Tag Archives: work

Daily Health Journal- Nov. 1, 2012

Yesterday was a big day for me.  I stayed home resting until about one then ran a couple of errand before class.  By the time my kids arrived for class I was energized.  I am so fortunate to have a job that I can plan my energy around and that I get so excited about that my body always seems to rally itself without fail.  I managed wonderfully all through class and didn’t even feel a bit of pain or tiredness until I was cleaning up.  By the time I got home I was exhausted and limping, which often happens, but feeling satisfied at another few hours spent changing the world in tiny ways.  Normally I would have limped up to bed and dinner would have magically appeared but that was not an option last night.  Last night was Halloeen.  On Halloween we have a family tradition of hosting a party for friends, neighbors and family in our driveway.

I pulled up and was delighted to find my husband and son had already decorated, got out the bbq, and tables, and had the whole thing ready to go.  My husband had even set up a candy passing out area for me, so I could feel like I was helping and not do too much.   It was  so great to see old friends that I hadn’t seen in way too long drop in.  My grandmother and Dad and Janet had adorable costumes, and my son’s band played to a crowd of teenagers and mothers.  I got to see my favorite little babies, and held them inspite of the pain my body was in.  I often felt like crying my body hurt so badly, but I experience pain all the time, and if I went and laid down the pain would continue, so I tried not to do too much, but enjoy the gift of friendship and love that surrounded me.  Too often I stay home because of pain, thinking if I drop in for a just a little, and am subdued because of pain, that I will just ruin the party.  Last night taught me that pain or not, my loved ones are happy to see me, and even those who have known me a long time, are perfectly fine that I am not the life the party.

For a while now I have not been able to hike and workout and my body, which was on the chubby side to begin with is certainly showing it.  I miss my outings with nature.  I miss my clothes fitting.  I miss not being able to do as much volunteer as I used to do.

Yet right now I am excited about the things I can do and the oppurtunity I have.  I have  a job that only requires short bursts of energy that I can plan for in advance, that in some way or the other touches my heart each day I am there.  I have family and friends that love and support me, no matter if I am healthy or not.  I have a rare golden oppurtunity right now of opening an art studio/gallery with my partner in an artsy town, that we will be making as comfortable as possible with my illness in mind, so that being in the studio won’t be any harder on my body than being at home.  Comeplete with a sofa and blankets in back, so if I get really bad I just need to close the doors and turn off the lights and get some rest.

Right now my body feels like it has been hit by a truck.  It hurts no matter how I move it or not move it.  But my heart and head is filled with love, satisfaction and the glow of oppurtunity, knowing that this life is worth living, no matter what my limitations and pain intensity.



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Filed under Chronic Pain, Daily Journal, exhuastion, Health, Psoriatic Arthritis

Daily Health Journal- Day 12

Yesterday was an interesting day for me.  I was mostly Orange on my pain scale all day, but I decided to push through with my plans.  I went to see my grandmother in the morning, and then went up to Idylwild to meet with a gallery owner.  I couldn’t have made even a portion of the trek myself.  My pain would spike to levels that made it unsafe to drive.  I relaxed in the shade of boulders midday and did some  simple paintings.  I was home by 6 and went straight to bed unable to move. My husband took care of dinner. It was just such a good reminder that with a little help I can have a rewarding and even beautiful life in spite oh high pain levels.

Today I have my Remicade infusion and am glad I have a ride there today, as it is almost an hour and a half drive each way.  I hope to feel well enough to get my ribs put back into place today, because that would remove so much of my pain.  5th day on my migraine but its tolerable.

I have a huge week next week with the PTA.  I have no less than three PTA meetings next week, book fair, Open House, and the Back to School Dance.  Luckily I have a great team, but I still have to run the meetings and do my fair shifts on the book fair and dance.  All that on top of work.  At least its nearly week after from Remicade so the exhaustion from the meds should be worn off I expect.

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Filed under Chronic Pain, Coping, Daily Journal, exhuastion, Health, Migraines, Pain, Psoriatic Arthritis, Remicade, slipping rib syndrome, soul

daily Health Journal- day 4 cont

Today was a rough day to have to do a show. I countedcompletely on my partner Tim.  I couldn’t stand to set up but was able to set up the jewelry after Tim brought me a chair. After set up and breakfast I was so exhausted and in so much pain I couldn’t function. Took 2 alleve and Tim made a make shift bed on the curb and I feel asleep right there on the sidewalk for an hour. After I felt quite a bit better and was able to paint and speak to customers. Home now and need sleep. One more show tomorrow then I will plan on spending Monday in bed.

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Why work?

Yesterday my father asked me why I work, when I don’t have to.  The question seemed absurd to me.  Why wouldn’t I work if I am able to?  I am very fortunate in my work.  I am an artist, a teacher, and I volunteer.  Many of my jobs are either short hours, or very flexible.  When I am feeling better I take on more volunteer work, when I have flare ups, I pull back.

I guess I can see where he is coming from.  My brother and sister in law are both on disability, and I am every bit as ill as they are.  They don’t need to go to work, and with money from the state, as well as help from my grandmother and father they even have a nicer car then what my family can afford.  My sister in law spends her total life in bed with Fibromyalgia, my brother avoided surgery that he would have gotten paid for because it would mean he wouldn’t be able to collect the welfare and he would have to go back to work.  He stays home 99% of the time and is constantly high.  They both did all they could to avoid work before they got ill.  I guess my problem with it is, I don’t see why someone would not want to work.  Yes, sometimes work is challenging, but that goes for someone who is healthy too.  And often work is just simply impossible, especially when you are in chronic pain.  Sometimes the pain is so much that getting out of bed is impossible.  But why would you stop trying to get out of bed?  How many ill people wouldn’t absolutely love to be able to go into work if they could?  I think most would choose to.  I think I will always miss the marketing job I left 13 years ago.

Its true I don’t need the money from my jobs to exist.  Many of my jobs don’t even pay.  But I love to work.  Lets say you cut out my paying jobs…teaching kids art and sugar arts.  Well that would take away some of the most rewarding work I have ever done, something that not only gives myself purpose but that inspires others.  If that income is gone then so is much of my disposable income, there goes my money for art supplies, my own workshops, and art shows.  That will then slow down my own art business.  But I guess that doesn’t matter because that is also work.  Its a lot of work.  I don’t just paint, I market, and get out there and sell.  Being an artist is so much of who I am, it is much of my life path, so without working as an artist, there is no life path.  Volunteer work is also work, so I should toss that too, why help others when I can hardly take care of myself?  Would it be better if we lived in a world where no one lent a hand where it was needed?  Would I feel healthier?  There is a point where sometimes I take on too much, and need to let go, but taking away the volunteer work on top of the paying jobs, and the art work would make my life even less.  It would leave plenty of time for me to take care of my family when I am feeling well though.  Oh wait…anyone who has ever raised children well know that raising a family takes more work than just about anything else in the universe.  But I could just let them raise themselves..plenty of parents do it.  Who knows how they will turn out, who knows what if any relationship I will have with them if I just don’t “work” at raising them.

My point is without putting something out there in to the universe, how can we expect to have rewarding lives in return?  Not everyone can work 8 hours a day, I know I can’t.  But we all have something we can give, some “work” we can do.  I may spend more time reading, on the internet and watching tv than many of my peers do, but that doesn’t mean I give up on life, it doesn’t mean I give up on participating.  If you are having a bad day, or a bad week, and you can’t get out of bed, ask someone to bring you stationary, write an elderly aunt, or if you have two hours on energy today spend 15 of that cleaning your bathroom sink, and 10 emailing an organization out there that you want to encourage with words of praise.  Maybe today your work is just simply resting because tomorrow you have a meeting you can’t miss.

Work is rewarding.  Work might build relationships and do some good for the universe, but more than anything work makes use feel useful, and productive, and its such an intricate part of life.

I work because to me doing work of some sort is part of living, and I wan’t to live as full and as rewarding a life as possible, inspite of my health or lack of it.

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Brian Nelson- the story of another artist with PsA

Brian Nelson.

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