Had no clue that being chronically ill could be so difficult. Had no clue that a person with trauma in their past could be so affected by it while walking through chronic illness. Had no clue this could be the most difficult journey of my life and last for so many years. There are days when I cannot begin to see the whole picture. I have to rely on what is right in front of my nose. That is all I have some days, so I accept it and use it wisely.
Without swear words I don’t even know how to scream my frustration and disappointment. Yet when I swear, it is not pretty. My Lyme brain cannot sort out the sentence structure so I scramble the words. What could be a very useful swear word ends up being more frustration.
I was diagnosed with Lyme Disease from a positive blood test and symptoms 2 1/2 years ago. I have clearly had Lyme since early childhood. Neurological Lyme set in when I was 10. It was never treated because no one knew I had it. Then one smart gynecologist recognized the symptoms, had me tested, and I have completed Lyme treatments and on a healing path.
Sounds great. So what is the problem? Chronic illness, whether Lyme or any other disease, takes time. Lyme is notorious for how long it can take to recover after treatment. I cannot change that fact. No matter how much I want to be like everyone else and get on with life, my body is taking its own time.
Fighting it just makes it worse. I try to pretend like I am feeling better than I am. After years of this no one wants to hear about one more pain I have or how exhausting a daily routine of taking care of myself is for me. I get that. Complaining and whining are not useful to anyone.
With that said, may I please have just one paragraph of whining and complaining?
I still cannot do everything for myself and I need more help and there is no one to step up and help. With a heart condition, I can feel my limits and I have to far exceed them daily to care for things that I need. The past trauma feels like a gushing wound on these days when I hurt inside and out. And I cannot even cry about it to “let it out” because my heart literally cannot take the stress of crying. How bizarre is that? A good cry would let me deal with some of this miserable anguish.
That will be all the whining you hear today. I try to pride myself on no whining, no complaining, get on with it, move through it, let’s go. Maybe this physical set-back is trying to teach me that I am too prideful. Maybe it is trying to teach me that I really do whine. I DON’T KNOW. I don’t care, for today!!!
I have one girlfriend that I do share these moments with and allow myself to whine and complain. She is very helpful but I am not sure that the whining and complaining on my part are helpful in any way. Having a true friend that sees through my struggles and distinguishes the true needs in my life has been a lifeboat in many ways.
For today, I have no answers and that is okay. Physically my body is struggling far beyond what I can deal with. I cannot even figure out what is the difference between whining and legitimate scream for help.
So….what can I do about it? How can I get through these really hard days when my body physically needs more help and there is nothing I can do about it?
For everyone that answer will be different. For me, my routine and silly endless charts keep me on track so I don’t make things worse. I realize that when my body is struggling to this degree, I cannot see past my own nose.
Routine
I do the same thing every single day, day in and day out. Could seem boring to others but I am using the resources I have to make the best out of a bad situation. When one does not have their full health, they use what they have to get through each and every day. Seeing that as a resource makes me feel grateful instead of angry.
My routine is good for me, my health and my sanity.
My routine consists of good choices that keep me moving forward even when I have nothing inside myself to make any choices. The routine is already set up. I can be mindless and still follow healthy steps through these miserable days.
I have a routine right now for everything to keep me on a healthy path, especially on these nutty days that I would not make these good choices. It takes years for a person with Lyme Disease to heal. I have to make good choices day in and day out, for years, to get through this. These miserable days cannot be an excuse to do things that hurt my body.
My routine allows for flexibility as well. If I am having a miserable day and feel like the only thing that I have that can comfort me is my weekly stash of healthy chocolate then I allow it without any regrets. I have come far enough on my health journey that I am aware that it only “feels like” a weeks worth of my chocolate stash can comfort me. I don’t need to have a moments thought about why I am doing it or how wrong it is or anything. My miserable days are filled with enough nutty thoughts without a moment of worry over what it takes to bring some comfort.
Silly Endless Charts
I had to start this when I was diagnosed with Lyme Disease and started treatment. It was WAY too hard to keep up with all of my food sensitivities, my medicines, my nutrient requirements, etc. No human could remember the details of such. So I started using charts to help me move through my day, very methodically making progress.
Regardless of what disease anyone has, if you are on a health journey, it takes work and some sense of organization for all that has to be done. I am an organization freak so these charts actually were a way of helping me feel like I had some sense of control over an out-of-control situation.
When I am experiencing a miserable day, my body is screaming for help, following my charts keeps me on course to health. I have chosen all natural “medicine.” It has been one of the top three elements that saved my life. I cannot just randomly stop taking it until I have healed. Trust me, I have tried and that in itself has been the cause of some of these miserable days. My day will come when my body will overcome this health crash, I am not there yet. My silly endless charts keep me on track so that I no longer have set-backs because of missing “medicine.”
Are routines and silly endless charts the answers? Of course not. I have had the highs and lows of chronic illness for so many decades that I have learned what works for the moment for me. Even that is always changing. Some days and weeks I only feel the effects of chronic illness and other times I also feel the effects of trauma. For today I feel so utterly helpless that I have some whining going on. Tomorrow will be different.
Every day of every person’s life is always going to be different. I do anything I can to deal with today so that I can see past my own nose tomorrow. After a lifetime of set-backs, I have learned to be grateful for today, no matter how bad it looks. Tomorrow it will look different and I will have different resources to deal with it differently, or at least that is my hope. Can’t get stuck in the past or so hopeful for tomorrow that I cannot deal with the task at hand of TODAY.
I am amazed and grateful for the capacity we have inside of us to deal with today.
How are you dealing with TODAY?
Maribeth Baxter, MBEC
Donations are accepted to serve others on their chronic illness journey. Maribeth Baxter, MBEC provides voluntary certified health coaching services to the financially limited during their time of crisis.
