Well, here we are, not only life as I know changed, unfortunately yours too! Now we’re on a new trip, it’s not fun, it’s not exciting, but rather a mountain climbing trip with lots of pit stops and detours ahead. So here are some things you should know when undertaking this trip that can make your deal easier. As you know, I have a chronic illness and life will never be the same for either of you.
It is not a disease that you can see, but you see me struggling. It is not a disease that you can feel, but you see my pain. It is not a disease that you can understand, but you see my frustration. Things will never be the same again, but I can try to keep them as “normal” as possible for the good of our family. So how do you fully explain the challenges that lie ahead? There are many aspects of the chronic pain / illness that I want you to understand, so we’ll start at the beginning and I’ll explain to you as best I can so you know and can fully understand what this trip will be. There are many different areas to cover, so wait, it will be a bumpy ride.
So, what is this called fibromyalgia? Well, there are so many theories and definitions of what it is that come together and some definitions sound completely confusing and have no meaning while others make it sound like a bunch of symptoms with no real meaning or definite 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 the way my body responds to pain. The “fun” part, every day can be different, so you can feel joint pain one day and stinging pains in your legs one more day. So let’s start with pain.
My pain can vary from annoying to extreme from one day to another and even from one hour to another. Sometimes it can be hard for me to tell you exactly what hurts and how it hurts, but I know it is very uncomfortable and hurts. The “annoying” days are the ones that I strive to keep up with the daily tasks of keeping the house functional and clean. I also try to address the other projects that continue to add up.
These are typically the days when I push myself far beyond my limits, so I know that if I had a busy day and many projects, I may not be happy for a few days afterwards. The days when I have extreme pain are the days when I will spend most of my time on the couch, in bed or in the chair trying to get comfortable.
These are the days when the laundry, the dishes, the cleaning of the house and the kitchen will have to wait, or I will need help. You are also likely to find that these are the days when many tears are shed. Tears of pain, tears of grief, tears of frustration and tears of knowing that I am disappointing myself and my family. But as I’ve learned, you know these tears and you’re always willing to comfort me. You know that this is one of my most vulnerable moments and you let me deal with it as best I can, even if it means I have to miss another family reunion.
These moments / days of pain can also have a lot of anxiety and stress. But from what I have learned, not all stress and anxiety are expressed in the same way or the typical fashion that many people think, mainly the part of anxiety. For most people when they hear anxiety or anxiety attacks, they imagine people sitting in a corner, curled up in a ball that swings back and forth as they mutter a bunch of gibberish.
Well, anxiety can be expressed or demonstrated in many different ways, most of which I just learned from myself. For me, the most common ways I show anxiety are anger and getting angry easily. Simple things frustrate me, annoy me and make me so grumpy that no matter how hard I try to be calm, collected and pleasant; I end up criticizing everyone and everything that leads to fights, arguments and simply discomfort for everyone. Despite how hard I try to stay calm and collected, the little things seem to press my buttons and make me feel so upset.
Please, know that I am trying very hard to let these things get out of my back and not cause me stress or anxiety, I just can not help it most of the time, however, it’s because physically, I’m so uncomfortable that sometimes I get You need nothing more than a particular look to drive me crazy! I try with all my strength to stay together and not let things bother me, but I know that sometimes I just can not keep everything inside and, over time, I will vomit like Mount Vesuvius.
You have also learned that when I have conversations with you or with other people, that at times it seems like I spit foam through conversation, I speak quickly and, sometimes, it does not make much sense, it is also a way of experiencing and expressing anxiety. I try to breathe deeply, keep my answers in conversations, calm and collected, but yes, sometimes a simple conversation can make my anxiety fade.
It’s not necessarily the people I talk to that are causing me stress or anxiety, but only the conversations in general that can make my anxiety meter go flying. When I am in the midst of this anxiety, socializing can be very difficult. Sometimes I will have to miss family reunions or parties due to increased anxiety and pain, but I know that this is not something that makes a deliberate choice.
I never want to feel marginalized by my symptoms or letting all of this dictate my life, however, this has a great impact on my life now and how I live it and, nevertheless, always seems to know when I really need a “waiting time” . “To collect and focus and calm all the chaos that goes on in my head. Fatigue is the other important player in all this. The best description of the fatigue I have is that it is a fatigue that NO amount of sleep will ALWAYS help. This is very true Pain in itself causes fatigue. Now add stress, anxiety, depression and chronic fatigue syndrome and sometimes even taking a shower is the biggest task I can do all week!
The fatigue of a chronic illness can be summarized as so tired that you think you have not slept in more than a week, but you have to continue with all the tasks you usually do. Fatigue alone can cause all of our other symptoms to be experienced at four times what you “normally” experience.
Then add insomnia or varied sleep habits of people with chronic diseases, this is a recipe for suffering. Yes, we are tired, literally, ALL the time. When we say we are “tired”, we are not only saying that he slept badly, but that some days we are so tired that even the smallest task exhausts all the reserves we have. And once again, you seem to know when my last “spoon” has been abandoned and you encourage me to rest.
Unemployment is now part of our vocabulary and reality as well. The fact that he can not contribute to our financial plan is also now a big problem in our lives. It causes us both stress when looking at our future. Things are no longer as accessible as they once were and priorities have changed. However, with all that added to what we are dealing with, you continue to support me and assure me that we will survive.
We will have to say no to more things than we say yes, but we will make it work in some way. My dreams, aspirations and career in the future have had to be suspended, so sometimes, when that becomes too strong for me, it hugs me and lets me know that I should still be proud of what I achieved, but it comforts me to know that as I see it, things will be so drastically different and there’s nothing I can do to fix that.
It may seem to complain all the time about the things that bother me, the pain I have, the fatigue that has gripped me, but still you’re still here, holding my hand, rubbing my shoulders, encouraging me to keep fighting. When we or a spouse and / or a family member have this condition, it seems that we take everything we have to give away. But you support 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 are truly rare. However, fortunately for me you have all these things. And no matter what our history has planned, his ability to understand my condition, be patient with my limitations and console me in my darkest moments has given me the ability to continue persevering. Day by day, even hour by hour is the best I can do.
But you, knowing that life will be different for us and that it can adapt to what we have now, will be the best gift you can give me, and continue to be patient, understanding and affectionate with what our new reality may be. And, above all, thank you for understanding that this is a legitimate diagnosis / condition. Your love and support is what keeps me in this crazy world. I will continue to do the best I can, but I appreciate your support in this effort!