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!
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.
We headed out for a short walk, or so I thought. My travel companion had a very different idea, or perhaps we just have a different understanding of what is a short walk. Then again it can be hard to control one’s self when one is off on a big adventure. And that, my friends, is how my travel companion sees just about every walk we take.
So every time I thought we were about to turn back, my companion would lunge ahead, tempted by the scent of something new. She didn’t heed my reminder that we would have to walk all this way back home, or how tired she was judging from her tongue flopping out of mouth now and then. Still forward we pushed as though heading home wasn’t an option, or something less than desirable at any rate.
Slowly we worked our way home walking the long way. She seemed oblivious of what I was doing, or at least happy to allowed to carry on her adventurous mode by taking the long, out-of-the-way path back home.
Upon arrival back home, an hour later, she immediately had a drink and flopped in a spot of sunlight and promptly fell asleep. The kind of sleep where you don’t even move because you are so tired. Of course that sleep lasted just long enough to get the taste for another adventure, long before I was ready for one. But then my companion doesn’t worry too much about whether or not I’m ready for another adventure so much as she works on that cute, whole body wiggle or wag thing that she does when she really wants something. And she knows that I find it irresistible and give in, because an adventure means more fun just ahead or around the corner.
I knew I was getting older. And I expected certain things to happen as I got a little more mature, shall we say. You know, things like vision issues, mobility issues. That kind of thing. I Am actually prepared for that. What I wasn’t expecting was my hearing. It seems that I’m more sensitive to noises now then when I was younger. The lovely Doctor indicated that this can happen as we get older, but it rarely happens. The volume I used to listen to the television at now is painful to my ears. So super hearing is surely on the way. More likely the nice man told me it is that I have more frequently headaches due to light and noise sensitivity. Pity. I was looking forward to having an awesome super power. Not that the hearing would be my issue. But I’d take what I get.
But then I got to thinking will there come a point where every little thing is just too much or just too loud, too bright? As I thought about I shared my thoughts with a friend who suggested that I just need a break from all the noise around me. She said that today we are exposed to so much noise all the time it could just be that my ears are rebelling. It’s a nice thought, one that fits with today, but I do wonder if maybe before one’s hearing goes down it gets more sensitive.
But I am going to take a rest from all the noise around. I shall curl up with a lovely book for a while and listen to nothing loud than the turning of pages!
I’ve been putting off tomorrow’s appointment for as long as I can. Now I have nothing against this doctor, honestly he is a sweet and helpful man, but I just have been avoiding seeing him. Because we both know where this appointment is going.
I would have continued to postpone this appointment, but while trying to get a prescription refilled I was told I had to actually see the doctor this time. Gulp! Oh sure he will be his usual pleasant, polite self as he tells me we are out of options. No more putting this off. And I will sit there in that small black chair and grasp at some other straw. Anything other than a hospitalization. Again.
Last time we danced around this very topic I was literally saved by the bell. The fire alarm to be exact. Going off down the hall so we got evacuated and by the time I got back, I had figured out my strategy was to take another six months just to really test how the current medication was or wasn’t working. I think because he was somewhat distracted by things, he agreed to my request.
Short of getting another fire alarm this time, I somehow doubt I can ask for another six months of poor results and further health complications. And it isn’t that I want to get worse, I just. Look it’s a hospital. Not my own home. It’s not my bed, not my things and not my routine. It means needing help…more than I care to have. It means being vulnerable..more than I care to be. And none of these things comes with the promise of getting better. If I’m lucky they come with the promise of being stable. Which frankly would be nice, I suppose, but it’s been so long since I’ve been stable I am kind of comfortable in my instability.
Of course Beloved has decided that my instability with how lupus affects my organs may migrate to making me irrational. Why else, he wonders, do I put off what can help slow down if not prevent damage now.
Of course it isn’t him going into the hospital. The freezing cold rooms. The noise and smells. The routine not like mine, the insistence that I rest when I have much still to do. The food isn’t the same, the dogs won’t be there. Oh I can draw a huge list, but before I get too far down the road, I will spend some time seeking straws to grasp for tomorrow’s appointment.
A tiny puddle of sunshine stubbornly resisted being erased by the incoming clouds. Somehow both dogs managed to claim the puddle for themselves. Well let’s put it this way, each managed to get a few body parts in the sunshine. 😉
I wasn’t jealous of the dogs having the puddle. I had no desire to let the sun splash its rays down on me. Not today. You see today I woke up feel like a truck had run over me several times and before a pack of wild dogs decided to play tug-of-war with my body. In other words I woke up knowing lupus had the upper hand. So I decided the sun wasn’t in the picture for me. No sense giving lupus more fuel.
At the same time, why should the dogs not have their fun in the sun? And if the clouds cooperate all the better I say! See, a silver lining n every cloud and all that! 😉
So while lupus may have made me slower today, it was the perfect day for the dogs to rest in a bit of sun and for me to be out with them and have nice shade. It also was the perfect day to rest so yet again the weather cooperated. To be honest the only thing that didn’t cooperate was Beloved needing us to drop some stuff off for him. It got in the way of the whole slow and relaxed practice, especially since it means struggling to get the dogs in the car along with the box of stuff he needed.
After that, we all deserved a bit of rest and relaxation so the pain would settle a little for me and the dogs could just enjoy!
“It’s like anything,” he was saying as I tried to blink away the spots I was seeing before my eyes, “you can overwork them and they become fatigued. Rest is in order.” Not exactly what I wanted to hear. Not exactly something I could comprehend, but there it was. Rest. The big elephant in the room with my lupus, the eye doctor and myself.
You know how some times words take form on your lips without you giving it even a passing thought? As if they are a force all of their own? I seem to have a lot of these moments lately so I shouldn’t have been surprised when I heard my own voice asking how exactly was I supposed to rest my eyes?
obviously reading all the fine printed material I tend to read doesn’t help, nor does working on the computers and tablets do me any favours. Reading limited printed, in proper lighting was offered. As was sitting with my eyes closed and just relaxing. He even suggested cucumber slices resting atop closed eyes.
Eyes. What next lupus? What next? Is there any end to your greed or need to show your power? Why does this dance, nay, this relationship with you have to be so challenging? Why must we struggle against each other, showing strength and will in some weird contest? Haven’t you done enough?
These were the thoughts that have been bouncing around my head as I listen to the birds and animals. As I feel the sun, take in it’s brightness behind closed eyes. And somewhere, as. Think these thoughts I feel more of the fire fanning flames within me. Some of the fire is lupus. Flexing her strength. Some of the fire is my own anger or outrage at this disease and my own unease with it.
I must work my way towards fight the fire in a good way. Surely this can happen easily as I still have more days of resting my eyes. Surely I will find a way to see in other means, the way some other people can.