night that I have not seen in a while, and it really struck me how long it had been since I had seen her. I am blessed to have loving caring friends that continue to stay in contact with me even though I have been MIA for so long. I really want this to change. It has been such a long time since I have had any spare energy to socialize outside of just doing my job. When I am working I am putting 100% into doing my best, not letting any pain or fatigue show, and trying not to let my health effect me. At the end of the day I am spent, I do not see friends, I do not go out to movies, I don’t do anything unless it it simply stopping at the grocery store. It is much the same on weekends. Weekends are about extra sleep, and resting my body and recuperating from the toll the week has taken on me, that plus any medical appointments.
So right now I am thinking of my friends, and how life keeps happening somewhere out there while I feel like I am at a standstill. Should I push myself harder right now to be more social? Or would I find that I would crash and burn? I have a feeling that at least for right now I need to listen to my body when it needs to rest, and keep hoping that in the near future things will change.
My Color Is Lyme 