I used to be a person who could just go and go and go — and I wouldn’t stop until I lay my head down to sleep. People (mostly my BFF since forever) were always saying that they did not know how I did it and wished they had my energy. I laughed and thought, “How do people get anything done that DON’T keep going all day long?”
Then, little by little, it happened, the F word (AKA Fibromyalgia).
Now, don’t get me wrong. There were days where my body would warn me and I had no choice but to slow down. Those days were few and far between. A little bit of ibuprofen or a nap would do the trick. I miss those days. I miss that body.
I just had a mini flare up. Some days when they come it hits me like a ton of bricks. Thankfully, as of lately, my flare-ups are usually just a day or two and then I get a little break. I have done many things to lessen my flare-ups and I guess they are working since they are not as severe as they used to be. However, I am so tired of being tired. So tired of worrying about doing too much and then having to lay low a few days because I feel like absolute shit.
The thing that bothers me the most about all of this is that my kids have to see me on my off days. I don’t want them to think of their mom as weak. I want them to know how strong I am and how hard I have to push myself some days to just keep going. I know that they are young and one day maybe they will get it. Also, maybe they won’t. It’s hard to say because I know of many adults that don’t seem to get it and I am very perceptive to the reactions I get from people. I can tell when someone is just trying to nod and go along with it but thinks I’m full of shit. I can tell when someone doesn’t really care to know and is just waiting to tell me something that they are dealing with. I can also tell when someone is genuinely concerned and asks me how I have been feeling since the last time they saw me. I appreciate them, they are few and far between and it really means a lot. I hope I can be that person for others with invisible chronic illnesses. I get it.
What Does It Feel Like?
A few people have asked me this question, those are the people that I know are trying to understand what I am going through and truly do care. Once again, I thank you.
You know that feeling when you have the flu and your whole body just aches? It’s like that but with each episode there seems to be certain areas of the body that radiate more pain and are the main focus. So far, I have had pain that started in the sciatic nerve (which was weird because I had never experienced this pain while pregnant), other times it starts in my jaw or upper back/neck, there are times I have shooting pains in my feet. It’s kind of a crapshoot of sorts with your body.
Now, I can tell that there is always some sort of ache or pain every day but during a flare-up it is hard to function because it intensifies. At times my whole body just feels like it is radiating heat, almost like a fever, other times for the life of me, I cannot get warm and my feet and hands are icicles.
Mentally, I feel that this is where I struggle the most because along with flare-ups comes brain fog and at times I just cannot get my words become jumbled and sometimes slurred. It’s so strange and if you see me I will most likely try to joke about it and pretend like it’s no big deal but it truly embarrasses me and makes me feel unintelligent. A lot of times, I feel like I could cry at the drop of a hat and I don’t know if it is just because I don’t feel good or it is because I do not want to feel this way and it really brings me down.
My flare-ups were at their worst the year before I had my thyroid removed and I really struggled with my mental health. I am not sure if it was my thyroid affecting me or the fact that I didn’t do as many things to prevent the flare-ups because I was uncertain about what I was dealing with. I pretty much lived on a high dose of ibuprofen that year.
However, I do feel like I have been able to prevent the longer and more severe flare ups from taking place. I hate to even say it out loud (ok, fine. Type it into my post) because I am afraid I will jinx it. Now that I have been three years removed from my thyroidectomy and I have started focusing more on my physical health because my mental health is (mostly) in check. Don’t get me wrong, I’m still a scattered hot mess but when I am not struggling with my depression I consider that a win.
Preventative Measures I am Taking
MOO WHO?
I cut out the cow. Yup, I had to cut out dairy and that was HARD for this ice cream loving, coffee cream devouring girl. But I did it. It took some time to get used to almond milk in my cereal and coconut milk in my coffee but now I actually prefer it and milk tastes gross to me. It’s crazy because I had severe acid reflux for many years and of course during pregnancy I was pretty much a fire breathing dragon. I had taken preventative reflux meds, repairing reflux meds, I even had a scope done about two years ago. Nothing would get rid of it. Nothing. The doc’s answer was to just continue to taking the meds. Come on! I wanted to figure out some preventative care instead of continuing to take a med long term that could cause fractures and deficiencies, just to name a few. I was not okay with this answer and so I decided to listen to a friend’s suggestion that I had silenced and set on a shelf a while back. Cut out dairy. Yikes! Well, I am here to tell you. It flipping worked! No more meds and only random flare ups when I decide to divulge in some of the creamy stuff without a lactaid pill (that I also discovered helped me when needed). And no surprise here: apparently dairy is a huge inflammatory trigger. Well imagine that!
Calming exercises
Yoga, Yoga, Yoga
I won’t go too much into it but I will refer you back to another article I wrote about the specific Yoga videos I use.
So many times I start practicing my yoga and minutes in, I can feel the tension leaving my body while also reminding myself how important it is to KEEP DOING IT. I try to get in at least a few Yoga practices a week when in all reality I know I should be doing it daily for my mental and physical health. Just do it, dammit!
Meditation or Positive Mental Health Podcasts
Now, don’t get me wrong I do love my True Crime podcasts BUT sometimes I know they may not be the best for my anxiety. Soooo, I will switch it over to a tried and true podcast that I have enjoyed to kickstart mindful breathing and the like. One that I have stumbled upon and truly enjoyed is Ten Percent Happier. He has some meditation moguls on there that have an amazing way of explaining your thinking and helping you navigate through some hard stuff. Most episodes he will have a meditative treat thrown in to have you focus on your breathing and the positive frame of mind that you so need. Usually, I will be doing what I’m doing and take a moment to sit and do exactly what the speaker is vocalizing. Why not?! What can it hurt? Treat yo’ self.
Plain Old Exercise
I know, I know, we have all heard it before. Exercise is good for your health. I also know that as a busy parent it is sometimes very hard to fit it into your schedule. And I HATE waking up early to fit it in. I just do. Blah. So, I just go with the flow. I try to remind myself how much better I feel when I do workout and I will usually fit it in closer to right before dinner time, I don’t know why but that just works for me. Yes, I usually have the kids running around me, vying for my attention and usually torturing each other but I will slip on some headphones and try to drown it out while listening to my latest book, sometimes a podcast but also some workout themed music. And yes, I do let the littles know what I am doing and remind them that Mommy is just taking some time for herself to workout. Sometimes they will join me, sometimes they will play with their toys near by and sometimes they will constantly scream my name and fight with each other annoying the shit out of me. It is what it is. I get it done.
Now, do not be hard on yourself if you don’t get that 30 minutes of sweat inducing exercise in as much as you would like. Baby steps. One week, one day. The next week, two. You got this.
Use that fitbit every damn day
Just look at it like you look at your four year old that constantly asks you to play with him/her. Yes, it’s a constant reminder of what you want and need to do. Yes, you don’t always want to do what it is asking. Yes, you feel guilty if you do not play/keep your steps up. I mean, we already live with constant guilt anyways, so why not? I’m totally kidding. I think it’s a good kind of guilt. You are reminded to get your steps in to take care of yourself. It will keep you healthy and even sometimes (with my iwatch at least) give you little reminders to do breathing exercises and tell you what the weather is. Can your four year old do that?! I didn’t think so.
Other shit I have done
I’m not going to get all detailed about this, because if I am being totally honest. I still struggle and I am not at all an expert. I am just someone trying so very hard to control my flare ups. I have good weeks and I have bad weeks. I am only human.
I have taken anti inflammatory supplements. At this time I am taking Omega 3s, magnesium and a probiotic because I feel it has given me many benefits in the past and I wanted to keep up with it again.
I try to stay away from processed sugar and greasy foods as much as possible. I mean, I will still have a baked good here and there but I use Stevia to sweeten things and we have cheat days where I will order some fries. I cannot be extreme in cutting things out or I will totally cave.
This one is huge and maybe one day I will make it a blog post but for now…cut out the toxicity from your life. I know this is easier said than done but I can promise you that when you do this it will help you all the way around. When you deal with added drama in your life that causes added stress on your mental health, it can be a big trigger and trigger fibro flare ups. I know this and honestly, I get really worked up before any events that I feel will trigger me. It totally rains on your parade. It’s hard.
No matter what you do to take care of yourself and your flare ups. Do not forget to give yourself some grace. You are only one person and you are doing the best that you can. Take it one day at a time and know that there are others (like me) that understand what you are going through. You are not alone. You are loved.
~Amanda
AMANDA BIRD
Amanda is a social media manager for Peaceful Living Wellness and assists in graphic design and product merchandizing with the Peaceful Living Wellness Brand. She is also a coaching trainee with Peaceful Living Wellness whom looks forward to working with Parents of children with Special Needs.
She is now a blogger for the Peaceful Living website and also has her own mental health blog at www.awordfrommommabird.com. There you can find real, raw stories about raising a child with special needs, living with chronic illness and overcoming mental health struggles along her journey with some sprinkles of humor.
She has been married to her husband Shannon for 16 years and they have 3 beautiful, active children that are the ages 13, 11 and 6. They tend to have a menagerie in their home but they currently house a boxer that was a rescue, a redefined barn kitty, a studious bearded dragon and sassy parakeet.
You can usually find Amanda volunteering for the kids’ latest school fundraiser, opening up a food pantry in her driveway (totally normal) or running her kids to their latest and greatest after school extra-curricular, among other things. She enjoys supporting her community and currently has a support page active on Facebook for parents of children with special needs.
