Category Archives: hypermobility

Video Game Analogy

When you have a chronic illness it’s like when you are playing a video game you have an ‘energy’ bar that shows you how much energy you have. 576px-Video_game_health_bar.svg

As long as you have some on the bar, you can do things. But everything uses that energy. In a game it might be moving a rock, fighting a bad guy, searching for treasure.

In life it’s getting out of bed, taking a shower, making dinner, getting from the bed to the couch, etc.

In the game, when your energy bar is empty, you can refill it by eating, or just waiting for it to recharge. Not much different from life. piq_204130_400x400

Except with chronic illness, our energy recharge ability is cut in half or even by three-fourths of a normal persons.  For a lot of us, even our ability to eat properly is severely hindered. So our recharge just doesn’t happen with a nap, a meal, or a night of sleep (if we can even get a proper one of those).


For a chronically ill person, when our energy bar is low or out, we generally are forced to just stop. Completely shut down, like a robot when it’s plugged in to recharge.

This can take many forms. For me, it means that pretty much every Thursday I sleep. All day and all night. I’ve hit empty on my bar and I cannot do anything until I recharge. My brain fights me every second I try to stay awake, to the point of making me pass out just trying to go to the restroom. It’s done and refusing to operate.

For me it’s Thursday because I only get the weekends with my husband. 0e17c9c95fc0f259f60492edff1b3a5f--couples-in-love-door-ideasHe works 10-12 hour days during the week, so it’s usually breakfast-dinner-go to bed. Now that the doctors won’t allow me to work, I shifted things around until I landed on a day that gave me the most waking energy time with him.

I don’t think a normal person can understand just how bloody annoying this really is. sad-stick-figure-clipart-1You have to plan around it, because you know it’s going to happen. You can’t ‘save up’ your energy either. Resting on Monday won’t stop Thursday from happening because the simple act of living eats our energy bar faster than we can replace it.

Now imagine explaining this to an employer. Before the doctors forced me to stop working, I had to take medication to stay awake during the week and would pass out on Friday night, usually not to emerge from my bed until Sunday night. Every weekend.

Imagine what that does to your relationships. Your spouse, your kids, your friends.

I can’t tell you the number of friends, family, and absolute strangers say to me “You’re so lucky to be at home all the time, so much free time to do what ever you want.” grasp-clipart-facepalm Seriously. Like my idea of a “good time doing what ever I want” is passing out just trying to make it to the bathroom. Or forced sleeping for hours on end because my body has simply had enough and shut down. Or being unable to eat for days but still fixing a full, delicious meal for my husband. While I drool and wish I could even have a bite. Just one bite.

Or having days of dread before a mandatory doctor visit because you know that just taking a shower and getting ready to go to the appointment is going to be enough to wipe you completely out. So much so, that while you are sitting in the waiting room you will most likely come home with every single virus of every single person that has been in the office that day just because your body is too tired to fake an immune system response.


Just thought you’d like to know what it’s like to be a chronically ill human. It’s Friday, so I have a bit of a recharge from sleeping through yesterday. Too bad I blew it on writing this, ey?



Perspectives 1

Recently my husband and I had to travel out of town for me to see medical specialists that are not available at home. While there we lunched at one of our favorite restaurants. It’s a real treat for us because I do not travel well any longer and because it’s an extra expense. But it was close to his birthday, so we called it a birthday treat. Honestly, for the cost, it is much better and higher quality food and not much more expensive than eating at a fast food place. Tastes a lot better too.

The day started with a Swallow Study. I cannot swallow properly now partially due to my genetic defect, EDS, and partially due to the titanium plate holding my spine together from C5-C6-C7. It was less than enjoyable, but over quickly. My swallowing problems lead me to eat certain foods because just swallowing something like a well-chewed piece of steak is a nightmare. I was really looking forward to this lunch!

We ran an errand then wandered over to enjoy a leisurely lunch before having to be back over at the hospital to see a doctor that specializes in TMJ. If you don’t know what TMJ is, you are lucky. Mine is not the typical TMJ case because mine is caused by tendons being far too loose. My jaw is, as the doctor later described it, “extremely hypermobile”. Unfortunately, he also informed us that because of EDS, there was nothing to be done to help prevent or repair the issue. It’s highly likely that in a few years I will be unable to chew on the right side of my mouth, the left side shortly thereafter. In effect, my ability to chew solid or even semi-solid food is disappearing quickly. And there is nothing I can do about it. Just another thing taken away by EDS. So this lunch is not just ‘another lunch’ to me, it’s a treat and a treat that I’m quickly running out of the opportunity to enjoy.

We sat down and ordered our lunch in the small dining area. It’s a great place and usually we love the atmosphere. This time, just beside the door at a table for two, were two men. Once of which was a very loud and very vocal Trump supporter. At some point, every single person in the room gave him the ‘shut up and let us enjoy our lunch’ look, which he failed completely to give a damn about. Even a guy wearing a Trump hat was giving him the stink eye. This is lunch, not stand up comedy. But since he insisted, and I have hearing that just won’t quit, I had to sit and listen to his entire walk through the dislogic of being a Trump supporter. Oh, and let’s not fail to mention he was coughing hard, loudly, without ever once covering his mouth the entire time. My compromised immune system thanks you! Not.

Over the next few weeks, I’m going to list a few of his statements and why most made me shake my head with sadness.


“Blacks and girls get college handed to them on a silver plate, just because I’m a white guy, or my kid is a white guy, we can’t get any help with college. It’s NOT fair. What have they done to deserve special treatment? Being born poor or with a vagina does not make you better than a white guy.”


Actually, being born a white guy’ makes YOU the special one. You are more likely to get a job, even while still in high school, just because you are a white guy. You are more likely to be paid more for the same job and you are more likely to be accepted to a better college because you are a ‘white guy’. Even if your grades do not justify it. I’m sorry, but that is the truth of it. You START life on a higher rung of the ladder just because you were born a ‘white guy’. This is called ‘privilege’. You didn’t ask for it but that doesn’t change the fact that you have it.

College is not ‘handed to them on a silver plate’. That’s an uninformed argument. We have three kids that have done higher education. One ‘white guy’ and two ‘girls’. None were handed anything on a silver plate. In fact, our youngest entered the military just to qualify for the GI bill and get her college paid for so she wouldn’t be starting at a deficit. She ended up being injured in service after doing a tour and serving in the Haiti earthquake disaster. She can never again do the job she loved because of that injury. We have two that are finishing their PhD’s and the youngest is working on her masters in a new field. They’ve done it with some scholarships, but mostly just by working their rear-ends off and accumulating student loans. I know a number of ‘blacks’ that have done college as well, to my knowledge not a single one of them had it handed to them ‘on a silver plate’.  They have student loans just like my kids.  In a point of fact, the ONLY person I’ve ever known to get into a special ‘paid for’ program in college was a…. ‘White guy’. Unless you want to talk athletics and that’s a whole other department. 

No, being born ‘poor’ doesn’t make someone better. I don’t think I have ever heard someone poor say that it did. The effort to help the poorest of the poor to obtain education applies to ALL the poor, black or white, male or female. In fact, if you are a really poor white guy, your are STILL more likely to win scholarships and internships. So, there you go, that white guy thing is special again, even when poor. The object of helping these people obtain a higher education is really pretty simple. People who obtain higher educations normally get a higher paying job and lift themselves, and sometimes extended family, out of poverty. Ironic, because then they no longer qualify for those helpful programs. WHICH IS THE POINT. Helping a little, in the beginning, means less help is likely to be needed later in life.  This has been proven, via scientific research, to be true even as early as the age of ONE.  Children who have preschools or even just services that help teach parents how to teach their children in the preschool years are half as likely to end up needing services as adults.

From The Hechinger Report on Oklahoma’s innovative approach: “Many researchers have used Georgetown’s Tulsa data to run analyses and reports on the effectiveness of the program. Gormley and his colleagues found that third grade reading scores for children who attended the program after 2006 have risen. Phillips and her colleagues found that preschool grads’ attentiveness in class had increased and timidity had decreased by a significant amount. And economists, led by Timothy J. Bartik of the W.E. Upjohn Institute for Employment Research, a think tank, have even predicted Tulsa preschool grads will earn higher salaries based on their elementary school test scores, which have previously been linked to earnings.”

And Finland is kicking America’s butt in the childhood education department. As reported in this article in The Smithsonian Magazine “Why Are Finland’s Schools Successful?”  “It’s almost unheard of for a child to show up hungry or homeless. Finland provides three years of maternity leave and subsidized day care to parents, and preschool for all 5-year-olds, where the emphasis is on play and socializing. In addition, the state subsidizes parents, paying them around 150 euros per month for every child until he or she turns 17. Ninety-seven percent of 6-year-olds attend public preschool, where children begin some academics. Schools provide food, medical care, counseling and taxi service if needed. Stu­dent health care is free.

“Ninety-three percent of Finns graduate from academic or vocational high schools, 17.5 percentage points higher than the United States, and 66 percent go on to higher education, the highest rate in the European Union. Yet Finland spends about 30 percent less per student than the United States.”


The concept isn’t difficult. It’s not really much different than the advertising you see for retirement accounts. You start an investment with a small amount of money when you are young and if the economy holds and with some luck, by the time you retire you have a nest egg. In this case, the nest egg is an actual human being. You invest a little when they are young, to help them get a good start in life and with a little luck that investment means that down the line they won’t need further services. It’s a proven fact, supported by data.  You respect data about your investments, from college educated financial advisors. Why will you not accept the data from a college educated professor that has dedicated his life to finding out if the facts bear out?