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.
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.
After a few days of feeling recovered from my surgery and not feeling too bad other wise I woke up yesterday morning feeling tired but ready for my full day at Robert Burridge’s workshop. So focus on the workshop I don’t recall feeling tired or achy, although after about 1 pm, I started getting really clumsy. I kept tripping on nothing, and even falling down here and there, dropping paint brushes and other things. By the time four o’clock came around I was shaky and oh so tired. Driving home I realized how much my body was aching head to toe. When I was a few miles from home I just felt like giving up. I felt like pulling over on the side of the road and crying. It was effort to keep my focus on the road and keep my hands working on the steering wheel.
When I got home I knew I had work to do and no energy left to do it with. I felt that if I laid down for a moment that would be it and I wouldn’t get back up, at least for the night. So I rallied my energy and strength and worked as hard as I could to finish packing my work bag for tonight, as well as some additional stuff for Burridges workshop. Luckily Tim came home and finished the packing for me and loaded the car. By that time I couldn’t make it upstairs myself and actually needed help getting into bed. I can’t remember the last time my psoriatic arthritis hurt so badly. I took some medication and got a massage, and just lay there half asleep for a couple of hours. My family all then joined me for dinner in bed, which was a real sweet gesture. I feel asleep shortly after dinner and woke up with a migraine but feeling a world better.
Today is going to be busier than yesterday, I will be leaving the workshop early to go teach my own art classes. I must remember to drink plenty of coffee today to assist the adrenaline I will have from the excitement of seeing some of my favorite little ones in class today.
It will be a hard busy week physically, but I am sure once I get through it, it will be great for my spirit, knowing I can do what feels to be absolutely impossible; And yet, its less than most people do everyday. Its very clear to me that if I had to depend on my own income I wouldn’t have the luxury of working part time, nor the health for a full time job, but I would be one of those people some of my friends look down on, who must live on a monthly disability welfare payment. I would say to those people who judge others as weak or lazy or parasites that it is hard enough to live a life with a chronic illness but being judged by others can increase the depression and feelings of worthlessness and shame that we always deal with daily.
After thinking hard about the numerical pain scale I started using a color spectrum for pain, see the color of pain blog post, but pain scale alone can not communicate how I feel. Energy level also has a huge influence. Pain of orange with high energy and I can still probably make it through a work day, blue pain with no energy and I can’t function.
I do think the numerical scale for energy can work, but backwards. I am thinking of it as a 10 gallon gas tank. Energy of 10 and I can do most anything, Zero I am flat on my face.
With the two scales I can use them together to give a more precise idea of how I am feeling. I will start using the two together and see how it works. A yellow pain with a 6 energy is very different than yellow with a 3 energy. It might help me communicate better with my family and doctors as well.
I have no idea what this is called, and it doesn’t really apply to Psoriatic Arthritis, but it does apply in a direct moment to moment way to my life and the way I deal with my illness.
I have very keen senses. Sometimes its a gift. I can taste the nuances in a dish enough to replicate it and maybe even improve on it, I can taste and smell meat on the verge of not being good for me, avoiding many cases of stomach upset I am sure. I have a keen eye for color. I get great comfort over the sensation of softly woven bamboos and silks. At times I can feel the rain coming and even an earthquake as a physical sensation on my skin. Massage is very healing for me.
That being said it is also a curse. I can smell cat spray so strongly it can ruin a day lounging at the most visually beautiful pools I have seen, or animal urine can cause me to retch so badly I won’t do my laundry which is in the room with the cat box. Some colors will cause an uncomfortable physical sensation on my skin and almost make me feel sick. If I pay attention to detail I get obsessed, so if I clean all I see is more and more dirt, so I cope with this by ignoring cleaning. I have a hard time sleeping anywhere, as I have a princess and the pea syndrome where I am never quite comfortable even in a nice bed with soft pillows. I long for sheets and pillows and beds more expensive than my pocketbook allows. I have a hard time being satisfied with food without flavor, but will sometimes eat compulsively until I find the something that pleases my tongue, instead of my stomach. Sounds, lights, and smells can all give me a migraine. If a medication has a side effect I seem to get it, especially if its something like itching, or vision distortion. I can feel medication often going through my veins. My skin is over sensitive to a unbearable degree in certain places. I can’t stand to have my wrists or the veins in the back of my hand touched. Sometimes I wonder if the pain I feel is also amplified by this over sensitivity. I had ear inflammation a few months ago caused most likely by the audio immune and the roaring in my ear was impossible to ignore.
Sometimes something switches in me and my senses get even more acute. Often when I have an migraine or anxiety. At this point I can’t stand the smell of the dogs anywhere in the house, the neighbors weed wacker two blocks down makes me feel like screaming and I can not find anything in my closest comfortable enough to weary so that I don’t want to rip my skin off. I can feel and see dirt on my skin, my hair itches my shoulders, and I can hear my heart beating, and my own breathing sounds impossibly loud. Add pain to that and I feel like I am literally going insane. I can feel often where the pain is exactly, which ribs are dislocated, what joints are under attack, often pain deep deep in my bones, or right under the surface of my skin. Maybe this is where any obsessive compulsive behavior of mine originates from.
It is something I am going to have to start considering in my quest for health…ways to deal with this over sensitivity, or ignore it. I would love to hear from others, or any information anyone has on this.
Filed under Coping, Health, soul