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.


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.

Please Don’t

Some days I want a direct line to the complaints department for living with lupus. But those are the days I also want a direct line to the complaints depart for people who think they get what I’m going through, but really don’t.

For example, when I have managed to get myself out of bed, showered, hair done and dressed and suddenly find myself needing to rest before I finish my morning routine, it does not equate a healthy person’s tired from staying up too late the night before. It’s not even close. And I do not have the energy to educate these people. (Would it even be worth the expense of my energy to try and educate them given that some people do not want to learn what they don’t know.)

Another example, you insist. No problem. There are times when my joints feel like they are filled with shards of glass. Each time I move, those shards of glass slice and grind further into my body and set my joints on fire with pain. When I don’t move, I still have a slow burning pain. This does not match the pain of someone who does too much being a weekend warrior. You see as a weekend warrior your pain will go ago. Mine will just be tamed a little here and there, waiting to erupt into a full raging fire with the least provocation.

In the past I could almost make a meal out of the number of pills I was prescribed to take on a daily basis. So you will excuse me if I don’t bat an eye when you say you need to take your pill twice a day. Injections? Yep been there, done that and have the holes to prove it. (Still do it to be honest.)

Sure on the outside I may look relatively okay although you will never see me not in long sleeves and pants, I don’t care how warm it is outside. Sure you may envy that rosy glow on my cheeks, but if I were to take off the make-up that’s doing it’s best to keep it under control, you’d not want to brilliant red rash that it really is. So please don’t tell me “it’s just a little color in (my) cheeks”. It’s more than a little color and I’d rather it not be there, but it insists on coming along for the journey. Also please don’t tell me about the time you forgot to reapply your sunscreen and burnt your face. It isn’t the same, I know because I have had a horrible sunburn in the past.

I didn’t ask for lupus nor all the “fun” that comes with this disease. And I’m really not trying to have a game of one-up with you so I’d appreciate it if you didn’t feel a need to play that game with me.

Sometimes I just want you to acknowledge that when I’m tired, I’m tired. When I hurt, I hurt. I don’t need you to seek to compare it with something in your life, I’m not asking for anything other than to have the freedom to make the comment and it be taken for what it is. A comment on my life at a given moment.

Because It’s Me

One of  specialists recently asked me to create a list of things I cannot live without.  I’m pretty sure it was supposed to be a motivational exercise regarding my lupus treatments.  I somehow doubt he wanted to get this list.

Things I Absolutely Cannot Live Without

  • Coffee (neither can the people who have to work, live or be near me)  This is non-negotiable and is in fact a safety issue
  • Books (books are life, enough said)
  • Dogs (these are also life)
  • Silliness (life is not nearly as much fun when you are also so serious)
  • Did I mention coffee, books and dogs
  • My own space
  • Magnolias
  • Freesias
  • Animals
  • Good food
  • Pushing the envelope and breaking rules
  • Equality (or at least the attempt to reach it)
  • Free speech and freedom to learn

I watched his face as he read my list.  I have honestly never seen anyone’s eyebrows manage to travel that far up a forehead.  It was honestly impressive.  (And between friends I was rather pleased with his reaction. Or maybe it was my ability to create that kind of a reaction in someone who is serious and all science-based medical all the time.)  And that was just a quick think on my part.

I know, some of you will tell me that was irresponsible on my part, and true it was a bit childish, but honestly this man brings out the worst in me.  Mostly because he is so clinical that he has to check the file to find my name.  That’s right, I’m basically an interesting puzzle for him to sort out, not a human being.

This happens when you have a chronic illness.  Especially when you have a chronic illness that refuses to follow normal treatment. You become a thing of interest, something to be studied.  Somehow you cease to be a human and instead become something to examine.  And as long as I can, I will force these people to see that while my lupus case may be interesting from a medical point of view, I am a person.  My illness is basically just a side-kick of sorts.  Not necessarily a wanted side-kick either.

Once his eyebrows came back down and he managed to regain a more healthy shade of pink, I asked him what he couldn’t live without.  (Because I’m annoying that way in case you haven’t noticed.  If you have, it’s been super kind of you to not mention it!)  Clearly I threw him right off his game because for the first time he spoke to me as a person.  He actually became a person to me, or maybe it was he allowed me to see the human side of him.

Now I’m not suggesting some type of miracle has happened here and I’ve ceased being a lupus case and have moved to being a human, but hey if even just briefly I could incite a change in this rigid, bow-tie wearing man who I will take it.  And maybe some time I will finish that list, but now, well now I need some coffee and to curl up with my dog while I read a good book.

The Wolf and The Resistence

In what seems like a world from another galaxy on some far-flung planet, I was once a healthy person who didn’t cringe about things like sunlight, alfalfa and bugs from sick people. I was once, relatively carefree and full of adventure. 

But like all good stories there must be some obstacle, some challenge or struggle which the main character must work through. In my case, not that I’m saying it’s a good story, that struggle is this thing called lupus. 

You may think of lupus, in this case, as being cast into the role of the evil villain.  Some of the best stories involve animals and in this case, you may think of lupus as a wolf, after all that is what it is Latin (if my memory is still somewhat correct on high school Latin).   Lupus stalks me as I make my way through my new life on this strange planet.  When I try to achieve my carefree life with adventure on this planet, Lupus creeps in finding my vulnerabilities and exploiting them to suit his needs. 

Currently there is no happily ever-after to this story, because there is no cure for lupus.  What there is instead a tolerance, a learning of patience and understanding what it is to not have everything so easily.  In some ways, while I fear the wolf, I smile when he is at a distance for I know I’m managing this balance required in my new life and I’m stretching and growing in other ways when it is possible, such as compassion and reflecting before I act.  Those are good things, things that on my former planet I might not have learned, but if I were to be asked if I’d prefer these lessons on my carefree, adventure-filled former life I know what my answer would be in a heartbeat.  Alas it isn’t an option to go back, so instead I work to make the best of life with lupus, and as long as the wolf is only spotted off in the distance to keep me in check I can manage. And when the wolf comes right into my house, well I work on managing in other ways, grateful for the help and support of others.

So does this mean I’m part of the resistance, the resistance fighting against the incurable illness?  You bet I am.

More Lessons From The Dog

The four-footed one seems to understand self-care and being kind to herself to heart.  And it seems to come her naturally.  She makes sure she stays hydrated, and eats well.  Okay so perhaps the food part is because she can’t just run down to the local store and buy junk food.  (Not that I do this often, but there are times when I need chocolate so there is that.)  She gets adequate rest and ensures she includes play time into her daily routine.

I’m working on this hydration thing, and so far it’s going alright.  I’ve also worked on my food choices.  Rest is not going as well which is really funny because with lupus it’s always a balance between each exhaustion and rest.  You see when I’m having a good day or moment, I believe I can accomplish more than I should.  I foolishly assign myself more tasks to complete and then force myself to do them regardless of how I feel.

And this leads me to the next thing that happens with lupus and self-care, being kind to one’s self.  I know there are times its all I can manage to get up, showered and dressed.  Anyang beyond that is a bit much for me.  Still I berate myself for not doing more.  And when I am feeling better and I have that long list of things to do, I just keep pushing myself.

Today I had to remind myself that instead of focusing on what isn’t going well, I need to look at th changes I’ve already made and celebrate those small successes.  I’m not giving up on the other changes, I just need to redefine the process for making them.  After all Rome wasn’t built in one day and most certainly not by people with lupus!

Kick Off Your Shoes

At a recent doctor’s appointment, I was invited to “kick off my shoes and stay awhile”.   Now I don’t mind this doctor or his staff, however I’m not really wanting to get comfy in the doctor’s office for what should be a wee visit.  I guess that’s a bit rude of me.

I didn’t kick off my shoes, but I knew I was going to be there awhile regardless of my shoe status.  So I settled in for a long wait and a long visit.  And true to form after a lengthy wait, the doc and I had a long visit.  A long visit with lots of medical terms and numbers.  Not exactly my idea of fun, but a requirement when you have a chronic illness like lupus.

And after my long visit, I went on a longish drive to empty my head.  Because sometimes  when you have a chronic illness like lupus, you need to just empty your head and simply enjoy your surroundings.  A long visit with a four-footed friend is also ideal.

And I promise things will go back into your routine after one of those visits, because it does for me too.  Until the next time I am invited in for a long visit without my shoes.  Which is all part of chronic illness and life.