I miss...

I miss:

Walking

Showers alone

Standing up

Washing my own face & body

Stretching

Being able to go inside the dwellings of family & friends

My family visiting me without pain on their faces

Putting on my own clothes & makeup

Sleeping in the same bed as my lover

Initiating affection & support without having to ask the person to help me hug them

Cooking , cleaning laundry, dishes

Being alone

Privacy

The ability to go outside and sit in the yard, go for a walk, shopping, eat out, leave the house without planning

Spontaneity

Being able to move around comfortably in a small space

Stairs - especially because the lift I use scares the shit out of me. I don't like heights & I do have nightmares about it plummeting to the bottom

Not being depressed.

Rarely taking pills

Being naked for no particular reason

Wearing a robe - I used to have a nice silk one

Organizing my own crap

The days when I could think of this disease as a condition & the effects wouldn't be real until far in the future

Not worrying about how close I am following the special diet

Being unafraid of carbohydrates. I feel like every gram I eat is going to help kill my muscles faster

Eating carbs without feeling like a bad person

School - I adored university & will forever regret I did not even get a degree when I planned to get a PhD

Scratching itchy spots

Playing with my pets & being able to make them behave

Being warm in normal temperatures

Gardening

Sitting on the couch

Sitting without pain

Traveling

Dancing

People not staring at me

Having a job

Having energy

Sleeping less than 10 to 12  hours. Also mornings.

Being able to reach the floor or a spot more than a few inches in front of me

Pain

I promised I would write here more.  I feel like I should be saying something profound for some reason, but if I only write when I have something profound I may never write.

Today is a bad pain day, and yesterday was bad, but not as bad as today.  The day before, I didn't need any extra pills, but the day before that I did. Two days in a row before that I didn't take any either.  There seems to be no rhyme or reason to this.  I can't see a pattern.  Some of it has to do with the adult brief and pad that I have to wear, more bulkiness under my butt, and sometimes there are wrinkles or bunches in them that are just a function of them being absorbent.  (I refuse to use the "D" word.)   The pain is basically from sitting.  I only have two options.  Sitting and laying down.  I really don't want to spend more time in bed than I already do. **

I take codeine every day; T2s before I get out of bed and time release twice a day.  I am allowed to take more T2s or hydromorphone about 5 to 6 hours after the first dose.  The last couple days it's been hydromorphone.*  All of these opiates lead to crazy constipation which means I have to take fairly serious laxatives. To make matters worse, my smooth muscle is affected by this disease, as well as skeletal.  This means that the muscles around my intestines are getting weaker.  I was in the hospital over a month ago for what we thought might be a bowel obstruction.  It turned out not to be and the treatment they tried worked very well.  The problem is that I cannot get to the bathroom in a timely manner.  I hate having accidents.  It's gross and embarrassing   I suppose this is the bright side of wearing briefs and pads; things are more contained.  I am experimenting with dosage of the laxatives to find a happy medium between being regular and not shitting myself.  It's depressing.

It's another thing that I feel that my body has done to me.  Dignity gets more scarce as time goes on.  I never expected this to be one of things that changed. It just never occurred to me. I can usually see ahead to what is going to happen next.  Things get slightly more difficult, then difficult and then I can't do them anymore.  This isn't something I foresaw.

There is the option not to take the pain pills, but being in pain changes me.  I spend time and energy, mental and physical, ignoring it.  Pain makes me tired.  I am less able to enjoy life.  I am less able to hold conversations, to pay attention to the people and things around me.  My partner notices that I zone out more.  I tend to focus on TV shows or movies.  In fact, I notice that I watch shorter shows and avoid movies when I'm in pain.  Some days, I try to be stubborn and not take the pills, but I ask myself, "What is the point of doing that?".  My partner tries to encourage me to take the pills and not be stubborn.  I'm afraid of becoming addicted.  I talked to my doctor about this recently and she said if I was going to become addicted to anything I would have already.  I was very relieved to hear this, but I still worry anyway.  She did say it is possible to build up a tolerance to the drugs.  I'm not sure what happens if the codeine stops working.  I move up to hydromorphone all the time?  What do I do if that stops working?  It worries me.  We are trying to change my seating on my wheelchair (new cushion and back), but it is slow going, it will be more painful for the first couple months at least, and we have no idea if it will actually work.  Discouraging to say the least.  The story about the seating is another blog post entirely.

*Side note:  I react to opiates and other medications differently than other people.  I seem to need more pain pills, of any kind, than other people to get rid of the same amount of pain.  Sleeping pills usually make me high instead of sleepy.  The first sleeping pills I ever tried made me slightly hyper.  I always wake up from anesthesia sooner than expected, and I usually do not become unconscious easily.  Anesthetic always works, but I wake up early.  Also, at times doctors thought I should be unconscious (low oxygen levels) I am up and awake.


**Right now I spend about 13 hours in bed per day.  I actually get into bed around midnight and then start getting up at 1pm.  Needing 10 to 12 hours asleep at night is very annoying.

Purpose

I thought that I would use this blog mostly to talk about disability in a more scholarly way, book reviews, posts about social and disability issues, but I think that might have been too ambitious.  I think I need to start keeping a journal regularly again; it's good therapy.  I started another blog for that reason, but I figured there was no reason to have two.  In any case, I want to try to write here more often.

Assistance

What is with people and these pictures saying things like, "I work and pay taxes, so people who could work can collect welfare", or "We should drug test everyone on welfare"? I find these statements to be ridiculous and insulting. First of all, welfare is crap, you are below the poverty line, and the majority of people do not want to be on it. Second, if you can work they make you find a job. You can't just sit around and collect money just because you feel like it. Third, YOUR taxes don't pay for welfare, EVERYONE's do.  Just like you don't pay a policeman's salary (I never understood this, police pay taxes, so are they paying their own salary too?). Finally, there are very few people abusing welfare.  The last stats I saw were 1% or less. Now, for the drug testing. First of all, this would be incredibly expensive. The amount of money you might save by kicking people off welfare for testing positive would be a tiny fraction of what it would cost to test people. Plus, if someone did test positive you'd have to prove it was illegal and not some kind of medication. Opiates in particular show up as just "an opiate"; the person might be taking cough medication with codeine.  This would have to be investigated, and huge amounts of money would go into figuring this shit out.  What would you do with someone who tested positive?  Kick them off welfare?  Those people would end up homeless, in hospital, in prison or some variation of the three quickly. Providing those services cost much more than a welfare check.  Finally, who the fuck are you to tell people how to spend their money?  That woman buying ice cream with food stamps might have a kid at home with a birthday. If you are on welfare your life is probably crap, so why can't they live on ice cream or cake if that's what gets them through? Why do you care if they smoke, or drink, or whatever it is they do, to make their life bearable?  You personally did not hand them money, and you personally have no right to dictate how someone lives their life. What's next?  I know people who won't like this, and I say too damn bad.  If the government feels that someone doesn't deserve a welfare check, let them deal with it. There needs to be thinking about practicality. Practical things like, what is the ACTUAL number of people abusing government assistance? What are the costs of implementing restrictive laws? Welfare is a last resort for most people. Do you really want to put people and their families out on the street? What would that accomplish and how can you possibly justify it? But for the grace of god, go I.  People on assistance are not OTHER, they are normal people whose life took a shitty turn.  It could easily be you.