A Day In The Life Of Chronic Fatigue

A Day In The Life Of Chronic Fatigue

A Day In The Life Of Chronic Fatigue

Along with Fibromyalgia, I have Chronic Fatigue. I was reminded about the misery of Chronic Fatigue this past seventeen days. Normally, with my current medication, both for Chronic Fatigue and Insomnia and caffeine pills, I keep my fatigue at a manageable level.

I went to the doctor seventeen days ago and needed a refill for several pills. Some prescriptions were sent electronically and some were handwritten. We talked about the Nuvigil which is what I take in the morning to help me be alert. Sometimes I augment the Nuvigil with some caffeine pills. The doctor forgot to send in my Nuvigil. After the dust had settled, I had all my prescriptions filled, or so I thought. I had two Nuvigil pills left. In a couple of days there was no more Nuvigil and I realized that Nuvigil prescription had not been filled so I called the pharmacy. They’ve been known to mess up on prescriptions. They had no record of the prescription so I called the doctor’s office, they faxed an order over to the pharmacy.

Later that day, I called the pharmacy and they didn’t have it. By then it was too late to call the doctor’s office. Making a long story short, I went through this for several days. I was getting more fatigued and sleepy during the day. My head was clouding up. I was able to do a few things each day, but then by afternoon I started falling asleep on and off for the rest of the day. Add a cloudy tired mind to fibro fog and it’s a real treat. NOT.

chronic_fatigue_nuvigilI had the doctor fax the prescription in a few times and then I had them electronically send it in a few times. Every time I called the pharmacy they didn’t have any record of it. I asked the pharmacy to call and fax the doctor.

This all went on for about a week I thought, maybe ten days. I finally physically went to the doctor’s office to get a physical prescription that I would hand deliver to the pharmacy.

Between the receptionist and the nurse the wires got crossed and the nurse sent it in electronically. While I had access to the nurse, I called the pharmacy and verified by the pharmacist they had received the order. Halelua, the pharmacy had the prescription for Nuvigil in their system! It was filled by the time I got there.

Everyone who has chronic pain, fatigue or fibromyalgia has more than their share of medicine stories, this is nothing new. What I learned about all of this was that after two days of Nuvigil in my system I could see a radical difference in my head. I went from fatigue in my mind and very sleepy too much less sleepy and much less fatigued. It is imperative that we manage out medicine as patients with chronic illnesses.

Also, if I hadn’t had such a cloudy head from the chronic fatigue, I would likely have had this issue resolved much sooner. I thought this whole story took about a week or ten days, but as I sat down to write this post I looked up when my doctor’s anointment was and it turns out that this whole scenario was seventeen days, not ten days. Time seems to slowly float by unaware when you’re in the throes of fatigue or pain.

14 Ways To Cope With Fibromyalgia, POTS, CFS And Other Chronic Illnesses

14 Ways To Cope With Fibromyalgia, POTS, CFS And Other Chronic Illnesses


Let go of the guilt that comes from not being able to do what we once did. Having fibromyalgia or any chronic illness is not something we sought after. We didn’t ask for it. It just happened to us. For whatever reason we were imposed upon by this illness and its debilitating effects. It’s like being victimized. It’s something that happened to us through no fault of our own. We can’t be held responsible for having fibromyalgia, POTS, Chronic Fatigue Syndrome or any number of the chronic invisible illnesses.

We need to stop feeling guilty and we need to stop feeling responsible for having this illness. We didn’t ask to have any of these chronic illnesses. So how do we move beyond the confinement that fibromyalgia imposes upon our life? Most people experience guilt because they are no longer doing what they used to do. The guilt comes from letting people down who continue to expect us to perform at the same level we did prior to fibromyalgia or chronic fatigue. We feel guilty for agreeing to do something for someone and then can’t live up to other peoples expectations of us. Living with fibro you know that symptoms can rise and fall on a daily basis. We have no control what this afternoon will bring or what tomorrow morning will bring.

We can wake up one morning feeling good and by the time we shave, shower and eat breakfast we begin to feel weak from the pain and exhausted for no good reason and can’t remember what you ate for breakfast. All our plans for the day are shot. That makes many people feel guilty and guilt causes stress and stress can easily contribute to feeling worse. Guilt has its place in life, but not for the way we are forced to live as fighters and survivors of fibromyalgia. If we commit a transgression we should feel guilt, but we do not need to feel guilty for letting people down because we are in too much pain to move about or we are too fatigued to get off the couch or out of the bed. For those kinds of things we do not need to feel guilty as it will only compound our pain, fatigue, fog or other symptoms. GET RID OF THE GUILT!


How do I give up my old life? First of all, you’re not giving up your whole past. You’re just giving up on what you can no longer do and you need to learn what you can do. There are a lot of things you can do to give you a sense of purpose and fulfillment.


Understand what you can and cannot do. Consider keeping a journal to learn how you deal with the circumstances of your life so you can learn and fine tune your new outlook on life. Maybe you can’t go hunting anymore, maybe you can’t move the refrigerator out to clean behind it anymore, maybe you can’t do all the housework and laundry and spend time with your kids like you used to.

14_ways to cope with firbo

So focus on what you can do. Forget the fridge because perhaps you can sweep the kitchen floor. Maybe parts of your house may need to be untidy, so you can spend time where it matters most, with your children or your spouse or friends. Remember, with fibromyalgia, your new reality is to reexamine your priorities because you can’t do it all.

Look at your life and tasks, and go into it like you are negotiating a special deal. I can’t do this . . . but I can do this . . .. I can’t sing in the church choir, but I can still go to church. This is the way you need to think. Don’t give up on life altogether. Just rearrange it. Compromise the events of the day.

Want to go out with the family to celebrate a special occasion? Take the day off from your typical modified chores and rest and sleep and relax. Conserve your energy so that you increase the chances of making it out of the house that evening and maybe even make it through the whole evening. As the saying goes, “you need to rob Peter to pay Paul.”


Now you see why letting go of the past limitations is important you can identify a new approach to living your life. Create new goals unfettered with past goals and achievements. Let your goals be based on what you can do with understanding your limitations. When setting goals, some people like to add to their goals step by step procedures for achieving goals. If you make your goals that way leave A LOT of room for each goal because you may have a day here or there that puts you in bed or on the couch in front of the TV or if you’re lucky a good book. There might be flare ups that last a week or a month. If you allow time in between your goals, then you won’t be as inclined to feel bad about not getting your goals done in a timely fashion.

You need to have flexibility built into your goals and then you need to reserve the right to modify them according to your ever changing circumstances. Always remember there is always room to grow even when the pain seems to be getting the better of you right now. That’s why goals are important, they keep you focused on what you can do.


Let’s look an example; You’ve wanted to read a certain book that is 1200 pages long but never had the time. You set a goal to read it. You give yourself six months to read it. But, as we all know, who suffer from fibro, things happen. Pain happens, fatigue happens. With fibromyalgia, a lot of things can happen that can take your eye of your goal.

You have written down the goal and it is where you will see it, so that it will remind you what you’re trying to do. You’re working on it diligently, but life happens, AKA, fibro happens and six months have come and gone and you’re only on page 578. “We have fibro we gotta stay flexible,” so you say to yourself, “if I didn’t have that goal or reading that book I may never have started. Now I am at page 578! Yey!” Now you exercise flexibility and say “in the next six months I will finish that book. The next half years comes and goes and it is a little better than the past six months and you’re able to finish the book. That’s what flexibility is all about when you make goals.


Communicate your issues and your desired changes with your family and close friends. Look at every important person in your life. Realistically look at them and determine what they’re capable of in supporting you. And then cut those expectations in half so that you won’t be disappointed in them.


Adjusting to your new environment doesn’t mean you are giving up on fibro. You still are seeking medical help in managing your illness and ease your pain and other symptoms.


There is room to grow in your new life.


Another thing about goals. Look at your old life and see what your goals were. Can they be modified and brought into your new life? If they can, then outline what needs to be done to achieve those goals and how they need to be modified. If they can’t be achieved then look back on your past and see if there are other interesting things that were put on the back in your old life and see if they can be brought back to life in your new life. If not, seek new goals based on your past experiences or new desires for achievement.


Keep an open mind. While there are definitely things you cannot do, there are things you can do. It’s kind of like growing up all over again. We need to stay open and positive and try new things to test our limitations. Sometimes keeping a journal will help keep track of these things.


Is fibromyalgia the end of life as we know it? Yes, it is. It is common sense to try and be as positive as we can be when dealing with a chronic illness such as fibromyalgia. I agree, we should be positive. I have had fibromyalgia for more than thirty-one years. When it comes to fibromyalgia I do not know it all, but I can speak with a degree of experience.

14_ways_to_cope_3Before we can improve our situation we need to come to terms with the idea that life as we knew it before fibromyalgia, is over. But that doesn’t mean our lives are over, only that our pre-fibro life is over. That’s not a negative thing to say, it’s a reality. If we can accept that reality, then we can move forward in our new life. A life filled with chronic pain, fatigue and fog. We can move forward in spite of the painful flu-like body aches and muscle spasms and bone crushing pain in our joints, lower back and hips.

We can go on to a somewhat fulfilling life in spite of the memory problems and other cognitive issues we call fibro fog. We can get some meaning out of life despite all the other symptoms of this dreaded disease. But first we need to understand the things we once did, will need to be eliminated or greatly modified. The expectations we once had, need to be adjusted to meet our current circumstances. Once we come to this settlement in our minds, we can do great things relative to our new pain filled life.

If you have fibromyalgia, then I know you feel the pain and frustration, but do you feel unfulfilled as well? Do you feel as though life is passing you by? Doesn’t it seem like all we do is try to make it through the next flare up? Are we so consumed with the pain, the fatigue, the fog and the malaise that we cannot seem to focus on anything else?


We need to manage our own expectations and we need to help others understand our limitations.

We cannot do what we once did. The pain is unrelenting and the fatigue is so overwhelming. There are so many symptoms that constantly get in our way. There is no way we can do what we used to do. We need to be realistic with our expectations. We can plan to do whatever we want, we have that right. But living up to it, that’s a whole different issue. We cannot control how fibromyalgia flares up or when.

A friend calls you up and wants to go see a movie tomorrow night. You say “great.” Tomorrow night comes and we get hit with a flare up. You call your friend and cancel your plans because the pain is unbearable. It feels like you have the flu and can hardly breath thru the pain. You ache all over. Do you feel guilty? You might, but you shouldn’t. Why should you or I feel guilty about the chronic, invisible illness we have? We didn’t ask for it. We didn’t choose it, it chose us.

It’s hard for us to plan in advance any kind of activity so we have to manage our expectations and the expectations of others.


When we talk about giving up the past, we’re talking about letting go of the past that motivates our actions today. We’re talking about the past where we worked fifty or sixty hours a week and still had time for activities with family and friends and have a full and fun filled weekend. We can hold ourselves to the old standard. We need to let go of it and accept our new standard and plan accordingly.

Since we can no longer hope to live like that again, why should we obsess over it and make ourselves feel guilty and stressed? We shouldn’t. We need to focus on a stress free life and obsessing over the past will do you no good. We need to let go of that type of our past while holding on tight to the memories of the past.


We need to learn what we are capable of now that fibro afflicts us on a daily basis, on an hourly basis or on a minute by minute basis. We need to understand that while there is still life left in us and we can still live a life worth living, we have limitations. Sure, we can break those limitations, but fibromyalgia shows no mercy, it has no grace, it demands consequences to our actions however unfair that may seem.

We need to understand that there are things we can do if we pace ourselves. What we might have accomplished in a day, back before fibro set in, may take a week to do now.

Maybe you can’t go hunting anymore, maybe you can’t move the refrigerator out to clean behind it anymore, maybe you can’t do all the housework and laundry and spend time with your kids like you used to. We need to understand that we can do some of those things with proper planning and with extra time figured into those activities.

So focus on what you can do. Instead of moving the refrigerator focus on the fact you can still sweep the kitchen floor once every few days. That’s better than nothing. Maybe you can’t go hunting anymore, but you could perhaps enjoy a mild walk on a simple nature trail.

Forget that fridge and prioritize. Perhaps it’s better to forget certain house cleaning chores so you have the energy to spend time with the kids.

Book Review – A Voice Of Hope

Book Review – A Voice Of Hope

A Voice of Hope

By Connie Bricker Shaler

You can pick up a copy of her book at http://www.shalerpublishing.com/

On the back cover of the book where it gives you an idea of what the book is about, it asks “Are you trying to cope with depression, chronic fatigue syndrome, grief, anxiety, lingering illness, or imminent death?”

The story takes a look at the spiritual side of Connie Bricker Shaler and her poor health spanning a twenty-eight year period. It is her spiritual journey.

a_voice_of_hope“A Voice of Hope” doesn’t read like a journey at all. It reads like a Christian self help book or a Christian devotional book. The key words printed on the back cover imply it is being marketed as a Christian devotional book. As such, it is a good book.

Sadly, it doesn’t talk that much about her depression and Chronic Fatigue.

Based on how this book was presented to me and based on what the back cover said, I went into the book looking for a story of a person and how sick they were with depression and Chronic Fatigue. How did those illnesses affect her ability to carry on or did those chronic illnesses interfere with relationships, work, mothering, etc. I expected those ideas to be the subject of the book since depression and chronic fatigue were mentioned as much as they were.

I need to say up front that this book is worth the read. It is thought provoking and inspiring. However, I was disappointed because it referred very little to how her spiritual journey affected her illnesses. Her journey was inspiring, but I would like to have seen how her journey was affected, step by step.

I would like to have had her explain how her CFS affected her daily living over time and how, during the flare ups, her spiritual encounters helped her. There is only a little story behind some of the narration and reflections and then it isn’t in any chronological order.

So enough bashing, because that’s what I feel like I’m doing. I don’t want to come across as bashing the book because it is a good Christian devotional book and if you go into the book properly prepared, I think you will find it enjoyable and inspirational.

I think she should do a book or ebook with just her poetry.

When I realized “A Voice of Hope” wasn’t what I expected, I didn’t put it down or throw it out. I kept reading. I read it like a devotional book, no longer looking for the correlation between her illnesses and here spiritual journey.

My copy of the book has my handwriting in the margins and many sentences highlighted or underlined. I was inspired by many of her thoughts and touched by many of her poems. I have some new outlooks on different aspects of my journey with fibromyalgia and chronic fatigue syndrome.

Her typical format is to start of a section with some narrative, an occasional original poem and then some related quotes and then a reflection box which often summaries that section and asks probing questions getting you to think about what you have just read. Often those reflections encourage you to think and apply her ideas in your life.

She includes many of her poems and they are very good. Her narration is good also. The book is laid out nicely and it’s got a good readable font. Its 179 pages.

I should have been able to read it in a few hours, but it took several days of reading to get through it because it caused me to think and ponder. It was an inspirational book more than it was an entertaining book. The only real complaint is that for me, it would have been nice to have her narrative and poems interspersed with the chronology of her illness so we knew how she was feeling and what she was thinking about at the time certain events happened. It would also be nice to know how life and her chronic illnesses are doing at this later stage in her life.

I endorse this book wholeheartedly and recommend reading it from the standpoint of being a Christian devotional book more than anything else. I would lovingly encourage her to get it on ebook at an affordable price because this book as the ability to touch and inspire many people, both with and with chronic illnesses.

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