Tag Archives: exhaustion

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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Daily Health Journal- Oct. 31

Well I won’t be able to call this a daily health journal if I don’t start writing in it more.  Just by the time I get done with running my errands and taking care of my responsibilities I go to lay down and once I lay down for the evening I don’t move again until morning.

It’s 3 am and I am up with acid reflux.  I don’t know how someone with acid reflux as bad is mine forgets they can’t eat pizza, but I ate it.  I suppose its better than being up with a migraine or other pain.

Monday I had Steve Ito work on my shoulder again and it hasn’t bothered me since.  He also worked on my migraines again and my morning migraine wasn’t  there when I woke on Tuesday.

I also saw Dr. Le about the Remicade and Psoriatic Arthritis on Monday.  I was hesitant to have the Remicade every 6 weeks instead of 8 but the pain does come rushing back after just a couple of weeks and I want to get the most benefit I can from the Remicade so I am following his advice and getting the infusions every 6 weeks instead of 8.  Its a hassle since I can’t drive myself and its so far away.  It means someone’s whole day is taken just driving me there and back and waiting for me while I have the infusion. Dr. Le told me about a law called the Family Leave Act, where an employer must give a family member time off to get necessary care.  My husband does get family medical leave but its really good to know about this law and I am sure it can help others if I don’t need it.  Basically a doctor would just need to fill out forms that any HR department would have.  Still I know I am out of service for a couple of days after the Remicade, and that I am asking someone else to take a whole day for me, made me hesitant about agreeing to the more frequent infusion.  But it really does seem to be working, and I so much want to live a normal pain free life.

I have read that the Remicade is a chemotherapy, and I know its not as brutal as cancer chemo, but it was still a little shock to see it in writing on some paperwork the office gave me.  I guess if it works they can call it whatever they like.

Some wonderful news is a friend is going to be sharing a little art studio/gallery space with me.  It’s going to be something that will work around my illness, we will but a heater in, and a sofa with lots of little throw blankets so I can be comfortable when there.  It will also have tons of flexibility so I won’t need to go in at all on bad days.

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Daily Health Journal- Oct. 24, 2012

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.

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Daily Journal – 10/13

Today I hardly care that I have psoriatic arthritis.  It hurts a bit, but its no big deal.  Same thing with migraines…I woke today with a mild one, but still no big deal.  Today I just want to feel better from my surgery. If feels like I have food poisoning and the flu on top of my pain from the actual surgery.  My energy level which was up is today completely spent.  I want to crawl into a dark hole and just breathe heavily and cry out in gasps, wimpers, and screams until the pain goes away.  Tomorrow will be a better day.

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Exercise program with Illness

peI hate to exercise.  I don’t see the point in running if nothing is chasing me.  I have never liked to run.  I love to dance but there is very little chance for dance out here in what still feels the middle of nowhere.  I have always disliked exercise for exercise sake.  Make it fun like fencing, dance or yoga sure, I will do that.  I love all sorts of that sort of “sport”.  Exercising now is harder because it hurts.  It just hurts.  And not that good kind of muscle burn that you feel working out that lets you know you are getting healthier and stronger, but a bad hurt.  The kind of hurt that says if you will probably be in bed the next couple of days.  Then there are classes.  Yoga classes and dance aerobic classes that are just disastrous for people with limited energy.  10 minutes into the class you know you need to quit, but you are too embarrassed to leave, so you wind up leaving anyways after 30 minutes and spending the next two days in bed.  Then there are silver sneaker programs for elderly.  You can watch elderly people run circles around you, hollering things like “keep up young lady” and “is that all you can lift, grab some real weights”.  Hopefully you can sneak out before anyone starts talking about their bowels.

I think I have found a solution that might work for me.  While flipping channels in a bit of a vegetative mood I came across an older woman with a ballerina’s body.  She was doing stretches simalar to what I used to do for warm up in my ballet classes.  She mixed it with some yoga and other dance like movements.  Next thing I new I was standing up, doing two or three movements of each exercise.  I hit “record series” on my TV.

After such a good weekend I decided to start her exercise videos in the morning when I am feeling my best.  Yesterday I probably did 6 minutes.  Today it was more like 4.  When it start to really hurt and my muscled refused to work I gave up.  But only for today.  I will find the name of this stretch program and post it.  Its on PBS in the early morning.  I will also mention my progress with it on my daily health journal.

I would love to hear other ways people with arthritis or other chronic pain illnesses stay fit.


Filed under Chronic Pain, Coping, exercising with illness, Pain, Psoriatic Arthritis

Daily Health Journal- Sept 26

Well its been almost a month since my first Remicade, but somehow it feels so much longer.  Its a strange thing to focus on my health when I have always tried in the past to ignore it.  Yesterday my pain level was low.  Green all day mostly just with aches.  My exhaustion level was high though.  I drove my husband to half a dozen car repair places yesterday, and the small trips felt like I had been driving all night.  My fatigue was so strong I actually fell asleep at an intersection on one of my 10 minutes drives.  I was home by four and in bed.  At 6 I got up and half made dinner with some help and was back in bed by 7:30.  My body literally wouldn’t move from exhaustion.  I have most today to rest up before helping out my grandmother on Thursday and Friday.  I will be spending my mornings helping her have an estate sale and need to be strong and as healthny as possible.  I should be able to make it home by the time my son gets home from school and run him to his lessons then go to bed to save up for the next day. I work on Saturday, and Friday night some friends and I are taking dinner to a friends home who is unable to get out because of illness.  I feel I am neglecting friends who could use some company and support.  I have to remember that even though I am having a hard time there are others who are having a harder time and they need some attention as well.  This weekend I am helping grandma and my dad, maybe next week I can find the time and engry to go see my dear friend Jena.  She is such a fighter herself, dealing with chemotherapy and radiation the last year and still being an incredible mom.  We have gotten each other through some rough days and I am eager to spend some time with her soon.  Friendship is important soul food and I shouldn’t neglect it in my quest for health.

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Daily Health Journal- 9/25

I have been five days away from my Journal; four at an art show and one day recouperating.  This weekend my health was remarkable.  I think I have finally reach an end of that what seemed to be a nearly month long migraine.  I had a couple mind migraines through the weekend and one really annoying one most the day on Saturday but it was my first weekend in a long time where I spent more time without migraine than with.

I had hours on hours of crystal blue levels of pain, or no pain in this case, to match the blue of the sky and ocean.  My cheap motel room was up a step hill with several flights of stairs to drag myself up and down a few times a day, which gave me quite a workout.  Every evening after the show I felt like crawling into a cave and sleeping forever, but my business partner gave me a nightly foot massage and after that and a cool shower (it was hot and sticky in Catalina) I was able to make it down the stairs again every evening with just about enough energy to walk to dinner and back.  By 3 oclock daily I was exhausted, and my 6 could hardly move, but it certainly beat waking up that way!  Maybe it was the clean air doing me well, or maybe the Remicade is working, or maybe just my body being able to fight my illness because it wasn’t having to deal with the migraine.

I did look longingly at  the night club as I walked by at 8:30 knowing there was no way I could actually dance, or even be up by the time it opened its doors, but I did plenty of walking, made new friends, and generally had a great working vacation.  The art show was a success and I am already excited about next year.  My partner and I are considering doing less markets and more art shows to better focus my limited energy.  I also have vowed to do less volunteer work, limiting my work load to the middle school PTA, and after the year finishes not signing up for another year.  I have limited energy and need to respect that.  I need to put time and energy into my art, and refocus there.  Last year I did far too much volunteer work and far too little of my own art work.  I am also going to be taking on more community art classes so will need some of my reserved energy for that.    Being selfish about my energy always felt like a horrible thing to do, but now I realize its is the only way to realize my dreams and it sounds down right liberating.

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Filed under Chronic Pain, Daily Journal, exhuastion, Infusions, Migraines, Psoriatic Arthritis, Remicade