WHAT TO WATCH, WHAT TO WATCH?

For those of us suffering chronic pain, anxiety and depression, Friday nights are usually spent curled up watching some Netflix or other entertainment on the good old boob tube. Making the decision to watch some television is easy. It is what we are going to watch that brings on the following conversation with our depression and anxiety:

Hope you find something good to watch tonight!

Contributed by: Barbie Burr & Janet Mullen

MOMENTS IN THE MIND OF A MAJOR DEPRESSIVE

Our co-founder, Barbie, suffers from major depressive disorder, anxiety and chronic pain amongst other things. She came up with the idea of doing some memes that show the internal (and, if she is anything like me with talking to myself, sometimes external) conversations that go on while trying to make just normal everyday decisions.

These were the first in the series that were posted to our Facebook page for ACHES,
www.facebook.com/ChronicHealthSupport:

ON GOING OUT AND MAKING PLANS

SHOULD I EAT?

THE DREADED ER TRIP

EVEN SHOWERING IS UP FOR DISCUSSION

Please feel free to share these and look for more on this blog and on our Facebook page.

Contributions by: Barbie Burr & Janet Mullen

A MAJOR DEPRESSIVE'S INTERNAL THOUGHTS ON CLEANING

Dealing with major depressive disorder, anxiety and chronic pain can lead to some pretty interesting conversations with oneself.

Sometimes it is easy to listen to our depression and anxiety and not get things done. Our thoughts at ACHES is you got to pick your battles and do what you can when you can. Don't always be lead by your inner dialogue.

Contributed by: Barbie Burr & Janet Mullen

APOOFANY - Sniglets for the Sick

Here is another Lumpy Louise Sniglet for you all.

Nothing like having that AH-HA moment when the topic has already passed. Especially if it has been more than a few moments later...

MY LAST PAIN FREE DAY

As a chronic pain sufferer I look for the little things. Just a few hours of low pain makes me happy. I am never without pain. I haven't been for just over 7 years when I suffered a supposed abscess tooth that turned out to be the start of something entirely different that still pains me to this day.

But, that isn't entirely true. There was one day about 4 years ago that I went pain free for a full 24 hours. It was, thankfully, a Saturday. (It would have been a waste if it happened on a work day). It was late Spring and wasn't totally gorgeous out but in my mind, as I think back, I want to make it out to be the most glorious, sunny and 70 degree day ever.

I honestly didn't realize it was happening at first. I carefully took each step, as I had the two and a half years prior, thinking my knee or hip would surge an immense amount of pain into my body causing me to fall as it had done so many times in the past. As I started to get more confident, I remember thinking, "This is it. I actually beat this thing."

I didn't do anything special that day but I enjoyed just doing the normal things I hadn't been able to do for a while. I remember that I took the dogs outside and played with them for a long time and I did some chores around the house. These things probably don't seem so glamorous to everybody, but just to do what others take for granted had meant the world to me.

When I woke the next morning and I had stiffness in my hips and it took, what had become my normal, 5 minutes to get out of bed, I was upset. I tried to remember what it was I did in the days leading up to my pain free day and nothing different than what I had done in the past two and a half years came to mind.

I am glad I had that day but as the days, weeks, months, years go by and I deal with pain constantly, I wish I knew it was to be my last. I am still looking for another one, that elusive white whale, but I am always thankful for the low pain days (or few hours) I get every once in a while.

It is the little things we with chronic pain need to be thankful for.

Contributed by: Janet Mullen

Janet suffers from a rare, progressive illness called Dercum's disease. For more information on Dercum's, visit lipomadoc.org

BIPOOPER - SNIGLETS FOR THE SICK

If you are too young (or just were not into SNL) Sniglets were made popular in the 1980's by comedian Rich Hall. They are defined as "words that do not appear in the dictionary, but should".

Barbie and I have come up with dozens of these so far and we just got started.

Lumpy Louise is a cartoon character I made up (loosely based on me and my struggle with Dercum's disease). We thought, who better to present our version of Sniglets to you. for more Lumpy Louise cartoons visit lumpylouise.blogspot.com

Look for more "Sniglets for the Sick" a few times a week. We hope you enjoy and share with others. Very sorry if you can relate to them though.

Peace and all that,

Janet

IN SICKNESS AS IN HEALTH

1985.

We are the World was the number one hit of the year. Followed by Take on Me at number two and I Want to Know What Love Is was at number three.

When my wife Carol and I exchanged our vows thirty years ago this month, we had a pretty good idea what love was. It was what we felt for each other. It was the commitment we made to each other. And it was the confidence we would be there for each other. No matter what.

But we had no idea how much we would be tested.

From the beginning of our marriage Carol's health was an issue. She had epilepsy, and within a year her job as a hairdresser had to end. She would have a seizure in the middle of cutting a client's hair. And I went to get her, assuring her that everything would be all right.

Then there was the overdose of phenobarbytal. The specialist screwed up, prescribing double the right amount. And I again had to go to her side, this time in the hospital, to tell her it would be all right. That error cost us our opportunity to have children of our own. But we moved forward.

And so it has gone for 30 years. Each time she (and, on occasion, I) had a medical crisis to face, the other would be there, providing assurances that everything would be all right.

Except it's not all right. She now has Dercum's Disease. And cognitive impairment. And no strength, even to get a glass of water for herself. It's like she's 30 years older than her actual age.

And I'm exhausted. I've never fully recovered from a quadriceps rupture and the three surgeries it required. Nor from the concussion I received in a car accident a year ago.

We each have every reason to be disappointed in how our marriage has turned out. But we're not. Nor will we be.

Yes, illness and injury have visited us far more than our share. But that has meant that we have had the opportunity to become closer and dearer to each other.

Yes, my dream for many children didn't happen. But the one child we adopted has turned out well, and he is prepared to step in if something happens to me to ensure his mom gets proper care.

Yes, my faith has been tested, but God has always been there for us, meeting every need.

30 years down. And, I hope, at least 30 to go, living up to the vows we declared decades ago:

For better, for worse,
For richer, for poorer,
In sickness as in health.

contributed by: Earl Blacklock

10 THINGS WE CAN'T LIVE WITHOUT

Barbie and I have been just about on the same progression path with our syndromes/diseases/illnesses and after over 6 years, we both have found some things that help us deal with our situations tremendously. We came up with a list of 10 things that we would be very hard pressed to live without. The list below is in no particular order. 

1) Computer/Smart Phone/Tablets

     For me it is my Kindle. I watch movies and TV, read books, get onto social media sites, look up information, etc. (you get the picture). These items keep us connected to the outside world and give us about 99% of our entertainment. Without them we'd be lost. Of course Wi-Fi is a given here too.

2) Facebook (and other social media sites)

    OK, this is one we love to hate! My first foray into finding people that suffer from the same rare syndrome I have was on MD Junction and though that helped it lacked a personal touch. Soon after I found Facebook was much more my thing and discovered many people that not only shared the same illness but a lot of other things as well. Facebook, in all its frustrating horribleness, will always be more of a comfort than a headache to me and I am grateful for all it has brought me.

3) Sports Bras and Yoga Pants

    Basically all forms of comfortable clothing but for me as long as I have a sports bra and yoga pants on with a t-shirt over it, I can go anywhere. It is the "in fashion" for doctors’ visits, prescription pickups, drive thru Dunkin Donuts runs and even allows for easy movement in the grocery store. Barbie's favorite summer look: boxer shorts and a tank top with a loose t-shirt thrown over it to pull the look together.

4) Healthy Snacks

    Yes, we all need to be eating healthier but sometimes it is hard to even pull ourselves up out of bed to put something together. Keeping healthy snacks around that are an easy go to for when you can't get up enough energy to cook is key to our survival.

5) Baby wipes

    Why baby wipes? Well, they are a quick and easy way to clean up if someone is coming over and you don't have the energy to take a full shower. They are also great after sleeping if you are prone to night sweats and don't jump right out of bed to take a shower or bath. Don't even get me started on their uses for those of us with IBS...

6) A Place for All Our Pain Relief Items

    About 4 years ago I got to the point with my pain that I'd try anything. I must have a dozen different creams and ointments and another 2 dozen different OTC or natural remedy items at any given time. Though not all were successful, a lot work on different levels of pain or on different parts of my body, so I am hard pressed to throw any of them away. I keep them all in a Rubbermaid bin right next to my bed and visit it all the time to combat whatever muscle, bone, joint or nerve pain that decided to pop up that day.

7) Grabber Reaching Tools

    I currently own 4 of these and have them strategical placed around the house. Side Bar: I also put a trash barrel (kitchen size) in almost every room around the house so I never have far to go to throw things away.

8) Paper Goods

    If cooking gets us so tired, imagine what washing dishes does? I keep a plethora of paper plates (I like the horrible styrofoam ones because they are sturdy) and plastic utensils on hand at all times. In fact, I believe I have forgone making something to eat and opted to go out instead if I was left to use actual plates and utensils because I dreaded the cleanup. One other thing I use a lot while cooking is aluminum tins. That way I can throw them away after cooking is done or they make it easy to store leftovers in.

9) Netflix

    I don't believe I need to explain this one but will give honorable mentions to Hulu and Amazon as well.

10) A Pet

      Dogs and cats (and all other animals for you non-conventional people) serve many purposes. They give us companionship, they are good at sympathizing and don't mind when you lay around all day (in fact most my pets loved that I lazed around with them hours at a time). They also give you a purpose to get up and take care of their needs which in turn makes gives you an opportunity to take care of yourself. 

I hope you enjoyed our list that we put together and please leave a comment if you have ones you would like to add.

Contributed by:

Barbie & Janet