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.


Attitude, Belief, Lupus and Me

Over the course of my life I have heard that my attitude makes all the difference.  When I used to hear this kind of stuff I’d chalk it up to my parents or some other authority figure trying to control me in a way I didn’t want to be controlled.

When I got a little older I took some courses in psychology where I was taught that you can trick yourself into believing things that aren’t actual facts yet, at least when it comes to yourself.  For example if you dont feel confident but you keep telling yourself you are a confident person and pointing out the things you did accomplish with confidence, well you’d wind up believing in yourself when it comes to confidence.

So I would try these little tricks of the kind when I was feeling the effects of a flare.  I’d tell myself I did have the energy for a shower and getting dressed and my follow thigh would happen even if it was a huge struggle.  And I’d basically carry on with whole day by breaking it up into little bits.  Sure there were some things that became too much to do, but I would wind up the day by feeling really pleased with myself and all I had accomplished.  I’d even feel proud when other people marvelled at how I pushed myself on despite being in a flare because I was in charge not my illness.

Here’s the rub though, I never enjoyed any of the time I spent pushing myself so hard.  In fact I barely remember most of what I  did and why I had to do it at that time.  I just remember it felt like I was pulling myself through thick mud and there wasn’t a helping hand in sight.  The reality is there were tons of helping hands, most of them trying to pull me out of the mud to rest when I had expected them to get into the mud and push me through.  Truth be told, there was no real need to push myself so hard because the only person I had to prove anything to was myself.  What I should have been doing was being more compassionate towards myself, caring a bit more about my health and less about how I could push through and beyond what some of my health coworker’s were doing.

As a result, my disease would flare horribly out of control and end up doing permanent harm to myself.  Which I would then shrug off as I pushed through something else.  It was a pretty regular routine in my part, until recently.  You see I acquired a new member of my medical team and he put it to me like this:  “why should I bother to put in time and effort to keep you alive and healthy if you won’t put in the same for yourself ?”  He also told me that all my accomplishments in my personal life and my work life wouldn’t mean much if I ended up stuck in a hospital.

What I had realized was this man had listened to me talk with other lupus patients about the importance of rest and self-care while I refused to do the same for me.  He wondered why I disliked myself so much that I saw no value in me as a person.  And he voiced all of this and much more during one of my appointments.  It’s not that I dislike myself or devalue myself (although I am my own worst critic), it’s that I felt that if I could push back at lupus id win the battle. I have since tried to shoe myself the same compassion and understanding I share with others who have a chronic illness and I must say it is a huge relief to not have to do more than I feel I can do.  It’s nice to accept that some days having a shower and getting dressed is a huge accomplishment and that is perfectly fine.  The only thing that has changed, and it’s such a small change with such a huge impact is that I’m allowing myself to be a woman who sometimes must stay within certain limitations, but those limitations do not reflect on my impact.

The Strength And The Fragility Of The Human Condition

While out and about today, I stopped off for some nourishment in a small, local café. The time and the location meant that the café wasn’t crazy busy or so full that there were no tables available. But it was busy enough that you could tell it wouldn’t be a risk to stop and eat there. Maybe that’s just me, but when I’m the only person eating in a place and it’s not a super odd hour to be eating I always worry if everyone else knows something I don’t know about the food or the reputation of the place!

I was directed to a nice table near the corner of the café with only the table directly in front of me also being occupied. Once I placed my order I decided to have a quick look around before pulling out my typical reading material. (Yes I am that much of a book-worm that I will read any chance I get. And yes my mother was not a fan of reading at the table, but she also was a fan of reading so at times she would permit the odd book or two.) Just before I pulled out my book I noticed that the orders for the three people seated in front of me had arrived. The food looked delicious and smelled wonderful and to confess I was a feeling more heartened by this.

But I went to pick up the book I was going to read, I was reminded of just how frail we all really are. I was also reminded of how far compassion, care and empathy can go in making a person’s day so much better. You see one of the elderly companions at the table in front of me was unable to use her hands. They had curled up and she could not hold cutlery or the glass with her drink in it. Her two other companions took turns helping her to eat and drink with effortless grace while affording her dignity. Clearly despite this small setback they were having a good time laughing and enjoying each other’s company.

I got to wondering if in our fast paced lives, so focused on devices, electronics and everything instantaneous we haven’t misplaced something more important. Something that will come back to us when we are older or in need of help and if this something won’t just be lost as we drift further away from human relationships. I know I’ve been guilty and still am guilty of putting things before people in my life at times. I know I’ve decided that I prefer solitude most often, and I wonder if as I get older or my struggles become greater, if I won’t be missing out not just on human companionship, but the dignity and grace that comes with friendship and love.

A Lupie Letter

Dear Lupus

No doubt you have probably received numerous letters from people like me, you know the ones who didn’t ask you to become involved in our lives, but you did anyway? I wonder if you read those letters and get it. I wonder if you realize that while none of us invited you into our lives, each and every one of us will prevent you from fully taking over our lives.

I feel for you though Lupus.  I really do. I am sure you are the target of some harsh thoughts; hate has been sent your way and no doubt hurtful things said about you. I cannot imagine what it must feel like to know that there are so many people wanting to be cured, wanting you basically to be killed. And to know there are people working on the strategy to be your demise, well that cannot be comfortable at all can it?

I’m not sure why you were chosen to be the one to inflict the autoimmune responses the way you do. Did you draw a straw and get the superpower that lets you turn my immune system into overdrive? Do you win extra points or status the more damage you do to my body?

Are you must misunderstood and looking for attention? Did something happen in your past? Or is this just your nature? Not that any of it matter, because no matter how you answer those questions know this, you may make my life challenging and cause complications that I really don’t need or want, but at the end of the day I will still be what I want to be and who I want to be, even if it means a more round about journey must be taken to get there. And I will not let you carry out your work unchallenged. Because despite the fact that I did not invite you, you have come into my life so you have to deal with my terms as best I can put them into play.

I wish you no ill will (pun intended) at the end of the day; I just wish you could find your own body and stop using mine to test out your strength and powers. Until you do you and I shall dance. Sometimes you will lead and I will fight you as I follow and other times I shall lead and change things up. I guess you should know I’m not really good about waiting my turn either so anticipate on doing a lot more following because I have issues following rules and calling the shots.

Me and my painful, tired, still fighting body

Getting On With Lupus or Luxuries I No Longer Have

A friend of mine phoned to see how I was doing today.  Really she phoned to talk about herself and her problems.  You see she recently broke her wrist and felt that she was unable to do anything now.

I tried to remember what it was like, when a broke wrist or ankle meant the end of all good things for a number of weeks.  I tried to empathize with her, but I probably failed.  You see when you have a chronic illness such as lupus, at some point you just have to get on with the getting on.  To be able to list all your woes and things you have lost is simply a luxury you no longer have.

Anything that takes away precious energy becomes a luxury that you simply cannot afford any longer.  Because energy is slow to come back.  And getting on with the whole business of living and trying to do normal things, basically just function takes up most if not all of your energy.

To be honest, I can barely remember what it was like when a broken wrist meant that I couldn’t do anything for six weeks.  She will, of course, muddle through life and get help while she is down to one wrist.  And then there will come a day when her wrist will fu cation again.  When she will be out of a cumbersome cast and be able to do the things she used to do.

And she will remember what it was lie to struggle a little. But she will be back to herself, more or less.  And I will be envious of her having only six weeks or so of inconvenience for a few moments before I get back to getting on with things.  Because being envious is a luxury I cannot afford because I just don’t have the energy  to spare for it.

So she may tell people I haven’t been as compassionate or understanding as she expected me to be when she phoned.  And I may not have been able to share her misery the way she wanted to.  And it isn’t because I wasn’t to be a dreadful person.  I just have to keep getting on with getting on because that’s life with a chronic illness such as lupus.