Moods

Late Nights…

Most people do not know that I struggle with fibromyalgia. Chronic deliberating pain that often makes it impossible for me to complete simple things….like combing my hair and buttoning a shirt.

I received the diagnosis of Fibro and borderline Lupus in the military after being in for 16 years.  Just like many others, I thought my persistent pains and aches were just a part of the toll of running, numerous deployments and working in difficult enviroments. After 2 days of intense all over pain, my doctor informed me that my body was undergoing a major change. There was no cure and that my symptoms would get  worse as I got older.   I begin to realize that “late nights” would take on a different meaning for me.

My love/hate relationship  with my body began shortly after that. “I will fight this!” I vowed. I didn’t realize how hard the battle would be. After retirement, I continue to exercise and eat right. My body fought back…with a vengeance. Reminding me that no matter how hard I tried, It would always be ahead of me in the race. Always one lap ahead of me…the only thing I could do is try to catch up.  To keep running!

My laps are never easy. My body gives me signs and symptoms when a pain flare is about to occur. My body warns me of impeding rain, I plan accordingly. It tells me when I have been on the go too many days in a row, I take a day of rest.  It warns me when I am stressed, I plan a solace …

I bargain with my body daily. Some days I win, and some days I lose….never graciously. My defeats  come with intense stiffness, excruciating pain, sleepless nights, light sensitivity, pain and memory issues  Some flares last for a couple of hours to several days. My pain is worse at night, when I am alone and the world is fast asleep.  Late nights curled up in a ball under a heated blanket filled with insomnia and pain. Some nights  I have often sat outside watching the stars….praying….waiting on the sun.

When I wake up, I feel like a new person….literally I am.

My ability to push through my pain daily keeps others wondering.  I look great on the outside, but  Im constantly trying to keep up. My high pain tolerance level allows me to operate normally on a pain level that many would have to seek medical attention for.

My trips to the ER  come every 4 to 6 months. The nights when I can no longer find a home remedy to bring my pain level down. Over the counter meds, epson salt baths, yoga , exercise and meditation lose their strength.  I become immune to regular pain relievers . Even prescribed narcotics cease to dull my pain.  I sit for endless hours in an ER to receive a shot that lulls me into a peaceful state.

It is during this time, I often mentally battle with my ability to continue on this journey. It is during this time I understand how many people with chronic pain have opted for the presumed “easier way out.”

I’m grateful my spirituality  prevails and the morning brings a joy!  I count my blessings after late nights and I am truly thankful….thankful that Im not confined to a bed or a wheelchair. Thankful that I know that each  flare will pass….eventually.

Thankful to see the sun peek through, reminding me that I  made it through to another beautiful day.  Thankful that through it all, I’m still running…

If you are struggling with any pain, whether physical or mental.I pray  you find the strength to wait on the sunrise.

Peace, Love & Empowerment

Vo-GIRL-CRYING-facebook

on ups and downs

This is a re-blog about the migraine-sads, but I suspect the overlap with fibro-sads are infinite. Please read and share your strategies!

***

er… but mostly downs.

Image

[illustration by Emiliano Ponzi: http://www.emilianoponzi.com]

 

Every person has ups and downs. It’s a fact of life. Only Data doesn’t have to worry about these things, and he worries about not having to worry about these things.

Image

 

Chronic pain is just one of many unexpected twists that can make ups and downs so much more dramatic.

There’s some sort of chemical storm, which other migraineurs have described to me as acute depression, that comes (for me) with the onset of attacks and without any other external triggers (like, no pets have died, the world is still spinning, and I don’t have my period). But it’s still damn real! Add the acute depression to the long road of grieving for lost abilities, and you’ve got a recipe for the sads.

 

Image

It goes like this:

migraine attack –> low feelings (despite lollipops and sunshine) –> feeling low about inability to appreciate all the good stuff –> feeling low about how migraine has changed my life –> dwelling in loss –> more pain –> slow recovery –> repeat.

Essentially, it’s just so easy to get down on myself for being down in the first place. But despite sometimes feeling just as sad as that kitty looks, there are two handy shovels I’ve found for digging myself, at least part way, out of the pit of despair.

1) Other people with chronic pain.

They get it. All I have to do is talk to them to know I’m not nutso, that they feel it too, and sometimes that’s enough to stop the self-flagellation. Talking to these people in person is really best, but even a short internet message to share the sads can make a pretty big difference.

2) A bit of research.

It’s pretty well understood now in the medical community that chronic painers are more at risk for things like anxiety and depression, as demonstrated by studies like this, and this, and this, and this one. And perhaps not coincidentally, one of the first lines of defence in terms of daily preventative treatment is amitriptyline: an antidepressant.

It’s helpful to remind myself, as many times as it takes, that feeling low is not some sort of personal failure; it’s a part of life, and a BIG part of life with chronic pain, and sometimes this thought alone is enough to lighten the load.

What do you do, dear readers, when pain drags you down?

Brain Storm

(lousong.wordpress.com)

When Your Worst Is Really Your Best

I always seem to forget how truly amazing I can be. I’m sure you all do the same. It’s so easy to feel the pain and fatigue deep in your bones and lose sight of how strong you really are.

Today was a pretty typical day. Worked last night (pediatric respiratory therapist) and dragged butt all night long. Gave report this morning semi-coherent thanks to a ridiculous amount of caffeine. Had to stay over for an educational inservice on new equipment. Went home and fought to sleep, even though I was exhausted, due to my pain level and running brain. Finally fell asleep, hallelujah!

Got up and then immediately started mommy world. I had to get snacks, go to the potty with the kids, referee arguments, soothe stubbed toes and hurt feelings, teach the fine art of sharing, and work out a “what show will be watch” compromise. Thank god (and my in-laws!) for my Keurig! Even so, I had that bone-deep fatigue that gnaws at you.

Everyone started coming home/to visit/to spend the night and my house went from zoo to Grand Central Station noise level. I can’t handle that as well as I used to. With fibro, I get more overstimulated than a sugared-up three year old at DisneyWorld. My pain increased, fatigue increased, and irritation increased.

Add to that chaos cooking dinner, kid bath time, and the overtired kiddos becoming more and more whiny with each passing second. I was pretty much feeling the same way. Finally got the kids in bed despite much stalling! I was full scale finished. Everything aching, especially my traitor back, and feeling like I hadn’t slept in a week. Misery courtesy of fibro, CFS, a bad back, night shift, and motherhood!

I started to get annoyed at myself for not handling my day well. It wasn’t until my sister-in-law pointed out that I accomplished a whole lot more than I felt like I had. The night at work may have been very long and exhausting, but I accomplished quite a bit and had a full patient assignment. I just got a promotion and have been actually keeping up well! I also made it through report without dozing off mid-sentence. That definitely feels like winning. I picked my daughter up from the sitter across town after working 13 hours and didn’t feel so tired that I was essentially driving impaired. Can I get a woo hoo?

I got a short nap in and then functioned mostly like any other mom in the world would, despite my health issues. I got things accomplished, answered work emails, and snuggled with the tiny humans. Not too shabby! I was tired but still helped build a racetrack and braided my daughter’s hair for bed. We made it through playing in the front yard, allergy medicine for the small ones, and a few temper tantrums.

These are all things that healthy people take for granted and we have to work much harder for. The greatest thing about us is that we are fighters! We’re tough, and make things happen. Some days I struggle to get dressed but I do eventually. We have to think things through to save energy. We work so much harder at things than healthy people do but we just keep going. That is pretty freaking amazing!

To my fellow fibromites, know this. You are incredible! You are brave, you are strong, you are proof that people can do anything. Every single day life for us is difficult but we keep going. That is awesome. You are awesome. We are awesome. Let’s not forget that!

Thought-somnia

217fcbd2d9147a946c2ba07ae1ef0d36

I lie here in the semi-darkness; the room is lit with a weird half glow from the gibbous moon somewhere outside. The darkness is translucent and diaphanous about me, tinged with heady blues and soft blacks and the minute, luminous influence of starlight.

I am alive, vibrant, and humming despite my inevitable fatigue. My body yawns and curls in on itself; my spirit swings wildly in the breeze of my thoughts and flutters on the edge of an abyss. It reaches out with impossible hands to gather the moonlight to myself, to pluck the stars from the sky one by one and place them on my tongue to feel them melt into inexplicable froth and disappear.

The ever present question looms large in the darkness of my supposed rest: what is wrong? Another disease stricken off the list, and I suppose I ought to be grateful for each horrible fate that no longer awaits, each drooling and writhing hydra gnashing its teeth I somehow manage to escape. And yet… I find myself disappointed. Each awful reality would make so much sense, it would fit so well, and yet it all remains enigmatic and foggy… a foe that strikes at me from the mist, and I am helpless to identify it, to strike back, or indeed do more than clumsily dodge blows as best I can and try to staunch the bleeding.

It’s not lupus. Well what the hell is it?! It’s not multiple sclerosis. It’s not this. It’s not that. Do I just have the worst case of fibromyalgia in the whole freaking world?! Did I just hit the terrible luck jackpot and I have to live this way the rest of my life? Continually worsening… medications ineffective… barely scraping by financially because everything extra goes towards medical bills and the trips it takes to get me to doctors who might actually be able to do something… Maybe I should just do what a good soldier does and fall on my sword. But no… I’ve contemplated that so much lately, down to the minutae of planning and taking into account all the loose ends to be tied up upon my demise… and the thing that gets me every time is the mental image of C finding my body. I can’t bear the look on his face or the tears. I just can’t do it. So I curl up into a ball and whimper while the mist swirls and eddies around me, while the unknown, unnamed, faceless enemy (enemies??) stalks and jeers and jabs and demoralizes.

I want to get better. I want to be better so bad it hurts. (Maybe that’s my problem. Hah!) I have so much potential… so much locked away inside because I don’t have the energy or strength to pull it from myself and lay it out in the sun. I need an assistant, a minion, a crone… Someone to hobble hunchbackedly to and fro at my beck and call. Someone to take over the menial tasks of living so that I can focus all my precious remaining energy on creative, ennobling endeavors.

I sit here bare skinned, swathed only in quilts and blankets, and even in the dark I cannot bear the sight of myself. It is not that my form is displeasing, per se… but it’s because I can see what is inside me and it kills me that I can’t be everything that I want to be. On the inside, I am wind chimes and church bells and Tibetan prayer bowls and bagpipes and a hand drum. I am brightly colored beads flashing in the sun, multi-hued fish swishing secretly through cool ponds and rivers, and the whisper of leaves as the weather changes. I am the smell of rain on the way, the eye boggling pleasure of a riotous tie dye pattern, the satin caress of age-smoothed wood, and the soul satisfying release of the perfect cup of tea or coffee. I am so many bright, beautiful, eclectic, warm and neutral, shining, earthy, wildfire things inside… and I can’t get them out. I can’t be who I really am and who I really could and should be because of this poor broken body that I can’t help but hate sometimes. Most of the time I regard it with a fond kind of pity as you would with an injured kitten, maybe with a bad leg. Other times, though, the frustration boils up in me like a scalding magma that feels so good to indulge yet at the same time fills me with a deep and ineffable despair and sadness… because I am not sure that this body, this prison, will ever change. Kittens’ legs can heal. My beautiful soul-skeleton is closed in by swaths of pale, chubby flesh shot through with purple stretch marks that were never there before. Sometimes they are beautiful tattoos that tell the story of my Amazonian endurance, and other times they are the ragged cracks through which despair and disgust ooze from my very core as lava from the earth’s crust.

So I lie here in the half-moonlight, and I wait. I wait for sleep to overcome me, as inevitably it will. I wait for tomorrow to begin. I wait… I just… wait.

Alone in a Crowd

alone

Originally posted; Mar62013
  *Although I  posted this so many months ago – after re-reading it ~ it is exactly how I feel today

Alone in a Crowd

Part I

I am in day 3 of a Flare.  It started on Sunday afternoon with my sciatic shooting pain down my right leg followed by my leg deciding to run a mile without me.  I was able to alternate walking and sitting, applied heat and some meds to get through Sunday.

On Monday, when everyone was watching the weather trying to determine whether it was going to hit us or not – I would simply reply – “We are getting some kind of strong weather – trust me”.  My body was already forecasting the weather to come.  The body aches were increasing.  I could feel the myofascial trigger points increasing in both my low back and between my shoulder blades.  I forced myself to go to the pool before work which did help immensely in being able to walk easier.   Note:  I still don’t need a cane or other walking assistance – I just walk like I am 100 years old when I have these days.  I worked a full day with an even fuller night being Mom chauffeur.

On Tuesday a.m. I awoke to the phone ringing telling us there would be no school due to the snow we had received over night.   I would have been calling in sick which I rarely do but the fact that my driveway and roads were not plowed gave me one more reason to stay home.

My body was rebelling the snow outside.  I kept the blinds pulled all day and yet still had a migraine and was wearing dark shades.  I took a long hot bath followed by ice on the back a warm blanket some meds and a NAP.    I woke with hoping to feel better.  There was a short time during the day when pain was lessened.  Then when fixing my family dinner – my body reminded me that it was still there.

It’s Wednesday now,  I woke with the same morning stiffness and aches that I always endure.  But as I continued to get ready for work the pain continued to increase.  Grateful to have only a headache and not a migraine with the rest of my body in high pain, jeans killing me as they touch my thighs.

I dropped our Daughter off at school and then the tears started to come.  I have a 25 minute drive to work which I never stopped crying.  I talked to my husband briefly; when hanging up he said I hope you feel better soon.  He was trying to say something to help but when you have a hysterical pain filled crying woman on the phone what can you say?

Part II – So Alone

As I was driving to work I thought who can I call.  I needed to talk to someone.  I love my Family and Friends but as I thought of each of them I knew they were not what I needed.  What could they do?  I know my Mom would have succeeded in calming me down but all it would have done was to stop the crying.  I needed more than that.  The same thing goes with my friends – I would have most likely calmed myself down until I hung up.

What did I need?  I needed a Fibromite friend.  I needed someone who would 100% know how I was feeling.  We say all the time that unless you have really experienced a Fibro Flare you can’t get it.  How can we make others really understand without going through it.

I think I will print out the following recipe to share with non-fibromites.

recipe cardRecipe for a Fibro Flare

  • Stay up for 3 or 4 days to get the proper feeling of exhaustion
  • Dress in clothing made of rough burlap material
  • Get the flu bug to add fever & body aches
  • Go out and drink way too much – this should give you the migraine, poor balance and queasy stomach
  • Ask someone to take a bat and beat you from head to toe
  • Spend too much time in the sun – giving you the worst sunburn you have ever experienced
  • Use your arms as a pin cushion
  • Add a good dose of memory loss
  • Top it off with someone stabbing you between the shoulder blades once in a while with a good sharp knife
  • Turn on bright spotlights and loud music several times throughout the day
  • Repeat all of the above for at least 3 days

I don’t know if this will help but it’s worth a try.

I continued thinking – how alone this pain makes us feel.

I keep think is that I have family, friends, online support groups and my page where I work so hard to keep a positive outlook for others and yet why do I feel like I am all alone?

How many of us have only have an online support group that we can post our bad days and get some sympathy; and maybe some advice, and really have no-one we can call.

So many times when on some of these sites what happens is we get others who chime in on how bad their day has been too.

Don’t get me wrong I find a big need for these support groups. Heck, I even have my own small one.  I believe in them.  There should be a place where you feel safe to express the pain, anger, etc and hopefully get some positive uplifting support with maybe a few new things to try.

I have a handful of people I have met on these support groups that have become what I would call my Friends.  These are people who I hope in my lifetime to meet and wish we lived in driving distance of each other.  However except for one I have never had any contact with any of these people except for online.

I began to wonder – is there a Hotline for Fibromites?  If not, how hard would it be to start one.  What if I started one? A way for others to have someone to text or call when they are in real need of someone who ”has been there” and really can understand where we are coming from when we are in day 3 of a flare.

We use the closed online groups to keep our anonymity; what happens when we open up to others via text, online chat or a real phone conversation?

How can we be surrounded by so many people who care and love us and yet we still feel like we are all alone?sometime we all need a shoulder to cry on

I know that personally when I hit a flare I may start out by voicing it but the longer and stronger they become the more withdrawn I become.

I just want to lock myself up in my room and just be left alone.

This is exactly what I tell people not to do.  I know what I need to do.  I need to make myself go to the pool tomorrow, have my hot baths, keep moving as much as I can.

Tonight; I am going to lie low.  Tomorrow, I will find my inner fight and beat this thing.

I will put this out there to any Fibromites who are reading this – until I figure out the solution to the Fibro hotline – if you are feeling in pain and alone know that I have an ear, a shoulder and sometimes some ideas to share.

We are all Fibro Warriors ~ Living Life!

warrior

Mission Possible

Yippee, YooHoo, YAY 🙂 wondering why I am so happy? Well, after 4 whole months, I was able to tie a saree today, YUP a seemingly simple task w/o my arms hurting and w/o feeling like I am actually lifting 100 lbs.

A while back, around June 2013, I had freaked out about repeatedly not being able to do simple tasks, tasks that I had taken for granted like tying a saree, preparing a couple of dishes w/o forgetting the ingredients/or even what I was doing. My  Cognitive Behavioral Therapist (CBT) had suggested that I write reasonable and achievable short term goals (>=6 months) and realistic long term goals and break them up into small(er) steps so that I can take a stab at it – One Task….At A Time.

My short term goals went something along these lines (status in italics):

  • Work on improving resistance in my back and legs – working to follow a walking routine twice daily
  • Write a blog post every week – almost able to do it except when i was down with fever
  • Bake 1 dish every week – same as above except during when I was down with fever
IMG_0146
chocolate muffins
mango muffins
mango muffins
  • Cook an entire meal w/o feeling overwhelmed/confused/disoriented and increase the frequency – same as above, had a few snafu’s but with good outcomes (will post my absent-minded cake recipe soon)
  • Tie saree w/o hurting – did it today
laks
Yippee…..it did not hurt while tying a saree 🙂
  • Sign up for Tai-Chi or yoga class – on hold as i need to find a teacher who has experience working with folks in pain
  • Revise/Prep for PMP exam – exam on October 30, 2013 –  WIP
  • Stop Madhavi, my cook by end of September/mid october 2013 – DONE, first thing i did was to stop her as soon as I quit work 🙂
  • Start driving again –  on hold

Yes, there are ok days, not-so-ok days and absolutely crappy days but now, by taking each day as it comes, I am building up my resistance slowly and hopefully steadily. Most importantly, I am able to exercise self-compassion even when i am on the brink on going into a blame spiral – i deliberately pause and remember to BE HERE, BE HERE RIGHT NOW, be thankful for my blessings and be hopeful, however tough the going is.

Did I tie my saree perfectly today? No, not at all but I have been wearing a saree long enough and i know a couple of tricks 🙂 but did I feel good, did i feel like I was kicking Fibro in its rear – YOU BET!!

I now celebrate my small victories and look defeat in its face by regrouping and trying again and again and again.

Here’s to small victories!

Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more ~ Louis L’Amour 

Featured image from http://wanentrepreneur.com/wp-content/uploads/2013/01/Goals1.jpg

One Task……..at a time

Published first on June 7,2013 @ http://lgvblogs.wordpress.com/

I had thought that I understood everything that is there about FM that I have to live with this for the rest of my life and that I am taking all the necessary steps, baby steps – AAA – Become Aware, then Accept it and finally Adapt to living with it. Little did I know how wrong I was!

I had (am still having) the mother-of-all-flareups, right around my b’day – med dosages were increased to reduce the pain, which meant, I was walking around in a fog, sleeping even less. Even my dreams, makes me tired these days, go figure 🙂 A seemingly small task, a task that was second nature, a task that everyone, including me used to take for granted (like cooking a simple dish/tying a saree/preparing school lunch for kids/even dressing up to go somewhere) makes me feel exhausted and over-exerted and like I can’t take it anymore.

Each step feels like a fight, even feeling positive feels difficult. I feel so overwhelmed, inadequate, not to mention SCARED cos the person I am now – this tired, exhausted, absent minded, disoriented and bursting-into-tears person, getting upset/angry/[insert knee-jerk reaction here] over even the smallest of things/words,actions person -is NOT me. Sometimes it feels like who I was/used to be is a figment of my imagination.

Then my doctor told me something – “We usually are more critical of the self than we are of the others, and we set standards that are so high for ourselves, it is almost impossible to reach them. So we end up pushing ourselves more than we need to. In addition, because of the chronic pain, the physical body is in a constant hypersensitive state. Add the emotional component, you are basically a jumbled mess.”

He also said that loss of any kind makes us feel bad. In my situation, “I am simply mourning for the loss of the person I used to be, the person I was and not what I could have been. And like any grieving process, I have to go through the motions, and that it is not necessary that I go through all of them one by one. I might be going through all of it at the same time i.e. denying that I am in pain and hence push myself to do more but not being able to which leads to anger. When pain hits full force, I am in fear and sometimes in grief ‘cos of the various restrictions. Unless and until I am MINDFUL (towards me) and exercise SELF-COMPASSION, I will be in denial and will only end up hurting myself more. In addition, cos of the various restrictions, I might have to unlearn and relearn (or pace myself) to do a lot of these tasks, tasks that are simple and that I used take for granted.”

Sounds a lot like common sense and simple to follow doesn’t it? How difficult is to be compassionate or even be mindful towards ourselves? Surely, it is not that tough to unlearn and relearn or even pace myself right. Well, it is exactly that difficult to do it. Why, you ask?

We have all heard and know that comparing ourselves with others will not do any good and makes things worse. In my case, like my doctor said, I am my worst critic and I am constantly comparing myself to——— yup ME. I am compare myself to my past self (not my younger self) but the person I was – the able-efficient-multitasking-on-top-of-everything person. You can imagine the predicament I am in now, cos I have to unlearn multitasking and then relearn to single task.

The good thing though is I know I am going through these various motions/emotions (of any kind – fear, anger, frustration, sorrow, but usually -ve) but in my own, weird way I am able to detach myself from it (sometimes in the first 5-10 minutes, sometimes in an hour or even longer but it always varies) and observe these motions (or emotions in action). However long it takes, when I snap out of these emotions I know I AM not the pain or these emotions. Rather they are part of me and not the other way around.

While the journey ahead seems daunting and tough, I am positive (all the while knowing that I am equally scared) that I am on the path to get and feel better – just one task…at a time.

Self-compassion is a practice. It’s a practice of returning again and again with a softened heart to one’s self, knowing that the ripple effect of that is more mighty than just about anything ~ drchana

Featured image from Studio Without Walls