Well, here we are, not only has life as I know it changed, unfortunately so has yours! We are now on a new journey, not a fun one, not an exciting one, but more of a mountain climbing journey with many pit stops and detours ahead. So here are a few things you should know going into this journey that may make it easier for you to deal with me. As you know, I have a chronic illness and life will never be the same for either one of us.
It’s not an illness you can see, but you see me struggling. It’s not an illness you can feel, but you see my pain. It’s not an illness you may understand, but you see my frustration. Things will never be the same but I can try to keep them as “normal” as possible for the sake of our family. So how do I fully explain the challenges that lie ahead? There are many aspects of chronic illness/pain that I want you to understand so we will start at the beginning and I’ll explain as best as I can so you know and can understand fully what this journey will be. There are a lot of different areas to cover so hold on, it’s gonna be a bumpy ride.
So what is this thing called fibromyalgia? Well, there are so many theories and definitions of what it is that they all kind of mesh together and some definitions sound utterly confusing and don’t make sense while others make it sound like a bunch of symptoms with no real meaning or defined diagnosis so it must be all in our heads but let’s give it a name anyway. So first of all, I have this “condition” that affects how my body responds to pain. The “fun” part, everyday might be different so I may have pain in my joints one day, and shooting pains in my legs another day. So let’s start with pain.
My pain may range from bothersome to extreme from one day to another and even one hour to the next. Sometimes it may be hard for me to tell you exactly what hurts and how it hurts, but just know it’s very uncomfortable and it hurts. The “bothersome” days are the ones that I try very hard to keep up with the day to day chores of keeping the house functional and clean. I also try to tackle the other projects that keep adding up.
These are typically the days that I push myself far beyond my limits so know that if I’ve had a busy day and lots of projects done, I may be down for the count for a few days afterwards. The days I have extreme pain are they days I will spend most of it on the couch, in bed or in the chair trying to get comfortable.
These are the days that the laundry, the dishes, the house cleaning and the cooking will have to wait, or I will need help. You will likely also find these are the days that many tears are shed. Tears of pain, tears of sorrow, tears of frustration and tears of knowing I’m letting myself and my family down. But as I have learned, you know these tears and are always willing to comfort me. You know this is one of my most vulnerable times and you let me deal with it as best I can, even if it means I have to miss yet another family get together.
These times/days of pain I may also have a lot of anxiety and stress. But from what I have learned, not all stress and anxiety are expressed the same way or the typical fashion many people think of, mainly the anxiety part. For most people when they hear anxiety, or anxiety attacks, they picture people sitting in the corner, curled up in a ball swaying back and forth while mumbling a bunch of gibberish.
Well, anxiety can be expressed or demonstrated in many different ways, most of which I have just learned of myself. For me, the most common ways I demonstrate anxiety are anger and getting easily upset. Simple things just make me so frustrated, upset, and crabby that no matter how hard I try to be calm, collected and nice; I end up snapping at everyone and everything which leads to fights, arguments and just plain discomfort for everyone. As hard as I try to stay calm and collected, little things just seem to push my buttons and make me so upset.
Please know that I am trying so very hard to let these things roll off my back and not cause me stress or anxiety, I just can’t help it most of the time however and it’s because physically I am just so uncomfortable that sometimes it takes nothing more than a particular look to drive me crazy! I try so very hard to keep it together and not let things bother me but know that sometimes I just can’t keep it all in and it’s bound to eventually spew over like Mount Vesuvius!
You have also learned that when I have conversations with you, or others, that sometimes it seems like I’m foaming at the mouth with conversation, talking fast and sometimes not making much sense, this is also a way I experience and express anxiety. I try to take deep breaths, keep my responses in conversations even, calm and collected but yes, sometimes a simple conversation can send my anxiety into a tailspin.
It’s not the people I’m talking to necessarily that are causing me stress or anxiety but just the conversing in general that can send my anxiety meter flying. When I’m in the midst of this anxiety, socializing can be very difficult. Sometimes I will have to miss family gatherings or parties due to increased anxiety and pain, but please know that this is not something I make a deliberate choice in doing.
I never want to feel sidelined by my symptoms or let all of this dictate my life, however, this has a huge impact on my life now and how I live it and yet you always seem to know when I truly need a “time-out” to collect and center myself and quiet all the chaos going on in my head. Fatigue is the other major player in all of this. The best description of the fatigue I have is that its fatigue that no amount of sleep will EVER help. This is so very true. Pain in and of itself causes fatigue. Now add stress, anxiety, depression and chronic fatigue syndrome on top of all of that and sometimes even taking a shower is the biggest task I may accomplish all week long!
The fatigue from chronic illness can be summed up as being so tired that you felt like you haven’t slept in over a week yet you have to continue all the tasks you usually do on a regular basis. The fatigue alone can cause all of our other symptoms to be experienced in quadruple what it “normally” may be experienced.
Then add the insomnia or varied sleeping habits of those with chronic illness, this is a recipe for suffering. Yes, we are tired quite literally ALL of the time. When we say we are “tired” it’s not just saying we had a bad night’s sleep, it’s saying that on some days we are so tired that even the smallest task will drain every reserve we have. And yet again, you seem to know when my last “spoon” has been dumped and you encourage me to rest.
Unemployment is now part of our vocabulary and reality as well. Me not being able to contribute to our financial plan is also now a big issue in our lives. It causes both of us stress in looking at our future. Things are no longer as accessible as they once were and priorities have changed. Yet with all of that added onto what we are dealing with, you continue to support me and reassure me that we will survive.
We will have to say no to more things than we say yes to but we will make it work somehow. My future dreams, aspirations and career have had to be put on hold so sometimes when that becomes too much for me to bear, you hold me and let me know that I should still be proud of what I have accomplished but comfort me in knowing that as I see it, things will be so drastically different and there is nothing I can do to fix that.
I may seem to complain all the time about the things that bother me, the pain I have, the fatigue that has taken over, but yet you are still here, holding my hand, rubbing my shoulders, encouraging me to keep fighting. When we or a spouse and/or family member have this condition it seems to take everything we have to give. But you supporting me is the greatest gift you have to offer.
Patience is a virtue; the ability to comfort is a gift, and understanding as well as empathy is truly a rare thing. However, luckily for me you have all of these things. And no matter what our story ahead has planned, your ability to understand my condition, be patient with my limitations, and comfort me in my darkest times has given me the ability to continue to persevere. Day by day, even hour by hour is the best I can do.
But you, knowing that life will be different for us and being able to adapt to what we have now will be the greatest gift you can give me, and please continue to be patient, understanding and caring of what our new reality may be. And most of all, thank you for understanding that this a legitimate diagnosis/condition. Your love and support is what keeps me going in this crazy world. I will continue to do the best I can but appreciate your support in this endeavor!