For those of you who are new to chronic illness, it’s time to explain what our energy is like on a daily basis. Imagine doing a 3 hour personal training exercise everyday. That’s how we feel when we wake up. I don’t know about you but it takes me no less than 30 minutes just to get out of bed. I say all this to encourage you to let no one shame you for how you feel. This is your struggle and your super power, because it’s takes unusually strong individuals to be chronic warriors. Remind your doubters that!
Time..
Time can go by very slowly when pain is persistent. Many believe that chronic warriors have emotional instabilities (such as depression etc), while this may be true of some all are not tortured by such. However, when we have continuous pain and overall feelings of sickness it can put you in a sense of great sadness because you want to feel better. When I experience a flare that lasts for days or weeks, it hard to be cheery or look forward to a new day. When you understand these things, genuine concern, and big hugs, whether virtual or in person are much appreciated. Asking questions like, are you still sick, are definitely not helpful. Encouragement, encouragement, encouragement…so much needed. Have you sent any hugs today?
Tough Times..
Have you ever had to be jovial in circumstances when you didn’t feel like it? Or expect to have your lesser pain attitude when around others, even though your body is screaming? You are a normal chronic illness warrior. There are times when being jovial helps to temporarily take my mind off of the pain. Other times I want to disappear. Regardless, what we do every day is a balancing act, that when disturbed, throws everything off. So when people call us lazy, they have no idea.. It really only matters what you look in the mirror and see.
Remember Your Motivation…
These past few weeks have been really tough to push through.. I had to take a few moments to think about what makes me get out of bed everyday. This is not on a depression level but on a tired of pain level. I had to think about my child, my husband, the people who depend on me to really be there for them. At the same time I was pouring from an empty bucket. I had to take the time to assure myself I was giving my best even if my body wasn’t. This goes beyond self care, but having a quiet moment to yourself and give yourself that pep talk that you deserve. We as chronic warriors always beat ourselves up about what we don’t do, it’s important to take time and pat yourself on the back about what you’re able to accomplish. If no one has told you lately. YOU’RE AWESOME!!
Seasonal Changes..
There are times when you really have to stop and smell the flowers. I go through periods of uncontrolled exhaustion. At times I wonder if it is due to seasonal unscheduled changes. Today where I live it’s 70 degrees in February. No I don’t live in Florida. Of course it’s scheduled to do a drastic drop in a few days. That usually sends me into a flare but I’m going to stay positive. I don’t know about you but I’m counting down to spring, and no I’m not depending on the groundhog to tell me when it’s coming…😉
Whew….
I really work hard to be transparent and yet encouraging in my blog. This past 2 weeks has been extremely difficult. Not just physically but mentally and emotionally. I had to receive a shot injection for pain and from that point it felt like I no longer had control of my emotions or thoughts. The things I would usually say to myself I was saying out loud and loving it. When it was time to sleep my brain was running like a V8 engine but my body was Exhausted!! It took DAYS to come down off this feeling and still my “nerves” feel fragile. The battles we face and fight are not taken seriously or emphatically because they are so invisible. This doesn’t make them any less real. I m actually excited about going through the “calming adventure” currently. I took the time off to deal accordingly and will continue to do so to preserve what’s left of the precious specimen “me”.
How Many Times?
How many times have you felt judged when sitting in a doctor’s chair? Oh, they are just here for pain, or- it’s all in their head, or even- I hope this year is a better one for you. I was told the last one even though nothing in my regimen has changed. How frustrating! I can’t begin to tell you how many times I’ve walked out of an office in tears and wishing I could turn back time to see how I got here. Well, unfortunately reality is you can’t, but you can definitely move forward and in a positive direction. Reaching out to the chronic illness community has helped me. You get information on doctors in the area with a proven record, you even get natural remedies you may have not had any knowledge of. While we know at this moment there is no cure, there is always comfort and hope. That never completely goes away.
Clearing the Fog…
Have you ever had such a day where every thought was crisp and clear, and then in a few hours you couldn’t remember your best friends name. My friend, you have experienced chronic illness at it’s best. My apologies. Since a child, I ve always loved to read and write creative tales. When my clarity started to disappear it seemed as if my vocabulary had shrunk to a few words. It’s so embarrassing when in the middle of a conversation, you can’t finish your thought. While I’ve found no ways to rid myself of this, I’ve found the playing if games that excercise the mind is quite helpful. Word fund, cross word, object finds…they are all good for exercising the brain muscle and putting a stamp on the memory. There are times I can remember clearly something that happened in my childhood and other times, I can’t remember what happened yesterday. Cherish all the beautiful things you can remember and work hard to keep them from fading away…
Baby Steps
I’m sure you will agree that 2020 has taught us some tough lessons. Now embarking on a new year, what would you change, are you cleaning out emotional and physical garbage? We set goals and aspirations every year to be a better us. Few people will understand we make unattainable goals everyday, use only allotted spoons. Never enough spoons or time in the day. We should be more neighborly, soak in the sun, smile at one person each day. Theses are simple things that could brighten up someone’s dim outlook.
Unexpected
The one thing about chronic illness is life comes at you with lightning speed. This brings unexpected reactions from your emotional, and physical self. These past two weeks I(the cared for) became the care giver. What a role change!! Talking about having to pull deep, my mom became sick and had to have a major operation. I had to take her back and forth to appointments and to surgery. This gave me an opportunity to really feel what the caregivers may feel. I was unexplainably tired but had to pull from weeks of spoons to get it done. Now that everything has slowed down some, recovery is in process. I’m happy to be somewhat back on my schedule and hope now to stack my spoons back up.
Butterfly Chronicles 