On a Razor’s Edge
Living with an autoimmune disease like Lupus.. is life in the edge of a razor. You walk a fine line of conformity to strict routines, and defined boundaries, and a small deviation can send you sailing right off – painfully. The longer I live with this stupid condition, the more I see that the only people that really understand what that means are the other people directly living it with you. That is not your family, or your spouse, or your healthy friends that say they are there to support you. It is your fellow warriors that are also afflicted. There are a lot of people that will tell you they “understand”. They will say they are supportive. The truth is, they have no idea how to be.
I prefer to write when I have something more inspiring to say. I like sharing my breakthrough moments, and successes.. but right now, at this moment, I feel very low emotionally and I have to put a few thoughts into print. One of the worst things about dealing with loved ones is that you end up spending more time and energy explaining to them what they should already know, and feeling bad (like it’s your fault) about disagreements, conflicts, and perceived disappointments. You feel bad that you have to tell people no. You feel bad that you have to tell yourself no. You feel bad that people don’t understand why any of that is happening. You feel bad that you have to explain it to them again and again. You feel bad that you are facing limitations. You feel bad that you have to pick and choose between not only the things you need to do and want to do, but also between the things you want to do when they are all there is to choose from. We Lupies could have all the money in the world in our hands, and it’s not going to take away the fatigue, the muscles that rebel and quit on us, the nerves that inflict pain and unwanted sensations and movement, or the risks of everything we are exposed to every time we try to go anywhere and socialize. Every move we make has to be a calculated risk assessment. There is no such thing as a spontaneous decision in my life. I can’t just “Hey! Let’s go to the beach today!” anymore. I can’t have a friend calling me up and saying “Let’s go have lunch” without warning, or drop everything and change my plans for a day where I have set aside to take care of matters at home. My reserves are precious, they are small, and I have to save them for the most critical things. When those are done, then I may be able to choose things that I “want” to do for myself otherwise. The next thing that happens on the trailing end of it is… someone placing a demand on your time, and your energy, what little of it is left. There is always someone that thinks they know what is best for you. Always someone that wants to put their own interpretation on the situation. Always someone with their own brand of a good idea. They also rarely want to hear what you really need.
Real life with real disease is boring. It just is. As one writer put it – and I still find this so true, even after 4 years of this – then every once in a while, something truly terrifying happens… I guess it keeps us on our toes, but honestly I’m kind of getting tired of it. Both the boring, and the terrifying are things I could do without for a while. Level would be nice. Not having to manage someone else’s feelings about my situation would be REALLY nice, considering I have enough to deal with managing my own. Hint for anyone living with an autoimmune patient: Don’t put your issues about it off on them. They’re sorting out their own challenges, so you’re going to have to sort yours too. Don’t knock them off of their edge. Don’t disrupt what little balance they’re maintaining. It’s so hard to get back.
My main focus is always telling people they have no expiration date, and they can do more than they are being told is possible. All of that doesn’t happen without some backing, some support system (which ideally SHOULD be at home first and foremost), and people that don’t create oppositional static for you. I would love to tell you that the changes I have made, and what I am doing now is easy, but it’s not. In fact it is more work, harder for me, than it was just being in a state of mental paralysis… not progressing, not improving. Giving up is easy, and you at least feel initially like you can lie your head down and rest (which is about all you ever think about doing when you have an illness like Lupus). It accomplishes nothing, but it’s comfortable. It’s also boring. Quickly. I talk about the successes, the positives, the motivation.. but it is because I have to keep my focus there in order to do it. It’s not easy. Not one step of this has been easy.
The person that knows best what they need is the one that has a daily war to fight with this disease in their own body. If you really want to support someone like me, you’ll listen to what we are saying and not try to come up with a fix for everything from your own perspective.
Posted on May 26, 2014, in I Am That Wolf, Things That Make You Go... AAAaaaauuuggghhh!!! and tagged Autoimmune, Autoimmunity, Chronic Illness, Chronic Pain, Fibromyalgia, Lupus, Lupus Awareness, Plaquenil, Reinventing Yourself, SLE, Support groups, Systemic Lupus, Tala Smith. Bookmark the permalink. 7 Comments.