What they won’t tell you, and I suspect because ‘they’ don’t really know how or why, is that if you have more than one Autoimmune illness you will have periods of relapses, attacks, flares. I have never heard a doctor or specialist speak with anything approaching certainty about:
1. How long it will last.
2. How it feels like.
3. How bad it will get.
4. Why its happening.
5. Why they are almost never the same as the last one.
I feel completely powerless when they happen and that is also a cause of a lot of my emotional and physical pain. I have had everything from a ‘full body’ flare including all possible areas of the body ( I call this the PKM -Please Kill Me flare) to ones that may isolate themselves to areas of your body (ie. Waist down). Another fun part about all this is the length of time they may take away from your life, or the life that is usually possible for you. I have had ones that will last from several hours to over six months. I don’t get a choice in any of it. I just have to ride it out and do my best.
I once watched a movie called “The Perfect Storm” where three severe storm cells or weather “events” converged to produce this one almighty storm; something like Armageddon. I often think of this analogy when more than one of my illnesses attack at the same time. I become a human perfect storm and it really is very little we can do but to baton down the hatches and ‘ride the storm’. We try and manage the moments with every survival tool we have in our ever expanding kit which includes meds, aids, equipment, meditation, affirmation, books, stretches, heat packs… etc. I am going to make a point here of saying that flares don’t just happen to me because they affect my hubby in very real ways too. He has to ride the storm as well! Sometimes we can emerge 6 months later, after a tour of duty and feel shell shocked and disconnected with the rest of the world, having missed half a year of ‘normal’ life and disappeared down the vortex of pain, doctors, emotions, sleeplessness and medications.
It is for this reason that we simply stare when someone asks “why do you take all those toxic meds,” or “Why don’t you try…” or “You could get better if you wanted to,” or “You just need to push through it…” They clearly have no idea of what they are talking about and certainly haven’t been around for the last 8 years and witnessed what we have done, what we have taken, what we do, what we struggle with and how much pain and suffering we endure. Many of you reading this will already understand what I have just written, but for those of you who are here to learn, I cant emphasize enough that if there was an easy fix we would have found it by now.
I have often been asked “what does it feel like?” and because it is almost always different each time, this is why it so hard to explain. It like asking someone to describe what yellow tastes like. Or what dirt sounds like. It is hard for me to separate the symptom that might be happening, with the emotion that it will set off inside me. For example; When my vision blurs it may not be in itself a painful experience (unless the nerves at the back of the eye are screaming at the same time), however, the feeling of being blind, helpless, frustrated, exposed, vulnerable is frightening. The joint pain can feel as bad as a truck driving over your hips, ankles, feet, hands or as dull as a hammer being slammed over them. The emotions I get when I feel like this can range from anger, frustration, futility and loneliness. The Balance issues can feel like the world is permanently shifting and spinning and you cant stop that swirling, nauseous, helplessness. When even sitting up or going to the bathroom can be an exercise in frustration and humiliation. Difficulty swallowing or breathing is one of the most frightening, frustrating, dehumanizing, well… I just cant explain it really. It scares the hell out of me! Itching, burning, numbness, well most people can imagine those things with something close to accuracy, but probably not experiences them all happening at the same time. For weeks. And that’s the other part of the equation that people forget. Time. I can remember a lady saying (in kindness I am sure) that she understood the awful pain that it must be like as she had been through 48 hours of labour. I thanked her for her empathy and sharing but I did not respond that sometimes that level of pain can last for weeks and I don’t get a baby at the end of it. For me there is no reward at the end only the reward that I am still alive to tell the tale.
All of this is a reminder to me that life is not fair. Life is indiscriminate. Suffering is everywhere and there is so much about the world, the universe, life, biology, disease and the human condition that we do not understand. Our only real aids we have to navigating our way through all this mystery and pain is love, compassion, hope, imagination, inquiring and open minds and courage. Going through all that my hubby and I go through it has changed one thing though, it has changed how much respect and love each other and the confidence we have in ourselves and each other. Hopefully it will be enough for when the next storm hits.