This is one of those rare “Life ‘n Stuff” posts – so feel free to skip it if you’re here for the decor and general library stuff. Seriously – you won’t hurt my feelings.
I actually debated for a few weeks on whether or not to address what was going on with my health on my blog. But then I read the amazing Jen’s post about her agoraphobia on Epbot, and I thought that through sharing my struggles, I could maybe help someone else out there going through a similar struggle to my own. I also think that this is a form of therapy for me: getting it out there so it feels less like an issue.
About three years ago, I had several health setbacks: I had four consecutive bouts of strep throat and then within a month or two I came down with a terrible case of mono.
When I say it was terrible – it was terrifying: both my spleen and liver almost ruptured. After surviving that, I never felt good. I put on 70 pounds and felt like I still had a light case of mono. I tried working out again (prior to my illness I was a lean-mean workout/running machine), and the workouts seemed to sap my strength vs. invigorate me. I would also radiate heat like a furnace.
I could break down the next two years where I struggled to live an okay life, but then this post would be five times as long. So, to escalate it even quicklier: I changed doctors and she discovered I had hypothyroidism. She ignored some new symptoms (all over body pain and exhaustion), and old symptoms (my overheating, which made no sense with hypothyroidism), and put me on a crazy diet. I felt worse.
I found a new doctor and he adjusted my medications, put me on some pain pills, but then the pain came back worse than ever. He then sent me to a rheumatologist. And after chatting a few minutes, then poking/prodding me a bit, he had a diagnosis for me: fibromyalgia. He called me the poster child for fibromyalgia – between possible triggers and my symptoms, he could check off “yes” to almost every single one.
It was a shock to get my diagnosis, but it was also a HUGE relief to know what was wrong and that it wasn’t going to kill me. However, it was likely a life sentence of pain and fatigue being given to me. Only around 25% of people with fibro go into remission – not great odds, but by golly, I’m going to hope that I’m in that quarter-percentile group.
I also have to say that I’m extremely lucky that it took less than a year from when my fibro truly flared to when I was diagnosed. Many patients go for years and years and from doctor to doctor doing tons of tests to eventually get to a proper diagnosis.
The other thing I’m very grateful for is that I have this during a time when fibromyalgia is acknowledged as real, and not just “in your mind” in the medical community. I think that if a doctor had told me that the pain was in my mind, I would have tried to get their license pulled. All-encompassing/debilitating pain during one of the happiest times in my life being all in my mind? Not so much.
So, I’m still figuring out how to manage my new reality. My mother, who has a different chronic condition, has been such a huge support and teacher in terms of handling something like this. Thankfully, I also have an amazing job filled with amazingly supportive people. I wrote a frank email to everyone explaining what was up with my health. And since then, if I’m doubled-over in horrible pain (all it takes is one joint in one finger to flare – which my pain flares feel like the repeated full impact of the body part getting slammed in a car door for a minute or so), then whoever’s nearby makes sure that I’m okay, and that the library keeps functioning normally.
What things would I say to someone going through uncertain health issues?
Trust yourself. Don’t go crazy on “web doctor” sites and freak yourself out. I always suspected something else was wrong beyond my hypothyroidism. I actually said to my newest doctor “this is what I would imagine fibromyalgia would feel like” over a month before my diagnosis.
Also, find someone or a group of someones to support you. My family was a great help during this time, but Bruce was my constant helper/cheerleader. I tend to err on the side of being stoic, and he’s really good at seeing through that wall I put up (and then gently/considerately nudging at its foundation).
And, of course:
General notes about what’s helping me with this syndrome (that might help you if you’re in the same chronic boat):
- Tai chi, tai chi, tai chi! I felt immediately better after doing Gaiam’s AM Tai Chi (and no, they are not paying me for this endorsement). I actually was questioning if I’d taken my Tylenol the first morning that I did it – and that was amazing. Tai chi is like a moving meditation – it’s wonderful. I’ll be getting a few more DVDs and I’ll be sure to update this post on whether or not I like them too.
- Yoga’s good too, but it doesn’t have the same effect on me. But with everything I do in terms of working out, I look at it as a necessary medication. I do it, and I usually will feel better. I don’t do it? I’m not going to feel better.
- Meditation. Stress can be a trigger for flares, and so I’ve begun practicing more consistent meditation. I bought several cds (neither one is worth mentioning here) that mainly focus on stress relief and breathing. They do help some, and breathing is one way that can help me through a sudden spike in pain.
- Visualization and other bizarre techniques. One medical paper I read suggested that patients with fibromyalgia should view their energy as pennies and that we have a daily piggy bank to invest those limited pennies in. This has really helped me determine what’s worth my energy every day. Is it worth running around like crazy to get the reshelve cart reshelved? Usually the answer to that is no – I can take my time, and if it doesn’t get taken care of today, then there’s always tomorrow.
(^^^super-ultra-nerdy Doctor Who reference – sorry non-Whovians)
- In terms of my personal bizarre technique: many times when I’m aching or there’s a body part that I can tell might start acting up, I begin talking to it in my head. Usually with cartoon voices, or other famous actors. One of my favorites is a variation on Madeline Kahn’s “burning” monologue from the movie Clue. I think this sort of distracts me from the pain, and sort of derails a possible downward spiral.
There are a lot of other “body sense” and mental tricks that you can learn/do pretty quickly in terms of pain management. There are some great blog articles on Psychology Today‘s website that I have found helpful.
- Low-impact cardio! Bruce and I went out within a week of my diagnosis and bought the cheapest treadmill we could find. The rheumatologist told us that cardio can reduce the pain by 40%, but not doing cardio could increase the pain by 20%. Let me tell you: pain relief is one of the best motivations for working out I’ve ever had.
- Space heaters! I was having a rough day at work: the aching was getting progressively worse in my forearms and calves. I was about to take Tylenol when I decided to put on a space heater since there was a chill in the air. In less than two minutes, the pain was completely gone.This trick hasn’t worked every time, but it generally helps a great deal.
- Sleep and having a regular sleep schedule is super-important. I’ve never stuck to such a regimented schedule since becoming an adult. I think that it definitely does help, and it also helps me know when my body is actually fibro-ing vs. me being a night owl. 2 mg of melatonin has also helped me get to sleep faster (my mental wheels tend to do a lot of spinning as I try to go to sleep and the melatonin stops them in their tracks).
- Cymbalta – it’s more than an antidepressant, it can help with fibro pain. This is what my most recent doctor put me on a few weeks before I got in to see my rheumatologist, who then told me to up my dose. It definitely has helped a ton.
I want to bring up this specific medication because I had a scary side effect that I couldn’t find a whole lot about on the web: muscle spasms/tremors. They were disruptive and kind of freaky – I tried to make light of them at work (singing “shake it like a Polaroid” if I got an especially noticeable spasm) but I was worried that they’d never go away.
I mean, from what I could find, about 900 out of 42,000 people have this side effect – and nothing indicated that the shaking would go away.I want to put it out there that this side effect went away for me (both after my initial dose, and then the upped dose) after about 3 weeks.
Right now I only get a little shaky if I’m under a lot of stress, and even then it’s nothing like it had been during the second week of Cymbalta. So, if you happen to stumble across this post looking for someone’s personal experience with this side effect, then please know that there is hope.
- Last, but not least, like I mentioned above, having some sort of support is so very important. Having Bruce there to listen and support me was priceless. When it was nearly impossible for me to drive, he drove me to my doctor appointments. When I was overheating yet again, he gently would point out that I should really find out why my body was doing that.
(^^^some of my favorite pics of Bruce: his suave senior photos – they make me smile every time)
Like I mentioned before, having watched my mother go through a much more distressing chronic disease diagnosis, and her speaking with me about it, has also been invaluable. She went through, and is still going through some rough times – but she has shown me how not to give up, and how to keep living better than ever when faced with a life sentence. She’s also taught me about how much humor can help. She’s my hero.
Also, something quite coincidental happened during the time right before I was diagnosed with my condition: I was taking a fabulous Youth Services Managment continuing education course led by Marge Loch-Wouters, and one of the final discussions was about keeping it zen at work. Without knowing it, everyone who shared a technique in that discussion was supporting me. I appreciated those suggestions when I first read them, but less than a week later I had my diagnosis, and those suggestions became precious.
So, try seeking out advice from people who seem to let stress roll off their backs. Or do some internet searching. I was really touched when this post on Mindfullness in the Library recently came up on the ALSC blog.
This is a lifelong journey that I’ll be sure to update from time-to-time – I really don’t want to make this condition a focus in either my life or blog. I mean, the pain is already vying for most of my attention, and most days I stubbornly keep going. I’ve also gotten better at knowing when I need to throw in the towel and be prone at home. That said: the rare days where I feel good – like pre-illness/conditions good – I deeply appreciate those times more than I ever did before.