Setbacks, road blocks and fighting through them

For me, the hardest part about chronic illness has always been the ups and downs. A few years ago, I was mired in misery and the good days were so few and far between that all they did was point how very awful my “normal” was. Even when I had a good day, I was unable to enjoy it because I was dreading the return of my pain. 

Now, I generally have more good days than bad, but the bad days hit me much harder than they used to because I am no longer accustomed to the level of pain and fatigue they bring with them. I find that it is so much harder to bounce back from the bad days, especially lately, since I’ve fallen so far off track. 

I finally started going back to the gym about 3-4 weeks ago. Week 1 was great! Tiring, but I felt amazing. Then, on Thursday of the second week, I slipped and twisted the bejeezus out of my left ankle. It was bad. Tears and cursing and more tears followed by a miserable drive home. It nearly took the wind out of my sails, but I got through it, (thanks largely in part to my ever supportive husband!). I gave it a few days to heal up and I got back to walking. 

Last week, I started running again. I decided to restart my couch to 5k program, (AGAIN). I made it through the first two days and then I spent Friday, Saturday and Sunday sick as a dog. It seems to happen every time I start working out, the best explanation I can find is “irritated airways”. We’re talking full blown flu symptoms, they come on super fast and usually last just long enough to throw me off track, (if I’m lucky, sometimes there’s a wracking cough that lasts for WEEKS). This time, I’ve decided that I’m going to fight back. I got sick on Friday, today is Tuesday and I went back to the gym. My workout was certainly not amazing, but I managed to do week 1, day 3 of the C to 5k program. I’m going to take it easy tomorrow and then on Thursday, I’ll start week 1 over again. I figure there’s no point in moving forward until I can comfortably do the entire week’s program. 

I won’t lie, it’s taken a lot of fighting to keep from getting discouraged. I feel like every time I turn around, something goes wrong. It’s a daily struggle for me not to give up, but I know that if I do, I’m lost. I cannot go back to the dark place where the fibro rules, I don’t have what it takes to pull myself out of that pit again, so my only option is to not fall into it.

If I have to, I will do every week of the program over and over until I can get through, but I don’t think it will come to that. Hopefully, I can acclimate myself to the more strenuous workouts and my body will adjust accordingly. My goal is to finish the entire 9 week run plan before the start of 2017. I may be back at square one, but at least I have the benefit of knowing how my body reacts to it. Fingers crossed!

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Emotions are painful

One of the things I struggle with a lot is managing negative emotions. Since fibro came along, and for a while before it was diagnosed I’ve been very quick to tears or frustration. It can be anything; an overly busy day, bad news, tiredness and pain. Even little things are enough to knock me sideways. […]

https://fibrofoggyness.wordpress.com/2015/07/23/emotions-are-painful/

The light at the end of the tunnel

Saying it’s been a rough summer is a bit of an understatement. 

Several times, I started writing posts about what I was going through, but I could never get the words out. I’ve never been very good at expressing my struggles; the worse they get, the more withdrawn I become. That’s why I began writing this blog in the first place, it’s one way of dealing with life’s hurdles without the added stress of actually talking to someone.

Unfortunately, even writing out my thoughts is often difficult for me. I have no problem writing about happy, positive topics, but when it comes to pain or stress, I just feel like I’m whining. I know that there are others out there struggling with worse situations than my own and it just feels silly to sit here and whine about my problems, even when I know it will help me in the end. Which brings us to this current post, I guess I’ve hit my limit of what I can actually carry because now, the words are boiling over in my head, so here goes… 

I’ve been dealing with my own chronic illness for my entire adult life. I know how to live with it and I’ve (mostly) finally figured out how to ask for help when I need it. No big deal. It is what it is. Unfortunately, this summer I got a crash course in the monumental difference between living with a chronic illness and loving someone with a chronic illness. I may have said it’s harder to love a sick person than it is to be the sick person, but until now, I had no actual experience on which to base that observation. I can now say with absolute certainty that it’s true.  

I have no problem being the patient. I’m a great patient, (assuming you’re a doctor who doesn’t mind a million well informed questions). I do my own research before the appointment, I generally know exactly what kind of treatment I’m looking for and I’m usually fully aware of any side effects/complications involved. Unfortunately, none of this is very useful when you are not the patient. 

My fiancée has been dealing with his own chronic illness for about a year now, but over the last few months it’s been getting progressively worse and he’s had to resort to some more aggressive methods of treatment. I do what I can when we go to his appointments, but the doctors rarely want to hear from me. 

The worst part, however is having to sit idly by while he’s in misery. The hardest thing I’ve ever done in my life so far is watch him being hooked up to an IV for treatment. I knew he was sick, but until that moment, the severity of his illness hadn’t really hit me. He has to go to an infusion center every few weeks or so and seeing him in there with the other patients, (many of whom are receiving treatments for things like cancer), is heart wrenching. The first time we went in, I thought I was going to burst into tears. I know that his particular illness isn’t life threatening and I know that it is treatable, but knowing that there’s nothing I can do to help only adds to my everyday anxiety.  

That was all at the start of the summer. Between the added emotional stress, taking care of my fiancée and my own existing issues, I haven’t been able to keep up with my routine. If I’m honest, I stopped working out (regularly) at the end of May, due in part to feeling under the weather myself. Much of my summer was spent taking care of my fiancée, (while trying not to smother him with attention). I made a few sporadic attempts to get back into the habit of workibg out or at least walking daily, but those were brought to a complete halt earlier this month due to serious complications with my own health. 

I’m on the mend now, but this last month brought some very difficult decisions and more pain, both physical and emotional than I have ever experienced. I am not exaggerating when I say I now know what my own personal Hell would be; I’ve experienced it at the hands of doctors and nurses under the guise of “treatment”. Before these last few weeks, I was confident that I was familiar with pain. I was wrong. What I previously believed to be a “10”, (aka, the worst pain imaginable), is now only about a “3” on my scale. I laid there, on that table and the only thing I could do was endure it; there was no way to stop it, I couldn’t even move. All I could do was lay there, screaming inside my head, silently praying for it to be over. 

I think the worst part of this whole experience is that I was not expecting that level of pain. I knew that there would be some pain involved in my treatment, but I was led to believe that it would be minimal. Too late, I learned that I had been mislead, whether or not that was intentional on the part of my doctor, I cannot say. I only know that on top of the physical pain I felt during the procedure, I am left with a seething rage as well as a feeling of complete and utter violation. 

I know I’m being rather vague, but at the moment, it’s the best I can muster. I’m just not ready to delve into the details; I still have too much left to sort through before I can process it enough to make it comprehensible. 

I spent the last 2 years training myself to channel all of my stress, pain, anger, etc. into my workouts only to have that outlet unexpectedly taken away from me. I’m not confined to bedrest, but I’m not allowed to do much either. It’s a strange and very unpleasant sensation, not knowing what to do with yourself. Once, I would have turned to art, but there’s just too much pain and emotion to wade through. It’s as though I’m full to the brim and there’s just no way to channel it into any one thing. If I could run, I could burn enough of it off to make it more manageable, but at the moment, even walking is difficult. 

I’ve screamed, cried and raged, but still, I’m overwhelmed. I can feel the black hole of depression pulling at me, drawing me in; it’s taking all of my energy at this point to keep myself from sinking. Two years ago, when I first started writing this blog, I was in much the same state, except I had actually fallen into that hole and hit the bottom. My life was falling to pieces; I was alone, in pain and had no idea how to handle any of it.

I may be in pain now, but I am not alone. That knowledge is truly the only thing that keeps me going. Not only do I have my amazing fiancée, I have my family and I have those of you reading these words. Even if only one other person out there reads this, it is enough to remind me that I am not alone and that is the true source of light at the end of the tunnel.

Pain and guilt

Lately, I’m rediscovering just how insidious pain really is. If there ever was a double edged sword, it’s name was pain. Living with pain is one thing. I find it far easier to manage my day to day issues when I’m on my own. Loving with pain, however is a whole new form of anguish. 

Part of the problem is that pain is completely subjective; you can never fully understand someone else’s pain and no one will ever understand yours. If I’m on my own, I don’t worry about that. My pain is my own and I don’t feel the need to share it with anyone else. The truth, however, is that I am rarely on my own. I’ve been fortunate enough in my life to have nearly always been surrounded by people who love me. They want to understand what I’m going through or how I feel and that’s where things get messy for me. There is no way to share your pain without inflicting it on others, which is why I generally keep it to myself. It makes me feel guilty to watch my loved ones suffer under the weight of my pain. They can’t physically feel it, but I’ve found that describing it in detail is often enough to cause emotional pain in someone else. 

I don’t mind keeping my pain inside, I’m used to it; most of the time sharing it just makes it feel worse. Sometimes though, some very rare times, the only thing I want is for someone to understand; someone to share the burden when it just gets to be too heavy to carry on my own. 

Every now and then I run into an instance that forces me to reevaluate the very scale by which I measure pain. Something happens that makes me realize what I thought was a 10 (aka the worst pain you could imagine), was a joke. Those events leave echoes that eat away at me for hours, days or even weeks after the pain itself is gone. 

Then, I have a choice: 

A) I can suffer in silence and make everyone around me miserable 

or 

B) I can choose to let someone in, sob my way through a generally graphic, horrifying description of my agony, thus sharing the burden. 

At first glance, it’s a no-brainer. Obviously, I should choose B, if that really helps. And yet… If I choose B, yes, my mind is eased a bit, as far as the physical pain is concerned. Then comes the backlash. I’ve just unloaded my physical trauma onto someone I love and now I have to watch them struggle under the weight of this new knowledge. They now have new concerns about me or my wellbeing, they empathize with me and now they’re stuck with the image of my suffering in their heads. In the end, the guilt I feel over dumping that burden on someone else makes me feel even worse. 

I know that I shouldn’t feel guilty about it, I know that that’s exactly what a support system is for, but I can’t help it. If I had my way, none of my loved ones would ever suffer. I can’t stand the thought of being the cause of their suffering and I hate feeling like I’ve just heaped a whole new load of worry on their plates. 

Right now, you’re probably thinking that I should consider counseling. Believe me, I have. I’ve been to many different therapists who specialize in pain management, they’ve all been extremely wonderful. My problem is that I’m never able to really open up. Even after seeing the same person for months, by the time I get to their office, I’ve mentally tidied up all my issues into nice, neat little packages and when I talk about them, it’s as though I’m discussing the weather. More than one therapist has outright told me that they don’t know how to help me because they can’t get a read on how I feel about any of what I tell them. It’s not intentional on my part, it’s just that I have trouble connecting with people and if you’re outside my little circle, it’s incredibly difficult for me to let you in.

The upside, (which I’ve been realizing as I type this), is that writing it down and putting it out here helps. Sometimes, you just need to be heard, even if what you actually say doesn’t directly relate to the issue you’re dealing with. 

The Plan, One Year Later

Three hundred and sixty-five days have come and gone since I first decided to share my story. In that time, I have walked, (and even jogged), over 1,600 miles, lost about 35 pounds and 4 jeans sizes. In short, over the past year, I have taken my life back; fibromyalgia, while still an undeniable part of my life, no longer runs my life.

If someone had told me a year ago that I would make the changes I have, I would have said “that’s simply not possible”. This time last year, I was a wreck, in every sense of the word. Physically, I was in constant pain, over weight and completely exhausted. My emotional state was even worse; I was in the throes of a deep depression, suffering from panic attacks and utterly hopeless about my situation. My marriage had fallen apart and my other relationships were starting to fray as well. I felt completely powerless to stop any of it; I had lost control of my life and I honestly believed that I had no choice in the matter. I had spent so long allowing the fibro to dictate my actions that when my life fell apart, I had nothing of my own to cling to. I felt like a victim.

It wasn’t until I began to seriously contemplate suicide that I realized how wrong I was. There was one thing that I hadn’t yet lost: myself. I am, by nature, a fighter, but I had forgotten that. Somewhere along the way, I had stopped fighting and simply accepted the idea that fibromyalgia was going to run my life. That idea spread through my mind like a weed, choking out any hope or motivation I had. Thankfully, right when I needed it the most, I found the strength I needed to save myself. In that moment, I realized that the only thing stopping me from living my life on my terms was ME.

It was such a simple idea, but it was more powerful than anything I have ever experienced. Using this new understanding, I came up with a plan to heal myself. No more waiting around for someone else to come along and “fix” me, no more feeling sorry for myself. If I wanted my life back, I was going to have to fight for it.

Coming up with my plan was easy, putting it into action, however, was another matter altogether. Not only was I having to work against what my own body was telling me, I had to fight my own self doubt and the doubts of others. Most of my family and friends were incredibly supportive of my new outlook; unfortunately, a few of the people I had expected to be the most supportive turned out to be the most critical. At times, it seemed as if they were trying to undermine my efforts to change, going so far as to plainly tell me that they believed I couldn’t do it and even saying that despite my efforts, they saw nothing worth being proud of.

Typically, this is where people say things like, “I don’t care what other people think of me” or “their words can’t hurt me”. Well, for me, that’s not true. I do care, (probably way more than I should), about what those close to me think about me and I have always been overly sensitive about what other people say to me. Add that to my already delicate emotional state and you’ve got a recipe for a total breakdown. There were so many times that I wanted to give up, so many times that I very nearly did. It took me awhile, but I eventually learned to turn that pain into fuel. I learned to “punish the pavement” rather than myself. After awhile, that pain turned into anger and I used the anger to further fuel my fight. Going through that was Hell, but I see now that those doubts and cruel words only made me fight even harder. So, thank you, for helping me to see you for who you are and for helping me find the strength to get past my own barriers, now please show yourselves out of my life*.

*(For the record, my original statement wasn’t nearly so polite.)

Flash forward to today: I am still here, still fighting and better than ever. I am active, healthy and best of all, happy. More importantly, I can feel the shackles of fibromyalgia falling alway; I am almost entirely pain-free. I do still have occasional flare ups, but they are usually brief and nothing at all like the debilitating attacks that would keep me in bed for days; no more giving up things I want to do because of pain.

I never imagined that I could live without pain as the center of my universe, I never even dared to dream that I might live something like a “normal” life. The success I have experienced over the last 12 months is beyond anything that I could have hoped for; in my own mind, it’s nothing short of magic.

Of course, the problem with magic, is that it is not free; to borrow a quote from Rumplestiltskin, “magic always come with a price, Dearie”. So, what is the price I pay for this particular brand of magic? Hard work and self-discipline. The simple truth is that keeping myself healthy is literally, a full-time job. I have to make sure to stay active and I have to pay close attention to what I eat, every single day. Sure, I have my “off” days, but they are few and far between. I cannot afford to sit on my butt all day and just eat whatever I want to; my body is quick to point out when I’m not doing what I need to.

One of the things that I have learned over the last year is that counting calories is not enough. I’m not even talking about for weight loss, I’m talking about simply maintaining a balanced, healthy diet. My daily calorie budget right now is around 1600 calories; well, 1600 calories of cookies, chips and pizza are not the same as 1600 calories of veggies, fruits and lean protein. In order to keep my system happy, I eat 4-6 carefully controlled meals every day. The amount of thought and effort that goes into my diet alone can be overwhelming, as I find it difficult to come up with different ideas that are healthy, tasty and easily fit into my plan.

On top of that, I have to make sure to keep moving. My body has gotten used to moving and the pain will happily take over if I’ve been sedentary for too long. My goal is 10k steps a day (about 5 miles), which at a normal walking pace for me would take about an hour and a half of solid walking. I prefer to break that up into smaller, easier to manage chunks throughout the day, which like my meals, takes a fair amount of planning on my part. 10,000 steps is a lot, believe me, I know. While I have learned to enjoy walking and being active, I don’t always do it because I want to. I don’t exercise because I feel good, I exercise in order to feel good. There’s a huge difference there, and it’s sometimes hard for people to understand, but I can’t put enough stress on the idea that it is absolutely necessary to stay active even when it hurts because eventually, the activity will make the pain go away.

I cannot escape the fact that I am sick; I know that no matter how badly I want to, there are always going to be things that I am unable to do. For instance, I would love to be able to get back into the classroom and teach again. I know my limitations. I know that I cannot maintain my current level of health (and happiness) AND take on a regular job. I understand that there are many, many people out there who are capable of doing all of these things and more on a daily basis, but I have to accept the fact that I am not one of them. I simply do not have the stamina to do it. Maybe one day, I’ll find a way around it, but for now, my “job” is taking care of myself.

You know what? I am ok with this.

Alone

Maybe it’s just me, but nothing creates a feeling of total isolation quite like pain. It’s 5:38am and I’m not writing this now because I woke up early. I actually haven’t been to sleep yet, thanks to the sharp, surging pains currently taking over the left side of my body.

I decided to move out to the couch since I can’t seem to get comfortable in bed and it didn’t seem fair to ruin anyone else’s night sleep just because my own body won’t cooperate. So, here I am, trapped on my own little private island of misery. The meds aren’t helping, (big surprise there), and to be perfectly honest, the only option I have at this point is to try to ride out the storm by writing it out.

I wager that I’m not the only fibro-fighter out there who experiences this lovely facet of the disease. Despite the overwhelming feeling that I’m imprisoned in solitary confinement, I take comfort in knowing that I’m truly not as alone as I feel right now.

It sounds trite and even a little cliche, but I can’t put enough emphasis on how important it is to remember that no matter how horrible we feel or how terribly bleak things seem, we are not alone. There’s an entire community of fibro-fighters out there, we just have to do what we can to support each other.

By simply clicking the “Follow” button on someone’s blog, or the “Like” button their page, you can let others know that they are being heard. It’s truly amazing how much that one little action can convey. Every time I get the notification that I’ve got a new follower, it reminds me that I am not suffering alone. There are others out there who can relate to my struggle and who can share in my triumphs, no matter how small they may be.

Since I’m awake anyway, I’m going to follow my own advice and send my love to some of my fellow fighters. I hope the rest of you had a better night than I did!

Keep fighting!

Thank you, thank you, thank you!

In case the title didn’t give it away, I’d like to give a huge “Thank you!” to the author of Just Another F-Bomb for nominating my little slice of cyber space for the Liebster Award! I can’t tell you how much it means to me to know that real people are actually out there reading my words; most of us struggle along in silence simply because we feel like no one wants to hear what we have to say. Every time I receive a new comment or link back, I am reminded that I am not alone in this and that my words are reaching, and even encouraging others to break their silence as well.

Like the Versatile Blogger Award, the Liebster, (which means “dearest” in German, by the way), asks that it’s nominees answer a few questions and also nominate others. I’ll be honest, I’ve been incredibly remiss in reading any blogs lately (as well as writing my own, as you may have noticed), so I can’t post my nominees right now, but I will go ahead and answer the 10 questions posed to me by my nominator, Just Another F-Bomb.

  • If you could live anywhere you wanted, where would it be?
    – I haven’t made it there yet, but I think it’s safe to say that I would be perfectly happy to live in Nairobi, Africa; specifically at The Giraffe Manor. I mean, really, living somewhere where giraffes could come and join me for breakfast? How can I possibly resist?
  • What is your favorite vacation spot and why?
    – Key West, FL. It’s absolutely gorgeous and so very relaxing.
  • If you could do any job in the world, what would it be?
    – A giraffe feeder, hands down.
  • Do you have a favorite teacher who inspired you?
    – I had many wonderful teachers over the years, I really can’t choose just one, or even two.
  • Why do you blog?
    –  Writing this blog is my way of shining a light into the darkness; my way of proving that I do not suffer alone, nor do I have to suffer in silence. This blog helps me break the barriers created by the pain and the best part is, it’s not only my own barriers being broken, my words have encouraged others to break their silence as well.
  • If you had a magic wand, what would you use it to change?
    – A magic wand wouldn’t be enough to fix everything that’s gone wrong in this world, so I’m not going to go all serious here. I think the first thing I would do with a magic wand is shrink a giraffe down to about 3 feet tall, that way I could keep him as a pet 🙂
  • Do you dress up for Halloween?
    – Usually. The last time I dressed up for Halloween, I went as Aphrodite.
  • What was your most memorable day and why?
    – Again, tough question. I’m going to go with the day I rescued my cat, Sammy. It was the day before a major hurricane swept through my area and there were some kittens living in a small ditch next to a near by 7-11. In an attempt to save them from the storm, I went down there with some cans of cat food and a large animal carrier. I managed to lure three kittens in, but before I could shut the door, two of them escaped, leaving me with one very angry orange ball of fur. It was a rough start, but he eventually came around and was one of the best cats I’ve ever had.
  • Kids or pets, which do you prefer?
    – As I’ve never had any children, I’m going to say pets 🙂
  •  How long did it take you to complete the Liebster “task”?
    – About an hour, give or take.

I just want to reiterate how extremely grateful I am for all of the support and encouragement that I’ve received. Thank you to everyone who has commented on a post or emailed me and also to all of you who decided to click “follow” button; it means so much to me to know that my words are being seen.

The Yoga Verdict

About a month ago, in “The Plan, update #4”, I made a big deal about wanting to change my workout routine and giving yoga a try. I’m rather ashamed to admit it, but after publishing that post, I kind of ignored it. Ok, I seriously ignored it. The DVD arrived, I popped it in the player and bored myself to tears in about 5 minutes. So, I turned it off and didn’t give it a second glance until today. I could take the easy way out, say that the DVD was just too boring for me to suffer through and that it was a waste of money, but that’s not true. Yes, I was bored by the slow pace of the exercises, but that’s because at the time, I was looking for something more vigorous. I moved onto Jillian Michaels’ Thirty Day Shred and found it infinitely more satisfying.

The problem is, being in the middle of a nasty fibro flare makes Jillian considerably more difficult. I’m still trying to stick to my routine, but I’m finding it harder and harder to recover. When I woke up this morning, I was so stiff I could barely move. I started having flashbacks to The Wizard of Oz, when Dorothy and the scarecrow meet the tin man… If I had thought that spraying myself with WD-40 would have helped, I’d have done it in a heartbeat. Which brings me back to the previously discarded yoga DVD.

One of the most important things that I have learned since starting my get healthy plan is that once I get moving, I feel better. My mood improves and the pain doesn’t seem as a bad. The hard part, of course, is getting myself to move in the first place. Let’s be serious here, when we’re in pain, the last thing we want to do is move. Unless of course that movement results in a comfy pillow and some chocolate. Thankfully, I have a new carrot dangling in front of my face: a little bit of movement = guaranteed relief. With that in mind, I finished my morning cup of tea (green tea!) and faced Ms. Barbara Benagh once again.

I started out with her 20 minute Sun Salutations routine, and let me say right now, this time it was not boring. The slow, gentle pace was exactly what my muscles needed. By the end of the routine, I was feeling energized and <gasp!> limber. It actually took effort not to start squealing like a four-year old who’s just been let loose in Candyland. No, I’m not exaggerating. 🙂 As a matter of fact, I felt so awesome that I decided to try a second twenty minute routine, Strength & Balance. Both routines challenged my strength, flexibility and endurance, but gently. I didn’t feel rushed and throughout the routines, the instructor offers helpful (non patronizing!) advice on how to modify the poses if you need to.

At this point, I feel positively amazing. Part of that is because I’m just proud of myself for doing it and even more proud that I was able to follow both routines the whole way through, something I wouldn’t have been able to do a few months ago. The cherry on top is that I physically feel better; my muscles are limber again and while they are still a bit sore, it’s at a much more manageable level.

Of course, as with any new exercise, the real test is still to come: how will I feel tomorrow and will I be able to get the same results consistently? I certainly hope so, but I’ll keep updating as I go along.

THE Plan and the flare up

I have good news and bad news. Since asking which one you’d like to read first is pointless, I’ll start with the bad news that way we can end on a high note!

Ok, the bad:

As predicted in my last post, I am in the middle of a fibro flare. I was really hoping that it was just a fluke or a rough patch, but since it’s gone well past the week mark and shows no sign of stopping, I’m officially calling it a flare up. My trigger points are seriously unhappy lately, to the point that some of them are actually visible to the untrained eye. They look (and feel) like marbles under my skin. Thankfully, they tend to come and go, so they’re not constantly exposed, but they are unpredictable.

For those of you who are unfamiliar with trigger points, here’s an overview.

Trigger points (some times called tender points) are one of the main ways doctors diagnose fibromyalgia; they stand you up and literally poke specific spots on your body to see if they cause an unusual amount of pain. There are 18 points doctors look for and if 11 or more them cause pain, congratulations, you have fibro. Here’s a picture to show the official 18 points they check:

The number of spots that actually hurt can vary widely from person to person and time to time. For me personally, I generally have 16 out the 18 active at any given time. Usually, these trigger points are only painful when you touch them, if you’re really lucky, only when you apply a bit of pressure.

During a flare up, all bets are off. Like I said earlier, my trigger points become inflamed and actually stick up out of my skin, when they’re particularly pissed off, even wearing a t-shirt can be extremely painful. It feels as though I’m being stabbed in the back with a white-hot poker, complete with that radiating pain you get from a nasty burn.

The only thing that I’ve found thus far that helps with trigger point pain like this is having trigger point injections. Basically, a doctor jabs a needle into the offending spot injecting a tiny amount of anesthetic. Even with the anesthetic, it’s a breathtakingly painful experience, so it’s only something I do as a last resort. Let’s just say that right now, I’m seriously considering it. 😦

Along with my trigger points being angry, my sleep is all kinds of messed up. The issue is that I’m having trouble falling asleep and when I do finally pass out, I tend to sleep so heavily that I don’t move and wake up feeling stiff and disoriented. It’s also taking a lot longer to shake the morning fog. Usually, I wake up, take my morning meds and I’m good to go in about 20-30 minutes; lately, however, it’s taking 45 minutes to an hour, even after taking my meds with a full glass of cool water. For the record, I’m not complaining. I’ve suffered through days at a time with no sleep whatsoever, so I’ll happily take the sleep I can get even if it’s not great.

On the plus side, I’m still breathing! 🙂 That is always a good thing, because it means there’s still hope for things to get better. (I know, sometimes I’m so optimistic I make my own teeth hurt.)

I did take a few days off from exercising, but since it made absolutely no difference in my pain levels, I started up again. Before the flare up, I had started doing Jillian Michael’s 30 Day Shred every other day. I’ve thus far done 10 days of level one, and I am amazed at the results. Not because I’ve lost any weight, but because of how quickly my endurance has been improving. Last week, I astounded myself by jogging 2/3 of a mile. Yesterday, I jogged a full mile, 1.1 miles, to be exact. Again, I didn’t jog all of it at once, I broke it up into segments of about 1/4 mile at a time. As if that wasn’t amazing enough, all the jogging brought my 5k time down by about 5 minutes! Back in June, I was thrilled because I walked 5k in 50 minutes, now, just over a month later, I can do it in 45:05. I’ve met my interim goal, now on to the next phase: 5k in 40 minutes.

Do I feel terrible? Yes. Does that mean I give up on my goals? No. Absolutely not.

 

More things never to say to some one who has fibromyalgia

Seriously people, what’s with all the negativity? I feel like I’m swimming in it lately. There are just too many people around me who seem to be waiting for me to fall flat on my face. I keep hearing things about what I can/can’t do, or what I can expect out of life. The ridiculous thing is, they don’t even have fibromyalgia; they have a “basic understanding” from what they’ve read on the net or have heard from other people who don’t have the disease either.

With that in mind, I’ve got a few more things to add to the list of things to never say to someone battling the invisible menace.

  • “I know someone who has that, their life is miserable!” OR “I know someone who has that, but it’s nothing like what you’re describing.”

    Rule #1 about fibromyalgia: it’s different for every single person that has it. That’s why it’s so hard to diagnose and treat. No two cases are the same, they may have similarities, but you cannot compare them. Just because things went one way for one person does not mean they will be that way for anyone else. Part of the reason things are so different from case to case is simply due to the way people react to having it. True, at some point most of us go from being angry to being devastated (or vice versa) and then eventually we accept that we have to live with it. How you decide to live with it is entirely up to you, and will undoubtedly have some impact on how the disease affects you.
  • “It’s only going to get worse as you age.”

    REALLY?! Think about it for a second, does anything health wise actually improve as you age? Unless you’re Benjamin Button, EVERYTHING gets worse as you age. Your metabolism slows down, your joints wear out, your memory starts growing holes in it, your hair falls out and you get all wrinkly. Sure, old age probably isn’t going to help the fibromyalgia any, but it shouldn’t be a surprise to anyone that it might be worse in your sixties than it was in your twenties. The upside is, there is research being done and eventually, they will come up with something that helps.
  • “You can’t possibly expect to have a ‘normal’ life with this disease.”

    Actually, yes I can. Not only do I firmly believe that a person can do anything they put their mind to, my belief in myself is unshakeable. I know myself well enough at this point to be able to say with 100% certainty that if I want to do something, I will. True, having fibro adds about 50 pounds to the weight of the baggage I’m lugging around, but it only makes me that much stronger. I’m not saying that I can wish the disease away, or that if I ignore it, it doesn’t exist. Short of some miracle cure, I will always have fibromyalgia. I know that. However, I also know that I am creative enough and flexible enough to find a way to do anything I want to. That’s just me personally, I’m certainly not saying that everyone who has fibro is going to be able to do the same, but I think many people would be surprised if they tried. One major thing to keep in mind is that the goals I have for myself are realistic. When I say I can “do anything I want to” I’m not implying that I could be an astronaut or that I want to climb Mt. Everest.
  • “What happens if your plan stops working and you start feeling bad again?”

    Eventually, my body will get used to the endorphins from exercising, and losing weight will only help so much. I’m sure that at some point, I’ll have to go back to the drawing board for a new way to fight the pain. I started this experiment with the diet and exercise with no real expectations of success. I know now that it is possible to alleviate the pain. I’ve also learned that the way I react to the pain is the most important factor in how the fibro affects my life. I can’t always stop the pain, but there’s no rule that says I have to be miserable about it. Ok, so I have to spend a day or two or three in bed; as soon as I’m able, I’ll get back up. In the meantime, I can read a good book, watch a new movie, write a new blog post… Yes, it sucks to be forced by your own body to stay in bed all day, but there are worse fates. I’ll take my victories where I can get them, as long as I wake up, I win.
  • “Oh, you’re just in an ‘up’ phase right now, you’ll have a ‘down’ swing eventually. You won’t be able to fight it forever.”

    Want to bet? I didn’t call this blog “Fighting Fibro with Fire” just because I thought it sounded good. I am determined to fight this until the day I die. I know that there will be setbacks, and I know that I will have bad days, but as long as I breathe, there is always tomorrow. I have been in the dark, I have seen what rock bottom looks like and it terrified me. Mark my words: I will not ever go back there again. I found the strength to pull myself back from the edge of the abyss and I know without a shadow of a doubt that I am strong enough to keep myself from going back.

Part of me feels that these lists shouldn’t be necessary, that not saying these things to people with chronic illnesses should be common sense. Obviously, that’s not true, seeing as the only reason I am able to compile these lists is because people have said them to me. Initially, when I started writing this post, I was angry and ready to tell the people who said these things to “go to Hell”; after typing all of this up, I find that the anger has dissipated and all I feel now is determined. I am determined to prove these statements wrong and I am certain of my success. All I want to say now is, “hit me with your best shot”.

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