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

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.

laters

Invisble Illness Week 2016

*made with 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…

7_26_16

Health update

After much thought, debate, talking to myself, answering myself and napping; I have come to a conclusion.  I swore two and half years ago that I would not make this blog into a “woe is me, I have a chronic illness” diary of sort.  I know for certain, that I don’t want to read about it, so why would I write about it?

The truth is, I have a chronic illness! There is never a moment in my life that I don’t deal with it, explain it, whine about it or work around it.

Dragonflykeep will be about the journey of me, how I manage my illness, my hobbies, my freakish delight in paper goods and a few health related posts plugged in as well.  You may not really see much change, but in my head I have finally came to peace with the focus of my blog. With this, I will be recommitting my collaboration with Spoongeeks and will have monthly topics that will be discussed here on my blog and a video on you tube.

Yea, it’s the same but different.

Be sure to check the Spoongeeks site for my FrainBoggedMoments vlogs!

Invisible Illness Week

Once again, I am letting my readers know about a the ministry that I support and the awareness they bring each year through Invisible Illness Week. This year’s theme is “I am just one..”

I hope you will take a moment to check the website and review the podcasts and videos.

This year the week starts on the 8th and runs to the 14th…check it out here

Lissy

InVisIble ILLneSs WeEk

This week is the National Invisible Chronic Illness Awareness Week (9th – 15th). I participated last year with a weeks worth of posts but this year I am going to be participating in the forums and chats. If you have been reading my blog, you are already aware of my illness. As usual, the last Tuesday of the month is my health update and I will share with you what I learned from the conference.

This year, the theme is I choose to…{fill in the blank} Check back on the 25th and see what my answer will be!

Source: Invisibleillness.com

Source: Invisibleillness.com

FiVe THinGS

Lord knows that I am in no way a certified expert or giving any medical advice on dealing with fibro! However, I have learned some things over the past year that I would like to share in the hopes that it helps some one deal with their chronic illness.

So here goes

1) Make your bedroom your haven!

Wrap yourself up in comfort, get that heating pad you always wanted (check, your FSA or HSA may cover it) and enjoy your private sanctuary. Lots of pillows and good lighting. The works. We spend a whole lot of time in this space…make it yours! And, MAKE YOUR BED! Why? Because I feel that I get a more restful nights sleep…don’t know if it’s a psychological thing but I do.

2)  Use it or Lose it

Get creative! Grap some old school crayons, coloring book and have at it. Not your thing? Crosswords. Wordsearch. War & Peace. Whatever it is that engages your mind. Do one little thing each day that unleashes those molecules in your head. Why? It’s a good distraction from a day spent in pain. It allows your brain to focus on something other than your pain!

3) Inner Peace

In your newly created safe haven of a bedroom, create a meditation space or a yoga space. I may read some scriptures or practice meditation {which is really hard for me, but ya gotta start somewhere}. Stop focusing on the busy and what you can’t do or didn’t do that day.  I can easily wear myself out just shopping for groceries, so allowing myself a moment of quiet is spectacular!

4) Write it down!

Um, yeah, we fibro peeps have this thing called “Fibro Fog”. It’s not just your ordinary “why did I walk into this room”, it’s “how did I wake-up, drive a car and why did I walk into this room?” I am a huge advocate for personal planners (been making my own for a few years). I also found an app that allows me to monitor my pain and record what days are flare days and what the triggers were.  It doesn’t have to be fancy. Just jot down your appointments and reminders. You’re gonna need it!

5) Acceptance

In preparing this post, I re-wrote this section a million times it feels like. I am a noobie with dealing with chronic illness but I also come from a family of recovering addicts and one of the hardest things to deal with in illness or addiction is acceptance. You will know when it happens. There is a “click” in your brain that suddenly changes your focus.

I have already written on how Chronic illness changed my life. With acceptance, I have come to understand my limitations, what is important and what to let go. This is not to say that I won’t have bad days. It’s not to say I won’t push myself on a good day and have to sleep 14 hours to make up for it. It means that I now have a new journey, quite different from all the rest. Most importantly, learning that this is my acceptance. Not acceptance of what I am going through from others.

That’s all I have to offer for now. Take what you need or leave it be…it’s all good 🙂