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.

Three Good Days Is All You Get

Three Good Days Is All You Get

 

This week, three decent days of pain management is all I got. My average pain is around a six to seven. The last three days have been around a four or five. Mostly a four. Of course nothing ever goes completely right. I have had huge bouts of chronic fatigue but the pain has been manageable.

I am frustrated. On the rare chance I get to a point where the pain is tolerable, I get greedy and I want several more days pain-free.

fibrochampionsblog_frustration_no_morethan3good_daysI am also frustrated because when I am having one of those rare episodes of good pain management I get nervous for fear that the pain will blow up, out of no where and it makes me leery as to what I try to do. I’ll take the pain-free days even though they wont last and even though I don’t always takes advantage of a pain free day.

They never include frustration as a symptom of fibromyalgia. But the frustration is as real as the pain itself.

Having said all that, I am grateful for three decently managed semi pain-0free days this past week.

Fibromyalgia – Critical Thinking

Fibromyalgia And Critical Thinking

There is never any shortage of articles or advertisements claiming to help treat fibromyalgia or cure fibromyalgia. Every one of them leads directly or indirectly to money. No one wants to give that information or product away for free.

When you are in chronic pain all the time, day after day, week after week, month after month, year after year, you make for easy prey for some husker that will sell you something or teach you something for a modest fee, of course.

fibro_critical_thinkingIt can become expensive and costly to believe every claim or advertisement you hear about fibromyalgia.

There are people who aren’t selling anything, just passing on information. I do that all the time. I am not selling anything from my blog posts. I do pass along helpful information. Regardless if it is me or someone wanting to sell you something, it is important that even though it sounds like a wonderful thing you need to think it through. Use critical thinking.

For example, whenever I think of anyone either sharing information on nutrition to cure fibromyalgia or selling a book about nutrition that will stop fibromyalgia in its tracks I consider the fact that the latest information over that last three or four years is that fibromyalgia is not an autoimmune illness, it is a neurological illness. If there are certain types of food with certain types of herbs or trace elements, chances are, you can get them in a supplement form and not have to buy a big expensive book to see if it works. Chances are it will never work. If those elements or herbs really cure fibromyalgia, chances are the pharmaceuticals would synthesize it and make it available to everyone.

Don’t get me wrong, I am all for eating as healthy as you can afford. Good nutrition is the secret to overall wellness. If you are disabled and on a strict limited income, you have probably noticed that produce and other healthy food are expensive.

When you are involved in critical thinking you never take anything at face value. You look into it and compare the assertions to your own research. You don’t accept what’s being presented to you without thinking and researching the idea. Don’t read one article an assume it is right for you. Dig in a little and see if after your research and critical thinking, is this right for me?

Troy Wagstaff

14 Tools To Manage Fibro Fog

14 Tools To Manage Fibro Fog

Reduce The Stress Of Fibromyalgia

fibro_smart_phone_management_tool

There are more than fourteen tools available that not only help manage fibro fog, but can also help in reducing some of the stress of having fibromyalgia.

For those of us with Fibromyalgia, we are always in constant pain and for most of us with fibro, we also suffer from fibro fog. Whether you suffer from fibro fog or not, these tips will help you with fibromyalgia and will help even more if you have fibro fog.
With a smart phone, we can lighten up our load in a major way as we limp along in a life filled with lost memories, foggy brains and chronic pain.
My smart phone is an iPhone. All smart phones have these features built into the phone or have equivalent apps.

From experience, I am going to share with you the tools I use on my smart phone to help with fibro fog and fibromyalgia.

1. Camera: Having a camera in your pocket or purse is a great tool for memory. If you see something that you’re afraid you’ll forget, then take a picture of it. You can use the camera to take pictures of your pill bottles, instructions from the doctor or anything else that you’re afraid you might forget. When looking at the pictures they can be enlarged so it is easy to see the details.

You can reverse the camera for selfie’s. That also makes for a good mirror. If you want one less thing to carry around in your purse, then instead of taking a selfie use the camera to see how you look before going into an appointment or whenever you need a mirror.

I discovered one time, while scrolling through my pictures that it was like a photo album. Looking at the pictures I had taken for fun and for fibro reasons, I had memories I otherwise would have forgotten. It was fun to recall events that I had forgotten. Take pictures liberally and back them up from time to time on a hard drive or thumb drive.

2. Along with the camera to help you not forget things is the Notes App. You can open the app and type messages to yourself. You can use the Notes for a shopping list. If typing with those tiny keys is hard, or in my case frustrating, then use the dictation button. Just to the left of the Space button is a button with a microphone. Click it and it will record your voice and type your words in the Notes page.

3. Along with, or in place of the Notes App, you could use the Voice Memos app to speak instead of writing with those little buttons. It’s a built in digital recorder. Personally, I prefer to use the voice recorder in Notes. But that’s just me.

4. The Calendar App may become your new best friend. When I started to use it, the first five or six times it seemed clumsy, but after I got the hang of it, it became much easier to use. We are always going to visit doctors and we make many appointments. After you place your doctor’s appointment in the calendar, if you try to schedule another overlapping appointment, you will see the mistake and adjust your appointment time. With your smart phone you can see when your other appointments are, without getting up and going to the calendar on the wall. With the calender app you don’t need to worry about losing all those appointment reminder cards.

5. The Reminders App that comes standard on my iPhone will remind me of upcoming events. It ties into the Calendar App as well. If you press the little blue “i” after typing in your text reminder then you will go into the Details section of the Reminder. You can choose a day for the reminder and set an alarm and a time for that alarm. If it is something every day like taking your pills at a certain time, then you can repeat it every day, every week, etc. You can further edit it to a monthly or yearly reminder. There are other features like Priority and Notes if you have complicated instructions for taking your MEDs.

6. Voice Activation. Several of the things we have mentioned already and some yet to be mentioned can be voice activated by clicking on the Microphone button or by holding the button down at the bottom of your phone. I use it a lot to set alarms. It can be used to set Appointments, create Notes, create Reminders, play music, check the Weather, and you can ask for directions to wherever you want to go if you have a GPS map app on your phone.

7. Music. Being able to play music can be calming, entertaining and fun.

8. Game Apps can help you kill time during a long wait at the doctor’s office. If you use strategy games, it can count as physical therapy for your brain and fibro fog.

9. The Weather App is essential during winter of periods of bad weather. We all know how bad weather can affect our stiffness and pain flare ups.

10. The Calculator is a nice convenience. It can be voice activated. This is helpful for finding the best value when shopping or helping you with your MEDs.

11. Some smart phones allow you to adjust the text, making it larger or smaller.

12. Flashlight App I had to download the Flashlight app. It has been helpful in so many ways. If you’re having trouble at night finding the right key, use your flashing light. Need to jump start your batter at night? Use your flashlight.

13. Google Maps or other GPS mapping apps can be used to get you around town, or can guide you on your vacation. I prefer one such as Google Maps that is voice activated.

14. Compass App is self explanatory to some extent. But it also has the numbers at the bottom of the compass that tell when you are at any given moment in the form of longitude and latitude which can be used in emergencies to tell emergency personnel where you are at.

If you have an iPhone you can ask Siri, what she can do and you can get a Tips app to learn how to better use the phone. The more you use your smart phone the more helpful it begins to be. I downloaded the Kindle App so I can read books while I am in the waiting room in the doctor’s office. There are hundreds, if not thousands of free e-books on Amazon you can download or read from the cloud.

Other useful Apps are games, email app for your email program, Pinterest, Facebook, Browsers, Bank apps and whatever else makes sense for you. I almost forgot to mention medical apps that can record all medicines you’re taking and a list of medical problems you have, allergies and a host of other medical information. I am surprised by how many of these apps are free to download.

When I first became mobile after a couple of years of trial and error, I carried around a bag to put many things in that bag that I can now have in my smart phone which can be carried in my pocket. I also bought a protective covering that protects against scratches and damage incurred from dropping the phone.

Sometimes when I go on about how cool a smart phone can be for someone like me with chronic fatigue and fibromyalgia, I almost forget that it is a phone as well. I can talk or text with anyone around the world. The smart phone is great non medical technology for those with chronic illness like fibromyalgia, chronic fatigue, chronic pain, or Lyme disease to mention a few.

Gone But Not Forgotten

Gone But Hopefully Not Forgotten

A Resurgent FibroChampion

blog_meme_gone_not_forgottenI have maintained a low profile for the last month and a half. I have been working on finishing my first novel. I first started writing my Blog, FibroChampionsBlog at CallahanWriter.com to promote the cause of fibro awareness. I then realized that, having fibromyalgia myself, for more than thirty years, one of the things we need besides a cure is validation and inspiration. I’ve been working on adding posts related to that way of thinking. I have a set of memes or graphics that I will be adding to my Blog shortly, which came from my rough draft of the novel I am working on. I think most fibro patients or fibro champions, as I like to call us, will appreciate them.
After writing off and on for a while, mostly for my Blog, I learned from my neuropsychologist that fibro fog affects the body much the same ways that brain damage or traumatic brain injuries affect the brain. Just because you may have brain damage or TMI doesn’t always mean the damage is permanent. Some or all of the memory portion can be reclaimed by physical therapy.
fibrochampionsblog_9Yes, physical therapy. I’m not talking about exercises that work the muscles and joints, but exercises to physically work your brain. I heard an ad on the TV or radio about seniors learning a foreign language to help them keep their memory sharp. I ask my doc about that and she said it is true. She went on to say that any language-art affects the brain the same way.
I asked about writing, would writing have the same effect as learning a foreign language? The answer was yes. She went on to say that any activity that works the brain actively, like reading, computer games that need strategy, writing, learning languages, puzzles, crosswords, sudoku etc., they all have the same effect. Unlike the muscles in our body that need time to rest and recover between workouts, the brain can and should be worked out every single day for best results.
I like reading and writing. In the past two years I have read about a hundred books. I have written a lot. Somehow, I got the idea to write a novel where the protagonist, the main character has fibromyalgia and has to deal with it through out the story. I wanted the story to have fibromyalgia as a conflict against the main character.
I have spent six months writing the book and completely thrown away one story line and finally found the characters I wanted and then threw out two plot lines until I finally settled on a plot that could go the distance.
You all know how fibro fog does more than affect the memory, I finally had what I wanted, I just needed to complete the rough draft. I had serious doubts I could finish it and so I finally put everything aside and forced myself to do nothing else but wallow in pain and work on completing the novel to the first draft level. I needed a story laid out from start to finish. I needed it as much for a sense of completion. Big projects can be difficult for us fibrochampions. Now that I have finally completed the rough draft, I have a sense of major accomplishment and I feel like I can take the story all the way to publication. That won’t be for a few months, but I feel like I can actually do it.
AND I can say that after about eighteen months of physical therapy for my brain I am remembering things a little better. I still have serious memory issues, but over the last couple of weeks I have noticed a small difference in my memory.
What I want to say to you all is that physical therapy for the brain works and most of us are disabled and have the time to work the brain every day via computer brain games, reading books, especially creatively written books. Writing is good. Languages are good. Eighteen months will pass where you try it or not. Two years, three years, five years, or ten years will pass by, whether you try or not. Everything that counts as physical therapy can be done in bed, on a couch or recliner. Good luck.

Fibromyalgia Word Search Puzzle

Fibromyalgia Word Search Puzzle

fibro_word_search!

1. CHRONIC PAIN, 2. FIBROMYALGIA, 3. HEADACHES, 4. SENSITIVITY, 5. IBS, 6. VISION PROBLEMS, 7. ZANAFLEX, 8. TENDER POINTS, 9. MUSCLE SPASMS, 11. FIBRO FOG, 12 CONFUSION, 13. LORTAB, 14. DEPRESSION, 15. ANXIETY, 16. LYRICA, 17. FATIGUE, 18. C 19. INSOMNIA, 20. DOCTOR , 21. HIP PAIN, 22. CLUMSINESS, 23. STIFFNESS, 24. JOINT, 25. CRAMP.

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A Day In The Life Of Fibromylagia: A New Daily Column

A Day In The Life Of Fibromyalgia: A New Daily Column

Since this blog became primarily a fibro blog I have had lots of support and a lot of likes and comments to my posts on fibromyalgia. The trouble with having fibro, among other things, is that when you have fibromyalgia you can have a period of feeling relatively good followed by a period of feeling crappier than usual. Your efforts reflect these ebbs and flows. I still plan on doing the articles that I have done in the past, but I am going to add a daily post on my adventures of the day with fibromyalgia. I’ve had fibro for thirty-one years and it has been officially diagnosed for almost twelve years.

a_day_in_the_life_of_fibro1_everyday_stuff

Because of that, I am wise enough to know that my daily efforts won’t be seven days a week, week in and week out. But that will be my goal. I will talk about how my day went, how my pain is and other symptoms. It will give you a good glimpse into the life of a fibro champion who is male.

This post will cover one small thing. I went with my Mother-in-law to a yoga for senior’s class and it’s Saturday and I am still paying for it. I have been tremendously sore and my message tool broke a week ago. I’ve managed to get by, barely with the use of heating pads, soaks in hot water in my tub. I’m just now feeling good enough to blog. My next blog will be about Yoga, as I have more plans about it. Stay Tuned.

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