Why I'm so damn "Lazy"

I have a hard time showing weakness.. so I puff up and try my damnedest not to show the pain. Jase, my kids, and a few close friends see it but I fight through it as best I can until everyone is gone or I'm just alone with these ppl and I can fall apart. I also do things that I shouldn't because I'm determined to not be completely useless to my family. I will bake or cook all day running back and forth to the washroom. I'll push myself through things then I fall apart. So everyone sees me doing these things and miss the part where jase has to help me in the bed or help me change my clothes. They miss the tears or vomiting or sometimes three days I can hardly move after. 

For those that do not understand what it like to live with UC (Ulcerative Colitis) let me explain. It is not Irritable Bowel Syndrome. It's not a tummy ache.. it's not indigestion.
One GI doctor says this

"Crohn's Disease and Ulcerative Colitis are the two most severe digestive afflictions. They cause life impairing symptoms, necessitate long-term dependence on powerful drugs, and often result in debilitating surgery and even death. Tens of thousands of Americans are affected. Both diseases are classified under the medical rubric of Inflammatory Bowel Disease (IBD)."

Here is a list of the symptoms http://www.ulcerativecolitis.us/app/symptoms.asp and since I am fortunate  enough to to have Pan-Colitis (pan being entire) I have all but the effected liver thus far. 

In addition to unbearable pain, you also get swelling, (I myself go from a size 8 to a 16 in a matter of hours), and nausea. The nausea can be constant or come and go but causes most people with Inflammatory bowel disease to rapidly lose weight due to inability to eat. I also have diabetes so I can not go without food so I literally choke it back. Sometimes through tears and fighting being sick. Food has very much become the enemy. I know as soon as I eat any comfort I might have felt will only remain about 20 mins. As soon as it hits my system it gets bad. The whole of my digestive system is full of inflammation.

It literally starts at my mouth and ends at my, well end. This inflammation also consists of ulcers that often burn like acid and fire. Feels a bit like things are trying to eat their way out. When food hit is it's even worse. (another reason ppl lose weight.. some days it's not worth eating.) Within 30 mins of starting to eat my first meal of the day I'm in the bathroom. I can not leave my house or do anything that requires any attention until the first few hours of system purge. (you come up with lots of funny or silly things to call it just to deal with the embarrassment) First purge is anywhere from half an hour to 3 hours in 15-20 mins intervals. Exciting huh? School days or days I have doctors apts early.. I don't eat until around noon which really screws up my blood sugar but if I want to leave the house I can not eat. It's similar after lunch and dinner although it's less urgent but more difficult.

I no longer eat out.. no lunch with friends or the kids.. when we do go somewhere for dinner or what not I have a limited time I can stay after. I haven't dealt with the whole going in public. I just can't do it. Not just for the humility of it but also the pain, bleeding, lack of stocked bathroom, and general unease of the whole situation so it's just not a good idea.

Some days the inflammation causes so much pain that I can barely stand to have anything touching my stomach. Others it's too painful to even sit up. Then there are days when I get through the morning horrors and then I'm somewhat functional.

Then there are the other things that are both connected and not connected.. Things they believe are connected are
Arthritis (spine, sacrum, joints)
Skin lesions, rashes, lumps
Chronic Dehydration
    Dry eyes and inflammation
    dry sinuses w/ inflammation
    dry mouth and gums w/ inflammation
Gastritis
Esophagitis


Unrelated (so they say)
Degenerative disc disease through out spine with several pinched nerves.
Mitral Valve Prolapse
Tachycardia
Post Ventricle Contractions
Fibromyalgia
Diabetes
connective tissue disorder (causing disks to bulge, slip, joints to be loose)
Hiatia hernia
kidney stones
Polycystic Ovary Syndrome
Hashimoto's Thyroiditis (autoimmune thyroid disease)

There is probably more but I often forget all the crap they have diagnosed over the past 10 years.

Now for the point of all this TMI .. I'm having a lot of issues feeling like a burden to my family.. useless and totally out of control of my existence. This coupled with constant reminding from several people that I am all those things is really messing up my already jacked up head. It's hard enough to deal with the hand I've been dealt without all the reminders of how pathetic and troublesome am to those I love.

So here it is.. in a nutshell. I use to be very good and work my ass off at everything I've done. I brought home $800 a week 10 years ago. I have many skills and many talents. I hate to not have my own money and tend to do without my necessities to make sure Jase and the kids have what they need with what money I get. I feel trapped and dependent without my own money. I feel controlled and repressed and it causes me a great deal of anxiety and i tend to shut down emotionally.. and yet people think that is my choice. That I chose not to work because I'm lazy. Well.. give that a think. I choose to ruin my own life. To feel imprisoned in not only my body but my home. I voluntarily  chose to give up my security, sense of self, fulfillment, and to waste not only my skills with computers, people, business, but also totally blow off my creative talent. If I could find someone to give me a job in my areas with accommodation for my health issue I'd be all over it.

But honestly, who is going to say.. oh sure you can be away from your desk on good days 5-8 times during the work day for 15-20 mins at a time.. and 20 + times on bad days. No problem and if you have to get out of the chair and sit on the floor .. then the desk.. then lay on your side.. or on your back or put on that TENS unit or alternation heat and ice or put on those lidocaine patches. Not a whole lot of people are going to say.. sure.. it's fine if your production is only 2 hours a day on some days.. I keep trying to find ways.. to get stuff done but when you have NO disposable income at all you can't buy supplies or start things up. I can come up with a million ideas but you don't get far with ideas.