Talking Bluntly about Night Time Chronic Pain

September is National Pain Awareness Month.

I have a chronic pain disease called Fibromyalgia Syndrome.

You can read what fibro is: here.



(This is a typical night for me. I describe it as follows.)

I think the hardest thing for a person with chronic pain is to tell you how they are doing. (Seriously.) You ask me how I’m doing… really? Let me start by asking you, “do you really want to know?” (Probably not, sometimes maybe?)

When you ask me how I am? “I’m fine.” (That’s a flat out lie!)

I’ve read a few posts where bloggers are addressing pain, chronic pain. They are describing what pain we face and what that looks like because September is Pain Awareness Month. My friend, Terri at Reclaiming Hope describes a typical morning for a person with chronic pain. Terri could have been describing my mornings. You can read her story: here.

I will tell you what a typical night feels like for me.

It begins at about 5PM. I get very tired and extremely agitated. My evening will be filled with aches, pains, and irrational episodic thoughts… I will question my worth in this world.

I try to stay out of sight as the early evening turns into the late evening. I know bedtime is coming and without something to keep my mind occupied, it’s going to be a very long and painful night. The clock says it’s bedtime, as I crawl in, it begins. Pain. Unrelenting body pain!

I may be successful in falling asleep on my own, typically not, then I rely on a medication for sleep. My ears feel full of pounding blood. My legs feel so heavy I want to get a knife and stab them until I feel relief! My hip feels like my leg has fallen out of the socket, and my lower back starts to spasm. But these pains are the easier ones to deal with… it gets much worse.

Are you still with me? Have I shared too much? It’s very possible you are bored or feeling somewhat miffed! After All, you are an intelligent person. You certainly can tell if another person is in pain. Well, I don’t look sick! I might look tired, but not sick. I am in real pain every single day.

The night continues, and by this time I have been up at least three times. So here we go again as the next symptoms have their turn with me…

My arms will start jamming up, causing shooting pain throughout my elbows, upper arms, neck, head, and shoulders. As I try to relax, I’m often jolted back into my harsh reality by shooting pain. I try to hold myself tightly as it feels like my body is being pulled apart by some malevolent being. This is very unsettling not to mention extremely (yes) painful!

After diagnosis, a few years into my illness, I became basically bedridden. At the beginning of my relationship with my future hubby, I would be awake about four hours a day. That was it. My normal. I could push through a day once in awhile. I made sure to spend that precious ‘awake time’ with Jeff. Then this disease turned upside down on me. I now get maybe a total of four hours of sleep at night. This lack of sleep causes me to lose days! I am mentally a train wreck and physically spent and in pain.

But. You ask how I’m doing?

“I’m fine.”

September is Pain Awareness Month!

Going Dark?

I’ve thought about putting my blog on hold… again… for a little while, and going dark. My house is going officially on the market on August 1st, I’d be lying if I said I was ready. In fact, last year at this time, we were prepping to sell our house, and I was able to sell a few of our more significant items. Then I got pneumonia in both lungs, and had the flu after that! It took me about six months to recover. We pushed the selling of our home into the next year, where we are NOW.

If there is one thing people with fibromyalgia get good at, it is handling change! Emotional change that is. One minute we feel fine, the next is anyone’s guess! Eventually, we stop reacting and start preparing for what we know is uncertainty in our days and unforgiving nights that are full of restlessness.

One thing people with fibromyalgia are not good at is physically changing locations. It can take a fibro warrior an entire day to plan and execute one trip to the drug store, grocery store, OR hardware store. It can take one whole day to go to the doctor’s office; travel time, wait time, and examination time. A straightforward day trip can throw us into a flare for days, sometimes weeks.

With all of the above mentioned, what do you think I’m planning to do once my house sells? The hubby and I will be living in an RV fulltime, moving every two weeks from site to site … yassss! (What the hell am I smoking!?!?)

Jeff and I have researched many areas we have considered relocating to. The weather in Minnesota is not kind to a person with chronic pain. There is a saying in Minnesota, “If you don’t like the weather wait 10 minutes or drive 10 miles.” That is our weather in this state, everchanging. Instead of picking a place to move to, we are going to try it out first. (In an RV.) We are going to travel this big, beautiful United States of America and see where we will fit!

We will be purchasing this model; a 39′ Fuzion 5th Wheel Toyhauler, similar to this floorplan below. The garage will make the perfect office! We will enjoy the patio as well.

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I follow quite a few blogs of fulltime RVers. Some I follow, have fibromyalgia. All RVers have said it is the best thing they’ve ever done (there are a few exceptions) and many with fibromyalgia say they’ve never felt better. I’m betting on it!

My brother asked me, “How much time have you ever spent living in an RV?”

Me, “None.”

“Then how do you know you’ll like it? That this is what you want to do?”

“I don’t know if I will like it.”

“Well?”

“Well, I have been researching this. The hubby is all for RV living and is finally mobile with his day trading. I checked with my doctor, and she is on board, she thinks this will really benefit my health. Speaking of health, I am not going to ever get better. I have a chronic condition. I will only get worse with age, so I want to go now. I want to travel while I am mobile enough to enjoy this type of experience.”

“Sounds like you’ll be RVing then.”

So, back to going dark and shutting down my blog for a few months, no way. I need my tribe! I want to take you all with me on this experience. I want to tell you the truth, what this is really like! I’m not going to go on YouTube and tell you everything is wonderful when it is not. AND. I wouldn’t tell you anything on YouTube because there is no way I’d do my own YouTube channel! (I’m glad others have already done this, don’t get me wrong, and there are some very good ones that I follow!)

So, the good, the bad, and the ugly… it’s all coming out on I Tripped Over a Stone! I’m going to tell you like it is. I will ask you for ideas when I feel lost and look to you all for support. I will post some short slide shows from time to time on my blog. I promise to always show you the reality of living fulltime in an RV and living life on the road with fibromyalgia.  Come with me! I definitely need my tribe.

I will also be needing a clever new tagline once we are on the road! I’m open to suggestions… any ideas???

Live your best life!

img_1036-3~Kim

I’m Stuck

I don’t know how this post is going to turn out, but here it goes. Maybe if I write it down, I’ll figure it out. I’m stuck! And I need to get unstuck.

We are once again planning on putting our house on the market, and we have so much to pack I don’t know where to start. Anywhere at this point would be good!

I’ve mostly been stuck in bed and have been since the 2nd week in January! I honestly was getting over pneumonia and the flu for the significant part of January. At that point, I’d had pneumonia twice since September, and then ended up with horrible flu over Christmas. However, we are almost through April! My exhaustion, pain, and anxiety still have their way with me nearly every damn day! This has got to stop!

I’ve thought maybe it’s because I’m lazy. I was thinking perhaps I am genuinely exhibiting sloth-like characteristics (one of the seven deadly sins) and this was entirely in my control to stop this lazy behavior. If I stopped being so lazy, maybe I’d feel better?

I planned my next day. I had a schedule full of activities! I wrote down what I’d wear, eat, and when I’d clean, blog, read blogs, walk the dogs, even when I’d rest! Goodbye sloth person!

The next day I got up, got dressed, and crawled right back into bed. My back was killing me! My ears were painfully ringing. Then my anxiety kicked in, and I had a panic attack. Not my idea of a good day…

Was I freaking myself out? I could’ve prevented that panic attack, probably. Time for a new plan… I would “meander” the next day. I would trick myself into thinking nothing was going on as I got dressed, ate, and did my tasks. I must admit, it worked for about three days, then exhaustion took over. I didn’t have enough energy to do anything. I looked like a newborn Bambi when I tried to get out of bed. But I was in so much pain, I couldn’t sleep! Painsomnia is real. I’d doze off for an hour here or there but even hoping for a three-hour consecutive stint of sleep was an unobtainable goal.

This is where I am today, AWARE that this is a problem! AWARE that something has to change. AWARE that the weather’s getting nice and I need to get outdoors, not to mention pack so we can sell our house! So I’m going to do something about it. I’m going to try something drastic… I’m going to leave my home!

My siblings and I now own my dad’s old farm place in western Minnesota. This has turned into our family retreat. This Sunday, I am going to the farm by myself for one week. (One of my sisters does reside there so I won’t be completely alone.) 

I am counting on a change of scenery to get me out of the stuck place I find myself lingering in. I am relying on reduced awareness of pain and the inability to stay in bed as there are things that must be done on the farm. It is not a farm with animals but the land is farmed, and the house and surrounding grounds are huge and need constant attention.

Sometimes we need to jump out of the frying pan into the fire… don’t you think? Sometimes a change of scenery is the best gift we can give ourselves. I am slowly packing this week and am nothing short of terrified that this is not a smart move, but I have a backup plan in place (my husband will come for me if I need him). I’m tired of feeling like a lazy and sloth-like sinner!

I’m jumping!

img_0992-4~Kim

Mind Field Monday (Hallelujah)

Depression and anxiety.

Anna went from being bedridden for two months to standing in front of an audience, performing. Takes guts.

Here is her performance in 2014 at American’s Got Talent.

Hallelujah!

IMG_0299 (1)~Kim

Kill the Cobra!

So… the hubby and I are both working from home now. How nice, right? We have a strong relationship! I love him! I couldn’t imagine a day without him, but this is incredibly ‘different.’

He has begun day trading, “options.” I know about trading Forex, I am at a bit of a disadvantage with all his talk on options. Calls, puts, strike prices and so damn much more. I’m learning, but it is overwhelming for me right now. The hubby is overwhelming me this week, and he is aware of it which makes it worse in my mind.

I am a cobra! I am quick to bite! I strike when I lose my cool and call him out on even breathing too heavy. Not cool of me! I speak, and then I apologize. I am being a jerk and don’t know what my problem is… it feels like there isn’t enough energy in the room for the both of us. Every movement he makes startles me!

The beauty of this arrangement is that he can help me on my difficult days. Most of my days have been difficult as I am struggling to get my strength back from a long period of illnesses. I am grateful for his help! He cooks, does laundry and takes care of the dogs. He loads and unloads the dishwasher and cleans the bathroom. My gawd, how did I get so lucky? What do I do? Act like a Cobra and strike!

We are working on boundaries. Maybe this is a good thing as we plan to make our move to an RV this summer if the trading goes as planned, and we become mobile enough to make this kind of attempt. I need to watch my tongue. I have a hard time accepting that I can say mean things to the man I love. I really love that he is able to be home and I really love that he really has a knack for trading. I want this to be successful! Then I open my big mouth and bite!

I believe it goes back to the “lack of energy” available in the room where we are both pounding on our computers. We both are trying to talk or listen to our own music. Headphones have helped, but they don’t solve everything. My husband is a very empathic man! This makes him everything he is to me. The only downside is when I wake up like a cobra and he feels my wrath. I need to find a way to kill the cobra.

Are any of you currently home with your spouse all day long? How do you separate work time from social time? Do you have any boundaries in place? How do I kill the cobra?

IMG_0325~Kim

 

 

You Have a New Diagnosis!

The one thing that always bothers me about coming home from the hospital after an inpatient stay is the prompt, excessive billing with nothing to show for it. Can’t they send me home with something? How about a new baby? Maybe that’s asking too much. What about a puppy? A stuffed giraffe? Anything. There should be a parting gift! It’s the only polite thing to do. But no, there is no parting gift.

To my surprise, I was ‘gifted’ a new diagnosis after completing my recent mental health examination. (There is no return policy, I checked.) I undergo these exams every six to eight months as I suffer from clinical depression. To my surprise, after my exam, I was told that I now have a ‘generalized anxiety disorder.’ Well super. Thanks, but no thanks!

It was time to face the music, and I decided to take the medication my doctor prescribed. It is in the “histamine” family! What a relief as opiates and benzodiazepines are on the chopping block for so many of us. My gawd, this stuff is some kind of miracle in a bottle! Why haven’t I found this sooner? I no longer hyperventilate in social situations!

In all honesty, I tend to be a nervous person. I was as a child as well. But there is a big difference between nervousness and anxiety. You can be nervous about an event, but still, you attend and enjoy it. You do not get nervous just going about your daily routine. Anxiety, on the other hand, makes even your normal day feel like you want to crawl right out of your skin!

So what is the definition of generalized anxiety disorder?

Let’s look at Psychology Today for an answer;

Definition

Generalized anxiety disorder (GAD) is much more than the normal anxiety people experience day to day. It is chronic, and sufferers experience severe worry and tension, often without provocation. This disorder involves anticipating disaster, often worrying excessively about health, money, family, or work. Sometimes, though, just the thought of getting through the day brings on anxiety.

People with GAD can’t shake their concerns, even though they usually realize that much of their anxiety is unwarranted. People with GAD also seem unable to relax and often have trouble falling or staying asleep. Their worries are accompanied by physical symptoms such as trembling, twitching, muscle tension, headaches, irritability, sweating, hot flashes, and feeling lightheaded or out of breath.

Many individuals with GAD startle more easily than other people. They tend to feel tired, have trouble concentrating and may suffer from depression. GAD may involve nausea, frequent trips to the bathroom or feeling like there is a lump in the throat.

When their anxiety level is mild, people with GAD can function socially and hold down a job. Although they don’t avoid certain situations as a result of their disorder, people with GAD can have difficulty carrying out the simplest of daily activities if their anxiety is severe.

So, excessive worry to the point when even daily tasks create anxiety. Startling easily and physical symptoms; all of which I experienced. In my head, I knew I was feeling things that were irrational, but my anxiety was constantly overriding my thought process. It is challenging dealing with generalized anxiety disorder. I am so relieved I decided to get some help!

Live your best life!

Version 2~Kim

Engage.

I made soup! I made soup. Cabbage roll soup. It is delicious and freezes up in smaller portions very well … the point is, I am trying to re-engage in life. Healing from pneumonia that I have takes weeks, sometimes months. This virus has caused my fibromyalgia to flare with a vengeance. The fatigue itself is overwhelming. But there is more to this then just healing from pneumonia, I need to recover mentally from the treatment I received while I was hospitalized.

I entered the Emergency Room on Sunday the 16th of September. (I have been a patient in this hospital over a dozen times; in-patient, I was not really worried as I believed I would receive adequate care.) I was having chest pains and a hard time breathing. I was instantly taken to a room with a crash cart! There were 4 to 6 nurses and technicians with me at once! My clothes were removed, a monitor was hooked up to my heart while an IV was started and blood was taken. The doctor appeared immediately. Morphine was given, and baby aspirin was given to me to chew. I was put on oxygen and wheeled into a different room for an MRI and brought back to my emergency room and given Fentanyl. More blood was taken, and my vitals were beginning to return to normal, but my fever remained very high. I had pneumonia. A nasty case according to the emergency room doctor who said he would be admitting me into the hospital…

Everything went wrong once I was moved to a hospital room. Everything. I was released three days later. It was so traumatizing I cannot write about it to this day… to heal, mentally and physically, I need to put my memories about this hospital stay in a box and close the lid for now. I did send in a survey that was sent to me from the hospital. I filled it out truthfully, painfully, as the nightmares have still not ceased.

In time, I will write my story when my body heals, and my mind can deal with what I went through, this is not that time. 

I have received stories from women with all sorts of chronic illnesses, reading about their very own hospital horror stories. They are brave and strong and wrote about their experience. They had the guts to send their stories to me. I am disgusted and angry at the horrific treatment they suffered through.

What do I do now? 

How do I handle this information?

I want to make sure these horrors never happen to anyone again… I want these women to have their stories heard! I also need to work on a solution. I need to figure out how to ensure patients are listened to and their “rights” to a pain-free hospital stay are upheld! I have been going over story after story… what would make a difference?

I think I have an idea…

The introduction of Palliative Care Medicine Plans for all chronically ill patients:

Screen Shot 2018-09-30 at 11.26.34 AM

This is my new project. My goal will be to provide access to these type of care plans for those who need them. I will not stop until I have these types of informational packets ready for anyone who needs one. This will take some time, but it will become a reality.

 

~Kim

The Heart Remembers What the Head Fights to Forget…

I know it was at some point this week, 15 years ago… I was searching for a flight. (ANY FLIGHT!!!) A flight from Minneapolis to the Brooke Army Medical Center in San Antonio, Texas. My mother had called me; Kory, my brother, was shipped stateside. He was active USA Army, stationed in South Korea, (incidentally where we had adopted him from 27 years prior)… he was at the hospital with aggressive cancer, they expected the worse…

Mom had just had gastric bypass surgery, my brothers and sisters were working; two babies from two different siblings (with sweet little families) were due any day… I lived on my own in an apartment with this ‘little’ issue called ‘fibromyalgia’ making it impossible for me to have any kind of schedule…

“Can you get to Kory?”

(“Can I get to Kory?”)

… can i…???

“I will be on the first flight out!”

Rest, my brother, I am on my way.

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I can’t make this a long story… it hurts too much, my brother did not last, the fucking, unforgivable cancer took him at 37 years of age. This is a difficult month for me. He died on August 18th, 2003. My family members were all able to see him, tell him we loved him then we had to watch him die… I hate August.

The Chronic Illness Hell Flare.

“I will take charge of my illness it cannot be in charge of me.”

Before we begin, can I just explain how much I hate going to the doctor? I mean, getting ready? (Showering is hard but who wants to be the ‘funky’ patient?) The questions! When was your last period? Yes, the question they ask you every damn time, and you can NOT remember! Could you be pregnant? Well, what are the chances of immaculate conception? The enticing but gross magazines. Even though you want to lose yourself in one of those bad boys all you see is “GERMS!”

So back to my initial statement, “I will take charge of my illness it cannot be in charge of me.” I realize this is now bullshit. Because it has me by the rear and is shaking me like the 70’s commercial for shake N bake “…and I helped!”  (Remember that sweet little child in the commercial who helped? If you don’t, I can’t help you understand.) I am not saying, you can ‘control’ this chronic illness at all times, but I am saying you can take charge by coming up with a plan.

Taking charge (in this case) of a flare that has come out of nowhere and I really don’t even know if it is a flare or if an alien really did succeed in taking over my body… ‘taking charge’ means any damn way we can think of! I currently put out an S.O.S. to my doctor. (Did I mentioned how much I hate going to the doctor?) Yes-I-Did! And I LIKE my doc! But I will do whatever she requests if she will just call!!!

My trip to the chronic illness hell flare is called “My FM Day.” I named it. Notice the positive indication of calling it a ‘day’ instead of three days, or a week, or a month? Just stay with me, I know I sound like a crazy person right now.  There is nothing positive about having a flare. I let others know by stating I am having an “FM Day” so I do not have to verbally abuse them.  Those who care to know more will ask. Those who understand will not need to ask and will retreat. So, take a moment and name your ‘hell’ day, week, or month. (Please inform your loved ones of said name.)

  • Got a name?
  • Now get a box, bag or suitcase.
  • And gathered supplies for…

“My [insert hell flare name] Day”

  • Adult coloring books and colored pencils.
  • DVDs.
  • Netflix.
  • Amazon Prime Video.
  • Zentangle workbooks and gel pens.
  • Sketchbooks.
  • Journals.
  • Crossword Puzzle Books.
  • Playing Cards.
  • etc.

There will be rescue medications we will have on hand for flares. At times, we will have an S.O.S. call into our doctor. There will be soft PJs and lots of pillows on the bed. Don’t text! Don’t write letters! Talk as little as possible because you will not have nice things to say! Seclude yourself as much as possible but when the flare is over, it is over. Taking charge means we get through IT however we need to!

We will get through this!

img_1722~Kim

Put on Your Big Girl Panties and Deal!

I am battling through ‘something’… a new stage of fibromyalgia? Is this a 50 + club I have inadvertently joined? I have 2 decades of experience with this disease. Does anyone have a third decade under their belt? Did you notice any changes in your third decade? Anything that should be added to the Stages of Fibromyalgia?

So far this is what I am noticing, anyone else please chime in!

  • Just fatigue? Hell no, this fatigue has laid me out for two straight days, close to 48 hours of sleep! An infrequent hour awake here or there.
  • Increased pain. Yep. Maybe because I am not moving around as much? Mr. Pain had definitely laid claim to any waking hours I can grasp.
  • This disease is throwing me a curveball! I never swing at a curve… I may have to adjust my thinking.

This is the cruel part of fibromyalgia. If you are cognizant of the changes your body is going through it is scary, and worrisome. Is this a new symptom that will remain permanent? Am I losing my awake time? My productive time? I am losing days, not hours. Is this a stage I must go through? God help me, I am afraid.

If you are in a full-fledged fibro fog, it is not so scary. (I swear I’ve never wished for fog until this week.) It is scary for those who are observing us. Our poor caretakers. We are mimicking the first stage of fibro, all we do is sleep. For those of us who are in a fog while we flare, we kinda get off easy, we don’t remember much. We simply can’t remember.

I have started a Hemp Salve for pain. I am not going to write too much about it IMG_5021because I need a bit more time with it. So far, works on back pain, arm pain and settles restless legs ‘a bit.’ Definitely more pros than cons. Monday I will call to get my Medical Marijuana Card. I have been eligible for some time but just haven’t wanted to take that step. It Is Time.

 

 

 

Change is scary.

IMG_0390~Kim

Nothing More.

I am a blogger. A simple blogger that happens to have fibromyalgia and a few of its cronies. I blog about chronic illnesses, mostly fibromyalgia. Sometimes a few additional “surprise!” pieces come together and grace this blog. But. I am a blogger. I just want to blog. I have things to say. I have “opinions.”

I run a Facebook support group. A group of women who have come together to question, answer and share about anything really. If you have an issue, we will do our best to help. Other strange things that come up are discussed. Basically, nothing is off topic. It reminds me of a quilting bee, each member presents a handmade square, and when we start sewing these beautiful squares together, we have a magically woven quilt of beautiful stories and tales. We are a part of something! I am an admin of a wonderful group of women who make my day, every day.

I also run a page on Facebook. I repost my blogs on that page as some find it too difficult to find my blog on WordPress. There is nothing wrong with that. Who isn’t tech savvy? Me. (I surprise myself most days!) If I can make someone’s day easier by merely posting my blog in two formats, then that is what I will do. I run a facebook page for my blog posts. That is all.

It got crazy for me a bit. I said “yes” when I should’ve said “no.” I signed up when I should’ve hit delete! No one’s fault but my own… my responsibility to make things right again… I have and I did.

I am a blogger, nothing more.

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Just Me.

It’s been a while since I just sat down and wrote. No research, no posts promoting other bloggers, no words that rhyme, nothing, just me.

Just, plain, old, me.

I don’t understand how a comment without a ‘like’ matters in the grand scheme of things. If you don’t write ‘fuck’ in your piece, it is not that good. If there is no trauma, especially childhood trauma, to expose you are not an inspirational blogger.

No Drama = Dull.

I remember when I started blogging. I couldn’t wait to let my story spill out through the keyboard! It was absolutely magical when people would comment on my latest piece, respond to me! I had weeks of blogs pent up, ready to be “published” at a moments notice. I was hungry for the interaction. Petrified my post would not be well received and high on the idea, “I” may be able to help someone.

What a mind ‘fuck.’

The truth is, I am a chronically ill blogger who is getting worse, not better. ‘Likes’ and comments, or lack of either, positive and negative affect me. Research, I believe, is important. Words that rhyme is better left to others as is all formats of intentional prose. I do like to promote other bloggers that I find speak to me, enlighten me. I know using the word ‘fuck’ is a poor command of the English language, a cop out that I have used in the past.

I’m a blogger.

I wonder if I have hit a state of the sophomore blues? Some things don’t come out right. The reality of my freshman year is authentic; successes and fails. Maybe blogging isn’t for me? I know chronic illness isn’t really my bag, I suck at it. I am half way through my sophomore year of blogging. It is time to take out a mirror and re-visit my purpose for this blog.

Is my intent pure?

Are my words positive?

Am I a blogger worth reading?

Sometimes, I wish I were 21 again. At 21 years of age, ‘I knew it all.’ I was so sure of myself! My purpose and goals… what a joke. Now that I’ve hit 50, the only thing I know for sure; is that there is much I do not know.

But.

I am willing to learn.

cropped-screen-shot-2018-02-25-at-12-48-43-pm~Kim