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!

Advertisements

Remember the Truth

Isn’t it crazy that you write the truth and then forget how it feels? You believe in looking at things as beautiful, but you simply don’t remember to. Because bad monsters clout everything, because you can’t remember what it’s like to feel like yourself, because sadness is so overwhelming while happiness is so fleeting. But […]

https://sickandsickofit.wordpress.com/2015/08/23/remember-the-truth/

We are not alone

I have decided to start republishing posts from some of the blogs I read when I’m not posting my own writing. Not because I’m being lazy or I’ve run out of things to say, but because I find that one of the things that helps me the most is knowing that I am not alone in dealing with chronic illness. Having fibromyalgia or any chronic condition isolates us. We don’t want to bother others with our troubles and before long, we’re all alone in our own little bubbles of misery. I think it’s important to take the time to hear what others have to say and I am often pleasantly surprised when I do. It’s comforting to me to know that I am not the only one suffering from certain symptoms or feelings. I hope that by sharing some of what I find will bring comfort to others as well. 

Looking up

I know that my last couple of posts have been downers. It really has been a rough summer, but it’s not all bad! I put a lot of effort into finding the good in a situation, so I wanted to take some time to talk about some of the good things that have happened over the last few months. 

For starters, I got engaged!! This happened back in May, so I’m more than a little late in announcing it, but it’s definitely been the highlight of my summer. As awful as this summer has been, there is one definite positive to come out of it: I have absolutely no doubts about the man I’m marrying. We’ve been through a lot since we got engaged and it’s only made us stronger. Even if the road gets rough, I know that he will be right there beside me every step of the way. I know that if I stumble, he’ll be there and when I regain my wings, he’ll soar right along with me. If there is a better feeling in this world, I haven’t found it. The wedding is set for early November and I could not be more excited. 

Of course I couldnt’t leave out the ring!

I’m also excited to get back on my feet. Yesterday, I got the official clearance from my doctors to get back to normal. (Yay!) It’s going to be a long road and I know it won’t be easy, but it’s nice to feel like I have at least a modicum of control back. I may be a house cat/couch potato by nature, but I’ve managed to change some of those tendencies and it’s been incredibly difficult to be forced into doing nothing. 

I’m looking forward to the challenge of getting myself moving again and I hope to have more good news to report soon! 

Here’s to the hidden paths

One of the ways I combat the pain from fibro is through art. I don’t react well to pain medications, so I do what I can to get through the bad days, which sometimes includes losing myself in my art. I’ve never really considered myself as an “artist”, I think I’m more of a “creative gypsy” (yes, I made that term up), since I tend to wander from medium to medium. Pastels, water colors, crochet, cross stitch… I’ve tried my hand at a wide variety of hobbies in my quest for creative expression.

Lately, I’ve been painting, which is something I haven’t done in nearly two years. This isn’t unusual for me; I’ve been known to go a year or even several before picking a hobby up again. This time, though, it’s different; I didn’t pick my brush up in order to escape the pain. I picked it up because a two year old boy asked me to.

I guess I need to fill in some back story here. In order to keep myself from becoming a grumpy old troll again, I babysit, when I can. I’ve been watching this little fella for about a year now; I’ve seen him grow from a toddling baby into a rough and tumble little boy, and I have loved every minute of it. He’s at that funny age where children latch on to something and obsess over it. They want to watch the same movie, hear the same song or read the same book over and over and over again, until you think your head will explode if you have to endure it one more time…

Well, D’s obsession happens to be construction equipment. This kid can, at two years old, name more heavy machinery than anyone I’ve ever known. As a matter of fact, he often talks about machines that I’ve never even heard of.

We often color or draw together when I watch him and he always asks me to draw things for him, a doggy, a kitty… Usually it’s just simple stuff, which is great, because I really can’t draw, (there’s a reason all of my art up to this point has been abstract). So, anyway, not long ago, D suddenly asks me to draw an excavator. My mind went totally blank. Eventually, I managed to draw a box with wheels and an arm with a scoop on the end of it, D approved and the mission was accomplished.

Not long after, D’s mom told me that because D loved that (hideous) little drawing so much, she wanted to put it on canvas or something to hang in his room. It was at this point that I decided I needed to at least try to come up with something better; I really didn’t want my name attached to that awful doodle. So, I set out to draw the best darn construction equipment that I possibly could.

That, ladies and gentleman, is how my very first commissioned art work ended up consisting of a bulldozer, an excavator and a dump truck. It’s certainly not the kind of work I dreamed I would sell, but if I’m honest, I never expected anyone to ever want to pay me for my scribbles.

As it turns out, I can draw! Who knew? I’ll never be asked to do sketches for an anatomy text book or anything, but I bet I could illustrate a children’s book. How cool would that be?

I realize that on the surface, this post has basically nothing to do with fibromyalgia or dealing with a chronic illness. I shared it because I wanted to share what I’ve learned. I know I’m always talking about fighting on and not giving up, but this experience showed me that I had, in fact, given up on some things: my dreams. I’ve been so focused on getting healthy and beating this disease that I couldn’t see anything around those goals. If anyone ever asked me what I would after I achieve these goal, I wouldn’t know what to say. I’m not saying that those aren’t good goals, they’re still at the tippy top of my priority list, but I’ve come to see that I can be more.

A two year old child took me by the hand and showed me a path for my life that I hadn’t even seen. He has made me realize that there is always more to learn and that just because our original dreams are no longer possible, we should never stop searching for more.

IMG_2445.JPG

IMG_2443.JPG

IMG_2441.JPG

IMG_2442.JPG

For a friend

If there is one thing I have learned, it’s that to live is to fight. Each of us has their own private battle to fight and most of us silently carry on that fight every single day. The primary reason that I started writing this blog was to break that silence. I needed to get out of my own head; I honestly didn’t care if anyone else ever read my story, I just needed to get it out there.

I quickly discovered that my words were not just reaching other people, but were actually helping them as well. Through comments and e-mails, I have learned that I am not alone in my struggle and that by breaking my silence, I have inspired others to seek help or make changes in their own lives. Sometimes, simply knowing that you’re not alone in your fight makes it easier to bear.

On that note, there are a few more walls that I would like to begin breaking down. My hope is that sharing this part of my journey will help others see their own paths more clearly.

Since I started writing this blog, I’ve spent a lot of time talking about the effects exercise and weight loss have had on my battle with fibromyalgia. This blog was never meant to be about the weight loss itself, but about how losing the weight helped my condition. I have no intentions of changing that, however, a recent conversation with a very dear friend has made it obvious to me that I have left out some details that are important to my story.

I have been overweight my entire life. Throughout my childhood and adolescence, I was constantly teased and ridiculed about my weight. I hid my self consciousness behind a wall of books, which did nothing to help the problem. When I was diagnosed with poly cystic ovarian syndrome, at the age of 16, my doctor told me it was due to my being overweight and that it was possible I might be in the early stages of type 2 diabetes. In the course of an afternoon, my weight went from a minor inconvenience to a major issue.

My parents did everything they could to help me. My mother somehow managed to show her concern about my weight without ever once making me feel embarrassed about it, (which is a truly amazing feat when dealing with a teenager). We went to nutrition counseling, the whole family went to the gym together, we started riding bikes together… Nothing helped.

I ended up going to an endocrinologist who prescribed a variety of prescriptions to help control my insulin levels, but he seemed more concerned that I would develop “abnormal facial hair” than anything else. I guess his choices in drugs helped, as I never did develop the mustache he always asked about.

My weight stayed basically the same until I was diagnosed with fibromyalgia. What my rheumatologist failed to mention when he began prescribing medication to treat the fibro was that nearly every drug they used at the time had a side effect of weight gain. I gained about 60 pounds over the course of a year, putting me more than 100 pounds over what is considered a “healthy” weight for my frame. Suddenly my endocrinologist started using words like “morbidly obese” and prescribing actual weight loss drugs.

The weight loss drugs had very little impact on my weight. I was at a loss. I tried Weight Watchers, diet supplements, going to the gym and various other diet plans, all to no avail. To be honest, I just sort of gave up. By making changes in my eating habits, I was able to beat the insulin resistance and eventually my endocrinologist actually said “unless you’re interested in weight loss surgery, there’s nothing else I can do for you”.

I left the doctor’s office that day feeling angry and completely hopeless. I was already battling fibromyalgia and I felt like I was doing everything I could to lose weight. Looking back on it now, I can see that while I was trying to lose the weight, my heart just wasn’t in it. I was trying to lose weight because everyone was telling me I needed to, not because it was what I wanted. I’m not saying that I wanted to be fat, I didn’t, but I wasn’t ready to put forth the amount of effort required to do anything about it.

Skip ahead about a year or so, to 2007. I finally found a combination of medicines to help me manage the symptoms without putting on extra pounds. In fact, the new meds actually helped me drop around 35 pounds, but only because they literally killed my appetite. In truth, it got to the point that I had to be reminded to eat. There were several occasions where I nearly fainted from not eating, simply because I was never hungry. It took some time, but I did eventually get things ironed out so that I could manage my symptoms without inadvertently starving myself.

Through sheer luck, I managed to keep my weight stable over the next few years, even after the fibro forced me to stop working altogether. In early 2012, my husband and I decided we’d had enough of being overweight and went on a joint diet. If I’m completely honest, I only started the diet in an effort to support him; I had already resigned myself to being overweight and firmly believed that there was nothing I could do about it.

We changed our eating habits by monitoring portion sizes, choosing healthy alternatives to junk food and counting our calorie intake. We tried to become more active, but that was where I fell off the wagon. I didn’t realize it at the time, but I was also battling depression, which kept me from being the partner I should have been. Over the next 4 months or so, I lost a grand total of 15 pounds; not bad, considering I was in full blown slug mode. At this point, I hit one of those plateaus dreaded by all dieters, and I just didn’t have the energy to cross it. Thankfully, due to our diet changes, I was able to keep the weight off.

Fast forward to my very first blog post in May 2013: I finally found the drive I needed to pull myself out of slug mode.

I truly wish I could explain how it happened. All I can say is that something in my head shifted and suddenly I just knew that I could become a better me. I woke up one morning and simply decided that I was going to change things. I decided to lose weight in order to feel better, not because someone else told me I needed to or because I wanted to look good in a swim suit.

For me, that was the key. I needed to consciously decide that it was what *I* wanted. Once I did that, the determination, the will, to make it happen was just there. I didn’t have to struggle to get started, I just did it. Yes, some days are harder than others and some days I have to fight to keep going, but I know in my heart that I’m doing it for me, and that is what gives me the strength to carry on.

For those of you out there who are struggling to lose weight, take a second to think about why you’re doing it. Are you doing it to please someone else or is it what YOU want? The mind is a powerful thing, you’ll be amazed at what you can accomplish when you decide to do it.

20140306-133804.jpg

I hate clowns.

You would think that after dealing with something for nearly 13 years, you would be completely familiar with it. For instance, Fibromyalgia has been a part of my life for, you guessed it, nearly 13 years. Yet, just today, I discovered a new, or at least new to me, symptom: Raynaud’s Phenomenon. I have never been a fan of the cold, in my world, cold = pain. However, today, things got so much worse.

We had a huge snowstorm here last night, which left something like a foot of snow outside. Even with my aversion to the cold, I can’t resist that kind of potential for fun, so I got bundled up, (literally, two or three of everything), and went out. Within about 5 minutes, the tips of my fingers started to tingle. I wondered about it, but ignored it, figuring my body would eventually adapt. Finally, after about 20 or so minutes outside, I couldn’t take it anymore. By the time I got inside, the pain in my fingers was so bad I had tears in my eyes; on a scale of 1 to 10, this was a 12. Thinking I had somehow managed to get some sort of mild frost bite, I de-gloved and noticed that my finger tips were white, with a hint of blue at the base of my nails. Ok, no need to freak out… Let’s just try to get warmed up. I ran cool water over my fingers. It felt HOT. Like, scalding, except that when it hit my palms, I could tell that it was, in fact nearly ice-cold. It took a while, but I was eventually able to (SLOWLY) turn up the temperature of the water enough to get my finger tips back to something resembling normal.

That was nearly three and a half hours ago, and my finger tips are still pale and tingly. Not quite numb, but definitely tingly. *Side Note: I know that Google is not necessarily the best place to go looking for answers, but #1, I am, for all intents and purposes, (except serious emergencies), snowed in and #2, I have previously come across several articles on Raynaud’s Phenomenon and it’s relationship to Fibromyalgia.* So, I did some research online and found that not only is Raynaud’s very common in people with Fibromyalgia, Lupus, and other related diseases, it can be “unmasked” as a symptom by weight loss… Suddenly the pieces fit.

I’ve been “whining” for months that my weight loss has made my cold tolerance even lower than it was to begin with. During that time, I have noticed my fingers, toes and lips turning blue after being out in cooler weather, (basically anything below 60 degrees). I blamed it on the weight loss and continued on my merry little way. Upon closer inspection, it would seem that my inability to tolerate the cold was quite possibly part of Raynaud’s Phenomenon peeking through the veil of other symptoms. My weight loss, which is at a total of 80 pounds since 2006, has simply moved the curtain aside and allowed Raynaud’s to poke it’s ugly little head out.

Seriously, why is that every time I feel like I’ve got a handle on things, something else has to pop up? I know that things could be so much worse and I know that there are many, many other people out there who have been dealt an even more wretched hand than mine. I just find the whole thing so disheartening sometimes. It’s really hard to stay positive and upbeat when you feel like there are evil clowns waiting to jump out at you at every turn.

Ok. I am done whining about it. In all reality, this doesn’t change anything. The only thing that has changed is that I now know the name of another symptom. As appealing as hiding in a dark, (warm!), corner might sound, it’s not going to happen. I am going to focus instead on all of the wonderful, amazing and totally awesome things I have in my life, like: love, friendship, shoes and chinchillas.

“Just keep swimming”.  

100

 

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!

Happy New Year!

I can’t even begin to tell you how thrilled I am to be able to say “Happy New Year” and actually mean it. That’s not to say that I wasn’t happy last New Year, but it’s not the same kind of feeling. Last New Year, I was surface happy; the kind of bliss that comes from pretending your problems don’t exist. This year, however, it’s more of an all-encompassing kind of bliss. 2013 was, for me at any rate, a total train wreck; especially the first half of the year. I did manage to pull myself together there near the end and I am able to start 2014 with a clear mind and a light heart.

I’m not saying that all of my problems have been magically solved, (I wish!), but instead of ignoring them, I have faced them head on and found that they’re not nearly as bad as I had originally believed. It’s like those monsters you used to see in the dark as a child; once you turned the light on, you could see that instead of a snarling, child-eater, it was simply a jumble of toys/clothes and that all you had to do to defeat the “monster” was clean up your room. Not a pleasant task, but certainly much less hazardous than having to actually fight off a creature with sharp fangs and tentacles!

This time last year, I felt sure that my world was ending and that my life was going to be utterly ruined. While it’s true my world as I knew it did in fact, end, my life is far from ruined. I found the main source of the negativity in my life, which as it turns out, was myself, and I then I found the strength to make the changes I needed to make. Once that ball was rolling, I was able to cut out the people in my life who were fueling my negative outlook. My friends list may be a bit shorter, but at least I can say that it only contains people who love and respect me for being exactly who I am.

Happy New Year, everyone! I hope you make your 2014 a great one!

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.

 

Previous Older Entries

Blog Stats

  • 5,386 hits

Top Posts & Pages