Tag Archives: illness

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.


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Filed under Chronic Pain, communication, Coping, depression, Health

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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Filed under Coping, Daily Journal, exhuastion, Migraines, Pain, Psoriatic Arthritis

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.

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Filed under Coping, depression, exhuastion, Health

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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Filed under Daily Journal, exhuastion, Infusions, Pain, Psoriatic Arthritis, Remicade, soul

Daily Health Journal- Day 17

This is the day I have been waiting for.

Yesterday wasn’t too bad, migraine, and ribs out.  I wound up going to my Chiropractor in Murrieta for the second time this week, at 8 pm on a Friday night and he put three ribs back into place and worked more on my migraine.

Today I have been busy doing little jobs most the day and my energy level has gone from about a 5 in the morning to a 5 now.  I am taking little breaks all day long but getting a lot done.

My pain level has been great, mostly blue without migraine, interrupted with little green and sometimes barely yellow of waves of migraine.  Whatever my chiropractor did seems to have broken my nearly two week migraine curse.

I have been building frames, and doing some rather mundane but important art maintenance.  Starting to check little things off my to do list that have been pushed aside for weeks due to lack of energy or health.  I feel good.  In a very calm thankful way.  I hope this lasts for my very busy next two weeks.  Its too early to assume that this is the Remicade working, but it sure adds hope.

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Filed under Daily Journal, exhuastion, Health, Migraines, Remicade, slipping rib syndrome

Disregarding the scary stuff

I have noticed many of the websites about Psoriatic Arthritis don’t even touch on the scary stuff.  Many just mention stiff joints, and aches .  Wouldn’t it be a blessing if that’s all it was?

Some go on to mention fatigue and joint damage, and fewer still joint deformity.  It was years before I found out my migraines were probably caused by it.  There is very little about how aggressive this illness can be.

Very few mention the things that scare me most.  Heart attack, and that this illness can attack the organs.  It can lead to blindness or auto immune deafness.  Yes, luckily these things are rare, but shouldn’t we know they are part of it.  I was completely ignorant until I went off my meds without my doctors permission and got a stern lecture from my doctor.  If I had known more earlier it may have made for an earlier diagnosis.  It took me years to learn that the crushing heart attack feeling pain in my chest and jaw was simply the Psoriatic Arthritis.  Just swelling around my heart.  Knowledge makes such pain less frightening when we experience it.

I had ear problems and I went to see three doctors and had to ask if it could be autoimmune, they said yes, gave me steroids and it went away.  I can’t expect every doctor to know everything about PsA, and I do think I have the most amazing specialist ever, but I would love more information without having to dig so hard for it.


Filed under Health, Migraines, Pain, PsA, Psoriatic Arthritis

A full tank of gas

This is a metaphor that I used to explain to a friend how chronic illness effects my energy levels.

Everyone is a car, most are cars with 10 gallon tanks.  Some have more…some are monster trucks.  Those who are chronically ill have smaller tanks.  Maybe we can fit in 8 gallons, or maybe only three. But the main problem isn’t how much we start out with, its that our tanks leak gasoline.  If we stay parked they leak much slower, but even staying parked the tank is getting emptier and emptier.  If we drive we not only use gas to keep the engine running but we leak gas too, and the faster we drive, the quicker it leaks.  That all sounds annoying but it gets worse.

The gas guage doesn’t work, so we can think we have two gallons left, and all of a sudden we are on empty without warning.  Then we just stop, and there isn’t really anything you can do, except fill up again.  But the gas stations are closed.  Maybe for a night, maybe for a few days.  Maybe a tow truck can deliver a gallon of gas, but it cost a fortune.  So we always need to be very careful to not run out of gas, it effects every choice we make.

If that is isn’t bad enough there is something wrong with the engine and we don’t know what it is, but sometimes even with a full tank of gas the car doesn’t run right or at all.

So my energy/exhaustion scale is 0-10, Zero being no gas, 10 being a full tank.  I really don’t want to talk about “How much gas do you have now”  so I will just leave it a scale of 1-10.

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Filed under Chronic Pain, Coping, Health, Pain, Psoriatic Arthritis, Uncategorized