#just what the doctor ordered

Saturday has come to an end…another weekend spent in bed, in pain, in a flareup… …..on the bright side, today was beautiful and I was able to leave the house for 20 minutes…I can count on one hand the number of productive weekends I have had over the last 6 months (less than 5)….I’m grateful for those moments as they keep me built up when my body shuts down like it has been this week….I hope everyone had a purposeful, productive and mindful weekend… if not I hope you had peace and got some rest…sometimes doing absolutely nothing is just what the doctor ordered….often times we dismiss our bodies when it tells us to stop, take a break, and rest….I dismissed mine for years and it is pushing back, telling me to take a break, restore and repair….so, I’ll be grateful for the opportunity I have to stop and rest, it doesn’t always seem ideal, but bed rest is just what my body ordered…good night, stay blessed…and as always #stay triumphant

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#late nights and early mornings

somehow I see the light at the end of this intense flare up….happy to have made it through Wednesday….almost to bed, finishing up a project that I couldn’t be put off…medicated up and dragged this body up to cooperate with my mind….here’s to hoping that I make it up in time for my 9 am therapist appointment…whew..wishing everyone low pain, peace and love tonight….until tomorrow…#stay triumphant

#pray for me

I’m calling for prayers tonight…pushed way too far today and my body is pushing back…. aching down to the marrow..and that’s no exaggeration…the unsteady damp/cool weather isn’t helping much…but mainly this flush of fatigue and pain is my fault…you know that I know better…wishing everyone a peaceful night…now it’s time for me to go say a few prayers, one for better judgement and a second and third to make sure I remember to stay under the limit the next time…peace and love and goodnight…#stay triumphant

#alexander and the terrible, horrible, no good, very bad day

the title of this post pretty much sums it up for me this morning…sorry for my lack of positivity….thankful to be able to gather enough strength and drag out of bed, and be able to feel my legs…..pain very severe today with near crippling fatigue…listening to my body and forgoing my walk…I guess that is mindful of me…maybe Pilates, if I can wrap my head around it…mind is heady and senses are dulled and heavy….feeling woeful that I was feeling relatively decent this week…and here it goes again…ok, NO! I won’t go to that place…I must remember…when I can do, Do…when I can’t, Don’t….it’s just that simple…how is everyone else doing today?…who else feels like Alexander, in one of my favorite children’s books?….dig in deep and try to push through that feeling…sending hugs and positive vibes your way…#Happy Thursday

#foot in mouth syndrome

well folks..I am finally back in Nashville…it was nice to get away but there is no place like the place you call home…I am always dreading plane rides…they drag out into long arduous, exhausting all day ordeals…and with all the chronic issues I deal with… I am always thinking 5 steps ahead and how to prepare my mind and body for the agony that lies ahead…today’s return flight was no different…I actually am doing better with relaxing and accepting all that goes into a flight…. but my body is screaming in agony, pain, fire, fatigue, and just check all of the above…

but enough about that…what I really wanted to make this post about was an inciteful and thought provoking post that I read over at Decimawho.. who is from London and also lives the journey of chronic illness, Lyme Disease to be exact…this post entitled All in the Same Boat…really struck a chord with me…in a nutshell the post vents about the frustrations over friends, family, and other pain sufferers who make comments and say things like: look on the bright side, or we are all in the same boat, which on the surface seem small and are intended to help…. but actually do the opposite and make you feel more alone, more isolated, worse than you already feel…and for me downright piss you off…

no one person with a chronic illness is the same as the next, if you have met one person with a chronic disease… we are each unique and although we may share an empathic bond of sorts… you have met just that one person, our abilities and what we can do varies even with the same disease and our experiences are just that, our experiences….not to be shared, compared, or put up against another person…this post hit home for me because in their ignorance my family often makes small insidious comments that seem innocent on the outside… but for me take roots deep into my psyche and only make me feel worse about myself… for just today as I sat in the airport texting my family about my progress during the trip, I told one person that I have touched down safe…and that I was deeply fatigued and exhausted…now this comment was just to make conversation…I wasn’t complaining or trying to garner sympathy or even a reply… it was just a status update, nothing more, nothing less..the reply I got back was: You will be ok…. now I know my mood is often on a roller coaster and some days I cry at the drop of a hat and I am very sensitive to the world in general…but how does that comment read to you?… for me, it just struck a raw nerve…did the person really have to reply that way…my initial comment in no way implied that I was not ok, and of course, I know I will be ok

I live these diseases every waking second of everyday…fatigue and exhaustion are a part of my existence, just like breathing or blinking, I feel fatigue all the time…the comment was unnecessary and I replied in a acerbic way to let the person know that it was unnecessary….and not at all helpful…frankly, I am tired of letting these small, insidious types of comments slide…sick of making nice… grinning and bearing it…only to feel anger and heat welling up inside, making my body pulsate with pain evenĀ  worse than it already does…I call this foot in mouth syndrome, where people are trying to be kind or helpful or whatever they are trying to do…but the comments don’t go over well and do more harm than good…

well like Decimawho, I am taking no more… I am taking a stand to let people know that sometimes saying nothing at all is best…less is best… you do not always need to say anything and if you do, try to think about your comment before you utter it from your mouth….since once it comes out…there is no turning back…the damage is done.. and unlike a slap in the face…the sting of poor words spoken at the wrong time, does not go away….it can linger, suffocate, and hurt for days, weeks, months even…

thanks for reading and letting me vent, I know this is a long post but I have wanted to get it out all day, since I read Decimowho’s post and then fate made me experience just what they were expressing in the blog post….please do stop by Decimawho’s blog and follow their journey…we are all connected in this chronic world and learn from each other..how to deal one day at a time… have a blessed night….#stay triumphant

#home bound

well this country mouse is headed back south….I have spent the last 3 weeks in upstate NY trying to get some R&R, reflection time, and TLC since my physical condition has been deteriorating over the last 3 months…I was successful in fulfilling some of these goals and not so successful in others…I love my family..but I must say I am at a place where I am happy with my Nashville home and living solo….my faith and resolve has been strengthened….despite chronic illness, I will be ok …I will not let it take away my independence or my happiness…I can say that my gluten free and vegan diet was hard to maintain here at home and I found myself acquiescing, bending, and conforming my rules to that of others …eating things that I have since removed from my diet…I am ok with doing this…instead of fighting and being the sourpuss, I took the hit and will get back to me and a detox upon returning home…when I live on my turf, I live my way…pain and fatigue high today, but emotional spirit is higher..I have many irons in the fire literally and figuratively…I hope everyone had a marvelous Monday…traveling day tomorrow so I won’t be posting a whole lot….be blessed #stay triumphant