How can I explain a life led by Rheumatoid Arthritis. Do I do what I want, can I go when I want OR are these the things that only this disease decide. Silly question, No it is not, so let me try to explain to you why. I can’t hide from it or put it behind me no matter how much I want to. I hate this disease and trying to explain it can be just as painful as the disease itself. Living it is my best Explanation!!!
Getting up going when and where you want is a joy but maybe getting up and just going anywhere is how we live with Rheumatoid Arthritis. Deciding what your day is like or what you will do is simply a wish for us because most of the time this disease decides our day.
Sure we want to make plans and carry them out but we’re afraid because we never know how we will feel or if our bodies will be up for anything at all. Planning for us is just another word we remember so well. We don’t have the luxury of making them short-term and definitely not long-term. In our minds we feel ” yes” we may be able to do this or that or go here or there but our reality is we never know from day-to-day how we will be feeling. This by far is one of the most misunderstood things that we have to deal with. Sure people feel we should just get up and go but they do not understand what it’s like to have your feet hurting so bad you can barely walk or you’re so tired you can’t make yourself get up at all. This may all sound so trivial to many but our bodies are dealing with a variety of things, something that would take us a lifetime to get other to comprehend. The pains and fatigue that even the internet can’t explain. Understanding that our lives are not our own anymore is an issue we are still trying to get through to everyone. Rheumatoid Arthritis has a hold on us and it dictates our days which ultimately controls all of our plans.
We struggle to get others to see that we often put on a brave face and try to do all that we can and sometimes can’t in spite of everything but in the end, this disease takes over all that we are. This is not an excuse for what we cannot do or when we cannot go, it is a reality that we live with and it is a harsh reality and not accepted by anyone. This is the thing that causes us so much emotional pain and grief. We have to deal with all this disease has taken from us and deal with the aftermath of its relentlessness.
Our stories may seem as if they’re being repeated over and over again and that tends to bother many but the truth is our stories hardly ever change. So when we are asked and tell you about ourselves and our days just know we are suffering from what this disease puts upon us daily. The pain, fatigue and loneliness which is with us always and that hardly ever change. Not a day goes by that we don’t feel sad or lonely because we are being isolated by all this disease does to us. We first have lost ourselves and so much more all because a disease barely understood has entered our lives. We long for our old selves, the days of joy without limitations, understanding and support all the things that seems to be just out of our reach.
How do we explain the depression that comes with having Rheumatoid Arthritis. It chases away so many that’s important to us, stolen our abilities and it has left us to figure out what to do with the outcome of not being able to handle our lives in the way that we were so accustomed to and this really deplete us mentally. Does all of this sound unreal!! Think about having a debilitating auto immune disease that has hindered your performance in life, stolen your family, changed the outcome of so much and left you pain ridden, fatigued, confused, depressed and overwhelmed. ” Do I need to explain any more about having Rheumatoid Arthritis to you”. If you had it, I wouldn’t have to explain it at all.
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