One Step Forward, One-hundred Steps Back

This blog is in reference to my health.  Things were actually going okay (for me at least) till January.  I’ve been living with chronic pain in multiple joints, so okay for me means I can go to bed without crying because the pain is so bad.  I believe I tore my hip capsule on the post-op hip.  I felt a sharp pain when it happened.  Afterwards, I was in a lot of pain and thought I had torn my labrum (would be the third time for that side).  Over the next few days and weeks my right hip started sublaxing (partially dislocating).  It hasn’t done that since before the surgery.  It hurts like hell.  What else would it feel like XD  I don’t think I retore my hip labrum because I’ve had that happen three times, and this is different.  But the days after a sublaxation are horribly painful.

Everything comes to a halt when I’m in severe pain.  I still had to work full time, and I cried a lot before work because it was so painful.  Of course at work I pretend everything is fine.  I’m good at hiding my pain behind a smile.  It’s also very hard to sleep when I’m in a lot of pain, so I had to work several days on 4-5 hours of sleep.  I withdrew from everything, even my friends.  It’s not just the pain, but also fear.  I’ve had three surgeries on my hips, and the last one was with one of the best hip surgeons in the world.  If he can’t fix me who can?  Ehlers-Danlos Syndrome is playing a huge role in the sublaxations, but my left hip doesn’t sublax, so I’m concerned I still have an unstable right hip joint.  But I really don’t want another hip surgery because each one carries a risk that I could get worse.  I heal about four times slower than normal people, so I won’t know till at least 2 years post-op whether this surgery was successful.

Part of me feels guilty like I wasn’t trying hard to enough with my friends or that I haven’t been dedicated enough to writing.  But a larger part of me realizes there is little I can do about it.  I’m very self-critical, and part of letting go of some of that self-hate is letting go of the guilt.  It does frustrate me that I have written so little since starting my job as a pharmacist in September, but I only have so many spoons and work takes up most of them.

I’m not a normal person.  I can hardly walk right now.  We hired house-keepers because I couldn’t do it along with working full-time.  My last sublaxation happened after I spent several hours cleaning the house.  I have been doing strengthening exercises as well, and I have gone 13 days without a sublaxation.  That’s the longest since the beginning of January.  My right hip joint didn’t start sublaxing until I had been bedbound for several years, so I think my weakness is playing a big part in this.

My husband and I are also planning on starting a family soon, which probably sounds crazy.  It is I guess, but my health is only going to get worse as I age.  That is a long story in and of itself because I will be a high risk pregnancy due to Ehlers-Danlos Syndrome.  I’ve already consulted a high-risk gynecologist about several issues, and will be seeing him again after I get pregnant.

I don’t know what the future will bring.  I try not to think about it because it scares the hell out of me.  When I have kids I will only be working part-time.  I try to focus on the things that I can do instead of the things that I can’t, but that list of things I can’t do keeps getting longer.  *sigh*

Now I’m off to read, The Road for like the fifth time XD  It’s become a comfort book of sorts for me.  When I’m not doing well I like things that are familiar to me.  It reminds me of everything that I love about writing ❤  I’m reading that and short stories published in Glimmer Train, a literary journal of short stories.

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4 thoughts on “One Step Forward, One-hundred Steps Back

  1. Sounds like you have an awful lot to deal with, so don’t be too hard on yourself. It’s frustrating when you can’t do everything you want, but that’s how it goes sometimes. I have a chronic health issue that flared up in the last few weeks and my productivity has really suffered. My default is to beat up on myself, but that only makes everything worse in the long run.

    Hang in there and be nice to yourself. *hugs*

  2. Thanks Christina 🙂 I’m sorry you are suffering from a chronic health issue too 😦 It’s hard to write or do anything when you are in pain or aren’t feeling well. It reminds me of Maslow’s hierarchy of needs. Health and well-being is at the bottom of the pyramid, and if that need isn’t met it is hard to meet needs higher on the pyramid like relationships and self-actualization. Of course life isn’t as neat as that, but when I’m in a lot of pain I withdraw from everything. *Hugs* to you as well.

  3. I hope you are doing okay–I come by your blog when I can to see what you’re up to and I notice that you haven’t been very active lately. I am thinking of you and hope I can see more of your updates. Take good care of yourself because we need to make sure we are healthy before we can do anything else.

    • I’m a month late in replying to this comment :$ In short I had a physical and emotional breakdown. My hip keeps sublaxing, which terrifies me because it means I might need a fourth hip preservation surgery. I was told I might be fired a few weeks ago. In the midst of it my husband and I have started trying to conceive our first child, which is difficult when you have bad hips. I missed writing and reading! I’m trying to come back again. Just looked over at your blog and saw lots of new posts 🙂 Your pieces always inspires me because the poetic lyrics remind me of what I love most about writing ❤

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