Friday, July 18, 2014

Be gentle. Be kind. Be compassionate. Be understanding. Slow down.



I realized the gift of CFS yesterday and decided I am actually happy to have it. That probably sounds insane, especially to anyone in the throes of this illness.

For a long time, I have strongly believed and felt that we, humans, are moving too fast. We want everything now, and as we race around trying to accomplish every possible thing in the shortest time span, we are going against our nature.

Technology may be changing and growing, but our nervous systems and immune systems are not. Our cells aren't replicating or healing at a faster rate, yet we act like we are machines. We are not machines, and our human bodies are getting all used up--burning out.

For me, CFS has shown that I need to take care of myself first. Just like the airlines tell adults travelling with children to place the oxygen masks over their own face first, I have to put me first. A lifelong people pleaser, always making sure everyone else is happy before tending to my own needs, I have treated myself with very little love and respect. I have thrown it away on people who didn't even want it, all the while I was right here needing to receive from myself. I have given my own self the least amount of attention, allowing myself the scraps of whatever energy I have leftover after tending to others' needs.

CFS is a task master of sorts. If I do not care for myself, the punishment comes in the form of many horrible symptoms that make living seem worthless. Imagine if you decided on some New Year's resolutions, and then when you gave them up, you felt very ill. Eventually you would feel somewhat better, but if you continued to stop adhering to your new resolutions, you would fall ill again. You would be forced to stick to your resolutions, and for me, with CFS I am forced to take better care of myself. That is actually a gift, odd though it may seem.

Possibly harder than feeling fatigued, sickly, and weak, feeling better is more challenging. How so? Well, when I feel better, I want to do so many things, because I am excited to feel pretty good again. The danger is in overdoing it and falling back into a state of unwell being. That would be me following my "New Year's resolution" which is to take care of myself, which includes pacing myself on good days.

Be gentle, because with or without CFS, I think we are all too hard on ourselves and others. In the past, I have exercised to the point of injury just trying to look good in clothing. Why? Is that loving myself? That's not healthy. Exercise is good, but it should also be enjoyable. Also, be gentle when you make a mistake or relapse. The mental abuse we unleash on ourselves (or others) can be horrific. So things didn't go as planned. So you are super dizzy, constipated, and exhausted today. It's OK.

Be kind. Be kind to yourself and all other living creatures. The world is so full of anger and hate and the macho "no pain no gain" attitude that it needs more kindness to balance it out. Being kind to yourself and others actually feels really good, too. It is a gift to give someone some kindness, even if just in a "hello."

Be compassionate. You will never know how someone else feels. Maybe you would handle the situation he or she is in differently, but that is because you are you. The other person isn't weak or sorry. She or he is dealing with her or his feelings as best as she or he can. We are all doing our best at every moment of every day, and even my best today cannot be compared to my best yesterday. Same goes for everyone else.

Be understanding. Open your mind to the idea that what other people feel or think is and never will be anything you could fathom. Know they are where they are for a reason, and getting frustrated or constantly asking 'why' or trying to change them won't help anybody.

And please, slow down. I believe so many people are ill with CFS and Fibromyalgia and many other immune disorders because we aren't living in the present. As I stated earlier, the human body never has and never will move as fast as a computer or other technological creation. Stop and smell the roses. Really do it, your body will thank you.

Love and peace for all.


Wednesday, July 16, 2014

Choosing One's Own Path to Health


CFS Challenge: Finding new ways to honor the body's limits, and balance activity and rest. 

No two people can follow the same protocol for healing or rather, subduing their CFS symptoms. From what I have read, that's all we can do is "manage the symptoms." I am not going to lie, it looks bleak, and at times I get pretty bummed out. 

As I have already experienced, I am quite proficient in overstimulating myself and pushing past my limits. I guess that is the kind of person I have always been. As a child I remember whining to Mom, "I'm bored!" When I try to do less and be more serene, my mind thinks it has found it's perfect audience, and the chatter begins. Then I think about all of the things I want to do, how I can do them, and so on. Needless to say, even on low energy, I will attempt as much as I can before nearly falling over. 

Then I have the crashing days. If it's a day off from work, I am relieved as I don't even want to leave the apartment. Even still, feeling like the living dead and accomplishing nothing feels like a wasted day, which then leads to depressive feelings and feelings of worthlessness. 

As horrible as the fatigue, the dizziness, the headaches--and so much more!-- are, I am trying to view this positively. In a way, I have no choice but to get creative and design a new way to live my life to my satisfaction while maintaining balance so as not to overdo it. I am far from blazing this new trail, but I am going to consider myself an explorer rather than a helpless victim. 

I have not found much in the way of support groups either online or in person. I did read a warning that support groups can be dangerous if there are too many controlling sad people in them bringing everyone down. So, maybe like creating my new life, I am on a solo project here and need to find ways to support myself emotionally as well as physically. 

Friends and family seem to be kind of stumped on what to say or do, and who could blame them? I think for me it is going to be about asking for help when I need it, and even just reaching out and asking someone to either give me a shoulder to cry on or tell me a joke. There are times for both, believe me. I would be lying if I said I never jump on the pity train from time to time. Frustration isn't a strong enough word to describe how it feels to wake up and feel absolutely horrible for what appears to be no good reason. 

Spiritual by nature, I also believe there is a deeper lesson to be learned. For me, balance and self care come to mind. I need to balance--if I have some energy and over do it, I will be empty the next day (or two, five, or seven!). And self care, I ought to have learned this in massage school, but I seem to only have learned it in theory. Now it's time to practice recognizing my own value and worth. I don't have to make sure everyone else is happy before I can be happy. 

As I explore I am sure I will discover more reasons for this health condition. Until then, I will take it one day at a time. 


Time to wind down with some meditation before bedtime. 








Saturday, July 12, 2014

Accepting the Diagnosis

For about seven years now, I have been experiencing a host of symptoms from dizziness to debilitating fatigue. As each symptom appeared, I came up with a logical explanation for it. When the fatigue hit, I attributed it to the high stress in my life; however, when things calmed down and I was still beyond exhausted, I knew something was wrong.

Being a woman in her forties without ever having had children, I thought I had entered perimenopause.  The symptoms are similar, and even though they began in my mid thirties, I figured the lack of pregnancies was contributing to an early transition towards menopause. I have had blood tests that showed my hormone levels (and all other blood tests for everything else under the sun) were in the normal range, but I was still convinced it was hormonal.

Last August 2013, my primary physician diagnosed me with Chronic Fatigue Syndrome (CFS). The pained look on her face when she told me there is no real treatment plan for the condition was frustrating to me, because I felt like she had given up on trying to figure out what was wrong with me even though she clearly wanted to have a definitive answer. She told me to reduce my activities, stretch more often, and try gentle yoga... anything I can think of to reduce stress.

Irritated, I marched on with my perimenopause self treatment, trying hormone creams, changing my diet, reading all I could on female health and menopause. It wasn't until this past May that I finally heard and accepted the diagnosis of CFS from my gynecologist. I had gone to her certain she would see I was right about the hormones, but alas, she said the same thing as the primary physician.

Here is what CFS is like on a bad day.... Imagine you took a handful of sleeping pills upon rising in the morning, but it didn't make you fall back to sleep. No, you are awake and you have your job and a million chores to do, but now you are so tired you can barely move. You feel like you are in a coma but awake. It may even be a day off and you have fun things planned with people you love. You still feel the waking coma. You check your pulse every so often as it feels like you have died and are existing in limbo. (I have actually done this--checked my pulse as it really felt like my heart had slowed down to a complete stop).

On a good day it seems like you have been reborn and the hell has come to an end. You feverishly make plans trying to catch up on lost time, and you do as much as you physically can in one day. You laugh, you dance, you rejoice.. you are alive again.

The next day, you are back in the coma, and the coma lasts for weeks. You are depressed. You blame yourself for being weak and not being capable of caring for yourself. You feel guilty that you can't be the fun, active person you used to be, and you wonder when everyone will stop loving you and leave. You have to make a lot of calls and cancel the plans you made that one lovely day.

There are the physical symptoms: fatigue, chills and night sweats, headaches, vertigo or dizziness, mild fevers, sore throat, tender lymph nodes in the neck and armpits, muscle and joint pain, visual disturbances, allergies or sensitivities to foods, odors, chemicals, medications, or noise. And there are the other symptoms: mental confusion or trouble concentrating, depression, anxiety, and panic attacks. I have experienced all of these symptoms. Some come and go, and some stick around and vary in severity. Whenever I think I have figured out what to do to lessen the symptoms and feel better, things get worse. And they get better again. It's a "no rhyme or reason" situation.

Stress definitely makes things worse. Stress or overdoing it physically or mentally. Even if I put a lot of thought into a positive project, I can get hit with a wave of fatigue that is nearly debilitating. Learning to slow down and pace myself is the key. I am in the process of that right now, and believe me, it isn't as simple as it sounds.

I have read that some people with CFS become bedridden and can no longer function. I will not become that person. I am slowing down and learning to care for myself, but I will not be stopped. I think the ones who have been stopped (bedridden, can't work, etc.) did not listen to their body, to their spirit.There is a huge lesson here, and I am finally stopping to listen and learn.