Monday, June 25, 2018

A Different Kind Of Fear

    I have been chronically ill for over twenty years.  I have had time to get used to the idea that my illness has times where it is very expressive, called flare ups, and times when it is basically asleep, called remission.  For many years, I worked while I was ill. I raised a family. I ushered for my local theater and enjoyed being able to watch the broadway shows that came to town. But as my illness is progressive, that all gradually ended.  My kids are grown, I had to stop working, and the amount of walking and standing required to usher became too much.
    As far as chronic illnesses go, this is all to be expected.  I did my research. I knew what my disease could do. I applied for disability and eventually got it.  All I needed to do was refigure my life now as someone who was much more home based.
    At first, it was easy.  Obviously, I write, and as someone with two kids and a job, I had not made time for this pursuit earlier in my life.  (I actually am trained in creative writing, so allowing myself time to do it now is amazingly rewarding!) I also started doing our family tree.  Imagine my surprise finding out I am related to the woman credited with the invention of the striptease! As a way to get out of the house and give of my time, I became a kitten cuddler for a local rescue group.  (Yes, it is exactly as it sounds, I keep kittens calm during adoption events because they get scared.) Someone’s gotta do it!
    But even with all this preparation, there was something I didn’t realize.  Being home based is incredibly isolating. On the surface, that seems like a no brainer.  You are home. Not at work with co-workers and associates anymore, but home. And yes, there is the internet where facebook and instagram can keep you in touch and informed, but you are still alone.  And that is something I didn’t realize would end up causing me fear.
    You see, we usually consider fear as being about the unknown.  Pretty much every horror movie gets reactions from the notion of something unknown coming after us.  Maybe something is making noises down in the basement and we have no clue what it is. And because we are sick, it scares us because we think we are too weak to take care of it.  OK, this would have scared me before I was sick! But this is not the fear I just experienced. I experienced the fear of being alone. Literally.
    You see, although I do not live alone, during the day, I am alone.  My husband works and the one son who still lives at home also works.  And we only own two cars. So I do not have access to a vehicle in an emergency.  That’s not necessarily an issue in and of itself. If I was in a real emergency, I probably shouldn’t be driving, right?  But today, I also did not have access to my phone. The battery has finally decided to go completely and not hold any charge.  I have no way of communicating with anyone. And that scares me.
    The thought of being alone and in need of help due to my disease flaring up, or a fall, or another back fracture scares me more than anything else I can think of.  And this is something I never considered in all the time I have been home based. Truthfully, this should be one of the first things I thought of. Especially with no car available.  But it wasn’t.
    It will be now.  I will be getting a new phone, I am due for an upgrade, but I will also be asking about batteries.  I want to know how long an extra battery will last if I keep it in a drawer. I do not want to be in this situation again.  I want to be able to replace the dead battery with one that will at least get me through for awhile. You see, I also woke up with a migraine today.  Or a neuralgic headache. And I may have needed treatment. Without my phone, I could not get it. And that is the reason for my intense fear today.
    So from now on, disease management will include lots of stuff I hadn’t previously thought of.  I consider myself well prepared usually. After all, I do have 23 years under my belt with this illness.  But I guess everyone has a time when their disease is going smack them in the head and say I’m still smarter than you are.  And this is why I write. Maybe my experience will help someone from being stuck when they really need it.
    For now, I will just keep on learning.  And writing!

Friday, June 15, 2018

When Your Invisible Illness Becomes Invisible To You

    I recently had a trip to the emergency room.  One of many, I’ll admit. But this one was different as it could have been avoided had I known what was happening.  The problem is, I didn’t see it coming, nor did I actually have the tools to. You see, my illness, which is primarily invisible on the outside, had managed to hide the extent of its recent progression from me by making itself invisible on the inside. So I misread my abilities and ended up in the emergency room.

    I wish I could say that this is an uncommon issue with chronic illness. But I don’t think it is.  We go through periods of intense flare ups, when we experience the full measure of our symptoms from extreme pain to mind numbing fatigue to the loss of physical abilities such as walking.  But we also go through periods of remission, when our symptoms seem to disappear. Although we understand that they are only in hiding during these times, the fact that we feel normal gives us hope.  And many times, a false sense of ability.

    It is during these times that the idea of an invisible illness becomes two fold.  Just like the world cannot see our illnesses from the outside, when an illness it is in remission, we cannot feel it on the inside either. It becomes esentially invisible to us as well.  And given the fact that we are chronically ill, when we don’t feel physical symptoms, we are very likely to give in to the idea that we are more physically able than we actually are. Why wouldn’t we want to believe we are better when feeling crappy is the norm, even if its only for a few days.

    The problem is that we aren’t truly better.  We are still as sick as always, maybe worse. We just don’t feel it.  We have no pain and more energy than we know what to do with. And our instinct is to get stuff done.  It’s hard to sit still and rest when your body feels good and strong. Especially if it hasn’t felt strong in months.  And even though the most logical thing on earth is to let your body use this extra energy to heal more, most of us use it to do all the stuff we cannot do when we are symptomatic.

    In other words, we act like our illness is gone because it has become invisible to us.  Case in point: for many summers, I have been able to help out somewhatwith yardwork by sitting on my butt and using a sharp saw to cut off the suckers that grow off the base of our trees.  Yesterday, I set out to do that again. I was in remission and feeling strong. I stayed in the shade and it was breezy so I didn’t notice the heat. I also didn’t notice how much my recent health issues had actually deteriorated my abilities.  So while I completed what in my mind was reasonable based on years past and the fact that I was asymptomatic, after finnishing I became symptomatic quite quickly in the form of heat sickness, dehydration, and a major migraine event that landed me in the hospital.

    By all measures of my past, I did everything right.  But my illness was underground and not giving me the signals I needed to tell me I was overdoing it.  It was invisible to me. Just as anyone walking by would have seen nothing out of the ordinary to cause them to say maybe I should stop.  My illness is invisible to them too.

    I do understand that this view leaves personal responsibility on the side.  But if you think about it, our diseases change day to day, and sometimes all we have to go on is the signals we get from our bodies.  Understandably we all should know our limits and do our best not to use them, but we are also taught to continue to stay as physical as possible so we don’t lose our abilities.  It’s a constant catch-22.

    So while we need to be aware of our limits and how far we push ourselves, others need to understand what it's like for us when we are suddenly faced with no pain and a normal body for awhile.  It's what we dream about. All the time. Of course we’re going to take advantage of it. And just like others cannot see the pain we are in most of the time, we cannot see when or how bad the return of our illness may be.

    So bear with us.  We are trying our best to navigate a constant roller coaster of symptoms that come and go, get better and worse, and do all of this with no rhyme or reason at all.  If it really were as easy as exertion caused pain and rest avoided it, our lives and treatments would be so much easier!

Tuesday, June 12, 2018

Social Security Hits Again

Well, it finally came. Paperwork from the Social Security Administration. ( Basically, it is my verification packet. My chance to prove to them that i am still disabled and thus am still entitled to my benefits.

It's hardly even a packet. One sheet, front and back, of questions and ten sheets of instructions in every language you can think of. Governmental waste at its finest. But necessary. So i lay out the rules and begin to write out the last 24 months of my life on the neatly spaced but too few lines provided.

Questions like are you working or have you been self employed are easy. No and no. Though i write my little blog and help edit others’ writings online, i have yet to find a way to earn from my writings. So in that respect, i still need my benefits.

It gets complicated when they start asking about the medical stuff. They get right to the point too: is your health better, worse, or about the same as June 2016. (My DOD) That one question threw me. Of course it should be easy ti answer, but its not. Because there are so many factors to consider and too much riding on a ‘fill in the blank’ answer.

You see, my benefits kicked in due to a fractured back 2 years ago. Since then, my lucky self has endured 3 mire fractures in what now seems to be a new reality for me. My back is toast and i have the disease and required medications to thank. So, i can honestly answer that my health is worse. And i did.

But the finality of placing that particular ‘x’ in the box brought up so many emotions that they need to be addressed, and validated.

I did not spend my time since being approved for disability sitting on my butt watching LMN all day. I have sought treatment, i have exercised, i have changed my diet, and i have lost weight.
Medications have been discontinued due to my vigilance and efforts to keep fighting and keep trying to get better. Physical therapy is a way of life. I walk. And i feel healthier!

But AM i better? Picking an answer to this question is like missing a mackerel being thrown to you and getting pounded in the face by several pounds of fish slime. You are forced to admit you stink. After all the pumping up i've done, i still smell like the bucket of bait waiting to be fed to the beast. I am still disabled.

And i can measure my disability in feet and inches. You see, losing weight and feeling better are one thing… but getting better in a real physical way is another. And that's not happening. I can now barely walk around the block. A goal since my first compression fracture in 2015, and one thats not getting closer. I pull myself up stairs. I would have thought my legs would be stronger with the PT. But the disease keeps on as well, and i'm not sure i'm staying even.

There have been other issues as well, such as a routine appendectomy that required 4 separate hospital stays to recover from. ‘Routine’. As in for me, nothing will ever be routine again. My body cannot fight the way others’ can. Or even the way i used too…

ExplaIning these things on a yes/no form with 2 lines for comments is just impossible. Like ‘my migraines are now controllable with diet except my gastroparesis is worse and im only eating mush.’ Well awesome! I have so fewer migraines i'm off topamax! But i'm surviving on cream of wheat! Woo Hoo!

This government update form is for informational purposes only. Its meant to allow them to gain a snapshot of how you compare to yourself from the issuance of benefits.

But it becomes so much more to us, the disabled, the dependent, the ones living day to day in a cloud of getting by. A cloud that allows us the luxury of seeing improvements that don't exist in the long hall. I turn a page when reading without my finger shaking now. But both hands now tremor while doing bigger things than reading.

I was allowing myself to live in the clouds and feed my delusions of getting better until this form came. And the necessity of being real was forced onto my psyche. Because in the long run, it doesn't matter that i can walk around the block. It matters that i break by bending over. It matters that i break lifting a load of wash. It matters that i break putting dishes away.

In fact, I break everytime i feel well enough to participate in life. And that's what matters in deciding if i am better or worse. Because no matter how much walking i do, PT i complete or dietary changes i make, i will still break. Feeling stronger just makes it more likely i'll try moving an antique Queen Anne's chair across the room. Alone. (Ending me up on the couch for 3 days.)

So i am not better, and i am not the same as, but rather i am worse than i was. And how sad is that after the time spent fighting the disease, recovering from fractures and surgeries, winning over migraines, and forcing my depressed, sad ass out into the world to see stuff and do stuff that makes me happy.

How sad is it to have to face the disease head in and admit it is winning.

But that's what the paper calls for. A true accounting. So i gave it one. And my doctors did too, because it asks if you've discussed returning to work with your doc. So i did, and i can't. And really, who would hire me with my odds of fracturing during normal routine activities?

I finished up the form with a listing of medications, appointments, treatments, hospitalizations, and surgeries I've had. (I needed more room.)

And that was it. Found a stamp, sent it in, and wait to see if they believe me or if they decide they need to see the back breaking freak in person. My luck-they will!

Six questions to review and update their records. Six questions that took me from thinking I'm on the way up to landing my butt squarely on the hard ground heading downward.
Maybe it needed to be done. A good reality check is always helpful lest you become so distanced that you forget about your needs in the first place.

I'll say this… having to face how much worse i've gotten in 2 years was eye opening. And cruel. But it allowed me to see the progress as well. The fact that i do still walk after 4 fractures or the fact that i can sit long enough to enjoy my boys showing me something cool. I can be still enough to take photographs and tolerant enough to travel great distances for family.

I'm worse at everything, but can still do everything. And continuing to ‘do’ is my whole goal.

Let the government have the big picture. Keep the little day to day accomplishments to yourself. That's where your healing moments are. It's what gives us our hope and happiness. Its how i measure my progress, even if the hand i’m measuring with hurts like hell!