Keeping Healthy… Or not.

The biggest challenge I think I have with trying to keep a pretty normal life is exercising.  I know just about everyone has a hard time motivating themselves, but how do you get motivated when you ALWAYS start out feeling like crap?

About once a week I have a burst of energy that only lasts long enough for me to almost do something.  So when it so happens that I’m at home and I get this energy I get motivated to work out on my elliptical.  I go change into my exercise clothes, get my hair put up and find my running shoes, but by the time I get it all together I’m exhausted.  It doesn’t always happen, but most of the time it does.

I guess this is why it’s good to find a support group or to just find other people dealing with the same sort of thing.  A regular healthy person most certainly thinks I’m being lazy, but I swear it’s more than that!  And the extra weight the meds put on does not help.

I know a lot of people with chronic pain try yoga and the such, but I am afraid I don’t have the balance for any of that.  Even water exercises look absolutely exhausting…

Medication – A necessary evil

I’ve been constantly on some sort of medicine since I was 13.  That makes it 10 years thus far.  That seems absolutely ridiculous…  At one point I had a huge pill organizer, like you would see an 80 year old with.  And I honestly couldn’t even tell you what all I have been on; doctors try everything to treat Fibromyalgia.

I think the most frustrating problem that I have with all these medications is that I’ll find one that works for a minute and then it suddenly stops working or the side effects start kicking in.  I tried Lyrica, you know, that medicine you always used to see commercials for that was specifically for Fibromyalgia.  I didn’t do so well on that.  I was afraid to take it in the first place because I heard of all the horror stories about peoples’ faces swelling up like crazy.  I wasn’t so unlucky, it just raised my blood pressure so there was another medication I had to take and it just wasn’t worth the trouble.  The point is the same though, all the medications end up sucking.

I remember a couple years ago that I got so excited because I was finally back down to one pill a day.  I think that lasted maybe a year…  Maybe.  I felt so free.  How silly of me to think that would last.  I think I actually thought the pain just wasn’t there anymore.  Now I’m back up to taking 8 medications.  Shit, I back peddled.

Sometimes I feel bad about it.  I mean, it’s expensive and I’m putting all this shit in my body.  I had a “friend” that basically told me that I’m a druggie because of all the medicine I’m on.  Let’s just go ahead and point out the obvious fact that they are a totally ignorant douche.  Anyways, that makes me not feel bad anymore because fuck that thinking.  Seriously.  I’m just trying to feel normal like everyone else.  I’m not spending all this money to feel amazing, I just want to feel normal.

In conclusion, all the medication is journey in itself when it comes to dealing with chronic illnesses.  It’s awful, but when it works out it’s great.  People will make awful judgements, but let’s see how they act if they had to deal with this.  Don’t feel bad and don’t get discouraged, you’re just trying to feel normal.

What’s with the blog title?

You can’t count spoon when you’re young.

Society can’t accept it, you know?  I was in high school when I was diagnosed.  That gave me a reason to finally be able to tell people ‘Hey, I can’t do everything, there’s actually something wrong with me.’  It may have gave me reason, but no one wants to listen to that, not to mention a lot of people don’t even think Fibromyalgia is a real thing.

Right now I do pretty okay from day to day.  I work, I come home, sometimes I try to clean, sometimes I don’t.  Some nights though, especially when I work weekends, all I want to do is cry because my legs and my back just hurt so bad.  People hear this and think I’m just being overdramatic.  ‘All these other people can do the job just fine and they don’t complain.’  Well, what am I supposed to say to that?  I’m a 50 year old trapped in a 23  year old’s body.  Good luck trying to get anyone to take that  seriously.

So there ya go.  People won’t let you use Fibromyalgia as an excuse when you’re young.  You’re young; you have all the energy, you can go on 3 hrs of sleep just fine, you can work hard and it won’t even effect you.  Man I wish.  I try it all anyways because no one wants to hear that it takes a big toll on me, it obviously takes a bigger toll on older people because… why do we have this preconception again?  I don’t even get it.

Maybe if I had to walk with a cane or had to use something that people could see it would change how people see it.  Honestly, I’ve had to use a knee support before and I just wanted to hide it.  Crazy isn’t it?  Here’s something material that people can see, but I want to hide it because I’m scared people with think I’m faking that too along with everything else.

In high school I used pain-relieving patches like Salonpas and once… ONCE I tried Icy Hot.  I went to my first class, sat down, waited for the teacher…  I sat between the metal heads and the jocks.  After about 15 minutes all of the jocks started asking eachother if they were using Icy Hot.  I was so embarrassed.  I didn’t say anything.  I even did the sprays that smelled like peppermint and were supposed to help, but you can’t just run around smelling like peppermint.  That’s not normal and everyone knows and wants to know why.  It’s just a big hassle.

Anyways, I digress…  I thought the name was actually kind of perfect for my life when it comes to dealing with this.

My journey, shortened. (I swear this could be so much longer!)

My name is Ashley.  I’m 23 years old, live in Southern Indiana and work at a small hospital as a Lab Technician.  I was “diagnosed” with Fibromyalgia when I was 17 and still haven’t come to terms with such a label or how to manage it.

I remember when I was 13 that my legs and my back hurt all the time.  I would have severe muscle spasms and didn’t want to get out of bed for anything.  I spent most of my 8th grade year in the nurses office telling her I didn’t feel well and my magnificent constant fever was my ticket home.  I seriously almost failed most of my classes that year.

Eventually I was taken to the doctor specifically for all the problems I was having.  For a few months I was either going to the doctor or the hospital for tests every week or so and trying different medicines.  It was ridiculous.  Everything came back normal and the medications didn’t work.  (This is now the story of my life.)  The doctor gave up and said that I must simply just be going through growing pains.  -_-*

So I put up with the symptoms for a few more years since it was obviously nothing and I was just being a big baby.  In the meantime my mom had some health problems and eventually found a new family doctor that she really liked.  I ended up going to that doctor to see if she could help me since she helped my mom so much.

The doctor sent me to a rheumatologist.  I never liked the guy (he was mean and looked like Lemony Snicket), but at least he gave me a label for what was going on that made more sense.  The first visit to his was so strange.  They had me put a gown on and he lightly pressed on different points on my body.  Sounds dumb, but honestly a few times it felt like he was stabbing me with a knife.  So viola, I have Fibromyalgia and there’s nothing I can do about it!

I started on different medications.  Eventually I ended up having a pill holder, a huge one.  It looks like it’s for a month, but it’s just for a week.  I felt like the biggest weirdo ever.  My roomates at IUPUI thought I was going to die forreal.

So that’s where it began.  I’ve tried so many medications, most seeming to not be worth the side effects.  I’ve also had a ton of different health problems pop up during this time.  What kind of girl my age has had Bell’s Palsy, Oral Allergy Syndrome, Endometriosis, hypoglycemia, GI issues and migraine auras that make them go partially blind or taste and smell soap?

I know, it’s not the worst cards life could have dealt me (I mean, thank goodness my Fibro is pretty mild most of the time and it’s not like any of these things will kill me…) but it is awfully frustrating.  People think it’s fake, they think I just use it as an excuse not to do things and don’t understand why I can’t just do all the things they can do.

This is why I’m hoping that a few people come across this blog.  I want these people to understand.  I’m also hoping other people dealing with similar health problems can come here and not feel alone with what their dealing with.  We could all use some support when it comes to having a chronic illness.

Spoon Theory — for those of you who aren’t familiar.

So basically this chick with lupus was trying to explain what it was like to live with a chronic illness to her friend.  She grabs some spoons, to represent the energy or ability to do activities throughout your day.  By activities I don’t just mean the big things, this includes small things other people without a chronic illness might take for granted like getting dressed in the morning, making supper, going for a walk, etc.  These small things easily take their toll on the chronically ill.  She gives her friend a handful of spoons and tells her to go through her morning routine.  Each time her friend says an activity that takes some extra effort, she takes a spoon.  Before the girl gets to leave for work she’s already used half of her spoons.

It’s kind of genius and I think it really does give a good idea of how it “feels” to have a chronic illness.  If you want to read the actual story you can find it here…

The Spoon Theory written by Christine Miserandino