So I Was Wrong…Again

I like to think of myself as being tough and strong.  I’ve never found myself overly emotional about most things, but some yes.  And yet now and then something that doesn’t even impact my life in the same way as deaths or my illness comes along smacks me in the face.  And I am rendered anything but tough or strong.

When I read cases of people who are denied medical coverage for things simply because their genes got a little mixed up when they were knit together (completely beyond their control), I get emotional.  When I stop and consider the horrible conditions some people live with or work with, yeah that can get me caught up as well.

I won’t deny it, when I get caught up in this stuff I feel anything but strong.  But of course to not feel anything would be the sign of true weakness.  No one said life would be without pain.  No one said that when your friends have chronic illnesses you won’t find yourself ducking away for a good cry while they aren’t looking.

It’s been one of those moments dear readers.  One of those days where I have had to accept that a dear friend who is one of the strongest people I know is going through something I cannot even begin to help with let alone fix.  All I can do for this friend is be there.  And it seems like being there is absolutely useless, yet it’s what my friend needs and it’s something I can do.  And my friend needs to know it’s okay to cry, it’s okay if we both cry.


Handbooks Indeed

There is no handbook that you are given when you get a diagnosis of a chronic illness. None. You might wish there was, but I promise you a doctor doesn’t have one to give you. Sure, a doctor may hand you pamphlets and such, but it isn’t a handbook.

There is no Welcome to…. or Living With…. I mean those titles might exist, but they aren’t handbooks offered by medical practitioners. And maybe, just maybe that’s a good thing. Not because lack of knowledge is a good thing, but because for some people that first diagnosis can be overwhelming. And for some of us, when we are overwhelmed we can barely remember our names, let alone remember to grab everything with us etc.

When it comes to an illness like lupus, the reality is that there is no set formula or path that the illness takes. How it affects one person is not how it will affect another. And if I were given a book that basically spelled out how the illness should behave and then it doesn’t behave that way, I’d probably be mad. And I’d wonder if I really had lupus or if it was something else that had been misdiagnosed.

Or what if your illness starts doing things that aren’t in your hand book? Then what happens? So no my dear friends, there aren’t handbooks for this, but there are books in general about the illness. And wonderful support groups.

Have You Tried…

It’s been a rough few days, heck a rough few weeks if I’m honest about it.  It isn’t all lupus though, despite what you may think.  Although I’m not going to downplay the role lupus has played in making things more rough than they should be.  But I haven’t been much of a help to myself either because I bit off a bit more than I could possibly chew and instead of just spitting it out and breaking into smaller pieces, I opted to continue to try to chew.  Not smart.

So when I phoned my specialist and got his assistant on the line I was in a pretty bad place pain wise and ability wise.  Now I should say this up front, I love this assistant.  She is a no-nonsense, straight talking, tell it like it is kind of woman, with just the right dash of empathy.   Normally when I phone and I’m as far down the path of pain and mobility issues that I was she offers up suggestions such as ice packs or heating pads; oatmeal baths or episome salt baths to try and get things down to a more manageable level.  But not this time.

This time she got on the phone and said “have you tried shutting down, unplugging everything, plugging it back in and starting it up again?  You should do that five times at least!” and then she laughed.  She said she always wanted to say that to someone and never had the chance.  And honestly with lupus, I wish it were as easy and shutting my body down, unplugging and then re-plugging stuff back in so that when I start back up it’s all good.  But lupus isn’t that simple.  I told her if I could do that or jiggle the handle it would be ideal.  But it wasn’t, so could I please get in to see the doctor.   After a bit more of a laugh she made my appointment and told me she’d jiggle my hand when I came in for the appointment so that the blood would be easier to draw.  True to her word, she did jiggle my hand a bit; it didn’t affect the speed at which my blood flowed though.

When The Process To Get Help Hurts

I’m not the kind of  person to find joy in filling out forms and yet having a chronic illness like lupus sometimes results in the need to fill out forms.  Forms for exemptions from things.  Or forms for accommodations for things.  Sometimes the filling out of the forms for an accommodation due to health hardship is ironically enough a hardship in and of itself.

Not only is the filling out of the forms to be a challenge when your hands hurt and your head can’t seem to make the thoughts connect, but sometimes the questions themselves hurt.  Questions like “how different is your life now versus before” or my all time favorite one “how has your disability impacted your life/quality of life”.

I understand that these questions are important, but when they are asked, it’s as if you are confronted again with all you have lost or had to adjust to as a new normal.  Sure on a day-to-day basis I am still dealing with these changes, but I’m busy trying to get through as best I can so I don’t take a close look at the loss in my life.

Being asked these questions is the same as shining a spotlight on what feels like my failings.  I did not ask to have days where pouring a cup of coffee seems to be the same type of challenge as climbing Mount Everest.  I do not enjoy realizing that the long hikes I used to take are just that, things I used to do.  I am no longer able to do that.  And I certainly hate to remind myself that in my life, daily pain and medications are the norm now.  I hate being reminded that I carry out a ritual every week, one that is necessary to save my organs, but also means putting toxic substances into my body that most people will never take for the rest of their life if ever.

And that’s the rub with lupus and other chronic illnesses, you are in a state of struggling with your new normal which can change on a regular basis so you never fully mourn your losses. Instead you are harshly confronted with your losses now and then after you think you’ve done a decent job of filling in some of the void made by the changes.

Thankfully the form I had to fill out today, the one asking me what my life was like before my condition changed and how have those changes impacted my emotional, physical and spiritual health was one on the computer.  Otherwise it may have been sent in with a few watermarks of my own…tears that is.

And Then

When I was young, I would run through gardens and fields, never worrying if they were wet or muddy.  When I was young, I’d find a swing to play on or a tree to climb or a hill to fall back on and watch the clouds waltz their way across the sky.

When I got older I stopped running through gardens and fields.  One’s heels tend to get stuck in soft earth after all.  And mud splatter isn’t the most ideal thing to have on your cloths. When I got older I’d never find time to hop on a swing or climb a tree and watching those clouds make their way across the sky was another indication of how much time had already slipped away from me with, so many things left to accomplish in the day.

And then I got sick.  And in getting sick time stood still and rushed away all at the same time.  I wondered if I’d ever have the energy to make it down a hallway, never mind walk through a field or climb a hill.  And instead of having someone push my swing, would someone be pushing my wheelchair?  The movement of the sun, moon and stars marked time in some surreal way.  Each day and night blending into the one before it as if it didn’t matter so much anymore.

And suddenly I was better-ish.  I was out and about.  I was running, sort of, cringing at the pain I knew was coming my way.  But still I’d do it just to enjoy the perfumes rising from gardens, tangled and unkept as well as though so immaculate you thought even the insects were placed just so.  And in doing so, I set aside a timetable to get things accomplished.  Things would get done as they would, based on what I had time for.

I left my heels long in some forgotten box, enjoyed the rain and the mud.  Forced Beloved to tell me what he saw as he too gazed up into the sky and wouldn’t settle for answers such as “rain clouds” or “coming storms”.  Maybe, just maybe, by being sick I found a bit of a rabbit hole to go down.  No I didn’t see Alice or the Mad Hatter, but I did find a way to grasp back the simple pleasures that I had enjoyed as  a child.

Goodness Me

His voice drifted lightly to where I was sitting. Melodic poetry swirled around me from the kitchen, where he was singing as he cooked.  Van Morrison, I suspected.  It was, after all, one of those days.  A day full of cooking and music while I sat uselessly in a chair trying to forget about harsh and ugly words.  Those which had flown so easily from my lips to lash at him.

And now he was in the kitchen, singing what I was certain was Van Morrison’s songs while he prepared what sounded like enough food to last at least a month.  Van, after all, was skilled at putting poetry to music and Beloved was nothing if not a lover of poetry and music. He also happens to not be a bad signer, having spent time with choirs in a previous life.  Me, I can’t carry a tune in a bucket and I have been offered money to not sing.

The four-footed one happens to be a lover of music, well at least fond of music.  She is a lover of food and will endure even my version of singing if it means a scrap of food might come her way.  She is also no fool, she could sense this mood that had drifted down upon me sometime while I slept and thus had given me a wide berth all day long.  She and Beloved are no fools, opting to provide me with my own space and ignoring my mood.

It is hard, these times, when I realize just how little I energy or strength to do anything.  It is hard to allow that lupus has found an upper hand again and now I must sit and rest, waiting until I had found the way through this latest downturn.  While Beloved had to manage the house, the dog, his needs and mine all on his own.  Not that he complains, not ever, which makes it even worse somehow. As though he is above this, saintly next to my dark sinned filled wretched soul.

The harsh, ugly words had been hurled his way after he told me to get some rest when he brought me a book to read, a knowing smile just about there on his lips. I had wanted to throw that book at him.  Truthfully I wanted him to have to sit in the chair, rest while the world went on all around him.  I’d not ask him to sit like that for long, just enough for him to see what it was like for me as fun went on where he was not.  (Not that my singing would entice even the most deaf of demons to come into where I was, but it  you get the idea.)

I knew, as the last lines of a song hung gently in the air, that soon he’d come to see if I wanted help heading up to bed. As if I were a small child who needed to be told to go to bed, or worse needed to be carried to bed .   Oh yes, this then is lupus at its worst. While not the disease, no the disease can be so much worse. Rather this is me at my worst, Beloved and the four-footed one being targets of my rage since I cannot throw a book or toss harsh words at lupus in any way that causes any damage.



Lessons, Never Ending Learning

Education, they said, was the key. Always take advantage of every educational opportunity that comes your way I was told. And so I did. To that I end every opportunity to go back to school, to attend seminars and lectures was seized with both hands. Informal opportunities were consumed with glut and greed.

And then, well then there was a slowdown thanks to lupus. A forced slowdown mind you. I tried to push through it, my normally good grades paid a price and so did my body. I tried to ignore it, I tried to pretend. But lupus persisted.

But lupus decided to provide me with a different opportunity. Still a chance to learn something, only now a chance to apply more biology and medical terminology in the most personal way. There was no escaping this learning, try as I might. I was a captive student and I would get the same lesson over and over again until I learnt it. (There are some I still haven’t been able to fully learn, such as resting when I feel the disease becoming more active.)

I’m pretty sure I have a medical degree’s worth of education from lupus, if I were to want a specialty in the illness, but medicine never appealed to me. Instead I chased more ethereal things and dabbled happily in the world of theoretical beliefs, ideas and constructs. But lupus persisted to educate me.

When I proclaimed loudly that I did not need math, lupus showed me how much I needed math to manage my medications and such. When I protested at the tedious need for detailed and accurate recordings, lupus smiled and forced me to keep even the smallest of details recorded.

And I guess in a way they were right, education is the key. You need to have knowledge in order to make informed decisions, even if we are talking about lupus