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.
When I was younger, I used to feed animals bits of crackers and such. If you were a duck or a goose, chances are I would throw the cracker your way. If you were a squirrel or a chipmunk I would place the bit of cracker somewhere near me for you to come and nibble on. I might also have nuts or seed grass pieces to hold out to you if you were cute and fuzzy.
My all time favorite to feed was chipmunks, you see I loved how they would pack all the offered food into their cheeks which would get chubbier and chubbier. I guess back then I adored chubby cheeks, and to a degree I still do, just not on me. And unfortunately as part of my lupus treatment I take a steroid called prednisone which just happens to give me chubby cheeks. Well actually what it does besides giving me chubby cheeks is an incredible appetite, which results in the desire to eat all the time. Eating all the time can lead to more than chubby cheeks. And chubby cheeks on me are not cute, not like they are on chipmunks. Thankfully I do not stay on prednisone all the time!
A while ago I stayed at a bed and breakfast which had the most amazing food and quilts. Not together mind you, but the food was some of the most delicious and simple food I’ve ever had and as for the quilt, well it was perfect in weight and comfort.
It was the kind of place that you want to share with someone, or maybe it was the experience that I wanted to share most of all with a certain someone. At any rate it was a lovely visit that i know a certain person in my life would have enjoyed with me.
You see this person is an amazing friend, one I’ve unfortunately taken for granted at times, ignored at times and such. She is one of the most incredible people I know. When I told her about my diagnosis of lupus she went out and did her own research, not just to understand the illness, but also how to be involved in and incredibly supportive way.
The delicious food was something that I know she would have enjoyed and we would have had a wonderful time sharing and tasting things. As for the quilt, well this lady makes the most amazing hand stitched quilts. Anyone who receives any of her handy work (she does al types of amazing, creative things made with love) is truly lucky for they are made with love and that love simply wraps around you.
Without ever saying it, her support, her love and her positivity has always been open to me. Sadly I’ve been too stubborn at times to receive or be open to her positiveness. As I lack creative skills,I am unable to develop a quilt for her to let her know how important she has been in my journey in life with lupus.
I am not a fan of breakfast in bed. To be honest I’m not a fan of any meal in bed, this may be a result of too many hospital stays. And then again, it may be a case of feeling that where I eat should not be the same place where I sleep.
This doesn’t mean that I don’t eat in bed, obviously that’s the case when I’m staying over at the hospital. And yes it is true, Beloved has served me breakfast in bed a few times as well as other meals. I just don’t enjoy it as much as some people seem to like eating in bed.
it isn’t just because of the crumbs and such getting in your sheets. You see friends, I don’t spend a lot of time in bed when I feel well. When I’m in a horrible lupus flare however I may spend days in bed. Those days pass by in a blur of sleep, pain and medications.
Perhaps it is because I’m a product of my upbringing where unless I was very ill my parents expected me to be up and about doing things. Heck my mother subscribed to the theory of get up and get dressed because you will feel better. Sometimes it works, sometimes I don’t even have the energy to get out of bed. At best I pull a brush through my hair.
So why am I telling you all this? Because recently someone told me they thought the most decadent thing in the world was eating breakfast in bed. Now I’m sure she didn’t mean the jello cups that I get in the hospital, but I just can’t see how eating in bed is decadent. How about you? Has lupus ruined a good thing for me?
A friend told me she has several wedding invitations already for late spring and summer. Another friend shared that she has a few requests for cabin/lake time as well as beach time. Beloved also has received invitations for various outings for spring and summer, and like most people he won’t be able to attend all of them so he will have to make choices.
There was a time in my life when I had all these invites as well, however having to miss so many things due to health issues and such the invitations slowly die out. I don’t blame people for this, I mean at some point you get tired of a certain someone cancelling on you last-minute. No matter how understanding you are, it gets tiresome. I understand that.
The thing is, being the person who is always cancelling at the last-minute I also find these last-minute cancellations to be tiring. I’m tired of not knowing until the very last moment if I will be able to attend a gathering. Sometimes I lose the energy while I’m getting ready, such as doing my hair or getting dressed. Other times I wake up and just know I can’t make it.
But as I said, cancelling gets tiring to, as does the whole sense of being isolated. So often times I will push myself to go out and deal with the aftermath as needed. Unfortunately that has meant being short-tempered, snarky and such with friends and loved ones; pain never brings out the best of me.
On one hand it would be better to just stay away from anything that requires an invitation and such for both my sanity and those I care about. On the other hand no one wants to be ignored. Except when there are a million wedding and party invitations during the beautiful days of spring and summer!
I’m always torn this time of year; I love all the colours and smells as nature uncurls her beauty, but I dread certain things. Mostly what I dread are the stinging flying insects as well as the bloodsuckers that seem impossible to avoid. And this time of year I must deal those suddenly alive and very hungry mosquito mommies as well as what seems like a lab sheet of required blood work that’s several miles long.
I can at least protect myself from the insects that seek my blood, unfortunately for health reasons I cannot avoid the lovely folks who let my blood for various lab tests. It’s part of the deal I made when I started treatment for my lupus.
Well to be completely fair and honest, had I know how much blood I’d be donating for lab tests and such I may have hesitated a little more about my treatment. I’m not a fan of needless and yet lupus have meant more needles than I had ever thought possible.
I have needles for blood draws, needles for treatment, needles for tests and on and on he list goes. I call myself a human pincushion at times. And yes I do call my Phlebotomists vampires. Hey you have to find fun where you can at times because laughter helps.
Now I just wish the mosquitoes would get the message that I’ve already donated my annual supply of blood.
My favorite color is not blue. I also have never called red nor purple my favorite colors. It’s not that I hate them, they just don’t happen to be my favorite colors. You’d never know it though by the way my body behaves.
Typically my fingers/hands and feet will be blue or purple when I’m mildly cold. My hands and feet, during these times, are not mildly cold, they are freezing cold. As a matter of fact if I place my hand in a freezer for a few seconds on a hot summer day, my hand will remain freezer cold and purple or blue for hours.
My hands and feet will turn brilliant red if I get too warm. (This isn’t all that common for the record.). When my hands and feet are brilliant red they are also swollen and itchy.
Both the turning blue or purple and the redness are courtesy of a condition known as Raynaud’s. In my case Raynaud’s was a secondary bit of fun that came along with lupus.
Lupus also adds color to my life, well body through purples and reds. My charming butterfly rash, when present, gives me red cheeks. Lupus, when attacking my joints, will turn them a puffy red mess. As for the purple, well I seem to bruise easily with lupus.
So you see it’s rather interesting that my body thinks that red, purple and blue are my favorite colors. Granted if my body were to display my favorite color I’m pretty sure I’d end up quarantined!