My Door is Always Open…. Sometimes….

My Door is Always Open… Sometimes…

The title of this post comes from the old children’s TV show “Duck Tails”.  The bad guy was a fox, and I would laugh because he would tell his crew ,in an attempt to be a good boss, “My door is always open, sometimes.”

This is the tale of my life.

Sometimes I am healthy enough for people to come over! (photo by Eric Vicaria)
Sometimes I am healthy enough for people to come over! (photo by Eric Vicaria)
Sometimes I'm not...(Photo by E.Vicaria)
Sometimes I’m not…(Photo by E.Vicaria)

It’s very lonely to have a chronic disease. I often want to have someone visit.  In fact, while I may stress about it before hand, I always find I do better after having someone visit.  Talking to a real live person, especially a friend, is very important.

The main problem is the unpredictability of any of these chronic illnesses. I have good friends that suffer from migraines.  I have only had two real migraines in my life, both sent me to the ER as I had no clue what was happening.  I can not imagine having to live with several of those a month. One friend lives with several a week.  Her life is one of cancelled appointments.  A migraine not treated early can incapacitate her for days.  She must cancel everything and take medication and rest.  This had not made her popular with her hairdresser.  Lunch with friends is only planned with fingers crossed.  If she wants to go on vacation, she plans in a few migraine days.  She told me “If I want to see and do a certain number of things on vacation, I know I’ll miss at least one day to migraine.  So I take an extra day of vacation to make up for it.

Her life is one of excellent health, 95% of the time.  It’s that 5% that means she can plan ahead, but the migraine can cancel plans at any time.

My own life is based around “How do I feel this morning?”  Timing is everything.  If I am having a bad flare, I have to cancel things.  Having my husband around helps.  He can entertain company and if I need to rest I do so.

I really want to have my good friend Chip come visit.  I always enjoy his company.  He’s even giving me one of his grandfathers paintings, and I”m really honored.  He knows I love REAL ART in my home as it gives such warmth to any decor.  Something made by hand reflects the personality of the maker.  I’m ready of have some of Chip’s family in the home I share with my family.

But, I keep delaying the visit.

First off, we are just moving into a new home.  This home was purchased because of my arthritis.  It’s one floor, but it’s from the 1970’s. Everything, and I mean everything, is just old enough to need replacing!  Also, my health is reflecting the stress of the move.  Boxes everywhere, and I’m trying to do a bit too much and paying for it.  Then there is health care.  To deal with the move I put off a lot of appointments and blood work and even starting physical therapy.  The focus was the move.

Now i am playing catch up.

I can handle a crowd sometimes....(photo by E.Vicaria)
I can handle a crowd sometimes….(photo by E.Vicaria)
Not so much others.... though I know company is very good for my mental health! (photo by E.Vicaria)
Not so much others…. though I know company is very good for my mental health! (photo by E.Vicaria)

However, I keep reminding myself, Chip is one of those friends that won’t care.  I care, in that I want to give him a good visit.  I want to enjoy his visit.  I would enjoy his visit no matter what, but I really would rather be having a good day!

I also have wool weekend coming up, which I haven’t even planned.  This is a long weekend of wool and yarn shopping in New Hampshire. It’s where I stock up for yarn for the winter, and also wool to do my felted creatures.  I have friends that will come and NOT mind if I decide to stay in bed, or I am up at 3 am because I am in too much pain to sleep.  The problem is I MIND.

Pity is the worst feeling ever.  If someone comes over during a really bad flare and they don’t feel pity for me they are cold hearted.  But, people with chronic but invisible illnesses tend to hide our pain.  We don’t want people seeing the time spent with tears and in the fetal position desperate for some relief.

I’ve written before about the curse of these illnesses.

People like to say “I am not afraid of dying, I’m afraid of being in pain.”

We’re in pain.  No one asked us “So, think you can handle this pain?”

Seriously, this is the nightmare people fear more than death.

It doesn’t matter we often say “I can’t handle this.”  You do.  You just do.  At one point I think each of us asks “So, I have no choice with this?  I just handle it?  Because I am bad at handling this.  Really life?  This is what I get?” (Life just laughs)

A chronic illness often means life has chosen a lonely road for you. You have to find those willing to put up with your inability to plan your days. The illness rules, we adapt, our friends do also. (Photo by Andrew Merritt)
A chronic illness often means life has chosen a lonely road for you. You have to find those willing to put up with your inability to plan your days. The illness rules, we adapt, our friends do also. (Photo by Andrew Merritt)

That “Everything is OK” image is something we even try to preserve for ourselves.  I often fail myself when I mistakenly think “This isn’t that serious, I can keep going, I feel pretty good now.”  Then I collapse into a flare brought on by my own over confidence.  My doctors have clearly pointed out that I have to STOP doing things before I start to feel tired.  I have to quit while I feel pretty good.  This is very difficult.  “I feel good, I can go to the grocery store also!”  (NO NO NO NO)

This is alas very Un American.  We’re supposed to push ourselves and run marathons and travel the worlds and crap.  Right.  It’s like the 100 year olds they write stories about that go cliff diving in Mexico. This is just a false “feel good” story.  It’s amazing how many “feel good” stories make people feel terrible.  Not running a marathon or cliff diving.  No one writes artless about people with chronic illness that are normal.

I’m going to unpack some more, catch up a little with the doctor side of things… and hope to have Chip down for some fun in October.  Also Wool Weekend will happen.  I’m going to pace myself, and focus on getting the wool I really need for projects.  I may not eat out. I can rest while others enjoy going to “Just one more stop”.  Also I have good friends that drive for me, which means I can enjoy myself even more.  Driving is painful, I can do it, but I do much better NOT doing it.  If my friend Natalie drives it means I can enjoy the fun part, the shopping.  It’s a gift she gives me.

I need to learn to trust that my friends won’t judge me and won’t be upset if I have to cancel or say “I just need to rest now, thank you.”

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One thought on “My Door is Always Open…. Sometimes….

  1. Pingback: The Call’s Gnuz & Lynx Roundup | 2015.09.20 | The Call of Troythulu

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