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.

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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.

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.

Crosses To Bear or How I Was Told I Had Lupus

A specialist once told me we all have crosses to bear in life. He proceeded to tell me that lupus was my cross to bear just as hair loss was his. Somehow this just didn’t seem fair back then. To be honest it still doesn’t seem fair.

I can appreciate that everyone has his/her own trials and tests in life. And no two people will experience things exactly the same way as perception is a funny thing. We are shaped by our experiences, understanding and interpretation of words, sounds and sights. So it is possible that to this doctor his hair loss was just as traumatic and terrifying to him as hearing I had lupus was to me.

There are days that lupus is a “minor annoyance” in my life. It’s there, but it doesn’t impact my daily life too much. I can manage doing what I want to do without too much concern. Those are the days I understand that my specialist’s comment best.

There are days where lupus is in full control of every outcome. Including will I be able to get out of bed, or what happens if after I’m out of bed I have no more energy? Those are the days I want to march back into the specialists office and show him that this cross is much heavier, much harder to bear than how I perceive his. Of course those are the days I haven’t the energy to actually do anything, but it’s the thought that counts right?

Some else once told me that if I had to choose between my cross to bear versus another person’s I would gladly pick my own up again. I understand part of that in being that we do tend to go back to that which we know. But I’m somewhat certain I could find a way to rock a scarf or custom wig better than how I manage to deal with the fact that some days I just can’t do things.

Does lack of hair make you feel inept? Inadequate? Worthless? I struggle with these words, words I say to myself on the days when I really should be showing the most compassion to myself. I know it’s unfair of me to have this type of self-talk going on, but I suppose I repeat what I have heard said from society in some way or another over all the time of living with lupus.

If I were in the same position as that specialist so long ago, I would hope I would respond with compassion. I hope I would be able to reach out and create an environment where the other person could feel s/he could lay down that cross, if only for a moment, or at least take a rest while we find a way to make things work better.

Granted I know that there are dangers to caring too much, to worrying too much and becoming to close to things. However, in that moment, all those years ago, what I needed to hear most was that yes lupus sucks, and yes we will find a way to work through this. Instead a felt alone, and also somehow responsible for soldiering on as best I could without giving into the exhaustion or pain. In other words, lupus was diminished and it was up to me to carry on trying to appear “normal” because after all we each must carry things that are heavy for us.

Little Things Mean So Much or IV Therapy Lupus Style For Me

the nurse who was doing my IV was one I had never seen before.  She was young and seemed a bit uncomfortable.  Not that I blame her in the least, my veins aren’t the most cooperative when it comes to needles.

My regular nurse, Kathy, calmly stepped in, handed me the bottle she always hands me to hold rather than just creating a fist and viola the needle was in.    She says the bottle is way to help keep her “ladies nails nice”.  As far as she is concerned anyone who has to put toxic medicine in their body to maintain health should be allowed to keep something nice, be it their nails or hair.

IV treatment is never really my idea of a good time, but it is needed.  To make it more enjoyable I may take a book to read, read off an ere adder or do some work.  Sometimes, if someone new is sitting near me and I tell this poor person is nervous or anxious I will talk with them to help put them at ease and make the time pass by for them.  I remember my first time ever with IV treatment and I wouldn’t want anyone to feel as alone as I did in that moment.

It wasn’t the IV that made me feel isolated, it was the reality that I was getting something that was toxic. Something like chemo.  And it made me realize that I was somehow different than I had been before I felt the medication slip into my system.  I chose to go alone, it was mine to handle on my own.  It was now something that only others who had already been down this road would understand.

That of course is a coping mechanism.  Sure none of my friends at that time had lupus or any other scary chronic illness.  But did that really make me so different from the Main? Did it mean they couldn’t understand?  Of course not.  It just took time to realize it.

I also realized that I could actually talk to the people near me during treatment if they wanted to talk.  And that sometimes talking helps ease the thoughts that run through your mind.  The monsters your mind can create that don’t really exist.

I struggle with new nurses and not just because of my horrible veins.  You see I want to put them at ease, but I’m afraid talking to them may put them off of what they are focusing on,  but once Kathy took over, I turned to the new nurse and asked her how she was doing.  After that it was smooth sailing.

To be honest I had some wonderful conversation with my seat mates and the nurses.  Time went by pleasantly and now I’m back home with a nice warm blanket and a comfortable chair to relax.

Tears and Theft

Today I was grateful that the rain came back.  Because in the rain, no one sees your tears and I had already used up all the hot water in the shower.  Besides I needed out of the house.

Aging is a hard thing, when it is coupled with dementia or Alzheimer’s it’s a much harder thing.  When you spend the bulk of your time surrounded by people your own age or younger you can forget the harshness of aging.  And then you are confronted with it, in a loved one or friend.

Aging slows us down, sometimes limits what we can participate in or how our voices are heard.  These are cruel truths for most people as they age.  Through dementia or Alzheimer’s into the mix and the isolation becomes greater.

A dear family friend, whom I haven’t seen in a while, stopped by and I was surprised at how much she had aged.  Her movements were that of an older woman, and she carried herself in a careful, guarded manner.  When she lifted her cup I noticed a tremor in her hand, and a slight palsy to her neck.  She was ever so careful with her words, apologizing  for not using the correct term or such.

She had apologized for not coming by sooner, but it was really I who should have said sorry.  But I didn’t, not st the time.  Instead I wrapped myself in the excuses of working, being busy with work, my illness and just every day life was safe reasons why I hadn’t stopped by to visit her.  The truth is, I was afraid.  Her aging made me fear what my future might be like and so I hid from her to pretend that aging doesn’t happen.

i also hid from her because her sister has dementia, slow progressing dementia and so she is aware of what she is losing.  She once said dementia is like being robbed of your memories and who you basically are.  But the truth is, dementia and Alzheimer’s both act as thieves in other ways too.

For these illnesses feed the fears of “normal” people in such a way that we stay away from those who have the diagnosis.  This means that our irrational fear rob these people of our compassion, friendship, love and human touch.  And some how most of us draw comfort in being “too busy” or “caught up” and thus pretending that this part of aging doesn’t happen.

And so, dear friends, I was grateful for the rain to hide my tears.  Tears of shame and regret, at not being there more often.  No one was asking much of me, just a few moments of my time but I was too afraid to give that.  These tears were mixed with tears of anger and fear.  Anger at myself for not being able to see and meet the need for snore human who was being cut off from visits etc.  And fear that this would one day be my future.

I was also grateful for the rain because it washed my disgust with myself away and instead watered and helped grow the idea that in order to be more human I must not hid from my fears of human fragility, certainly not under the guise of being busy.

 

Tough Lesson To Learn

They struggled to help him navigate up the curb.  One of them held his arm, the arm that didn’t hold onto a cane, the other guided him by his arm that was holding the cane.  But there was a door, a big heavy door to be opened so the lady who had been guiding him by gently holding his arm and cane let go to deal with the door. The other lady, the one who had been supporting his drooped left side shuffled to his other side.  He struggled to keep up the pace, to keep from dragging his left foot on the ground.

I watched this incredible struggle with tears filling my eyes, wishing I could do soeming. But I was stuck in my chair, tethered to an IV deep in my arm.  I could only mention what I was seeing to one of the nurses, who kindly left her post to help with the door, help in general.  The threesome ended up sitting just across from me, a lady on each side of the man. Throughout his treatment they talked to him about all sorts of things, regardless of the fact that he never responded.  Perhaps he couldn’t.

I was in awe of this man, how he seemed to take it all in stride and just keep going regardless of his challenges.  I was also in awe of the compassion I witnessed.  And I was left breathless with tears eyes as I contemplated if I would have the same grace, strength and determination if I were in his place.  I suspect I would not.  I also suspect I wouldn’t be surrounded by the kind of support that he is.  It isn’t that I’m alone in life, but I have spent so much of my life, my chronically ill life I should state, fighting to prove my abilities that most people who know me understand that helping me is no easy task.

I wonder if the bravest thing, the one thing I’ve never truly learned, to do when you struggle with a chronic illness is graciously accept the help offered by others.

Help, assistance, a means of making things easier for another.  Why on earth do I have issues around this whole thing?  It isn’t a sign of weakness, I certainly dont see it that way when I’m offer assistance to someone else.  So what really changes in the equation when someone is offer me help?  Is it my age?  Do I feel I’m not old enough?  Do I not realize what lupus costs me?  Is it vanity?

When I boil it down, when I whisper my answer to Beloved it’s only one word.  Fear.  I am afraid.  Afraid of help.  Afraid it will lead me to the bottom of the slope, the slope that says I will forever after need help.  And as he holds me close, Beloved assures me that to be human is to forever more need help.  We all need it, those of us blessed with compassion and logic graciously accept it when it is offered.  None of us, he assures me is whole and not in need of help from time to time.  And carefully, gently, he helps me to get comfortable as my stuff body makes moving on my own seem impossible.