When Guilt Threatens to Consume You

When your partner is a spoonie, guilt is an inevitable part of your relationship, for both of you. Your partner feels like they have let you down when they cancel plans. Or they might feel guilty for not being able to help as much around the house. You feel guilty for having fun without them. Or you feel guilty because you still have your health. There may even be times where you feel guilty for pushing them to attend an event when you know they aren't feeling well. So much of our guilt is self-imposed. We place many impossible standards on ourselves and then berate and belittle ourselves when we fail to measure up. So how do you get past it?

It's not easy, by any means. As I discussed in my previous post, you need to have one or more backup plans if you want to keep your sanity. My partner Nick and I have an agreement of sorts when it comes to keeping and making plans. If he is not feeling well enough to go anywhere, the general rules are something like this: for an event with his family, neither of us will go; for an event with my family, I will still go as much as possible; and for an event where advance tickets were purchased, then I usually try to find someone to go with me or give away our tickets. There are some times when Nick will push himself to attend an event, even if he is not feeling well, but this only comes about for once-in-a-lifetime events, like a graduation or a wedding. One of the most frustrating aspects of fibro is its sheer unpredictability because of symptoms that can change on a dime.

Another trick I like to use is to set my spoonie up for success whenever possible. This means that I try not to schedule back-to-back events or more than one event in a day, and I also try to choose activities earlier in the day when he is likely to have a little more energy. I don't want him to feel guilty or stressed for cancelling on me, and the easier I make this on him, the less guilty I feel for doing those things without him.

We talk about these kinds of things as they come up, and it sometimes takes a bit of planning ahead. For instance, if I tell Nick that we have somewhere to go on Saturday, then he has to try to take it easier in the days leading up to it, in order for him to feel as good as possible.  If you find yourself wondering why your spoonie can often be anxious when it comes to social events, put things in perspective, and you might understand a little better. When was the last time you felt like going to your cousin's birthday party when you had the flu? You can imagine how difficult it can be to put on a happy face and be engaging at a social event when you have very little energy and everything hurts.

I would be lying if I said I don't get disappointed from time to time. However, my disappointment is not directed at my partner but rather at his chronic illness. I find it more helpful to look at the illness as your enemy instead of your partner. There really is no way to get rid of the guilt - it will show up time and again. It comes down to changing your perspective and focusing on the more important things in your relationship and in life.

Remind yourself that your spoonie did not ask for a chronic illness, and the both of you are trying to do your best. That's really all you can ask of someone - to do their best. We're going to make lemonade and work with what we have.

The Importance of Having a Plan B (and C and D, etc.)

 

You will find out very quickly that you must learn to be understanding when things don't go according to plan and also to be more flexible when it comes to social plans.

One of the biggest adjustments I learned to make quickly as a result of dating someone with fibro is to be more flexible in any plans we make. Unfortunately, the sheer unpredictability of fibro doesn't lend itself to making and keeping plans easily. Please know that your fibro fighter has the best of intentions to honor any plans you have made, but it is inevitable that they will have to cancel or reschedule on you - often many times.

You have to learn not to take this personally - there is often much more going on than you are aware of when your fibro fighter makes this decision. They are just as disappointed as you, if not more so. Keep in mind that your fibro fighter has to constantly weigh any activity-based decisions carefully, no matter how big or small, and determine whether they have the energy to do any particular activity.  There are times when they may "look" healthy to you or seem to be feeling okay, but sometimes they need to conserve energy or avoid a delayed onset flare due to the extra activity.

It is very helpful to have a Plan B or C or even D at times. Say your original plan was to have lunch and go see a movie, but your fibro fighter is in too much pain or too tired to leave their house - offer to pick up lunch  for them or make sandwiches at their house and rent a movie or watch TV together.  Your fibro fighter still wants your company, and the fact that you are willing to "bring the party to them," so to speak, means more than you know.  Obviously, this approach doesn't work in a gathering situation, but you could always offer to bring them a plate of leftovers later that night or the next day.  No one likes to feel left out.  

If your fibro fighter is not also your partner, it is so important for you to continue to invite them to as many activities as possible, even if there's a good chance they won't make it. More invitations means more opportunities that they may be able to attend.

Above all, don't give up on them, especially if they were always a good friend to you before their diagnosis. Fibro is such an isolating illness, and it is so important to make time for your fibro fighter and show them that they still matter to you.

Something I'd like to address in my next post is the guilt felt by both sides when plans don't go according to plan.  Stay tuned..

Educating Yourself for the Love of Your Spoonie

This post is geared towards both those with and without fibro or another chronic invisible illness and is something I can get a little passionate about. I know that many spoonies are in different stages when it comes to the diagnosis and management of their illness(es). I was fortunate enough that Nick had already received his diagnosis and had gone through a few years of trial and error with his meds and management of his fibro before he met me. As you may have read before, he ended up going to the Mayo Clinic in Minnesota, and their knowledge and support made a world of difference for him. He was knowledgeable enough about his illness by the time we started dating that he was able to explain many aspects of it to me, so I could better understand this part of his life. I know that not everyone is in the same boat – some spoonies are just starting to experiment with the right combination of meds, some are struggling with the varying and unpredictable symptoms, and still others are fighting alone with no support or understanding from friends and family.

I certainly don't profess to know everything – in fact, I'm still learning myself – but I'd like to share something that helped me. When Nick first told me about his fibro, I was pretty ignorant (as I have mentioned before). Once I realized that I was interested enough to pursue a relationship with him, I decided that the best way for me to proceed was to be as supportive as possible, no matter how much or how little I understood what he was going through. It was very surprising (and saddening) to me to learn that I was the first person he dated post-diagnosis who actually cared enough to want to know more. Being the type of person who loves to learn, I decided to search on the Internet and ask around on different support groups for book recommendations. Though I haven’t read through them all yet, I purchased a number of books that were suggested to me as a good source of information for both those with and without fibro.

If you have fibro or another chronic invisible condition, please take the time to educate yourself on your illness. I know that everyone's symptoms and experiences are different, but please don't be afraid to ask questions of those who have been there before you. There are no stupid questions when it comes to your health and well-being and trust me, I have heard about some very strange symptoms that can be attributable to fibro. The more you know about your illness, the better equipped you will be to try to explain it to others in your life. Also, please find a support group online or in your area if you aren’t getting enough support at home and know that you are not alone in this.

If you don't have a chronic invisible illness, one of the best things you can do is to educate yourself and be an advocate for your friend or partner who does. There are so many people who are clueless when it comes to these types of illnesses and how they affect those who are dealing with it. If we want to spread awareness, we have to start with ourselves and gather facts so we can effectively share this information with people on the outside. Many spoonies have difficulty focusing on reading due to fibro fog or headaches – offer to read books or articles to them or even just share what you learn. You have to learn to approach the treatment and management of your spoonie's illness as a team – no one should have to go through such a life-altering illness alone. As corny as it sounds, knowledge really IS power in this case.

Peace and Love,
Kim

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.

What's the Big Deal about Spoons?

A very popular illustration of what it's like to live with a chronic illness is called "The Spoon Theory", written by Christine Miserandino who is battling lupus.  If you know someone with a chronic illness (or have one yourself) and have not read this story before, it's worth a few minutes of your time.  The basic explanation is that someone who has a chronic illness begins every morning with a finite amount of spoons, meant to represent the energy they have to get through each day.  Every small task done throughout the day uses up a spoon until the person runs out.  There is no borrowing from the next day or saving spoons from the day before; once you're out, that's it.  This often forces a chronically ill person to make choices between things they have to do and things they want to do as a matter of self-preservation.

Those fighting a chronic illness are called "spoonies", and in my experience, these are some of the strongest and most amazing people I've ever met.  My name is Kim, and this blog is meant to help spread awareness for chronic illnesses and what it's like to date a man with a chronic illness.  Specifically, my boyfriend Nick is fighting severe fibromyalgia and moderate chronic fatigue syndrome.

So what is fibromyalgia?  Well, the medical dictionary definition of fibromyalgia is "a chronic disorder characterized by widespread pain, tenderness, and stiffness of muscles and associated connective tissue structures that is typically accompanied by fatigue, headache, and sleep disturbances".  If you or a loved one are fighting fibromyalgia, then you know that it is so much more than this brief description, and it has certainly had a profound effect on your life and those around you.  If your loved one has fibro, then it may be difficult for you to understand what they are going through.  In reality, it is one of the most misunderstood and underrepresented chronic illnesses that I have come across. 

I am not a martyr, nor do I think I know it all.  Just as every chronic illness experience is different, so is my life with Nick.  I realize that many have it much more difficult than us; I would just like to give you some perspective on what we're doing to try to make it work and maybe help you gain you some insight into your spoonie (or your caregiver).  I hope you will come back to read about ways to support your spoonie and tips for coping with life as a caregiver.

Peace and Love,
Kim