Posts Tagged With: rest

I’M OK

I’ve been reflecting a lot about my Blog post yesterday, “Diagnosis Part 5: MRI”.

It helped so much to write that. I needed to really get that out. I needed to tell the whole world about my experience. It freed me a lot. I felt lighter after I wrote it and I’ve been breathing easier ever since.

And what I’ve become aware of even more today is something so enlightening and positive.

I’M OK.

I, Nahleen Virginia Blake (yes that’s my Middle Name), am OK. Oh my goodness! I’m OK. If you had told me that night of my first MRI that over 10 years from that whole experience I’d say I was OK I’d have pushed you away. I’d have ignored you. I wouldn’t have believed you. I probably would’ve gotten sick to my stomach.

No Way! I was so terrified about my life, about my future, about my body and everything that I had no control over. I “HAD CONTROL” of my life back then…I thought. I was on my path. Full speed ahead! Get out of my way. I’m following my dream. Actually…I’m chasing my dream. It can’t get away. My grip is so tight and I won’t let go. Keep on going and going and going and going. Well, guess what Energizer Bunny? You can’t keep going either no matter what those commercials say. Sorry but you run out of Oomph too!

Throughout these 10 plus years since I have been told by so many people older than me that I am too young to think the way I do. That I am too young to go through what I’ve gone through. That I should be going through all of this illness and crap when I’m older. Well, let me tell you all, I HAVE NO CONTROL AND I NEVER HAVE. I was powerless over what was happening in my body and my mind was bound to change. My life was bound to change! My outlook was bound to change! Change change change! Life is about change!

How could all of that not change?

I couldn’t work 2 jobs anymore. That was crazy to start with. I couldn’t be a Production Assistant for 12 hour days on my precious weekends anymore.  I couldn’t couldn’t with the couldn’ts. Suddenly my life came to a halt.

SORT OF.

I had to rest more.

I’M SORRY. DID I SAY REST?

What is REST? Well, that means I STOP all I’m doing to the best of my ability and sit my butt down. I can lay down on the bed. I get some quiet. I learn how to meditate. If I can’t stop I at least SLOW DOWN. Yes, slower is OK. Really. There are so many ways to rest. Forcing everything to a point of a racing heart is NOT RESTING. Nope. Everything in Fast Forward is not resting.

Actually, my life is usually better than OK but I didn’t know that until 8 years later when I was diagnosed with a second disease of lupus. A…SECOND…DISEASE……..OF…LUPUS….Now THAT ONE KICKED ME OFF MY FEET AND STRAIGHT ONTO MY BUTT and there was no getting up.

No question.

I hit a wall so hard it’s a wonder I even survived and I am NOT EXAGGERATING.

And my choices were simple yet so complicated for someone like me to understand. You see, simple is not simple. It can’t just be that pretty much everything in my life has to STOP AND SLOW DOWN and not just a few things here and there. This affected EVERYTHING.

I HAD TO CHANGE.

MY LIFE HAD TO CHANGE AND FAST.

I FELT I HAD NO CHOICE.

See, I used to say I had no choice. I had to stop working…for now…until further notice…maybe…no really…I still wasn’t feeling up to it months later…symptoms just kept kicking my butt…I needed Tender Loving Care from everyone but especially from ME. I could’ve gone back to work. Right. OK. And run around and been in an environment that was so toxic for me that I would’ve ended up in the hospital the next time. Sounds like a great quality of life.

It was ME. I had to change MY LIFE.

I had to take care of ME.

Why was that so hard? Why IS that so hard?

I know it’s worth it. I know I’m worth it. And it’s a work in progress…It really is about Quality of Life, not Quantity.

But when I focus on TLC and turning the attention of my TLC to me my life gets better. My life looks different, feels different, and even smells different. There are flowers to smell and see everywhere here in LA. There are trees with leaves that blow in the breeze. That is one of the most lovely sounds I have ever heard. There are clouds. Oh I have always loved clouds ever since I was a little kid. Give me a cloud to look at and I am thrilled. Everything else goes away. There is an ocean that keeps me Present when I can see it. Even driving by it changes my mood if I can see it. I am in the moment. Do you know how beautiful the moment is? Have you been able to feel your breath as you look at the vastness and the colors of the ocean as the sky and the light of the sun reflect on the ocean? Have you watched a seagull float along in the sea breeze? Even watching other people in the water puts a smile on my face.

Smiling. I do that so much more than I used to. I used to be told all the time to smile when I was in my 20s before the MS diagnosis. I had no idea I wasn’t smiling. I was so dang busy pushing and pulling and forcing and going that I forgot to smile. I had a frown on my face I was so intense. It’s a wonder I had any friends, family, work colleagues or anyone else who wanted to be in my life.

But somewhere along the way I forgot me. I still do sometimes and I am constantly working on bringing ME back.

And bringing my focus back to me, I see the shining emerald green glimpse of hummingbird. I see the butterfly off in the distance. I find myself sitting in my car listening to my favorite song and not getting out until I’ve finished belting it out to myself. And back to smiling because I find it so powerful. Smiling at others? Smiling at others and watching them smile back. It is so rare now for me not to connect with others with a smile. I have met some of the best people in the grocery store. We are all just people living our lives trying to get by. I have had lovely conversations in hospital building elevators with others about colors and clothing and my Muppet bag/purse.

I have sat next to some wonderful people while sitting in doctor waiting rooms. See doctor waiting rooms are tricky for me. I still can’t stand going to the doctor. In fact, I think in some ways it’s worse now because I have so much chronic illness doctor’s office visit fatigue if that makes any sense. I am sooooo done seeing so many doctors even though the appointments are currently usually further apart. Usually. But those waiting rooms can be so grueling and talking to others helps. If I don’t I feel closed off and not grounded. I find myself more nervous about the appointment than I was before. I find myself noticing that so many people are not feeling well, that they’re older and looking at me wondering why I’m there at whatever Specialist Doctor I happen to be at. It’s rough.

I have gotten to know the office staff at almost every doctor. I now have at least 2 friends at the Pharmacy I go to and I’ve had coffee with one of them. They are people too. Great gals actually. I have learned that it’s really not a problem usually to stand in line at a store. Why not look around? Why not watch a little girl or boy with their Mom and see what they see as they look around? Getting annoyed and irritated is probably going to make me feel worse. Life does not have to be lived so fast.

And what about finding myself through writing? I think I’ve always been a writer. I have written off and on all my life. This Blog has helped me get through what was a huge writer’s block for too many years. I need to write. It is part of my Being. Even if I write the hardest and deepest thoughts and words I still come out of it smiling. I wrote! I expressed myself!

And then there’s meditation, guided imagery, spiritual support groups, coffee groups, texts with friends, Facebook, Twitter, the online community in general, the longer conversations I get to have with people on the phone if I feel up to it (this one is still hard for me because being social is one of my favorite things but it also tires me out very quickly and as I get better I am more able to talk and maybe even visit but it’s still a one day at a time thing), the exploring of neighborhoods as I walk every day (by the way it’s been over 450 days since I started taking a walk every day!) I never know where I’ll end up. I have found the greatest local businesses that way. Some of the best coffee shops are in Santa Monica. I wouldn’t have known that before.

And sitting on my balcony especially at night is one of my favoritest things to do ever. I sit back in my lounge chair and look at the sky, look at my iPad (feel so fortunate and lucky to have such a supportive husband who bought me an iPad even before my lupus diagnosis and it has changed my life–the online world is a much more accessible place because sitting at the computer with the big screen can be hard for me for so many reasons), talk to my plants, and I can even have plants that I love and adore! And let me tell you, they respond so much better when I talk to them and give them love.

I have found faith and hope during these slower times. During these quiet times it has not all been fabulous. As they say every rose has its thorns and that is so true. There is beauty in life everywhere. There is also struggling, and excruciating feelings, and trudging, and crying, and anger, and memories, and reliving traumas, and temper tantrums, and grieving, and missing the old days when I thought my life was something else, and when I was younger before my MS diagnosis, and wanting to punch things and having very very hard times and hard days. I find I’m also having an identity crisis. Who am I? Who is Nahleen with MS and lupus? Will I ever work again? What will I do? Which idea am I going to pursue? Where is my life leading? Is this my life? I can’t live my life as someone who is identified only as my illnesses but it is a major challenge to break away from that when my life is lived in doctor’s offices talking about everything that’s still wrong with me, even talking about those few things that are getting better is still on the subject, just being there reminds me too much about my reality, having to prove my Disability to other entities who are trying to not help me, dealing with insurance issues, reliving the past for new doctors, taking over 4 hours to get going before I feel human in the morning, taking my medications, keeping up with my medications, keeping track of symptoms and the severity of them and watching for patterns, exercising so I can keep functioning and I could go on. Please let my life be more than that.

BUT YOU KNOW WHAT?

I’M OK.

I’m better than I was 10 years ago even before my MS diagnosis. I see the world in front of me more. I see the world. I am in the world. I am not on the outside looking in. I am NOT living the life I want to live on a whole just yet but isn’t that normal? I want to live a life WITHOUT MS and lupus but that is a lot to ask right now and to be honest it pisses me off and I can feel the rage right now even as I write this. But right now I’m in a better wave. I don’t know how long it will last or if it’s the new norm. Life is always happening and it is always in session. I have learned that time and time again. And I don’t know how I’m going to feel the next moment from when I write this sentence but for now I’ll take the feeling that life is a bit easier. How cool is that? I’m a bit more at ease. What a gift.

But it is not a life to be rushed through. Time goes by too fast. I was a tied up ball of knots rushing around plowing my way to the next goal in my mid-20s thinking I would someday rule the world, but it was never good enough. And in the past few days, life is good enough. Sure, I want more money, I want a bigger place to live in, I want that dent out of my car that someone so nicely put in there at a time I wasn’t around to see it happen, I want to be thinner, I want to feel so good that I am frolicking and skipping down the street and I don’t ever want bad things or hard things ever to happen again.

But that’s not real.

And I’M OK.

And the best part is there are parts of my life that are so very happy. I am happy with my husband and my Cleo Kitty. Corey keeps me laughing and on my toes. He is so incredibly supportive and always by my side. We are the best team I know. Cleo Kitty and I are best friends. We have been there for each other during each of our health problems for the past 3 years. She cuddles and plays and needs to eat and she demands her pets.

I also have a roof over my head, wonderful people in my life who don’t let me isolate even for one minute and they are from all parts of my life, 2 cars that run well, air conditioning that usually works, clothes to wear, food to eat, a bed to sleep on even if the mattress is so old there are hills and valleys in it and the list is endless.

I have a full life. A pretty darn good life. It can be very hard. And sometimes it can be easy but those times seem rare. Perhaps that will change. I don’t know. What I do know is that I breathe easier. I’m not nearly as tense. I feel much better than I did last year in July 2012 (and it doesn’t mean I am all better but I will take whatever I can get), I smile and giggle more than I frown and grumble. My bad days aren’t nearly as bad and intense and I recover quicker. And this is all just for today.

That is all I have. That is all WE have.

And that is OK.

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Telling the Truth is Really Hard

TRUTH: The past 24 hours have SUCKED mostly physically but mentally too!  There I said it!

I TOLD THE TRUTH!

DETOX IS HARD!

ANOTHER TRUTH!

Being on an emotional roller coaster yesterday for HOURS was REALLY HARD!

MORE TRUTH!

Feeling A LOT OF PAIN, FATIGUE WITH HEAVY LIMBS, SHAKINESS, LIGHT-HEADEDNESS, WEAKNESS, TINGLING, WAKING UP IN THE MIDDLE OF THE NIGHT WITH A HORRIBLE KNIFING PAIN ON MY RIGHT SIDE (making me freak out it’s my appendix or something crazy) AND HAVING TO RUSH TO THE BATHROOM (TMI–just getting you ready) ONLY TO HAVE MY BELLY MAKE THE LOUDEST RUMBLING NOISES AND THEN ACTUALLY HAVING THAT TRIP TO THE BATHROOM BE PRODUCTIVE (used to not be in the middle of the night and I would suffer for hours so that’s something) AND THEN HAVE THAT PAIN GO AWAY BUT FEEL THE DIGESTIVE AFTERMATH IS REALLY HARD!  BUT–THANK GOODNESS THAT KNIFING PAIN WENT AWAY AND HAS NOT COME BACK.

YES I’M YELLING!

PHEW!

It feels so good to get it out.

I have only had 2 Chiropractic treatments in the past week, BUT I have also added an Alkaline Water Detox prescribed by this Chriropractic Doctor added to my treatment so it has been extra potent.  I CLEARLY have a ton of acid in my body.

IT HAS BEEN 1 WEEK AND MY BUTT FEELS KICKED FROM 2 CHIROPRACTIC TREATMENTS?!

OY!

You know, I have heard over the years from all kinds of people on social media and elsewhere talk about all the “GOOD” effects of Detox of the body.  NOT ONE OF THEM THAT I’VE NOTICED HAS EVER TALKED ABOUT ANYTHING NEGATIVE.  Did they ever feel anything crappy going on in their bodies or was it just absolutely divine and magical with birds chirping with light breezes as they frolicked over the rolling green hills singing songs from the “Sound of Music”?  That’s what it’s always felt like to me.  So I have no idea if these people have EVER felt crappy.

Is it because they don’t want to tell the truth because Gawd forbid they look weak?  Is it because they really are feeling JUST PEACHY (although if you ask me I’d never say I was Peachy because I CAN’T STAND PEACHES so it would be the opposite for me if I said I was PEACHY.  In fact let’s all make that note now.  PEACHY for me is CRAPPY.  OK then.  Now that we’re all clear.  Back to my ranting…) KEEN?  Did I even spell that word right?  The point is, AM I THE ONLY ONE WHO HAS FELT CRAPPY FROM DETOX?  AM I THE ONLY ONE WHO IS NOW TELLING THE TRUTH?

MORE ON MY TRUTH:  Okay.  So for the past 24 hours I have wondered what wall I hit this time.  In some ways I haven’t felt like this in a long time.  Felt like someone kicked my butt and the rest of my body really hard.  What’s interesting is that the first 24 hours after treatment were actually QUITE GOOD.  I think I was on a mental high and my body was TRYING to follow along.  I felt so much mental clarity and relief and life almost felt like it was ALL good no matter what.  I almost wanted to skip down the street singing “La la la” but my legs weren’t QUITE up to it.  Oh and just to be clear, I didn’t feel up to frolicking through the rolling green hills singing songs from the Sound of Music.  I wasn’t THAT good.  That’s good right?

Anyway, I did so much in that 24 hours because I thought, WOW, I can do this.  This Chiropractic treatment stuff rocks.  It was ONLY the 1st Treatment that would be really hard at first.  Perhaps I’ll be feeling this later but not now.  LIFE IS GOOD.  I got home, made some medical business calls, wrote a Blog post, did stuff and things and I DID let myself REST a bit BUT THEN off I was running out to get groceries that evening while my mental hyperactivity was still on overload (I think now that I look back).  I mean, we NEEDED groceries and my head told me it was RIGHT then no matter what.  So I left at 6:30pm and by 7:30pm as I was almost done my ARMS started telling me they were really tired and didn’t want to work much more and then they were in pain.  Then by 8pm my BODY was done.  By 9pm my MIND was done.  And yet there was still some clarity so I stayed up way too late.  I CONFESS.  I didn’t LISTEN enough to my body at that point.

Got up for a dang Fasting Appointment the next morning to have blood work done with a doctor I have VERY mixed feelings about and thought all was going to be OK.  I was still OK.  Sure I was tired but Fasting Appointments are really hard for me.  My body with its MS, lupus, IBS and you NAME IT needs its routine.  No food means no medications.  No medications means my body is already unhappy.  No food yet already being active when on a normal day it usually takes me over 4 hours to really feel like I can go on with my day as a human being is not a good thing for me.  At least let me have some food.  PLEASE.  If my body lets me that is…

ANYWAY, after the appointment, I ate and I felt a bit more invigorated YET to be honest my body was starting to protest more.  And then I ran around doing too many errands at once when I should’ve just gone back home to at least get some more rest before doing them made my body VERY UNHAPPY before 12pm.  The appointment had been at 8:30am.

BY 12PM I had HIT A WALL.

ALL DONE.  Had to push to do the basics.  The emotional roller coaster (was told this would happen even more and be magnified according to my Chiropractor as the emotions are cleared out and released from my body and it was ALL part of the healing process) started for the next 5 hours at least, my body had a hard time letting me do the basics like get up and move around.  It was shaky and weak and in pain.  SOOOO DONE WITH ME.

So I rested.  AND RESTED SOME MORE.  Resting helps.

RESTING HELPS.

Phew.  Sometimes resting doesn’t ALWAYS help the way I want it to.  My body has been recovering ever since.  I’d get waves of physical symptoms into the night last night and then there was that time in the middle of the night of complete and utter pain and discomfort and I’ve been working through that ever since.

SO GLAD I CAN WRITE THIS.

Yesterday I wouldn’t have been able to write this in any way.  ALL OF ME WAS DONE.

DONE.

But this Blog post has been bubbling up to the surface ever since I FINALLY was able to really get up out of bed today.  EXTRA SLEEP HELPED TOO.  I HAD TO WRITE THIS TODAY.  I HAD TO EXPRESS MYSELF.  I know it is all part of the healing.  I call it EMOTIONAL HAIRBALLS.

Meanwhile at the same time, as I think about how my body is overall, I know it’s not a regular lupus/multiple sclerosis flare.  I know my body is flaring up because all kinds of healing trauma (WHAT?  HEALING TRAUMA?  Parts of me want to object to what I just wrote and argue with me.) because it feels cleansing.  It feels like all kinds of toxin crapola is being FORCED out.  My mind is clearer.  My body is clearer.  So strange to say that and feel it and NOT REALLY BE ABLE TO DESCRIBE IT.

So the FEAR comes up.  Is this Treatment too much for me?  How will I do this?  I DON’T WANT TO MAKE MY BODY WORSE.  I CAN’T MAKE MY BODY WORSE.  I DEAL WITH ENOUGH.  IT’S HARD ENOUGH.  But then the nurturing side of me comes in and gently reminds me that I am feeling better at the same time.  I’m going to NEED TO BE VERY UPFRONT with the Chiropractor tomorrow at my next treatment and tell him EVERYTHING that has gone on in the past 24 hours BEFORE he jumps right in and manipulates my body into its relieving craziness of the next treatment.  He had told me it would be hard especially at first and to try to trust and be honest with him and myself in all ways at all times about how I’m doing.  That we would adjust treatments accordingly.  He also told me I’d have to rest more.

That’s hard to do.  I’m TRYING to have a life and I have SO MUCH going on right now.  FINDING BALANCE is a whole other issue I’m dealing with.

WHERE DOES IT ALL FIT IN?

Well what I have to remind myself is that it all fits in the way it is supposed to fit in.  It will all work out and it will happen or not happen BUT the world still turns.  It doesn’t explode because “MY PLANS” didn’t work out the way I liked.

DO THEY EVER?

SO WHY DO I KEEP TRYING TO FORCE MY PLANS OVER MY LIFE?  It doesn’t work that way.

So for now I’ll go back to resting and doing THE BEST I CAN WITH WHAT I HAVE.  It feels really good to have communicated this today.  Thank you ALL for reading.  It means so much to be able to get it out and STOP HOLDING ONTO IT.  Something tells me this may not have come out if it wasn’t for this detox and new treatment journey I’m starting.

I feel much better and calmer right now and I will enjoy it while I can.

Take care all and please if you can, be gentle with yourself and your body.  Healing can be really hard but what I’m discovering is that I’m worth it and so are you.

 

 

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STUPID UNPREDICTABILITY!

I CAN’T STRESS THIS ENOUGH! THE UNPREDICTABILITY OF MY IBS, LUPUS AND MS IS THE WORST THING EVER TO DEAL WITH WHEN IT COMES TO DEALING WITH CHRONIC DISEASES!

I know I was busy today. I know I was doing a lot of physical things. I know I can feel the weather coming (rain) on Friday. I know that I have IBS. I know that I have lupus. I know that I have MS. I know that I need to take care of myself. I know that the diseases are their own entities. I know they can act up whenever they want. I know I probably (notice my denial) pushed it today. I know that my diseases can flare up randomly.

I KNOW I KNOW I KNOW!!!!

BUT I DON’T KNOW…

!@#$%^&*(@ IT! (Insert swear word of choice here to express the feelings). No words can really fit for me to really express the frustration when it comes up.

There I was going along my merry way and then all the sudden my IBS just went BOOM in my digestive system and I started having stomach cramps OUT OF NOWHERE. WHAT THE?! I haven’t had stomach cramps in quite awhile thank you very much. I don’t want them right now. It’s actually been VERY NICE without them.

Sooooo, even though I’m almost done with stuff for today, I have to be done even sooner because MY BODY HAS DECIDED IT’S DONE.

…………………………..gggrrrr

So deep breaths I will take to calm down. Getting too worked up will set the stomach cramping on fire…

Time to rest and destress if possible…hopefully that helps.

It’s so UNPREDICTABLE it’s crazy. I haven’t been having a lot of stomach problems lately…I’ve been trying not to remark about it on purpose. But the IBS is still there. Yep. Hasn’t left. Go figure.

So now I do feel a bit better because I vented and wrote about it. Gotta calm down and destress and give in to my body. It wants love.

FINE! FINE! FINE! FINE! FINE!

Please let me eat tonight belly. Please…eating only toast is boring and doesn’t help fill me up…

PLEASE…

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It’s So Hard to Have Multiple Sclerosis and Lupus and…Part 3

…and BE ME…

…and HAVE LIMITS…

I mean, let’s face it.  I’m a hard person to be.  I have goals.  I have ambitions.  I am a Go-Getter.  I am a Type A Personality by Instinct. The first idea in my head is GOGOGOGOGOGOGOGOGO!!!!

There’s no room for LIMITS…

Hmmmmmmm……

Welllll……

That’s really hard to deal with when I have multiple sclerosis and lupus.  I’m not even mentioning the digestive symptoms and syndromes, food allergies, environmental allergies, any infections that I might be fighting off, the fun womanly once a month irritations, sinus symptoms and issues, my crazy GOGOGOGOGOGOGO head, or even headaches that might come and go here and there.  I mean really.  I don’t get a chance to GOGOGOGOGOGO.  And if I do by chance get back into that habit, I am in TROUBLE and back on my butt FEELING AWFUL FOR SOME REASON…

UGH…

Sure that’s probably a really good thing.  Actually, it’s a blessing that I am grateful for quite often.  I’m grateful that I have to take it slower and actually see my life go by.  I don’t get a chance to be sprint through it.  I get an opportunity to get to know myself (scary sometimes yet really nice to do), to get to know others out there in the world who are cashiers and other customers for example, to smell the flowers, to really take care of my plants, to love on my dearest Cleo Kitty, to sit and just BE (so hard sometimes), to take my time, to look at the sky, to watch the world, to take a few extra breaths and maybe even DEEP BREATHS here and there…

BUT I WANT THE CHOICE to GOOOGOOOOGOOOO…or Do I?

I really have no idea.

I just don’t like having multiple sclerosis and lupus.  That’s just it.  I can’t stand them.  I want them to go away.  If I’m not careful I get sucked into a black hole of “Why me?” and “What did I do to deserve this?” and “Why won’t they just leave me alone?” and the list goes on and on…I think I could go on forever in what I call “WHOAISMS” and sometimes I believe I’m allowed to do that.  But I hope I have something to pull me out and I usually do.

So then I need to really work on spirituality whatever that means to me that day.  I could be meditating.  I could be actually letting myself sleep if my body and schedule allows.  I could be looking at the flowers.  I could be beating on my Bongos.  LOVE THAT by the way!  Seriously, if you have anger, I suggest you find something to beat on as long as it’s not yourself, or another living being, or something you’re going to damage—hmm….maybe I shouldn’t have mentioned to find just anything to beat on.  For a long time I’ve used the Hulk Hands that are out in toy stores that Corey has bought me (the first pair really was the best) that actually had Hulk’s voice and yelled, “Hulk Smash!” and would growl so when I put them on I got to laugh and feel big and strong and punch the wall.  I don’t recommend punching a wall without that kind of cushion.  PLEASE BE CAREFUL WHATEVER YOU DO.

But then now I have these Bongos and that’s great but I can’t just jump in and do a long set of banging.  I have to pace myself and only do it a few minutes at a time and build up to longer because then my hands and arms hurt.  Well, that’s just great.

So that’s what I mean, I’m always putting limits on myself and what I can do but in TRUTH: THERE REALLY ACTUALLY ARE LIMITS.  I’d like to continue to be able to use my hands and arms which are the most affected by both my lupus and MS and I’d also like to not feel the pain and throbbing from having overused them…on the bongos that I just enjoyed banging on to help me relax and calm down…

Then there’s the exercise.  Exercise is great to keep me flexible and stable.  Yay.  Go me.  Notice I’m not too excited about it.  Some days it feels like real work and like my body is complaining the ENTIRE TIME.  Then other days my body is thrilled and wants to be stretched and moved even more.  But again, there are actual limits if I want to keep functioning.  It is cumulative.  However, WALKING HAS BECOME MY THING.  I am well on my way to having walked 300 days in a row by the end of February.  AND THERE IS A LIMIT TO THAT.  I need to NOT JUDGE myself about walking and what I did that day.  I need to not push myself to walk an hour every day.  I need to be willing to only even walk a few minutes if that’s all I can do.  The TRUE BENEFIT comes out of keeping my legs and body moving and honestly, it’s helped my mind immensely too.  I have so much more confidence now than I used to in general just because of walking but they have truly loosened up and become more stable, strong and can endure more.  They DON’T complain that often anymore.  And by now it’s become such a habit to take a walk that I can’t imagine my life without it.

But then there’s trying to have a life.  I know.  Crazy.

A LIFE.

You know, that life where I can socialize with people, maybe even have some real friends out here in LA, maybe even keep in touch with the friends and family at a distance, spend more time with my husband, get out into the world and do things besides grocery shopping (although that is important too), and doctor appointments, and medical tests and be on the phone with something regarding Disability, Medical Insurance, following up with doctors, finding an attorney for a legal issue, filling out paperwork and the list goes on.  And what about being creative?  I yearn to be creative but I can’t do too much OR I have to slow down and my body asks for it.  But when will that happen?

WHEN AM I DOING TOO MUCH?  WHEN IS IT WORTH IT TO PUSH IT?  WHERE IS THE LINE?

There is no pattern or predictability.

Again, the worst part about these diseases is the UNPREDICTABILITY.

For goodness sakes, if only they were PREDICTABLE.  What a different world it would be.  I might be able to make plans and keep them.  I might be able to sign up to take regular hobby classes or regular ANYTHINGS.

I mean, let’s not forget it takes me at least 4 hours to get ready in the morning if I’ve included waking up, stretching my body in bed to get it moving again (tends to get stuck and stiff from sleeping if I’ve slept that is), do more stretches to stand up, follow a spiritual way of life (numerous ways to do that and I try to be creative with that), probably go to the bathroom (I know TMI), take a few pills, feed and be with my Cleo Kitty who has health issues of her own and is desperate to eat by 7am or ELSE, try to wake up a bit more before eating and taking more meds, plan out my day, get stuff ready to go if I have a medical appointment and I usually have at least one a week (the next 3 weeks I have 2 each week–goody gumdrops for me), pull myself together meaning exercise to the best of my ability to wake up my body, take a shower which is an event in itself and can take a lot out of me, not to mention brushing my teeth (an electric toothbrush is best so I can save my hands and arms and their energy), get dressed, try to make my hair look presentable (thank goodness for purple short hair so it’s already kinda cool and easy), pet and love my Cleo Kitty who always needs extra love and well so do I, make sure I wear my hat to protect from the sun, wear my sun protective jacket or at least a shirt with longer sleeves, get Cleo ready for me to be gone, make some sort of business calls if I have the chance, try to sit and rest here and there because it’s a lot to ask my body since so much activity has already happened, try to maybe wash the dishes or at least some of them, sort through any weird symptoms I’m having and do my best to take care of them, and the list can still go on.

THAT’S JUST THE MORNING EVENTS…no matter what even if I’m feeling crazy fatigue–I may go back to bed but what if I can’t because I have an appointment?  I’ve gotta get through it.  I’m so exhausted from thinking about my morning and writing about it that I haven’t even written the next parts of the day where I have to keep myself in check and have all my meds sorted out to take and make sure I take them on time and have meals at good times or I end up feeling worse.

And there’s always laundry to be done.  Can I do it today?  Should it wait?  What if we need underwear?  (Hey, I’m being honest).  And what about groceries?  What about the “What abouts”?

What’s the real priority?  There’s always some sort of life that needs to get done and if I let it go it’s still there tomorrow and I have to try to be ok with not getting it done YET.  I’ll admit, that is one of my biggest struggles.  LETTING SOMETHING GO UNTIL TOMORROW…OR ANOTHER DAY…OR ANOTHER DAY…

YET SOME THINGS CAN’T WAIT…

I’VE LEARNED TO LET GO OF A LOT BUT THAT DOES NOT MEAN I’M OK WITH IT.

So life just keeps on happening.  I keep having multiple sclerosis and lupus along with all the other syndromes and issues and the world keeps spinning.  Thank goodness for choices but it’s still so hard sometimes.  I really have eased up on so much in my life and with my expectations but it takes a strict way of thinking that I really can’t get lazy with too much (sometimes it’s a wonderful thing but I can’t let go of it too long or I lose myself again and may go back to pushing too hard)…

SO I GUESS I’M STILL LEARNING…

THESE CHRONIC ILLNESSES I TELL YA…

There is just so much I can say about them and so much I don’t have the words or energy to talk about.

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2 YEARS AND 2 DAYS!

I have survived 2 years and 2 days with a lupus diagnosis!

Go me!

2 years ago when I was diagnosed, I felt symptoms that had to have been traumatically horrible and unfathomable because I have blocked out those physical sensations. When I look back on those 1st few days with a new label of a lupus diagnosis, I can’t really remember how I felt physically–not really.<em. I just know it was horrible because of how I felt mentally. I know the basic symptoms I had BUT there's a block there and that's OK with me. I'd rather not relive those awful symptoms and to that intensity EVER again. Sure I still feel most of those symptoms and perhaps some more but with changing my outlook about ME, treatment, proactive doctors, and people like you it's less intense.

As hard as it has been to have multiple sclerosis and then to add on lupus, I am truly grateful for my path of recovery. I have trudged and I have struggled and I am losing it these days due to the intense sunshine and heat, BUT my path is crowded and yet more peaceful. It is crowded with so many people who have been there with me and for me through all of it. Words can't describe how touched I am that I am NOT going through this ALONE. It is so easy to isolate with chronic illness AND YET you never let me–even when I might want to.

I often feel overwhelmed by all of the hard work it takes to handle medical business (insurance, bills, doctors, medications…), self care (rest, exercise, healthy eating, meditation, having fun, having a life, socializing, living for me…), a life that is currently on Disability (thank goodness for it but it drives me absolutely crazy–I highly recommend it if you need it BUT I will not sugarcoat it: IT IS A HARD BATTLE TO FIGHT–yet totally worth it), etc.

AND…

I also often feel wonderfully (please don't stop) overwhelmed by all of the love, support, encouragement, positivity, relationships and connecting, the hugs, the smiles, the prayers, the gifts, the willingness to be there for me for what I need. Tears are running down my face right now as I write this because I KNOW you are all here with me. I'm learning to accept it too. That can be hard. I can't do this on my own and it is so hard to ask for help BUT it has all been truly a gift. And to stop and smell the roses and look at the sky are truly wondrous to me. Heck even my PURPLE HAIR has helped me free myself! I DIDN'T HAVE ENOUGH TIME FOR THAT before. I wish I had MADE the time.

And so I leave you with this:

THANK YOU FOR BEING YOU BECAUSE YOU HELP ME BE ME!!

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Detachable Limbs

I woke up this morning with heavy limbs and achy joints. Not a fun combination.

Wouldn’t it be so cool to have detachable limbs? I’m not talking about the prosthetic limbs although those are totally awesome! Thank goodness for those. But what if we had bodies with limbs that were able to detach? We really could be the only ones who could detach our own limbs as needed. The idea would be to let these limbs rest themselves and get rejuvenated.

That’s what I wanted this morning. I have found myself fantasizing about these things because I have learned over the years that I need to love my body no matter what is happening and not hate it for not being “perfect”. This is the body I have. That means I can’t run away from my body, be mean to it and beat it up for not feeling well. It’s just trying to be a body.

So what else could be done to help it? Well, the detachable limb idea comes to mind. I really wanted to be able to detach my arms and legs and put them aside to rest and recover for the day, this morning. Sure I’d be just a torso and that sounds creepy but the idea would also be that my torso would be incredibly capable on its own (okay, now I’m kinda freaking myself out with this idea) OR how about having prosthetic limbs for even these specific times when the actual human limbs really just need some down time?

So on that note, I’m glad I could write something tonight. I did rest my whole body today (having to cancel a date with a friend–dang it) and it did help. If it didn’t help then I wouldn’t be able to type this so easily.

Which then reminds me that I really need to learn the audio to text software a good friend (who is one of my followers–so sorry to reveal this to you right now) was so gracious to send me. BUT anyway, sounds like a project to do this weekend. Soon for sure. Then again, I also need to rest my mind when my body isn’t feeling well because if my mind is tired my body usually is too. So it was probably best I didn’t write a blog in any way today until this evening.

ANYWAY, about those Detachable Limbs…sure would be nice to have them. But since I don’t I will have to deal and rest my whole body when it asks me to. I am getting better at that.

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OK OK

I woke up this morning and my body was begging me for REST!! OK OK. I get it. For now anyway. I’ll do my best to rest today.

I’m also gonna follow these unwritten prescriptions (although if they were in writing I might take them more seriously) that both specialists have given me in the past week.

1. Don’t be so hard on myself. I have MS and lupus. That is enough. That is MORE than enough.

2. Get more rest.

3. HAVE MORE FUN!!!

Alright. I’ll do my best. These really are the three main things I need to work on and I’m really pleased that my doctors picked up on that.

MORE FUN?! What’s that? I think I’m learning slowly…

And so, that’s what I’m doing today. Just wanted to pop in and say hello and put these 3 things in writing.

I guess they’re important…

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When You Can’t Nap…

–snuggle with a kitty!

Yeah that’s right. I woke up early to feed Cleo Kitty this morning and was going to go back to bed to try to get some more sleep, but when I tried I didn’t want to and was quite awake. So I got up. VERY unusual these days. I figured if I got tired I’d take a nap later in the day.

Well that nap isn’t happening BUT snuggling with a sweet and cute Cleo Kitty is! She saw me get in bed and took full advantage. And so am I. At least I’m getting some rest right?

Keeping this post short and sweet because I’m still recovering from yesterday’s post.

Sooo, back to snuggling I go! She’s so cute!

(And she snores too!)

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Focus: REST!

Hi!  I’m back from my Rest-cation!  Hope you all had a good and restful week too!

I am so glad I took the time to rest last week.  Why is that so hard?  I mean, really.  Rest.  After trying to practice it even more these days, the word still seems unfamiliar to me–almost foreign.

I have been known to share with others that I feel “Rest is Productive”.  Do I really believe it?  Yeah, I guess somewhere in a little nook of my brain I’m starting to accept that.  Why?  Because after 2 years of being forced to do more of this strange concept called “Rest” (not to mention the other 8 years of supposedly “resting” my body with an MS diagnosis) I have found that I actually feel better when I do so.  Before my lupus diagnosis 2 years ago, I found that rest was only something I did because I had to and because it “kept me going” like the Energizer Bunny.  I don’t really know that it helped that much to be honest with you.  My head wasn’t in it.  That’s for sure.  Now I find that it actually helps me function better and get on with my day.

BUT I still only really REST when I have been kicked back on my butt.  So there I was last week on my Rest-cation thinking I’m totally getting this Rest thing down.  I mean, if you asked me before Thursday, I was SO RESTING.  Right?  Well, sort of but not fully committed to it.  Then on Thursday after I felt I had rested at home enough and wanted to get out and do things that might be restful for my mind, my body decided it really needed more REST–it was feeling AWFUL with terrible fatigue and pretty weak–and I had to LITERALLY get on my butt on the couch with my feet up and REST.  I mean, really.  Hadn’t I already been doing that?  I guess not as much as I should’ve been.

So I did just that.  I RESTED.  I didn’t have much choice.  I didn’t want to feel any worse.  I learned a valuable lesson too.  That lesson included an actual realization that even RESTING can cause symptoms in my body and that it isn’t all MY FAULT.  I didn’t do ANYTHING to make me feel worse.  It JUST HAPPENED.

That is huge.  Pretty much everyone I’ve talked to about my health has told me before that none of this is my fault and I have no real control over whether I feel better or worse and that sometimes these things really are RANDOM.  Go figure.  RANDOM.  I have 2 diseases.  They are going to act up whether I want them to or not.

I CAN ONLY DO WHAT I CAN TO MAKE SURE I DON’T EXACERBATE THEM FURTHER.

I CAN CHOOSE TO REST.

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