Being jobless

I keep saying that I want to go back to work.  I "look" so damn healthy that I feel guilty for "looking" so healthy.  I still have all my symptoms, but I recover from them in a half hour to an hour of resting, whereas before, it would take days, even up to a week.  Most symptoms came to stay, but they go into a lower mode. 

Constant pain that ranges from 5 to 9 on the scale of 1 -10 - I MUST have meds to keep it 5,6 and 7.  Within 3 hours of not having the meds, it's a 9. A ten means I'd take a butcher knife and chop off my hands and feet. 

Constant pins and needles in hands and feet that corresponds with the constant pain - the worse the pain, the worse the pins and needles.

Constant numbness ditto with pain and the pins and needles.  This and the pins and needles affects me the most emotionally, because I find myself laying on the couch not doing a damn thing because it hurts to touch things and I find myself in depression.  I've recently realized that I MUST do things in order to be happy.  I cannot be happy if I'm not able to DO things. 

Clothing feels too tight 24/7, even when the clothes are loose.  If there are no clothes, the sensation of too tight stays.  The sheets hurt.  The lightest touch hurts more than firm pressing.  For instance, shaking hands doesn't hurt, but brushing my skin lightly is torture.  So I instinctively avoid any contact, and have been known to recoil away from someone who's reaching for my hands to greet me.  Old people are especially prone to do this and I always get the most shocked look, so I have to quickly explain.  That is ... if I'm feeling friendly enough.  There's been a time or two when I let it stand - "don't you touch me you creepy ass person" is the message it leaves.   

Oddly, sex doesn't hurt.  I can't explain why it doesn't.  For the first year or so of having MS, I was a sex machine for fear of losing it.  Maybe someday I'll tell that story.  Suffice to say, I'm not like that anymore.  As in ... different men.  I do believe my sister called me a slut ... .  Bitch.  And yes, she reads this site.  No telling WHAT she'll call me in retaliation. 

Peeing or not peeing.  When I can't pee, that signals a flare-up.  During flare-ups I've been known to pee my pants because I'm numb and can't feel things.  Medication helps this. 

Flare-ups happen maybe two times a month now, and have a definite beginning and ending, usually about 3-4 days.  For about 3 years it was constant, everything getting worse to the point I was using a walker and practicing using a wheelchair.

Swallowing is sometimes hard.  It feels as if the muscles just quit, and that is not a good sensation if something is halfway down your throat. 

The drunk stagger is still with me when I've over-heated, over-done cleaning, gardening, walking, biking, etc.  Or when I'm in a flare-up.  Or when I've picked up a bottle of nail of polish at the store.  It's so random and unexplainable. 

All these things are manageable so that I could go back to work.  What stops me is the fatigue.  I can be a spinning top for a day or two and sometimes even three. But then I crash.  I can't maintain the steadiness required for an 8-5 job.  I could do a part-time job for about 2 weeks before the fatigue got to me.  I don't understand why I can't do part-time - with my current improved health it seems like it should be doable.  But it's not. 

And then there's the heat.  Within 5 minutes of being in the sun, even just sitting in a chair on the patio, my legs turn to noodles and my brain goes south.  My memory is SHOT.  Last nite I took some Half & Half milk (or is that cream?) out of my fridge to take to Wheels, where I was spending the nite.  I forgot it, so it's no good.  Today I ran to the store to buy her some while she was in the hospital having a medical procedure.  I forgot it in the car when I went in to her house to vacuum, freshen up her bed, dishes, sweeping, etc.  I decided to go buy some flowers to place on her bedside table, and discovered the Half & Half on the front car of my seat, in the full sun.  Did I mention it's in the 90's temperature-wise?  Off to the store I went.  Bought a little  African Violet.  Went back to her house.  Noticed the last Half & Half on the counter waiting for me to pitch it in the garbage ... yup.  I forgot to buy more Half & Half.  I placed the flower prettily on her bedside table and left to get more Half & Half.  She had specifically asked for it, cause she had to go without food for 24 hours before her procedure, and no caffeine.  She wanted her coffee with cream when she got home!  As I left for the store, I spaced it, and drove home instead.  When I saw the first Half & Half that I had forgotten still on my kitchen counter, I remembered I still had to go buy more for her.  Hell, her procedure was only 3 hours long, and I pretty much used up all that time being stupid because of the heat.  And I'm sick of using the word "Half & Half".  Jeez. 

I don't want to put an air conditioner in because then I'm afraid I wouldn't leave the house. UPDATE - SFM just called and told me he wants to buy me an air conditioner.  I told him my concerns that I'd be tempted to just stay inside all the time and then get all house-bound and depressed.  He said I could leave it off during the day.  At the time of the discussion, I thought ... okay, makes sense.  But I know me.  Because the heat makes me so miserable, I'd tend to stay home ALL. THE. TIME.  I think it would make the MS worse ... being nice and cool inside, but having to go outside ... too much a shock to my system.  I feel like I need to be acclimated.  So the discussion will continue. 

In order to feel useful and worthwhile, I tend to gravitate toward people that need help.  Wheels and I shared a passion for gardening last year, and since then, we've become good friends.  I clean her house, run errands, take her shopping, and just generally do everything that a person in a wheelchair finds hard to do.  She and I have to same "I'll do it myself dammit" attitude, and she has said it's easy to accept help from me because I'm pretty intuitive about being disabled, and I just DO alot of things without having to be asked. 

Where in the hell was I going with this post??? 

Ahh I remember.  I remembered because I'm sitting here with a fan blowing right at me and I'm cooled down and rested. 

As of next Monday, I will consider my blog my job.  I'll get up at 7:00, get dressed, walk the dogs, eat breakfast (the most important meal of the day!) and sit down and write.  I will write until noon, which is when my home-health aide comes 2 days a week.  I'll consider it my work, and not go flitting about as if the boss was gone.  (Here is where I should come up with something clever about how mice will play while the cat (boss) is away, and actually playing with a mouse cause of the computer ... but I'm blank.)  I may not even take phone calls.  Unless SonOne or SFM calls.  Or my mother and sister. 

I will promote my blog by handing out the business cards I had made.  This will be easy because when I walk the dogs, people want to pet them, we talk about them, and I can easily say "Here, I take pictures of them everyday in my blog, check it out".  I will visit other sites, and participate more in the memes and commenting, etc., which will lead some people to the blog. 

After spending so much time in the dairy aisle today, I came home to discover I'm out of yogurt for my morning oatmeal.  So I switched to Cream of Wheat, and discovered I'm out of milk.

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Just Call Me Dairyless

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Comments

[mdmhvonpa]

Is there some kind of work you could do at home ... something regarding computers and blogging?

[TC]

You write so well, you might want to consider submitting some articles for MS magazines, or dog magazines or ...??