I started consciously being an active person when I was a "tween" before tweens were called tweens. You know in the olden days, the 1980's. My mom started walking with me in the evenings because I was a bit chubby. I wasn't quite a fat kid but certainly not a skinny kid. It was an awkward time for me, as it is for most kids. I'm sure Mom did not want to go for a walk after working all day on her feet at the hospital but she made it seem like she wanted to go, and we always had a nice time. I thank her in my head almost weekly for giving me the gift of movement in nature as a form of healing, therapy, and play. I am most certain that these nightly walks helped me more than any class in school, aside from drivers education, or any therapy since. So now I continue the walks sometimes with friends and sometimes on my own.
I consistently and faithfully stayed active if not non-competitively athletic for my adult life. It was in the late 90's when something bizarre happened. It was over the course of a few months when all of a sudden my energy and vibrancy for life quickly faded. My running turned only to walking to suddenly not getting out of bed and my strictly healthy ritual of waterin the am turned to coffee...gasp. I just figured I had mono or something but many trips to my PCP (who I realize now was a HORRIBLE doctor) yielded no answers. In fact one trip he asserted that I was stressed even though I reported low stress. (I know low stress nice!) It took months if not longer to get a diagnosis of SLE, Systemic Lupus Erythematosus aka Lupus, an autoimmune disease. Unlike about 30-40% of Lupus patients I do not get the butterfly rash across my nose and cheeks what most consider the hallmark of the disease because let's face it, we can see it. Lupus is serious business your immune system is sort of an idiot. The white blood cells that would normally seek out foreign threats to our body can't recognize the invader from the bodies own cells. Seriously my white blood cells are idiots. What does this mean? It means my immune system is almost constantly on overdrive. It's ADHD white cells seeking out anything that looks suspicious. This means I never know from day to day what I am going to wake up to.
Information from the AARDA: www.aarda.org
That sucks right!! The normal days I just have Lupus but stretches of bad days could mean a "flare" or an active disease state. These are bad times they can last a week or two or more commonly about two months...or longer. I can get a break a day here and there but I pretty much feel exhausted, bored, and have terrible pain. The only time I can feel really normal is when I'm on an antibiotic. Which is odd since hey I feel gross enough to need an antibiotic. But my energy returns and I feel much better. Then when I'm off the medication I swing to a low. It's a ride I tell you. The kicker is there is no such thing as a "Lupus Doctor". You have a heart problem you go to the cardiologist. You have an autoimmune problem you go to a...wait....yeah you go to about five different doctors: rheumatologist; neurologist; PCP; endocrinologist; orthopedist; pediatrist; to name a few. (all of whom I see on a regular basis)
Most of the time my body feels pain in most joints, but amplified in my extremities. I have "lady" issues, neurologic problems, and my thyroid doesn't work well. This past winter I struggled through a few months of lung issues. I have been offered steroids only to refuse them due to the long term side effects. The only thing to do is loads of self-care, self-care, and to remember "this too shall pass". So why am I sharing this??? Trust me I want ZERO sympathy but empathy I will gladly except as well as a deeper understanding of what it is like living with a chronic illness. I hope I can get across what it's like first to live with it, and secondly what it is like to maintain relationships in the midst of it.
I am a social and happy person by nature. I was also born type A. Lupus and social and Type A really do not want to share the same bed. When I wake up in the morning I check in with my body and figure out how many spoons I have for the day.* Then I can decide what tasks to tackle. Sometimes it's a shower and get food in my body. Some days it's house chores. On good days I write for my blog, see a client, make a phone call, take a shower.....those are the days I love. My most favorite of days still involve my walk through my neighborhood. No matter what I NEVER give up. **
The most difficult part of living with a chronic illness is the loss of being consistent and reliable. I can no longer be the reliable person I want to be. You can't count on me to attend that party I said I would, show up to your dinner party, show up to work, and sadly count on my brain to work 100% so I can do what needs to be done all the time. I know when my friends say, "We really missed you!" they mean it and when they try to get me to go out repeatedly after I've said I can't it's because they want to be with me, but honestly it uses up spoons to explain why I have to reschedule or cannot come. So if you are reading this and know someone with chronic illness my advice is this: ask what you can do to help. If we are too tired to respond get us some food or send a quick text "thinking about you I'm sorry this is so sucky...." etc. We just want you to know that we 1) want to be there 2) can't be there so telling us you missed us only reminds us of what we missed 3) feel isolated when we are unwell but cannot do anything about it. We want more than anything to live like you do!
I've learned to really be okay with saying no to whatever I know I can't do or know will be too taxing. Sometimes I throw caution to the wind and it works out and sometimes I learn my lesson. But ultimately having a chronic illness has sorted out my true friends from my acquaintances and shined the light on anyone in my life who isn't worth the extra spoons to deal with. (So I suppose that's a gift right!) Right now I have an amazing circle of support. I thank them...and probably should do so more frequently. I know having a friend with chronic illness can be a real drag...hey I know I feel like a drag to myself sometimes. But we have a wisdom beyond our age, a passion for life bigger than any well person could understand, and a true appreciation for what we have and for what we don't have. We want more than anything to wake up one day and feel healthy, to not have to count spoons, and most importantly to be and do more than we are able to for our family and friends.
*Visit the following website to learn more about spoon theory. The Wikipedia description is really inaccurrate for most chronic illness since most of us only get a certain number of spoons for a day. We can't recharge them but must conserve them. http://www.butyoudontlooksick.com/category/the-spoon-theory/
**I gave up for forty five minutes last week but gave myself a pep talk to put my big girl pants on and do my exercise tape! I did my exercise tape. I used all my spoons but I did it!!!
Special thanks to my friend Nina for encouraging me to write this!
Welcome to Healthy Home & Heart. I am a full-time healer, folk herbalist, and empath. I invite you to share in some of the journeys in this world of ours through my eyes.