Where’d my spoons go?

I am so exhausted lately that I feel like I can barely function. I can’t explain why I’m so tired; I’m sleeping better than ever, but my batteries are just not re-charging. I’ve always had an issue with energy levels and poor sleep; I was diagnosed with Chronic Fatigue Syndrome around the same time they diagnosed the Fibromyalgia. Most of the time I can manage, but then I get stuck in these cycles of exhaustion and I start to wonder why I even bother fighting it. All I want to do anymore is sleep. I can get 8, 9, even 10 solid hours of sleep and I still wake up feeling like I’ve been up for 48 hours straight. Before I got off the medications, the answer was to simply throw more pills at the problem until something worked. Now that I’m off of them, I don’t have any choice but to push through it. 

It’s not depression. Aside from being tired, (and frustrated from being constantly fatigued), I’m happier than I have ever been; no dark thoughts, no mood swings, no appetite changes… It’s also not a Fibromyalgia flare up. I’m not pain free, but the pain is intermittent and mostly manageable. Somehow, I’m still managing to go to the gym and workout, but anything outside of my normal routine is just not happening right now. Every day, I am counting and recounting my spoons like a miser because I just can’t be sure I’ll be able to do the things I need to do. I am not normally the kind of person who plans their days, but lately I don’t have a choice. As it is, I’m having more trouble focusing on tasks, I’m constantly forgetting things and I can’t sit still for very long without nodding off, which is not only immensely annoying, but makes things like driving very difficult. I find myself getting grumpy for no good reason and I hate it. 

This particular cycle of exhaustion has been going on for at least 2-3 weeks now and there’s no end in sight. It’s wearing me down, it may not feel like this is a depressive episode now, but I worry that I’m heading that way. Getting out of bed in the morning is a chore. Going to the gym is getting harder and harder. The important thing is, I am still going. I’m still working through the Couch to 5k program and I’ve started lifting weights. It takes a dose of pre workout and usually a cup of coffee, but in the end, it’s worth it. I know that if I stop now, it will be even harder to start again. I’m hoping that the exercise will help me get break the cycle, so far, it doesn’t seem to be working, but in the end it’s worth it. If nothing else, I always feel better after a workout. 

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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!

The Plan 2.0

I cannot believe  it’s been more than a year since my last post. Wow. All I can say is that it has been an amazing year, it wasn’t all good, but despite the horrible parts, this last year contained some of the best moments of my life so far. I got married to an absolutely amazing man in November and I can say without any doubt that it was the happiest day of my entire life. 


He was there to help me through my last medical disaster and without his love and support, I would not be able to announce that I am 100% free of the fibromyalgia meds!

It took several months, but I took my last prescription drug, (for the fibro, at least), in February of this year. What a relief that was! I wish I could say that I feel 100% better without all of the drugs, but the reality is, I feel much the same. The main difference is that I no longer rely on a prescription to get me through the day. I still have the pain, fatigue and insomnia that are the hallmarks of fibro, but I’ve found that they are easier to manage without the “help” of prescription drugs. I have discovered that 5-10mg of melatonin right before bed is just as effective at getting me to sleep as 2mg of Xanax and 100mg of Seroquel, (combined!), ever were. No, I don’t always stay asleep, but the prescriptions couldn’t deliver that either. The only thing the prescriptions could ever be relied on to do was to make sure I was a groggy disaster in the morning, whether or not I got any sleep. In order to even wake up, I had to start my day with 40mg of Adderall and 150mg of Wellbutrin. 

The drugs themselves have changed significantly over the years, but for the last decade or so, the basic formula has remained the same: drugs to help me sleep and more drugs to help me shake off the effects of the sleeping pills. I started tapering off of them in November, (with the guidance of my pain management team, please don’t try this on your own!!), and I am so happy to be able to say that I am done with them all. 

The downside is that the side effects of weaning off the drugs left me a bit of a mess. I fell out of my workout routine all together and have put quite a few pounds back on. I have not regained all of the weight I lost over the last few years, but it’s close. Yes, I got off the meds back in February and it has taken me this long to realize I need to get my butt back in gear. The important thing is that I’m ready now. I could list off the myriad of excuses I had for not being as active as I had been, but I won’t. They no longer matter.

Today, the Plan, V2 goes into effect. I’m back! 

Right now, my main goal is to get back into an exercise routine. I am not going to focus on losing weight, I just want to get back up to my peak level of activity. For the moment, that means walking, (lots and lots of walking), but I plan to start doing the Couch to 5k training routine in a week or two and get back to racing again by the end of the year. As before, I have to take things slowly, especially now that I don’t have any medications to fall back on if I trigger a flare up. However, this time around, I have the benefit of already knowing that I can do it. Shamrock 2017, here I come!!

Getting used to pain

One of the ‘benefits’ of fibro is an increased pain tolerance. I’ve had a number of small procedures over the course of this year where the warning that I have fibromyalgia has had to be given, only to have the comment back “you must have an incredible pain tolerance”, after breezing whatever unpleasantness that has […]

https://fibrofoggyness.wordpress.com/2015/09/21/getting-used-to-pain/

Keeping positive through pain

When we’re sick or sore, most people will go round like a bear with a sore head. When you find yourself in constant pain and dealing with the never-ending list of symptoms that come packaged with conditions like ME/CFS and Fibromyalgia, you also find that you can’t go round grumping and moaning at everyone and […]

https://fibrofoggyness.wordpress.com/2015/09/28/keeping-positive-through-pain/

My fibromyalgia diagnosis

My fibromyalgia diagnosis was in 2008. I’d almost call it a “diagnosis” because the condition seems so poorly understood and it’s hard for me to accept it as a true diagnosis. I know it’s for real; it’s just frustrating to have something so hard to understand. I had a list of symptoms consistent with fibromyalgia, […]

https://snowdroplets.wordpress.com/2015/09/18/my-fibromyalgia-diagnosis/

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/

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/

A Conversation

Wake up, Ella. You’re letting life pass you by. Remember when you said you wouldn’t do that? You wouldn’t lose sight of the bigger picture? Gone is the confidence. Gone is the positivity. Gone is the girl that believes she can weather anything with a good attitude.  Remember when you wrote about the little things? […]

https://sickandsickofit.wordpress.com/2015/08/04/a-conversation/

The Painful Reality of Fibromyalgia (personal thoughts and feelings)

My Personal Experiences When I was first diagnosed with Fibromyalgia, I felt like an outcast.  I felt like “WHY ME”.  I felt like I had a plague. I felt like who would ever want me with all of this pain.  I had to get all these thoughts out of my head so that I could […]

https://thesilenceofpain.wordpress.com/2015/08/14/the-painful-reality-of-fibromyalgia-personal-thoughts-and-feelings/

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