Truly "Living" between Flares

Life without chronic illness is difficult enough these days. Our times seems to never be our own. When you work outside the home, have children, and try to maintain a home, how you work in "self time" is certainly a challenge.

Yet, when you deal with a chronic illness or illnesses, especially those that bring pain, fatigue and other symptoms that slow you down, it is just as bad as the above. You may not work "outside" the home, and due to illness and pain, you do not have the capability to do all you set out to do in a given day, thus time is even more of a precious commodity. I have been so very fortunate to have most of the long time "flares" seemingly under control. Even though it took many years, even my husband and family notice that my days and weeks of being on the sofa, day after day, not able to do much of anything have become less and less. The past couple of months have just been mind boggling even for me. Sure, I still have daily pain, stiffness, swelling, and the fatigue is always on the back burner simmering. Yet, I have been able to keep them under control, at bay, for a good while now.

The spring and summer always seem to help bring even the worst of chronic illness somewhat to a lesser stance. You still have symptoms, they are like the wolf, always underlying, you know they have not left for good. Yet, medications seem to work better, just having an increase of sun light, and not so much dreary and dark time in our days, the warmth (LET'S SAY Hot as HADES!!) in TX now, the beauty of flowers, green trees, and all of the "renewal" of life, is like breathing fresh life into your own body. Now, I must admit there are some things about the heat and sun that are not good at all for diseases such as Lupus, RA, FM, CFS and the like. As wonderful as sunlight is for all of us, when filtered out from the harmful rays with the proper sunscreen, it can bring an acute flair of Lupus on. You must be extremely cautious about the sun. I know I get a little lax in putting on my sunscreen, or I want to run out in middle of the hot part of the afternoon and put more water on my newer planted plants, and as soon as I step into that hot sun, beading down on me, I can just feel it blistering my skin. I know the Lupus has lots to do with it, but so do some of the medications I take for the Lupus. My skin has become so thin, that a few moments out in full sun, and I am baking not the correct kind. So, please heed the warnings, for all, if you are outside, use the sunscreen to block those harmful rays and do not overheat when doing activities such as yard work. IF you have Lupus, you want to AVOID the full sun as much as possible. Use your sunscreen especially a good one on your face. You have the added benefit of helping to hold back wrinkles and fine lines that those sun worshipers tend to find at a young age.

Thus back to my story. I have been able for weeks now to enjoy being outside. Along with the coming of spring and summer came a renewal of life almost, when I an able to be out in the wonders of the warm weather. I love the plant life, all of the blossoms, the greenness of the trees, the breeze when it is here and not a hot breeze, planting new plants, and all that you can do when the days are longer. Yet I know I take a chance when I get out and "overdo". I know on those days I feel almost normal again, so I want to cherish every moment, by working everything possible in that I have not felt like doing for so long.

Of course, I knew there would soon come a day that the "wolf" would rear his ugly head, and yesterday was the day. I woke feeling like I had partied for days without stopping. I felt like I had a hangover from hell, severe headache, nauseated, pain in my joints, fatigue, and just so lethargic. All of those symptoms you dread, because you know what they mean. Thus I was on the sofa most of the day yesterday. Then you are concerned... you ask yourself "is this just a one day thing", or is this going to turn into a full blown flare? You make it almost worse because you question your own motives. Yet, I tried my best not question whether this is a full blown flair, and try to not feel "personally" responsible it came on. There are times when someone with Lupus may not appear to do anything to "cause" this horrid "Wolf" to surface and yet you still have all of the symptoms. Other times you may be out and about for weeks at a time, even months, staying busy, not even concerned about this chronic illness coming on. And you may run errands, be outside, do yard work, house work, and run around like a "chicken with your head cut off" as my Dad used to say, yet the activities don't effect your outcome of a flare or not. So, as I walked in the very early dawn around my driveway for my usual exercise time, I thought about lyrics to a song that somehow could "signify" all the different things and ways Lupus and the other Chronic Illnesses and Pain act in your life... But, I want to make it more not actually using the Lupus word in the song... but someway I want to get the message over about the heart ache, the devastation, the pain, the fogginess... yet just how much courage you have to have to rise above all of that each morning, face the day... and try to meet the challenge of these illnesses no matter what they decide you should stand for in your life. LOL, brain fog at the moment in fact has set in. I have a certain "word" I want to use to describe what I want the lyrics to be, yet I can't think of the exact word to describe what I am speaking of.

Thus, so as I walked and walked, singing to myself, different ways to put lyrics, in order for whomever hears it will know it is about a heart ache, but not one about love's and the way it can break your heart... I want to word it to where... it is a ........ well damned, an explanation about the disease and its symptoms without using Lupus etc in it exactly... Ah!!!! "Metaphorical Music!" that is the "term" I spent hours looking for to describe the type of music lyrics I am trying to write. See, another day of haze from my brain... yet I won't allow that wolf to get hold of my reigns.... I see him coming, I hear his roar... for I Know the Wolf can come a knocking at my door...

Just a line or so I thought might work... not sure.. but at least I finally found what one word I was trying my damnedest to think of....

Okay, more things to do, like get over the damned "sting" that I got this am while watering plants outside... I received a surprise that I did not want... not sure what it was but I think a ground hornet that decided to use my foot for his stings... I cried and screamed... OMG right between my toes...
Thus I am a bit tired this morning, and kind of worn down...