Progress Not Perfection

So, after thousands of dollars and a horrid night’s sleep for a home health test, the results are in.  Yours truly has no significant result’s pointing to any kind of apnea. I was off the charts – in the negative sense.  I do however have insomnia. Srsly? I could have told them that. My GP would like me to see a psychiatrist – ha ha ha no. I am booking an appointment my naturopath lady!

In other health related news, I lost two pounds! Recently, Mrs. Monkey and I were talking about being hyper vigilant.  It’s my term for being crazy focused on a fixed item. I started with doing the Low Carb and just felt lost.  I switched it up recently and it paid off.

I am now making sure I reach a daily goal of walking at a minimum of five thousand steps. With that, I cut my calorie intake, portion control, drank a boatload of water and tracked the heck out of it all. Luckily, the peeps at Fitbit make it all possible with their app.

I would have been beyond ecstatic if I had lost just a half of a pound, but two! Amazeballs!

lissy

 

My Dog Eats Better Than Me

Seriously, she does. My pampered pouch enjoys a rather gluten-free, non-gmo eating life. Even her treats are natural!  Her hooman on the other hand is the fast-food queen of Central Arizona.  Why is  this big huge disparity? Well, she has no thumbs and is handed a bowl of food and told to eat!

I know a lot of issues with health today are linked to what foods you eat (whether you believe this or not, I’m not open for a debate). This said, I’ve got to develop an “Eat Right or Die” attitude towards what I put in my body. My research assistant Mrs. mOnkey, has introduced me to a ketogenic lifestyle. From what she has shared with me and my own research, ketogenics has been known to help those with fibromyalgia and aid in the healing of the numerous side effects our diagnosis comes with. It’s similar to Atkins with the low-carb, high fat food choices.

There is just one major issue…I have to cook…like food and eat veggietables. Ugh. Notice I didn’t call it a diet.  Diet is a restrictive word that immediately puts my brain on high alert to seek out all the chocolate in the house…we don’t want that now do we?  Instead, it will be a lifestyle choice.  I will choose to eat crudité for snacks sans the ranch dressing dip. I will endeavor to broaden my cooking skills by cooking a keto-friendly meal for me and my family. I will buy grass-fed cow butter and pick fresh, real food over greasy carb loaded curly fries.

Something has to change and sadly, I see, it is me. Why did I have to pick “focus” for my word of the year!?

Urgent

Now that I have your attention…let’s talk about planning.

I know for my self that the best laid plans of mice and women often go astray! This has lead me to the Eisenhower Method for planning and I want to share it with you. There is a quote out there in the world attributed to the General Dwight D. Eisenhower that loosely states “What is important is seldom urgent and what is urgent is seldom important.”

I have seen many systems of time management over the course of my professional career. Franklin Covey, Bullet Journal, Crisis Management, you name it.  I work in an industry that is driven by time sensitive data and date driven closing days. Though I personally have moved to other departments…this is my daily life.

For this series, I wanted to share with you my quirky version of this method. Depending upon the multitude of sources, the Eisenhower method generally consists of four parts: 1) Urgent  2) Important 3) Delegate and 4) Stop.  Since my life comprises of no support staff, I’ve removed Delegate and have Note To Self and Stop is now Some Day.

In this post, I will begin with Urgent.  What would be an urgent task? For me, it is making doctor appointments, refilling medications, calling the doctor to make sure the medications are refilled, filling an empty gas tank and so forth. These are the “kitchen is on fire” type of tasks. Think of it as tasks that need to be completed immediately. When I plan, these tasks are notated with a red star next to it so my fogged-up brain knows to deal with that task first.

Determining what is Urgent versus Important will be up to the individual. What may be Urgent to me could be a Note To Self for others. {Which is the whole point to this method}. For example, let’s take going to the post office. Would this be Urgent or Important. The scenario is this…I have four medical co-payments to mail and a birthday card to mail but the date is two weeks away – and of course, I forgot stamps.  I would list “Pay med bills” and “purchase stamps” with a little red star on my planner while “mail birthday card” would be listed later as it doesn’t carry urgency for me.

As you review your daily to do’s, begin to ask yourself, “Is this Important?” “Is this Urgent?”

Next month, let’s delve into determining what is Important.

lissy

Here’s the song that is playing in my head as I write this

 

One Little Word

Last year, I had the grandiose plan to join Allie Edwards and her One Little Word project. I picked accountability and got my class schedule. I was ready!

Just with everything I plan to do, one day or several days into it all comes a flare. I often find it hard to go back, find where I left off and start again. I promised myself “No Photo Challenges” on Instagram for this very reason. My energy goes to my forty hours of work each week and I burn through what energy I have “catching up” on the weekend.

When I thought about a word for 2017 I was torn between Energy and Focus.  Energy, per Webster’s definition, is the strength and vitality required for sustain physical or mental activity. A very wonderful, powerful word to explore – don’t you think?  And there is Focus, whose synonyms are heart, core, and focal point. The center of interest or activity. As I sit here and write this…I am still torn on which one to pick.

I made a mini mind map in my planner on what I needed to focus on in 2017. Health – well, duh. This encompasses a change in eating lifestyle, implementing fitness, menu planning, blah blah blah. Self Care: basically, not allowing myself leave the house looking like ass. Faith – Read the bible end to end; daily devotions; structured devotions; meditation through journaling. And of course, grow this blog, YouTube, re-launch Etsy…I’ve got plans!

Though it will require Energy to gain Focus, I am going with Focus. Mostly to remind myself that despite being ill, I won’t lose sight of my plans, that it really is ok to pick up where I left off and the goals I set for myself are obtainable.

Do you have a word for 2017?

lissy

Words & Images

I have mentioned before that there are many stories and pictures that inspire me or I can relate to in some ways as a person with chronic illness. These images I can not provide due to copyright, so I’ll give you an A to Zed list of words, or books, heroines and the such. You can also check out my Pinterest board that contain a whole lot of the following…

A – Alice in Wonderland

B – birdcages

C – comfy

D – drugs (medicinal ones)

E – energy (I has none)

F – fat

G – (Oscar) The Grouch

H – Honey Badger

I  – I miss the person I used to Be

J – Jealous

K – Kindred Spirits

L – Laughter is medicine

M – (Bad) Medicine – Bon Jovi

N – Nightime, is the worse time

O – One Spoon at A Time

P – Princess and the Pea

Q – Won’t Quit, Can’t Quit

R – Rest

S – Self Care

T – Turtle paced life

U – Spoonies Unite!

V – Venting

W – Weekends spent in jammies

X – (srsly can’t find anything to relate to X)

Y – Y indeed!

Z – I need more ZZZZzzzzzZZzzz’s

Invisble Illness Week 2016

*made by picmonkey

Thirty Things About My Illness

Thirty things about my invisible illness you may not know

1. The illness I live with is: Chronic Fatigue Syndrome & Fibromyalgia
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2010-2011ish
4. The biggest adjustment I’ve had to make is: slowing down
5. Most people assume: I am being anti-social
6. The hardest part about mornings are: Not feeling rested
7. My favorite medical TV show is: Blacklist, NCIS
8. A gadget I couldn’t live without is: iPhone
9. The hardest part about nights are: falling asleep, I toss and turn for hours
10. Each day I take __ pills & vitamins. (No comments, please) 21 <–> 4
11. Regarding alternative treatments I: used acupuncture and massage therapy
12. If I had to choose between an invisible illness or visible I would choose: neither
13. Regarding working and career: I am looking into work from home employment
14. People would be surprised to know: I quit antidepressants cold turkey
15. The hardest thing to accept about my new reality has been: the limitations
16. Something I never thought I could do with my illness that I did was: speak up for myself
17. The commercials about my illness: are stupid, the pain never goes away
18. Something I really miss doing since I was diagnosed is: running
19. It was really hard to have to give up: being busy, all the time
20. A new hobby I have taken up since my diagnosis is: Planners of all sorts
21. If I could have one day of feeling normal again I would: probably sleep
22. My illness has taught me: to enjoy the small things
23. Want to know a secret? One thing people say that gets under my skin is: you and your hangups
24. But I love it when people: You have done enough, it’s ok to rest
25. My favorite motto, scripture, quote that gets me through tough times is: I’ll Get There, Eventually
26. When someone is diagnosed I’d like to tell them: I am here if you need to talk
27. Something that has surprised me about living with an illness is: adjusting to change
28. The nicest thing someone did for me when I wasn’t feeling well was: cleaned my house
29. I’m involved with Invisible Illness Week because: it’s part of my life and I wanted to share my story
30. The fact that you read this list makes me feel: understood & accepted

Invisble Illness Week 2016

*made with picmonkey

An Open Letter To My Friends

Welcome back! Did you get a chance to review the topics and discussions over at the Invisible Illness Week Facebook? I hope you did.

Since 2012 I’ve received confirmation from “experts” of myalgic encephalomyelitis (chronic fatigue syndrome – CFS/ME) and fibromyalgia. It’s a double whammy – and I’m not even going into the various sub symptoms that each of these diagnosis brings to my life.

Four years ago, as a fledgling spoonie, I read a great book by Claudia Craig Marek called The First Year: Fibromyalgia. It had a passage in it that she encouraged her readers to share with their family and friends. So once again, with bits of updates, here is my open letter to my friends…

Fibromyalgia & Chronic Fatigue Syndrome isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia/CFS (though they might have wished they could on really awful days!!)  If you want to read articles or books about fibromyalgia/CFS I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia & chronic fatigue syndrome and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.

These are high maintenance conditions with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn’t help over half the people who tried them.  No matter how happy the people in the pictures look, there’s still no miracle drug available.

There’s no cure for me and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics & CFS have a different kinds of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, I have few colorful words I used to describe my  for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse.  Sometimes when I feel lousy, I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake.  I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational.  I know I am, but I can’t help it when it’s happening.

Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to spend time with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our friendship stronger.

Invisble Illness Week 2016

*made with picmonkey