When your illness is no longer your own…

I had planned on posting something completely different today but I woke up with a bad fibro flare and felt the need to share how it’s been effecting my life lately. You know the phrase “cancer is not just an individual disease, it’s a family disease? ” well so is a chronic illness.

As I shared in my last post, I am now 4 months pregnant which means no medications for me. I already weaned off my lyrica and tramadol last spring when we knew we wanted to try for a baby, however, the summer months are easier on my fibromyalgia and I wasn’t suffering too much until about late September-early October. I live in New York so when it gets cold….it gets cooolllddd.  I’m sure my fellow chronic illness sufferers consider themselves meteorologists like I do because boy does your body let you know when bad weather is coming your way! Al Roker ain’t got nothing on me!! I’ve had a few flare up’s here and there but surprisingly it has been manageable, even with the pregnancy, that is until today.

Lately, I have been waking up with really bad aching legs, back pain, headaches, and pins & needles which is an indication a flare up is on it’s way and today …. it arrived! I also have sciatica, a ruptured lumbar disk, and two narrowed disks in my neck that are pinching a nerve that goes down to my arm…good stuff huh??

I had a list of things I needed to get done and I had no choice but to stay in bed and do nothing. And although  I’ve been dealing with fibromyalgia for almost 5 years now, I always feel some form of guilt when I am in bad shape. I feel completely powerless and useless. When my husband checks in to see how my day is going I hate telling him about my pain, the aches, the restlessness, and all those fantastic symptoms he’s heard me speak of so many times before. Once this energetic , non-stop, no nonsense girl, I feel like I am a shell of who I used to be and I hate it.

I hate the look on my moms face when I complain about my fibromyalgia. not because she doesn’t want to hear about it, but because she feels bad for me and powerless as well. Friends are supportive but they also have no clue how to help me and now that I’m pregnant, it’s been eating away at me about what type of mom I’m going to be. I don’t want to be the “mommy can’t get out of bed today” or ” mommy needs to sit this one out” type of moms. I want to be the best mom I can be, which includes breast feeding when the baby is born, but that also means no lyrica and no medication that can hurt the baby for a while. I hate that my child isn’t even born yet and this is already affecting her.  And yes, I’ve spoken to my obgyn and pain management specialist but they are more concerned that I am just sticking to tylenol right now than anything else. (Tylenol….what a joke!) Anyway,  I’m cranky, I’m agitated, and exhausted in this state and my whole family usually gets the brunt of these moods when I am hurting and I’m afraid the baby is too. Yet if I dwell on feeling shame and guilt about my fibro it just snowballs into more flare ups and mental anguish which is not good for me, the baby, or anyone overall really.

Soo in all this mess of pain and emotion today I’ve been researching what I can do while pregnant to alleviate some of my symptoms. I have 5 more months to go and I don’t plan on spending it on bed rest. I’ve been into yoga for the last 15 years or so, so I am aware that getting back to my prenatal yoga will be positive, but what other remedies are out there? Well so far I have come across warm baths with epsom salt , acupuncture, prenatal massages, and adding micronutrients to my regimen which all sound like promising options. I also use a heating pad and tens machine on days like today. It isn’t a cure all but it helps. I will definitely have to update you guys as I navigate the waters of pregnancy and fibromyalgia. This is a completely new experience for me, one that is both scary and exciting  …. and as always, if anyone has any suggestions I would love to hear them!

I hope everyone else is having a better day than I am! Remember to stay strong and positive, you are not alone!

-k

 

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