Tag Archives: Chronic illness

Some Uncomfortable Realities of Life With Chronic Illness

I’m not going to lie:  I just had a really tough week.  I mean a Really. Tough. Week.  I’m not referring to lovely TMI symptoms, although there were some of those too.  I’m talking about the nitty-gritty, cold hard realities.  At first I was hesitant about sharing all this.  After all, there’s a reason no one tell you these things:  they’re uncomfortable.  But ignorance is where misconceptions start, so I’m taking the plunge and sharing the more uncomfortable realities of life with an illness that isn’t going anywhere.  Here goes!

1.)  My illness puts me on house arrest more often than I care to admit, especially in the dead of winter.  I just went five days without leaving my apartment.  My record is 18 days.  It’s not a matter of “just getting out more”, so if that is what you were going to say to me, kindly shut your cookie hole.  Sometimes I literally just can’t get out.  A mobility service dog will increase my chance of being able to get out, but until or less I am accepted for one, this is the reality.

2.)  In addition to being painful and miserable, chronic illness is as boring as hell.  This week I actually bawled like a baby, not because I was depressed, but because I was so blooming BORED!

3.)  On days I can’t work, socialize, or read, I will blow out brain cells watching TV because that is far better than letting soul-killing depression sink in.

4.)  Depression and suicidal thoughts are extremely  common in people who life with chronic illness.  Honestly, if I live alone, I’d probably be dead by now.

5.)  Rude comments are heartbreaking.

6.)  Sometimes shaving is a non-event.  This isn’t about making feminist statements.  It’s about making the statement that I am too exhausted and hurt to shave.  (Yes, hurty is a word.  Deal with it! :p)

7.)  On the really bad days, the “invisible illness” concept feels like a myth.  I don’t understand how people don’t see it.

 

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Fear and Doctor Visits

It’s 2016.  I graduated from high school 10 years ago.  My brain doesn’t know what to do with that.  But I digress.

I saw the fibro doc yesterday.  I have to be honest: doctor’s appointments make me pretty anxious these days.  It’s not like I’m terrified of needles or anything like that.  At this point I’m so used to them that they’re no more painful than bug bites.  (It probably helps that the Great Vein Explosion of ’15 toughened me up a bit!) It’s more about the lack of control over my body.  Doctor’s appointments feel like a big neon sign that says, “Ha ha!  Look at her!  Her body’s broken!”  I’ve always felt different.  Hearing aids, being learning disabled, and wearing modest clothing in a world of Victoria’s Secret models will do that to a person.  But I am so used to those differences by now, and they’re either positive or neutral.  I have yet to find anything positive about having a body that doesn’t feel like bodying.  Everyone my age is getting married, having babies, going back to school, getting promoted, and I’m over here jumping for joy because I successfully walked backwards in my last PT session.

I also hate doctor’s appointments because I am just so sick of medical stuff in general.  At least it’s better than when I was on Lupron in that I actually have energy for a handful of non-medical activities.  I had to stop watching “Call the Midwife”.  When I’m not actually in a clinic or hospital, I don’t want to be thinking about that stuff, if that makes any sense.

I struggled with anxiety long before my body copped an attitude.  Frankly, most of my loved ones were well-intentioned but completely misguided when it came to helping me manage my anxiety.  People think telling an anxious person that there’s “nothing to be afraid of” is a good idea, but in reality it will backfire every time.  In my situation, there are plenty of legitimate concerns.  You can’t tell me I have nothing to be afraid of.  It’s not about pretending you don’t have fears.  It’s about looking at them and saying ,”Okay, what can I reasonably do to prevent this?”  I let go of fearful thoughts a lot quicker when I have the freedom to express them and let them go.

Things I Wish People Understood About Chronic Illness

1.)  Chronic illness does not take the weekends or holidays off.  I have had to spend Easter and New Year’s Eve in bed more than once.  It sucks but there is nothing I can do about it.  Please don’t make me feel any worse about this than I already do.

2.)  I’m not unreliable.  My health is.

3.)  Just because I may not use my crutches or wheelchair on a given day does not make me all better.

4.)  I get the best results when I combine traditional and alternative medicine.  It’s very annoying when people tell me that one is better than the other.  There are pros and cons to every treatment.  When dealing with complex illnesses, you have to pull out all the stops and use everything you’ve got.

5.)  I’m sick to death of unsolicited medical advice.  Please don’t go there.

6.)  It’s possible to be allergic to natural treatments.  Some natural treatments can also make symptoms worse for some people.  I am allergic to calendula (an ingredient commonly found in natural eczema creams), and ginger essential oil makes my nausea worse.  This does not mean I am refusing to use all natural remedies.  This means I know my body.

7.)  I know more about my conditions than some doctors.  That is not half as frustrating as when they pretend they know when they don’t.  If it’s not their specialty, it’s understandable that I know more than they do.  I wish they’d admit they don’t know what they’re doing and send me to somebody who does.

8.)  Losing fantastic doctors to moving and insurance changes can be very stressful and devastating.

9.)  Having multiple chronic illnesses is more common than most people realize.

10.)  Taking medication with significant side effects does not mean I am being cavalier about what I put in my body.  It means that I have carefully decided that the side effects are nothing compared to the disease itself.

11.)  There are times when I have to clear my social calendar and focus on taking care of myself for days of even weeks at a time.  Complaining about this will not change it.  I promise i hate this more than anyone else does.

12.)  Treatment is rarely one-size-fits-all.

13.)  Getting an accurate diagnosis can take months or years for some people.  I started having symptoms of endometriosis in 2006 and was not diagnosed until 2009.  Thankfully my fibromyalgia and IBS were diagnosed almost immediately, but not everyone is that lucky.  I’m having joint pain and dislocations of unknown origin, and I have no idea how long it will take to get that diagnosed.

14.)  My definition of an “improved quality of life” is not the same as a healthy person’s.  To a healthy person, it means being able to do as much as you want.  To me it means being able to do some of what I want, and getting to a place where I am content with that.  I don’t do physical therapy with the intent of someday running a marathon.  I do it with the intent of hopefully someday having a bit less pain and fatigue when I walk and do everyday tasks.  It’s not pessimism; it’s realism.  I’m a human being, not Superman.

How about you?  What do you wish people understood about live with chronic illness?

Love/Hate Update 12/2/15

I know my blogging consistency has been craptastic lately.  And realistically, I’m not sure how soon that will change.  I do want to write more (blogging and otherwise), but right now my PT sessions and my PT “homework” is taking up most of my energy.  I’m also realizing that I just don’t function well when I don’t keep my living space clean and organized.  So that’s where most of my time and energy needs to go right now.

I did manage to throw together a love/hate update, so here you go!

Love:

-The new apartment!  Justin and I were housesitting for my parents while he was in school.  (They are now retired and RVing.)  We moved into our own place at the end of October.  My body LOVES it here.  There are three elevators, so there’s a plan B and a plan C if the one closest to our unit breaks down.  We have our own washer and dryer, so I can do several teeny loads instead of one big mammoth load.  The building is only 15 yers old, so there aren’t any mold issues.  My asthma has been flaring up a lot less since we moved here.

-reading about random acts of kindness

-green tea, all kinds of flavors!

Hate:

-systems that perpetuate spiritual abuse and other types of abuse while pretending to have it all together.  (I’m talking to you, Duggar parents!)  Toxic chemicals come with warning labels.  It should be the same for religious institutions.

-all the crappy societal messages about how we should hate our bodies and shame ourselves for indulging in holiday goodies

Why I Stopped Referring to Disabilities as “Gifts”

This is something I have wanted to write about for a long time.  I avoided doing so because I know that there will be backlash, but I’m at the point where that’s a risk I’m willing to take.  Besides, I’m the gold standard for what is and is not an appropriate comment, so anyone who wants to spew BS has to get past me first.

Here goes: I am done referring to disabilities as gifts.  I am done pretending to agree with people who refer to disabilities as gifts.

As someone who lives with multiple disabilities and has had exposure to many others, I firmly believe that calling disabilities “gifts” is dishonest.  I read this great article about the disservice that autism whitewashing does to all involved.  That doesn’t just apply to autism.  If you had to live with any of my conditions and you called them gifts, I would ask what you’ve been smoking.  Please don’t misunderstand me.  I’ve learned the hard way that the victim mentality gets us nowhere.  But neither does faking positivity.

During the past couple months, I’ve had several experiences that show just how anti-gift my conditions really are.  Being down to one working hearing aid and struggling to understand what’s being said is not a gift.  Losing compassionate, knowledgeable providers to insurance changes and knowing more than your new doctors is not a gift.  Incompetent pharmacies that botch your refills are not a gift.  Being shamed because essential oils, while wonderful, did not miraculously cure you is not a gift.  Being told that G-d is mad at you for being sick is absolutely NOT a gift.

There have been many gifts in the midst of these recent crapshoots.  Friends who have seen me at my worst and love me anyway.  Kitty snuggles that lower my heart rate and pain level, even if only by half a point on the pain scale.  A husband who throws on his “caregiver” hat when I need him to.  I am so grateful for those gifts and I don’t take any of them for granted.  But it’s life itself that brings gifts.  Disabling conditions just plain suck

Love/Hate Update 7/3/2015

This is going to be super quick because I feel like crap on a crayfish, to quote “Parks and Recreation.”

Love:

-“Parks and Recreation”, speaking of which.  I just got the schedule of events for my town’s Raspberry Days festival, and now I can’t look at it without thinking about the show and laughing hysterically.

-Lara bars.  Seriously, those things are saving my life right now.  No gluten or soy, but plenty of bonkers awesome deliciousness complete with a great carb/protein balance!

-teddy bears.  Don’t judge me.

Hate:

-the fact that my insurance company thinks 12 tabs of Zofran (anti-nausea drug) a month is sufficient.  Methinks that decision should be made by professionals, as in people who actually use the stuff and know how many tabs people actually need.

-today.  Seriously, today needs to die.  I woke up feeling absolutely miserable and nothing I’m doing is helping.  I think my body morphed into an angry toddler when I wasn’t looking.

-the fact that this is the second holiday I’ve been sick for this year.  I spent this past Easter at home on my bed glued to my aromatherapy diffuser and jump-starting my lungs with the Ventolin every few hours like clockwork because my lungs didn’t feel like being lungs.  Tomorrow is Independence Day which I’ve really enjoyed the past few years (more for the family/framily togetherness than patriotism).  But since every part of my body and all their grandmothers decided to cop an attitude,  I’ll probably be spending most of the weekend with Netflix.

-fireworks.  Every year I have to ditch the hearing aids for a few days over the 4th because of all the legalized stupidity, a.k.a fireworks.  I really don’t appreciate this.  The Lupron shots made my existing hearing loss and crappy speech perception even worse, so going without my aids for a few days is just great.

-the fact that I am exactly 28 days away from seeing the fibro specialist, yet I feel bonkers horrible today.

Okay, you’re probably sick of all my complaining.  Have a safe and fun holiday weekend!

More in-depth update

I feel like my health situation has just about turned my life upside down, and in so many ways I don’t even feel like the same person I was when I started blogging (in both good and bad ways).so I thought I would give a more detailed update.

I’m pleased to report that I can now eat dairy in moderation!I can also eat any fruits and vegetables, though I have to be careful with acidic stuff on days I feel nauseous. I am gluten-free for the time being, but eating a couple of regular crackers today did not cause any symptoms. So I may be able to reintroduce more gluten into my diet so I can at least have the occasional treat. I really need a soft pretzel. Just thinking out loud here!
I’m currently experiencing a significant level of pain and mobility issues due to my fibromyalgia. Typing can be very exhausting and painful because of the pressure on my joints.i’ve got Siri on my phone and that is how I am texting, emailing, blogging, and using Facebook.I am having intermittent issues with blog post formatting, so please excuse grammar errors and weird spacing in my blog posts.
I’ve been asked how I am able to hand write, draw, and crochet. Those activities don’t put pressure on my joints in the same way as typing. I hold my pencils sideways, and I use pens and crochet hooks that have grips.The battle plan for my fibromyalgia treatment is kind of up in the air. There are lots of options for treatments, therapies, specialist at Cetera.there is a lot to be said for and against each option, just like with any kind of medical situation.
I honestly don’t know how much I will be writing about my treatment in the beginning. This is both because blogging takes a lot of work right now, and because I am still in the adjustment phase. It may be helpful for others to read about that phase ofA diagnosis, but I am not ready for that yet. Besides, a huge part of the emotional survival pieces thinking and writing about non-illness stuff. I think it would really help me if I put more effort into blogging about those things when I do have the energy to blog.
Have a great weekend, and I will be back on as I’m able!