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!
Sometimes all it takes is a new gadget or toy to get someone involved in something that she had been reluctant to do before. Sometimes, but not always. Certainly not if the person we are talking about is me.
One of the things someone gave me to help with my self-care routine is a tea scoop and steeping device all in one. It is supposed to provide you with the right amount of tea while also allowing you to put it in your mug so that you can steep your tea in basically two very easy steps. When your tea is steeped to the set amount of time or to your liking, you simply pull this device out and enjoy the brew. Easy peasy right?
And since I’ve protested the journey of cutting back on my caffeine by kicking and screaming this lovely person thought this would make it easier to move into a tea routine. As though giving up coffee would be that simple. And someone else happily provided me with lovely fruit flavored teas so that I can enjoy them hot or cold while still using my cute little device. Because let’s face it, these people collaborated! 😊
As cool as the gadget is, as amazingly fun as it is now to brew a mug or beaker as Beloved used to say, it still doesn’t replace coffee. How can it when coffee basically runs threw my veins? But still there is something I cannot deny about this gadget. Will it get me to drink more tea and thus cut down on my caffeine intake? Perhaps, and perhaps it’s a short journey that takes me back to beans and all the fun gadgets that go with making coffee.
What I can say right now is that I’ve consumed more tea than I usually do so right now we can say it is an experience to the good side of self-care.
Bless my heart, and bless your hearts as well. Not in a bad way mind you. Just in a sense that we all, we’ll lets face it, this time of year tends to mean people are harder on themselves. Perhaps you made resolutions, or goals. Maybe you set yourself a new set of expectations.
We do start off with the best of intentions don’t we? We mean well, we want the best for ourselves and those we care about. So we vow to hit the gym, eat better,and spend more time disconnected. It’s great, that whole new field of changes. Wide open space and bright new canvases to paint upon.
And then reality, or life, comes to our doors. We mess up on eating right. Somehow a cheeseburger or fries ends up being consumed. We miss a day at the gym because we have too many meetings or what have you. So get down, we get hard on ourselves. We forget that this is a journey, not a short sprint. Habits take time to adjust.
I know I berate myself for slipping up, for making a bad choice or just forgetting to do what I planned. It is, of course, the wrong thing to do. After a mistake like that I should dust myself off,encourage myself to get back up there and try again. Instead I toss more energy into punishing myself and soon, al too soon that is, I’ve lost sight of what I was trying to do.
friends, let’s speak more kindly to ourselves. Let’s remind ourselves that change is hard and nothing that is meant to last a lifetime is built or created in one day. Let’s encourage each other, catching each other when we stumble and most of all let’s be gentle because the hard part is change and transitions.
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.
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!
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.
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.