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

This Is Chronic Illness

Welcome to Invisible Illness week 2016! This September will be my fourth year in my battle with Chronic Illness. To some, I’m just a babe in my journey.  Wherever you are at…I hope you will join me this week to bring awareness to those around us that just because you can’t see “sick” doesn’t me we are not fighting a very tough battle.

First, I’m going to send you away. Today, I would like you to review and see the awesome work  The Rest Ministries does for ALL those with chronic illnesses. Take some time to read, review and join in the conversations over at their Facebook page.

Tomorrow, will begin my week-long contribution to #thisischronicillness. I will be re-visiting some old posts, bringing you new information and poking a bit of fun along the way.


Invisble Illness Week 2016

*made with picmonkey

The Honey Badger & The Sloth

By now, you all have been introduced to the lingo that is for us Chronics. Spoonie being the most popular. Christine M’s Spoon Theory is the basis that a lot of invisible illness suffers use for an explanation for their illness.

And then there is for mine, The Honey Badger and The Sloth.  These two encompass what I would consider to worse parts of illness. I even poke fun at it myself on my Pinterest boards My Patronus is Honey Badger and Sloth Are My Spirit Animal.  If you have no idea what I mean by Honey Badger, if offer you this link.

So what does this have to do with myalgic encephalomyelitis and fibromyalgia? Honey Badger does not like noise, traffic, shopping malls, big crowds, small crowds, tends to anxious and will bite if bothered. This is when I have had my fill of the world, explaining my illness for the billionth time (no, it doesn’t get better, ever!) or just over done and cranky.

The Sloth in me cares very little about eating when she’s in a flare, has to bribe herself on the days it hurts to get out of bed, drinks way too much soda, has to have a reminder set to remind her to take her meds, and just doesn’t wanna. The Sloth doesn’t make plans (because they will change, always) and tends to not stray too far from her habitat or her bed.

As much as I try to keep the badger and sloth happy…often they follow me around town. Or work. My co-workers have been warned.

I honestly believe having a sense of humor every once in a while about your illness is an important part of self care. I makes you aware, accountable and if need be tractable. There is so much that goes with CFS/ME and Fibro. The side effects have side effects (and that doesn’t come with the medication). There is so much to be aware of that a little humor goes a very long way.


Dear Readers, I’m taking a hiatus for three weeks in September. I am happy to report that this is the first summer I have blogged my way through in quite a while! Much love to my blogging BFF Ms. Hope and the support of family and friend.

Let’s go get ready for Fall!

made by moi using picmonkey

made by moi using picmonkey

What am I doing now?

This was going to be a post on how frustrated I am with my illness and how it gets in the way of my “life”. I trashed it. Fact is, I’m ill and it’s frustrating. I had to remind my self, “take it day by day Lissy.” Nothing grows over night unless you have some magic beans and there’s suddenly a bean stalk right outside your door.

So I must remind myself…


Frida Kahlo – Feliz Cumpleanos

I recently picked up Issue 13 of Flow magazine (it’s a Dutch magazine for all paper lovers!) with the work of Frida on the cover.

Today I celebrate a woman who I consider almost a patron saint of chronic illness. Frida Kahlo. I’m not here to write about her bastard of a husband, politics or love life. I want to express how this woman (along with my mother, sister and Elizabeth Gilbert) has given me my permission slip to be a creative.

Thru her entire life, Frida dealt with illness (polio as a child) and pain from a very horrible automobile accident. It was during her accident recovery that she was confined to her bed and decided not to just lay about but to do something! She began to paint.

I have no excuse to hold back from being a creative creature by blogging, re-arranging a room, having a pretty planner or to learning to water color. Don’t let your illness hold you back from anything. It took me way too long in life to embrace even a fraction of the creative person I am.

If Frida can lay in a bed and paint. I can lay in my bed and write…right?


Mag by Flow Magazine- Peppermint Mocha by me

Mag by Flow Magazine- Peppermint Mocha by me

What’s Your Niche?

It’s the buzz word that keeps this blogger up at night.  What’s your niche? I don’t know, I write a blog. I’m a reluctant creative, that is blessed mess with a chronic illness…where do I fit in?
I promised myself four years ago that this blog would not be about my illness. I didn’t want to be one of “Those” people who constantly threw up verbal vomit onto the screen about what drugs that weren’t working and what was. Or what crazy side symptom was I experiencing this month. blah. blah. blah.
Here’s a crazy fact…I’m a blogger with a chronic illness. HELLO! I know, I was as amazed as you probably are. If I wanted to be all adult and honest with myself I would totally tell you that my illness is just a part of my as my faith, family and my dog. It’s not going anywhere and neither am I.
I get lost a lot (I can’t find my ass with a map) and I end up overwhelmed with all my thoughts and directions. It wouldn’t be so bad if this blog ended up helping others with a chronic illness, right? I am certainly not a medical expert but I know I have struggles and challenges that could be shared in a sassy way that is all my own.
But I also have to ask myself, what do I want out of all this? Ultimately, by the time I’m fifty…I want to be debt free, living in a one room house in Bisbee, AZ. Or Prague…but it snows there…so I will summer in Nice. Hey, I can dream. Ok, I will bring this down to reality. My goal is to be a source of inspiration, information and haven for those who are going through illness. We have to celebrate being alive among all the pain, doctor’s appointments and insanity that chronic illness can be.
I may talk about wanting to chuck everything I own into a large dumpster and living a minimal life (stop laughing Mom). Or how I love planners (in all forms). Crazy fun days like Napping Day or Peanut Butter Sandwich day. I may talk about a study that just came out on ME/CFS or Fibromyalgia. Or throw in a YouTube on my favorite paper goods shop.  Or maybe a review of a book. A short post about how the hell to plan your life when you struggle to get out of bed each day. It’s all going to be here…it’s all about the journey my friends.
I’m open to suggestions readers. What would you like to read about?

Health Statement

The first quarter of this year started out pretty rough health wise but I happy it was. I ended up with the flu but it really shed a lot of light into my current self-care plans and shifted my overall perspective on my state of health.

I am now able to differentiate between my metrics for fatigue and metrics for pain. My app, My Pain Journal, is keeping track of all of it. I could probably have tracked this in my planner. However, I tried and ended up confusing the hell out of myself.  Especially on the days I’m just happy to make it out of bed.

Now, if I would just remember to take my vitamins!

Yes, I know, they have an app for that.

This next quarter, I am keeping a food journal to see how my food affects me. I am still reducing my gluten intake and believe me, my body tells me when I have too much. Water and vitamins are also on that tracker. (I just keep forgetting them).

Changing my food and being aware (there’s that accountability thing again) of what I eat will be a fascinating challenge for myself.