By: Dr Alex Robber
Well, here we are, it’s not only life, I know it has changed. We are now on a fresh trip, not an exciting, but rather a mountain trip with a host of pit stops and detours. There are therefore a few things you should understand about going on this trip that can facilitate your dealings with me. I have a chronic disease, as you understand, and for one of us life will never be the same.
You can’t see a disease, but you can see me fighting. You can feel it’s not a disease, but my pain you see. You might see my frustration, it is not a disease. It will never be the same thing, but for the sake of our family, I can try to keep them as’ normal’ as possible. So how can I clarify completely the difficulties ahead? I want you to understand many elements of chronic disease so we will begin at the beginning and I will explain my utmost so that you know completely what this trip will be. There are many places that can be covered so that it will be a bumpy ride.
So how does fibromyalgia mean this thing? Well, there are so many theories and definitions of which all sorts of networks sound totally confusing and some definitions don’t make sense, while others make it look like a group of diseases without any true significance or diagnosis. I have this “situation” first and foremost, which impacts how I react to pain. The fun part, maybe every day, so one day I’m painful in my joints and another day I’m shooting pains in my legs. Let’s begin with pain, therefore.
My pain could vary from one day to the next and even an hour to the next. Sometimes it can be difficult for me to tell you what hurts and how hurts, but I understand that it’s very awkward and hurts. The “best” days are the days I’m trying hard to keep the house clean and functional daily. I am also trying to address the other projects that are continuing to add up.
Typically, these are the days I go well beyond my boundaries, so I understand I may be down for a couple of days if I’ve had an active day and loads of projects completed. During those days I have severe pain, I spend most of it in the sofa, bed or chair to get comfortable.
These are the days when laundry, food, cleaning and cooking are to be waited for, or I’m going to need assistance. These are probably the days that many tears are thrown away. Painful tears, tears of sadness, frustration tears and knowing tears I let myself down with my family. But you understand those tears, as I learned, and are always ready to comfort me. You understand that this is one of my most sensitive moments and you have given me the best way to cope with it, even if that means I must lose another family.
I can also have much anxiety and stress during those times / days of pain. But, as I have learned, not everyone expresses stress and anxiety in the same manner or in the typical manner many individuals believe, especially anxiety. When they hear anxiety or anxiety attacks, most individuals imagine individuals sitting in the corner, bogged down in an up and down ball while wiggling a bunch of gibbers.
Well, in many distinct ways, anxiety can be voiced or proved, most of which I learned from myself. In my opinion, the most prevalent forms of showing anxiety are anger and frustration. Simple things only make me so frustrated, angry and crab bound that I’m so calm, gathered and good, no matter how hard I attempt; I end up snapping on all and anything, leading to battles, arguments and just uncomfortable for all. As much as I attempt to remain calm and collected, it only seems that little things push my buttons and upset me.
I can’t assist it most of the way, however, because physically I’m so discomfort able that sometimes it only takes a specific look to drive me insane! Please understand, I’m so very difficult to let things roll out my back and not cause me stress or anxiety. I am trying so hard to maintain it and I don’t allow things to bother me, but I know that I can’t maintain everything in it sometime and that it is bound to splash like Mount Vesuvius!
You also learned that when I talk to you or others, it sometimes appears that I spray in my mouth, speak quickly, and don’t make much sense sometimes, this is also a way I experience and communicate fear. I attempt to breathe deeply, maintain my answers even, calm and gathered, but yes, an easy discussion can sometimes send out my fear in a punch.
They are not the individuals I talk about that cause me stress or anxiety, but only the overall conversation that can fly my anxiety meter. Socializing can be very hard if I’m in the middle of that anxiety. Sometimes because of increased pain and anxiety I’ll have to miss family gatherings or parties, but please know that I don’t make a conscious decision.
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But now this has a great impact on my life and the way I live it, and yet you seem to know always when I really must have a “time-out” to collect and concentrate and soothe the chaos that goes on in my head. I don’t want to get out of it, or to let it all dictate my life. In all this, tiredness is the other significant player. The best description of my tiredness is that his tiredness, which doesn’t assist much sleep. That’s so true. Self-delusion creates tiredness. Now add stress, anxiety, depression, and chronic fatigue syndrome to that and sometimes it’s even the greatest job I can do all week long to take a shower!
The tiredness caused by the chronic disease is so tired that you feel you haven’t slept for one week yet all the assignments you generally perform on a periodic basis must be continued. All our other symptoms can be encountered by fatigue alone, quadrupling what it “standard.”
Additionally, add the insomnia or different sleep patterns of the people suffering from chronic illness. Yes, literally all the moment we are tired. If we say that we’re “distressed,” it’s not only that we have a poor sleep night, it’s that we are so tired in some days that even the little job is going to drip all the reserves we have. And again, when my last “spoon” has been dumped, you appear to understand and encourage me to rest.
Unemployment now also belongs to our vocabulary and reality. I am also now a large problem in our life not being willing to contribute to our financial plan. It creates pressure for both of us to look to our future. Things are no longer so available, and priorities have shifted as they used to be. However, you still support me and assure me that we will survive with all that added to what we are discussing today.
We’re going to have to say no to more than we say yes, but we’re going to create it function. You keep me in and allow me to understand that I must be still proud of the tasks that I have achieved but comfort me in understanding, as far as I can see, that things will be quite different and that I have nothing to do in order to remedy them.
It seems that I always complain, all the moment, of things that disturb me, of the pain, of the fatigue, but you’re still here to hold my hand, to rub my shoulders and to encourage me to continue fighting. When we have this situation, if we or a wife or family member, everything we have to offer seems to be accepted. But it’s the best gift you need to support me.
Patience is a virtue; convenience is a gift, and both comprehension and empathy are genuinely unusual things. But fortunately, you’ve got everything for me. Your skill in understanding me, be patient with my constraints and console me in my darkest moments, regardless of what our tale has planned. And it has allowed me to continue persevering. Day after day, the best I can do is even hour by hour.
But you will be the best gift you can offer me, knowing that life will be different for us and able to adjust to what we have now, and kindly remain patient and understanding and concerned for what our new truth may be. And thank you above all for understanding that this is a lawful diagnosis. That is your love and support in this crazy world. I will do my utmost but appreciate your assistance in this effort!
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