The benefit of a poor memory

When I am feeling well I feel invincible. It’s hard for me to remember when my last flare up was, even if it was a week ago. Its hard to remember I can’t plan camping trips a month out with any definite confidence, or that I probably shouldn’t plan a road trip alone.

The flip side of that is when a flare up hits it hits hard, not just my body, but my confidence and spirit. It whammys my hopes and dreams and self confidence. When its hard to get through a quiet day, then there is no hope for visiting with friends in the evening, or even joining my family for dinner. I can go into a rather morbid depression if I don’t keep my mind busy.

The great thing is, when I am feeling well, I just don’t think about that much. Sure the fear of it creeps up on me all the time, but I can spend my healthy days smiling, and creating, and making big big plans, and getting as much work done as possible so when the illness does hit me hard, I won’t get too far behind.

Today is a good day. I am going to spend the rest of it acting like I have never been ill and will never be ill again. It’s not a bad way to live.

Spring flare up

Well it seems like the remicade is working, but I have been having such a flare up its leaving me a bit beat up and depressed. I am dreaming of the days I used to hike a few times a week. Just small hikes, under three miles all, but manageable, even on pain days. These days, driving to work, and walking out the door seem almost more pain wise than a person should be able to handle. At the same time the migraines are also hitting me nearly daily again, giving more credence to the theory that they are both related.

I know my weight isn’t helping the pain, no one in pain needs to carry around an extra 50 lbs, but pain doesn’t help me manage a compulsive eating disorder either. It was easy to hide an eating disorder when my days consisted of 5 to 7 hours of physical activity every day, but now when getting dressed in the morning takes half my energy for the day, exercise seems like a luxury I may never have again. I actually feel like I am mostly in control of the eating issues lately, as many meals out I split, and I have mostly avoided mindless empty calorie snacking, and make better dietary choices for the most part. I bring up the eating disorder because I know I am at risk from just moving from one to the other. When I see myself in the mirror lately, my first thought is I have to start purging. How else can I get this weight off? I have tried expensive diet plans in the past, and just self control and they just leave me depressed and any weight I lose gets put right back on as soon as I have to take steroids. The dietary lifestyle choices I have made obviously aren’t enough. I know bulimia isn’t an answer to anything, but its something I have struggled on and off with when I get very stressed out in the past. Maybe its just a way to have control somehow over something. Amazingly enough I seem to have lost my appetite for the first time in my life these past few days, so maybe that will all take care of itself with some luck.

I have been trying to manage the pain and depression productively. Painting it out like I do migraines, and oddly enough losing myself in data entry with the books for work seems to give me someplace to focus except for the pain. I have been taking Aleve daily, and I am grateful my doctor doesn’t through pain pills at the arthritis because I would be tempted to numb my mind and take them. I have some friends who smoke or eat pot for pain who have been trying to convince me. But I don’t think I can every get over my issues with pot. I have seen it ruin too many peoples lives and destroy all their ambition. I know taking it for pain is different,and I am all for legalizing it for any purpose, but I have have a repulsion towards it I don’t think I can get over.

On the plus side my paintings have taken a more creative expressive turn. Are they any good? It’s nearly impossible for an artist to see these things objectively, especially when they are new borns. But they are good for me, pure expression and something to focus on besides pain.

Whining and helplessness

One of the hardest things about being ill is having to depend on others.  Its a very quick drop from needing some help to starting to feel like a burden.  I want to mention that my family is kind to me and always makes sure I have food and water.  When I ask for more than that though I feel like I am being pushy and annoying.  Maybe I am.  Tempers seem short with me, and grunts and sighs when I ask for what seems like little things to me make me feel worthless.

When I am thirsty I can just go get myself something to drink.  So I ask.  I can’t expect someone to jump and get me some water.  So I wait.  And they forget.  Then I ask again.  Suddenly I feel like a nag asking over and over.

In order to ask for less I hint at things…it would sure be nice to have a keyboard with the computer, does anyone know where it is?  I need soap by my bathroom sink, does anyone know where that is?  I would love to have a pencil and a sketchbook.  Hinting doesn’t work though.  I get told where the things are or simply “I don’t know”.

Part of it is I am just home alone a lot.  By the time my husband gets home from work and running my son to lessons he wants to relax, not deal with yet another burden.  My daughter on the other hand will call whenever I ask for her if she is home.  She pulled down an old broken blind for me so that when the shades were opened I actually got some light, she has scrubbed the shower so I can shower, and made me lunch.  She isn’t home often though, between school and work.  She is probably home only a couple of hours every few days.  Our roommate and my best friend Tim takes care of me as much as he can, but he works long hours as well, and may not be able to lend a hand until late at night.  He wakes me every morning with a cup of coffee and breakfast before he takes off for the day.  My son I don’t see at all unless I ask someone to go get him, but he is a 13 year old boy.

I think it’s a combo of me having too much time and needing too much and no one else having the time.  I am sure I am cranky and bossy as well.  If I ask for a dry cleaning pile to be picked up, chances are I have been looking at that pile for the last 9 hours wanting it to disappear.  So it means more to me at that point than it should.  If its forgotten for another day and I have to ask again, I am bound to sound like a nag.

I know I have girlfriends and my grandmother who would come help but I have to say no thank you.  Limiting my exposure to people is the one thing I can really control to avoid getting an infection.  I am being brought dinner by the wonderful women at the PTA daily, and I am so glad, not just because I know that I will always have at least one healthy tasty meal a day, but because its one less chore for my husband to have to do for me.

Sometimes my imagination runs wild with this burden thing and I feel like if I was healthy enough I would just pack a bag and go where to god knows where, just so I won’t be a burden anymore.  I feel lonely, bored, scared and worthless.  I met a girl at the hospital the other day.  She was crying hysterically because she couldn’t wash her hair.  She was getting upset about not getting jello.  She was a complete spoiled baby, and I could really identify with her.  Knowing I can’t get my sheets cleaned as often, and being thought of as paranoid for asking for them washed has brought me to tears.  I know I can just get up and wash it.  It’s a struggle for me every hour to remember that an infection could cost me my life.  Being over-cautious and yes, even paranoid is something I am consciously doing because I so much love life.  I don’t want to take any chances.  I love my family and I love every day on this earth.

I am not clean as a habit so I am sure its extra annoying that the woman who can go days without doing the dishes suddenly needs her shower scrubbed before she will even get in it.  I can imagine this is hard on my family, having to cater to me and coddle me.  After so many years they must be so sick of me getting sick over and over.

I do have some suggestions for setting up a sick room though.  If at all possible have it be in a guest room.  Even if you share a room with a spouse you don’t want to feel like they would like you out of their space.  Also you don’t want to upset them with any chances you might make to make yourself more comfortable that are different from what they might like.  Make sure you have a back up supply of water.  Tim put a pitcher by my bed next to a full cup of water, so even if I am alone all day long at least I have water.  Also do the same with snacks.  Tim put portion sized servings of snacks next to my bed incase I don’t get lunch, my husband put a box of cheez-its, so I will always have something to eat.  Any sort of entertainment, especially things that allow contact with other people, such as phones or computers, a tv a book.  Also if possible it would be good to have someone who could come through and do a quick clean once a day.  Just 10 minutes of time to do little things that might be bothering you.  Also clean sheets and towels and wash clothes daily are not just important because of germs but can add a bit of freshness and comfort.

Being alone after or during an illness can be hard on a person.  Its bad enough to deal with the pain, discomfort, and exhaustion.  Feeling like a burden can lead to depression quickly.  Its hard not to feel despondent.  Right now I am not the one to have answers on how to avoid that.  I do understand how someone who is sick might just want to give up.  Who wants to be a burden on the people they love most.  I am so close myself to disregarding my own health so that I can get things done, stop being a burden, and lend a hand to someone who needs it more than I do.  I am feeling so selfish, dependant and demanding.  I almost didn’t write this.  I want to help others with this blog, not whine and complain.  I hate to be perceived as anything but very strong.  Then I realized I am not the only one who feels this way.  It would be so easy feeling this way to just give up.   Some might even want an easy way out.   It gets better though.  It will get better.