Fibromyalgia is REAL

If your loved one is diagnosed with fibromyalgia, one of the most important things you can do to help them is to acknowledge that fibro is real.  You may think it's not necessary to mention this fact, but there are even doctors who don't believe fibro exists.  Of course, I'm not a doctor myself, but I am reading several different books in order to learn more about fibro (and I have a real-life hands-on "research aid" in Nick).

I can only imagine how hard it would be to struggle every day and have those closest to you refuse to acknowledge and validate what you're going through every minute of your day.  Even though you can't see fibro (which makes it very hard for people to understand), it is very real to those who are fighting it.  It is a terrible misconception that fibro fighters are lazy or hypochondriacs.  In reality, they usually tend to be Type A go-getter-type people, which makes it that much harder for them to reconcile their old life with the one fibro has now given them.

One of the most obvious questions I would pose to a disbeliever is: "Do you REALLY think a normal, healthy person would fake a chronic illness that causes them to regularly miss out on many fun activities with friends and family?"  The answer is obviously no!  I see Nick on an almost daily basis, and I have definitely noticed that his symptoms change, and his pain and energy levels fluctuate.  He would have to be the best actor I've ever seen in my life to be "faking" his fibro.  Most of the time, I can tell in his eyes and face if he is in a really bad flare.  For those who are not familiar with fibro, a "flare" is a temporary increase in the number and intensity of fibro symptoms.  Those with fibro spend quite a bit of time trying to avoid them, but it is not easy, especially when there are so many triggers.  Please take a few minutes to read Karen Lee Richards' article "10 Causes of Fibromyalgia Flares", and you will see how many of these causes are beyond their control.

I have heard several descriptions of what fibro feels like.  The most common explanations are: "the world's worst case of the flu", "a hangover without any of the fun of getting it", "a blood pressure cuff pumped up all over your body" or "like a clothespin stuck on the end of your finger but all over".  From talking with Nick and others who have fibro, these comparisons don't come anywhere close to explaining the nightmare that is fibromyalgia, but they give laypersons a base to imagine what it's like in terms they might understand.

There are so many different symptoms that manifest with fibro (over 300!) that it can seem strange and impossible at times and hard to explain.  I plan to address many of these in future posts.  No two patients are the same, and I imagine this is one of the biggest obstacles to making progress in finding a cure (you don't want to get me started on doctors and pharmaceutical companies who would rather treat the symptoms than the cause).  Please don't be afraid to ask your fibro fighter questions about their particular symptoms in order to better understand what they go through each day.  They will certainly thank you for the effort.

Peace and Love,
Kim

Welcome Friends!

I just wanted to say hello and welcome to everyone who found my blog via Twitter (@KimFFU) or through my recent interview featured on Julie Ryan's blog, Counting My Spoons (or even if you just Googled "fibromyalgia" and "caregiver" and were somehow led here).  I hope you will find my blog to be honest and educational.  It is my goal to help educate the friends and family of those fighting a chronic invisible illness to raise even more awareness and garner better support.

If your loved one is a spoonie (and I'm assuming you love them), then you owe it to them and to yourself to read and learn as much as you can about their condition and truly mean it when you say that you are there for them.  No one should have to go through such a life-altering illness alone.

Peace and Love,
Kim

What is a Caregiver?

When I was recently asked to do a caregiver interview for a fellow spoonie blogger, Julie Ryan of Counting My Spoons**, I was excited to have the opportunity to share my story, but the more I thought about it, the more I wondered if I could really call myself a caregiver.  After all, even though my boyfriend Nick is fighting severe fibromyalgia and chronic fatigue syndrome, he is still physically capable to a degree and as self-sufficient as possible.  I know there are so many with multiple illnesses and ailments who need significant care just to get through the simple functions of daily life.

To satisfy my curiosity, I thought I would start with the standard definition.  Merriam-Webster defines a caregiver as "a person who provides direct care (as for children, elderly people or the chronically ill)."  This seemed like a pretty vague and non-specific definition to me, so I kept searching.  I came across one that spoke to me on http://robcares.com/ which defines a caregiver as "a person with love in their heart and the knowledge and desire to make their loved one's medical challenges more bearable."  By this definition, I think I can certainly consider myself a caregiver.

I really had to think about what exactly it is that I do to help Nick on a weekly basis.  We don't live together, but I still try to spend as much time with him as possible -- usually 3-5 days a week.  Fibromyalgia and other chronic illnesses can be very isolating.  You would be surprised at how just your physical presence can do so much for someone who might otherwise spend most of their time alone.  When I'm with Nick, we cook and clean together, do yardwork, talk and watch TV or movies.  On good days, we might go grocery shopping or out to eat, sit outside or spend a couple of hours at a festival or with friends and family.  When he's in a bad flare, I try to ease his muscle tightness with a massage and lots of cuddling on the couch. 

Nick sometimes has a hard time reading and understanding books because of his fibro fog, so I will occasionally share or read information from whatever educational book about fibromyalgia I happen to have with me at the time.  I also help Nick run a couple of Facebook support groups for those fighting fibromyalgia and am trying to get more active on Twitter and this blog to raise awareness and show support from the caregiver perspective.

As a caregiver, I have heard that it is very important to not lose sight of yourself and your own hobbies.  I have a very nurturing personality, which can be both a curse and a blessing.  It helps me be more sympathetic and compassionate to others (and thus willing and able to help them), but it also sometimes keeps me from taking care of my own needs or putting myself first once in awhile.  It's a delicate balance for me, but it helps tremendously that Nick is the kind of person to not let me shoulder the entire workload alone.  We are very similar in that we tend to put our partner's happiness and well-being ahead of our own.  Obviously, there are times when Nick has to put himself first because of his health, but overall I don't feel that I'm in any imminent danger of caregiver overload.  It's certainly a possibility someday that it may happen, so Nick and I will be sure to discuss this often.

Peace and Love,
Kim

**My interview will be featured on Julie's blog on Wednesday, July 23, 2014 if you are interested.