One Of Those Some Days

It’s been one of those days.  It started off okay, but quickly became one that was full of too much.  Or maybe it isn’t so much that it was too much as it was a case of me not having enough energy for everything.  Not that it really matters in the end because the results are the same.

The results  can be explained as follows:  pain, frustration, exhaustion and a degree of anger.  And that’s just within myself.  If anyone has to deal with me during one of these days, well I pretty sure their list has my results plus others!

So how does a person with lupus end up with one of these days?  Sometimes this person may overestimate what s/he is capable of doing for that period of time.  Sometimes what s/he thought would go a certain way ends up going a different way.  And sometimes, well sometimes lupus just steps in and has a say in things.

So the person, this person, cannot always change that.  But this person can try and make the best of things where possible. One these days, this person tends to retreat to be on her own and uses the time to read and rest.  Or at least not have to infect other people with the miserable mood that settles upon her.

And some days, sometimes, despite it all, this person ends up with tears down her cheeks.  But tears can be an emotional release which helps too.


Tired, Really Tired

I’m so tired, so very, very tired.  Actually I’m exhausted, extremely exhausted and no amount of rest seems to help erase any of this tiredness.  I could rest for a year and I fear I would still be tired.

This is part of my life with lupus, I know this.  Just as I know resting is exceedingly important with lupus.  The thing is, time is limited, there are only 24 hours in a day and what feels like a million things to do.  Now I know, logically, not everything needs to get done, but emotionally I feel guilty if I don’t get everything done.  I feel as if I am not pulling my own weight and leaving too much for others to do.

So I compensate, by cutting back on my resting until I can simply no longer ignore the need to rest.  And the problem with this that I end up resting an entire weekend away just to be able to drag myself through my week-day obligations.  You know what my weekends should consist of?  Time with friends and family, not my pillow and sheets.

None of this is obviously new to me, and I’ve written about it before.  But having just woken up from a nap (not something I normally do) I am reminded again that lupus, like many chronic illnesses has exhaustion as part of the issue in addition to being exhausted just dealing with the chronic illness.  Please excuse me, but I’m so very tired and am going to settle down with a book and the four-footed one!

It Can Be Hard

I like to think I can do everything for myself and that I don’t need anyone to do anything for me.  Of course none of us really can do everything in life alone.  We come into this world absolutely helpless and must acquire skills and lessons to do things for ourselves.

When I was younger I fought to do things for myself, and my parents used to tell me that the only words they heard me say frequently were:  “let me do it”, “I wanna do it” and “let me try”.   And thus I headed out into a larger world that didn’t always let me try.  Soemtimes this wasn’t a bad thing although I may not have agreed with that statement at the time.

I suspect this mildly stubborn streak deep within me is why I sometimes fail to stop and rest when I should.  I also suspect it is why I’ve managed to accomplish what I have while being chronically ill.  The need to prove my ability and such has come at the price of my health at times.

My medical team doesn’t agree with this lifestyle choice and have lectured, explained and demanded that I change this in myself.  I have tried, but years of lying about my health and how I am is hard to change.  Years of ignoring all the warning signs and pushing hard to accomplish things even if it results in a need to go to the hospital  afterwards becomes second nature and therefore challenging to not do any more.

But I must make these changes before lupus decides to make more hard and permanent changes to how my body works and functions.

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 Buts

Sometimes it is the very last thing you want to do that is the very thing you need to do. And somehow you manage to get yourself to the point of doing that thing that you really did not want to do and then realize it wasn’t so bad and in fact helped you in some way.

Today for me that one thing that I really did not want to do was get out into the world. I wanted to let my hurting, exhausted body stay home. I wanted to be able to just give in to feeling sick for a day or so. I reasoned that I would then be able to get some more rest and hopefully be even better in a shorter period of time.

My heavy limbs liked the idea of just staying there, on the bed and not moving. But there is always a but in these things. At least in my experience there is. But there is the four-footed one who needs to be fed and walked. But there are papers to return and lectures to cover with such limited time left. There are people who have paid money, a large sum of money, to be able to attend the class and me not showing up wastes their money. And on and on the list goes. I can get exhausted just trying to chase down all those buts.

So I got out of bed, because someone needed to be fed and walked. A shower did not make that much of a difference and I struggled to make myself look somewhat human for class. I managed to get myself to class where it’s impossible to not get some of the positivity from the students, the same with their impatient energy. With these items, plus some coffee and snacks, I managed to finish of the day feeling a little better than when I first woke up.

Don’t misunderstand if lupus was really bad, I mean the flare of all times, there is no way I could drag myself anywhere. But it wasn’t the flare of all times. It was just lupus, again. And if I give into lupus again when it’s not being way out of control then what can I expect when it does get bad? Some of my specialists would say that this is actually a sign that I do need to slow down a bit, that if my body is telling me bed is where it should be then maybe I should listen to it. It might not hurt, except all those buts I found earlier. And because I do not know how else to fight it, I do not know how to take back myself from lupus other than not letting it define who I am and what I do.

Sure I’m even more tired and sore now. But I also got to hear some great ideas, interact with some interesting people and once again be a part of something so much bigger.


Sometimes you just have to stop and smell the flowers. Sometimes you just have to stop and watch the clouds move across a blue sky. Sometimes you just have to stop and take a moment for yourself.

Why do you have to stop and do these things? To recharge, reconnect and at the same time disconnect and slow down. If you look to nature you realize that life isn’t meant to be living the fast paced, high pressure style all the time. Nature doesn’t go around at a high pace all the time. Things aren’t always done in a state of high pressure. And yet we, who are ultimately a part of the nature of the world, seem to think that our lives should be lived fast and under pressure at all times.

It’s the only way to get ahead you say. It’s what is expected of me at work. It’s what I have to do to maintain my lifestyle or make a better life, you cry. But is it? Stay ahead of what or whom? Expected at work because why? Who set those expectations? Are you fully satisfied with your lifestyle now? What makes for a better life?

We all can fall into these traps and ways of thinking, especially considering that the rest of our communities tend to be living the same stories in some fashion or another. And yet. And yet there are people who are stopping, who have stopped or make time now and then for the stop. There are people pushing back against the crazy pace and unrealistic pressures and saying no. Not for me. Not what I want.

If you thrive by the fast pace and can’t imagine life any other way then I suspect you already have a means to make “stop”, but it’s a bit different. Perhaps your stop is a bit like a humming bird hoover over a flower. Perhaps your stop is a quick glance and a deep breath before you dive back in.

Maybe you like pressure, but you’ve found a way to ensure it’s never too much. Maybe you take a walk, or talk with friends as means of making a bit of space for yourself. If it works for you and there are no adverse effects happening then who is anyone else to say if it’s good or bad?

But maybe, just maybe, you are like most people and haven’t found the way off the merry-go-round of daily life. So you struggle, you struggle with trying to be everything to everyone all the time. Technology has certainly provided a means to say that personal time, moments for self-thought and care really aren’t necessary. But we are human, we need to find a means to rest and stop now and then.

I was listening to a lady explain what her day was like. She was the first person up in her household each day, ensuring there was breakfast for her kids before she went to put on what she called her superwoman costume. Now understand her costume isn’t really one with a cape, it’s what she wears to work – her armor complete with the war mask or makeup. It’s the perfect hair and nails and the right shoes. Once she had her costume on she has to make sure her kids are out the door and off to school, she has a “quick debrief” with her husband (those are her words not mine) about the day before they both head off to work.

At work she is expected to do the her job plus parts from two other positions that have recently been eliminated. She isn’t paid any more for the additional work, nor is she given more time. As a matter of fact where she works believes that productivity should never be negatively impacted by personal life or staffing changes. In other words she is a cog in a machine, an efficient machine that doesn’t care about human things.

She doesn’t remember lunch breaks any more, she works through them so she doesn’t’ have to stay too late because she can’t afford to miss picking her kids up from after school care. You see after school care people want to be done work at a decent hour as well, so they charge a huge fee for each minute she is late beyond a set time. Her company doesn’t care about this little issue, as long as productivity numbers remain high it’s fine otherwise too bad about late fees.

When she gets home there is homework to help with and a meal to prepare. There are conversations to be had, stories to be told and so on. She said she just wants to get off this wheel and have a life that’s a little less hectic. Her husband suggested she scale back her work hours, but that means sacrifices to budgets and such. It isn’t something that realistically they can make work without her husband picking up more hours.

I told her I didn’t have any of the answers. I only know that my life got a little better when I watched the clouds move across the sky and got lost in the lazy pace for a little bit of time. I told her one day while passing someone’s garden, I found myself stopping to smell their flowers. Not just one flower, but at least twenty different roses.

I was late for an appointment and didn’t even care because the appointment could be rescheduled if it was important. If it wasn’t important, well then what was the issue?

It all sounds so easy and we hear people talk about making personal time like it’s a given thing. But it isn’t. Unless you decide it is worth it. Then you make the time, and it isn’t easy at first, until you realize what you are saying is that for once you will make yourself priority. For once you will find spaces where you dictate your time and schedule as you see right.

And slowly the feeling of guilt will disappear. Guilt that you aren’t everything to everyone. Because before you can give everything that people want to take from you, you must give to yourself wholly and completely. Because at the end of the day, at the end of the career or when the kids have grown up and moved on, when the titles have changed, no one is going to care about all that you gave up to meet their expectations. Some of those people wont’ even be there any more. And as we get older it is harder to bend down to smell those flowers, eye sight may fade so we can’t see those clouds moving. And we will have missed out on more than just time. We will have missed out on giving ourselves permission to be what we need to be when we need to be it. We will have denied ourselves the healing of space and peace.