I have no idea why I am suffering from not only a flare up with AS, but with Epilepsy as well. Maybe it's the weather, who knows, but blaming the weather is a sound idea to me, especially as I'm British. We like attributing things to the weather, so much so many in other countries people believe that it is our main topic of conversation and we are never happy with it. No matter how good, or bad it is, we moan that we could do with nice sunny days and when that happens we start saying things like 'Oh we could do with some rain, it's too hot.'
Anyhow enough with the weather, now to get on with the real topic of this post.
When these flare ups happen one of these conditions starts the ball rolling, then the other joins in to help it travel faster, while I am stuck inside the ball with AS and Epilepsy not playing nicely with each other. I'd love to send them to the naughty step and give them a time out to get some respite. However much this is possible in my mind, the reality is that there is not much I can do until their games are over. Rest and relaxation help during this time, but it does get frustrating as it limits what I can do until it passes. As well as the physical problems that come with this situation, I'd rather not be in.
You might be wondering what effect this is having on my daily life?
With the AS flare up, I am in a good deal of pain in my lower back, hips, knees, shoulders and neck. As well as being slammed by fatigue, which is far more than just feeling tired. I'm waking up feeling stiff, sore and as if I haven't had a full nights sleep.
Reaching up to the shelf above the kettle to get the coffee down is a painful task to do. If I sit for too long I become stiff and sore, which leads to great discomfort when I go to stand. Which leads me to standing, if I do this for too long without sitting for a little while, I become stiff and sore. It's like a double edged sore, or a damned if I do, damned if I don't situation.
Using the phone for example I have to keep swapping the phone over from side to side as my shoulder becomes painful and stiff, from my arm being kept in that position for too long. My mobile I can put it on speaker phone, which eliminates this problem, the house phone however I can't.
Climbing the stairs is painful and the hills around here are feeling somewhat steeper than normal. I need to take a break from walking up the longer ones, to catch my breath and to make sure I don't push it too much and that walking up it becomes painful.
I am also having random shooting pains coming from my lower back, that feel like lightning strikes, which at there worst have caused me to drop due to their intensity. which feel like someone has stabbed, or punched me hard in the middle of my back, with the pain arcing out to my right hip. When this has happened it has been hard to stop myself screaming in pain and I have instead covered with a very bad impersonation of gregorian chant. Due to having issues with painkillers I have a high tolerance to pain, but these push it past my limits.
This is bad enough and hard to cope with, but with epilepsy added to things it takes a great deal of inner strength to keep going and positive.
So what affect is epilepsy having on me at the moment?
To start with is the obvious more seizures than normal, now the types of seizure you can have is varied, from absence to partial complex and tonic-clonic. There other seizure types as well, but those three are the main ones that I am being plagued by.
I have moments when I just zone out and the lights are burning brightly, but there is no one home, which is the easiest way to describe the absences. With the partial complex I just sit rocking and I am not aware that I am doing this. These are both causing gaps in my memory, as the time I am in these state I am unaware of what is going on and any train of thought I am having is more than just derailed, but at worst the stations have been burnt to the ground. Worse are the tonic-clonic, which are the most commonly thought of seizure when it comes to epilepsy. These are putting extra strain on my joints and back, which is having a knock on effect to the AS flare, aggravating the already pain filled areas.
After the seizures have past I enter something that is called the postictal state, where your brain is recovering from the abnormal discharges that cause the seizures. Where I suffer from confusion, disorientation, poor hand to eye coordination, balance issues and hazy memory. Then there is the tiredness and fatigue, which exasperates this symptom of AS.
It is like both of these conditions are having a domino effect upon each other and the dominos have been set up by Escher. In time this will pass, but how much time it'll take I cannot say as it does vary. I am having days where I think this nightmare ride is passing and I am being good and resting, not falling into the temptation to run back into doing too much. However at they moment they are being a brief respite, the eye in the middle of the storm. I just hope that the next will be the start of returning to normal, well as normal as I get, and it is this hope that keeps me going, along with the support of my family.