Chronic Illness Bingo leads to Acceptance

This is kinda like the get to know style of bingo, but it’s just for you. Check off what applies to you.

I originally just posted this on my regular social media, but choose to write about here.. The reason I do is the reaction of a friend of mine, Susan.

Late last year she was diagnosed with Rheumatoid Arthritis. Now, she has been struggling with acceptance that her life he’s been permanently altered through no fault of her own. Recently she say the post on my social media of my bingo card (see below) & noticed that she checked the few spaces I had empty. She then got curious & looked at the rest of the card noticing that she actually checked a majority of the boxes aswell.

This was her “Ah-ha” type moment. And realized “I have a chronic illness.” I think this realization, and acceptance of the hard truth has actually be a relief for her. She’s realized that there are limits and she has to learn where her limits are. But she’s no longer stuck and is able to move forward.

While I’m not happy that my post gobsmacked her in the face with the truth, I am glad she’s got the acceptance and is moving forward.

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See where my 3 bingo lines are. How full isUis your card? I know someone who actually checks each box. 😦

He doesn’t get it

Today, or rather the wee hours of the morning of today, he Didn’t get it.

So, we get in from a walk with my puppy, & I do our bedtime routine.. I crawl into bed, and at about 1:30am- 2am … my leggs seize! From hip to the very last muscle at the very bottom on my feet.. Not a charlie horse where it cramps but everything, both leggs, seized up.. Normally it’s just one legg & it’s not hugely nasty like this.. But it was hugely nasty in both limbs.. They’re like charlie horses in that I have to gain control over the muscles however a charlie horse requires a short, but hugely nasty controlled clenching almost like creating a controlled, but more intense spasm then its over. But not with this. It doesn’t need as much force, but it does require a nice chunk of time in the clenched state, significantly more time. Unfortunately that means a longer duration of pain.. But I can handle that.

All I could think was ‘Thank God I am in bed’..

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A little later at about 3am, the dog goes nuts cuz she’s gotta go bathroom.. One of us needs to take her out or she goes in the apartment. But he’s too tired, has “no energy”. Even after I explain what happened, he still expects me to go.. So almost 15 minutes to dress into jammie pants & a tee beside me that I have for when I need to take puppy out at night. And another 45 min to walk from the back-side to the front door. An hour to do a 5 minute potty break.

You’d think knowing how much knowing my pain can impact me.. and the intense fatigue to goes along with it that he’d be more understanding.. So, today I you’d think he’d have more understanding & empathy.. Nope, this time he Don’t get it. *sigh*

My Acceptance

My biggest issue with my medical issues is me. I have so much trouble accepting my limitations. I am still trying to figure out how much I can and can not do. It’s more the can not that is my issue. I used to be way more than I am now. I used to be intelligent; Once upon a time I had an IQ of about 180 which is the beginning of genius. I’m not meaning to brag, just illustrate how much I’ve gone down hill.. I’m now at 130-140, which is considered average (to my knowledge).. That’s a *huge* drop, but it’s all from the fibro.

I used to be physical. I played soccer in a ladies league (the term ‘ladies’ here is used loosely) with 2-3 games a week and I played an aggressive & physical game. I was also involved in scouting, as a youth member, as a adult member, as a leader, as a group or area representative. As a result, I was very physical – hiking, camping, marksmanship, skiing, skating, all in different types of weather. & yes, I have camped outdoors in the cold weather and the snow. I can not do any of that. It’s not struggling with just those losses, but also the loss of the ability to function doing ‘normal’ day-to-day stuff like laundry, cleaning floors, vacuuming, washing walls or windows, and cleaning the bathroom.. Or even worse, I flare after being around my nieces & my nephew.. Moreso my nephew cuz he’s more physical, still into aggressive roughhousing. (Çuz he doesn’t get a lot from Dad – long story, not really Dad’s fault) I should be able to spend time with my family without getting sick. I just don’t know how to. Any suggestions on how to deal with this issue and help me accept my limitations? Feedback would be greatly appreciated. ~ Thanks.

Addiction or Dependance?

My SO is always concerned about the potentially addictive medications I am on.. I try and assure him that, while dependant, I am not addicted.. He doesn’t see the difference.. Unfortunately, when I am tired or just generically foggy I find it hard to explain.. Medical Dependance is a body’s need, a requirement to be healthy.. For example, an Insulin-dependant Diabetic is exactly that, dependant. The insulin helps the body function properly with the problematic pancreas. For us with chronic pain, for whatever reason, we take the medication to function properly with the problems that each cause us pain. Yes, if we stop taking our meds, we do into withdrawal; it’s a chemical dependace, so of course we do. Should a diabetic stop taking insulin, would they not go into a withdrawal? Absolutely; sugar levels will start to rise, and the body’s functionality drops. Addiction is very different. Addition is filling a mental and emotional need to feel that high, and rarely a medical necessity. This is NOT why we take the medications we are prescribed.. We don’t want the high, we just want to feel less pain.. Less pain does not a high make.
Now, I admit that there are persons who take prescription medications to the excess, to go beyond the need to feel less pain, to the pain where there is no pain and they get that high, or continue prescription medications long after a temporary need has been resolved, again to get that high. These people are addicted. Just because you are dependant does not mean you are addicted.
Just because you are addicted does not make you medically dependant.

 

Five Things to Know About CFS

Five Things You Should Know About CFS
by Amanda Rinkel
May 7th, 2009

I’ve already kicked off International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day on May 12 a little early with my post on Five Things You Should Know About Fibromyalgia, and I’ve returned with more information, but this time about the chronic illness Chronic Fatigue Syndrome. Once again, no hilarity, no breaking news stories, just some information I think you should know.

Five Things You Should Know About Chronic Fatigue Syndrome

1. The hallmark of Chronic Fatigue Syndrome is fatigue, but it isn’t “normal” fatigue. When a healthy person is tired, they can rest or sleep to relieve fatigue, but a person with CFS cannot. Sleep and rest don’t help and activity can make the exhaustion worse.

2. Up to 75 percent of patients with Chronic Fatigue Syndrome potentially have or have been diagnosed with Fibromyalgia as well. That is up to 3 million people.

3. There are 4,000 confirmed abnormalities between a CFS patient and a healthy individual, yet none of these abnormalities have been identified as a cause or as a diagnostic marker.

4. 1-4 million people in the United States have CFS yet only 20 percent have been properly diagnosed with the illness and are receiving the proper treatment.

5. Chronic Fatigue Syndrome has been said to be as functionally disabling as Multiple Sclerosis, AIDS, End-stage Renal Disease and Chronic Obstructive Pulmonary Disease.

To learn more check out www.wamcare.org.

Soource: blog.su-spectator.com

Five Things to Know About Fibromyalgia

Five Things You Should Know About Fibromyalgia
by Amanda Rinkel
May 5th, 2009

International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day is next week on May 12th. I’m going to take a break from articles on internet wastes of time, movie reviews and news updates. Instead I’m going to take a moment to highlight these illnesses and the necessity for awareness.

Five Things You Should Know About Fibromyalgia

1. 3-8 million people in the United States have Fibromyalgia and up to 80% are women.

2. Fibromyalgia most commonly hits between the ages of 20-40 years old, at the “prime of life.”

3. It has been nick-named “the pain disease” because of the characteristic wide-spread, migrating body pain patients have. The pain has been described differently by each patient from dull aches to deep bone pain to burning, tearing, singeing, stabbing or shooting. The breadth of pain descriptions is what makes diagnosis difficult.

4. People with Fibromyalgia have cognitive difficulties, such as memory problems and attention issues, that has been nicknamed “Fibro fog” or “brain fog.”

5. Fibromyalgia is considered as functionally disabling as rheumatoid arthritis but is much less accepted and recognized by both the medical establishment, Social Security and the community at large.

To learn more check out www.fmsaware.org.

Soource: blog.su-spectator.com

It’s not real.. Not for me apparently. :(

What would you do? How would you react? If you got told by the person that has been your primary support person for the last 3 + years.. That he/she doesn’t believe you’re sick? Doesn’t believe you’re really *that* tired? Doesn’t believe you’re in *that* much pain? And thinks it’s all in your head.

I was told the other day by the person who I look to most for help & support with my fms & everything else, exactly that. He doesn’t believe me. He thinks I’m either making it up & have fooled all the doctors and specialists, Or it’s all in my head. He said he’s never really believed me since he met me.. He thinks I’ve been lying to the world this whole time, that I have been putting myself through test after test after test, several invasive just to play sick? He thinks I’m a leach on the government rolls because I get disability (and we all know how easy that is to get). That it’s my self esteem that’s screwing me up. He’s thinks that I’ve got nothing of value.. Nothing to offer.. I’m nothing of value.. *sigh*

How much more of a stab in the heart is that?? How much more hurtful can one person be??

I’ve considered the option of leaving before, but not all that serious.. But now,. yes I am giving it serious thought. How can I stay here with this person who I should be looking to for help, but who does not really believe what I am going through is real. I have thought on & off that sometimes he doesn’t get it – but that makes me wonder if he even understand, let alone cares about me at all. It’s heart wrenching.