I'm sorry I have been absent. It happens sometimes when you have barely enough energy to get yourself dressed some days, or even eat. It's when the times are bleak that you feel the weight of the pain so much more. Sometimes it gets weary, I don't like to dwell in the crappy things but there are times where it is kind to allow yourself a bit of "sulk time". It is ok to take time to take care of yourself, to nurture yourself by admitting that times are tough.
It's also hard when you know others are going through difficult times. It is hard to have friends, or people you know; who are facing an entirely different fight - one for their lives. It never helps to compare your suffering to another persons'; as it only makes for pity and bad feelings helping no one. Suffering is suffering, no matter the cause. However it does help to see that the world is much bigger out there, and more important things in life! Enjoying what you can do when you can, sometimes you forget your troubles when you're having too much fun!
I just get so tired, it wears me down. I get really negative, hating the world; I even find myself wishing I was normal again. Then I wouldn't need to fight so friggin' hard all the time! It's not only the fight of living a normal life; but it's the fight within - me against Pain. That fight sometimes spills out into the world, leading me to have some antisocial moods. I do wish I could be more stoic, but it is what it is - I can be a right bitch at times! It's hard to be around people, trying to act normal when you feel your control slipping away; your temper flaring along with the pain. With family and close friends, this isn't a big deal. They know what you go through, they forgive you for your impossible-to-be-around moments. They know I don't mean to be difficult. It's the general public that I can't deal with.
One of the reasons I find it hard to get out into the world; is the careless way people move through the streets and on public transport. While sitting on a bus some weeks back, a girl carelessly whacked her bag hard in my arm. She didn't mean it, she didn't even notice (nor care). But to me, that thoughtless bump gave me the sensation of my whole arm being shocked by an "electric" charge, taking my breath away in its intensity.
I regained control quickly, smothering the flames so they are just smoldering; but that momentary loss of my pain control cost me a lot. There is no avoiding this in the real world, I'm realistic and I don't have a sign on my head and I certainly don't want one! I'm not going to shut myself away completely. But I also cannot hide what does, in fact, hurt me a lot.
She got all nasty, talking about me with her friend, probably about me making a big deal from nothing (don't know, don't care - I have headphones!). Her disbelief is not that uncommon; many people have no idea that bumping someone can really hurt them. It is often rudeness and carelessness that do the most damage; curteous people still do the same thing at times, but they are often more aware of what is going on around them and consequently, don't end up hitting or bumping into people as hard. What is minor for some can be a big deal for someone else.
Had she had the misfortune of bad sunburnt once and had someone bump her, perhaps she would have more consideration. Thoughtless people like that are everywhere, they don't really matter in the scheme of things. It's a spike in the pain that happens often anyway, from walking into the door frame; or rolling over in bed. But that isn't from my carelessness, it's just a part of it all. But I still don't want it from the rude and inconsiderate people passing by.
Of course, it does make a difference if I'm "prepared" for it somewhat. When I do it myself by accident, they tend to be things I could have foreseen. I am always more clumsy when I've got arm contractures. My shoulder drops down and my posture becomes crooked. Those times I stumble into things and end up banging my arm on something. Or my head...
I'm also bit of a bully. I push myself too hard at times, I'm not as bothered by short-term "spikes" (as opposed to the longer-lasting "flares"), though they aren't all that fun to experience. They can be useful though; be be sure that I have pushed 100% to my limit. Perhaps not the smartest way to handle it... pacing is better, gentler... but this is my crazy way. I experiment with things; noting down what I do and what effect it has; good and bad. It is useful for pushing the limits of what I can adequately do; it is also a good way to keep the training going and maintaining what I have.
It's a small, but valuable tool in my self-management kit - it gives me some control back. It allows me to build my tolerance, make goals, work out the most "efficient" way of doing things, while trying to minimise flare-ups. It also pushes me when I need a push, while being flexible enough to take a time-out or a longer break from it all at times. Learning to take those breaks when I need them, is a whole different story though... ;)
It can be all-consuming, any chronic condition can feel like you are juggling an extra job. It is much harder to escape your pain than it is to hand in a resignation. Meditation, yoga and dancing; some very useful and wonderful escapes from reality and into a place where you are free. My mother sent me a self-hypnosis Pain Management CD which I haven't tried out yet, but I have had hypnotherapy before. It's a great experience, one that I think has helped me a lot. Being able to meditate is something that takes a lot of practice, especially if you're like me and a bit neurotic!
Music is one of the big guns for me. It not only relaxes me to hear, it also gives me a world that I can enter during the bad times; where I can drown out the scream. I have playlists on my phone, of music to relax to; music to uplift me; and music for the pain. The pain songs are frequently played and ones I enjoy. I find that they somehow ease the burden; while giving me something to focus on that isn't the Pain. It doesn't really matter what sort of music it is, so long as it is something that lets you feel free. Something that moves you deep inside and makes your fingers and toes tingle. For me, it's classical music. I find the complexity soothing; helping me find the counterpoint of my very own, in the cacophony of thoughts and pain.
My exam situation hasn't changed much, but I've let go of it all. I'm not going to let it get to me anymore. I think it really is a case of downright laziness rather than outright malice. This is what happens when you are in a "unique" situation that they have never come across before. I am certain that they have encountered someone with a disability before; only most likely they just gave exemptions because it was the easiest option, rather than working on a proper solution.
However, something much more serious than my own hangups over here is the recent funding cuts to educational support for children with disabilities. The support network of teachers, teacher aides and helpers; to assist these children in attending standard schools, many of which may not be able to without extra support. I am much more disturbed by this, than my situation. I can complain - loudly and often; I can push and fight. I have a voice and the years of experience dealing with crummy disability-related bureaucracy.
These children are going to miss out on the opportunities of a normal education, opportunities that will give them the best chance to become independent (and naturally, tax-paying) adults. Who is going to fight for them and be their voice? They are in a much worse situation than my inconveniences. 300 million Euros cut from those children who need the most help; many will fall through the cracks of an overworked education system. I understand that they need to cut back on spending; but choosing to cut spending in education, to cut 5000 teachers and support staff for the students who are the most vulnerable simply defies words. I will never understand their reasoning; how can they justify such a cruel austerity measure?
I was sick for a few weeks. My wisdom tooth really should come out, but for someone with uncontrolled CRPS... probably not a good idea until I have seen the pain specialist. Maybe it can be done, so long as precautions taken (extra vitamin C beforehand, different anesthesia technique). If I were normal, that tooth would have been long gone and sitting in my hand right now (I would love to examine my own tooth - freaky dental-nut that I am!). I get prone to colds and infections only when I'm doing too much, or when I am too stressed.
It was a wake up call of its own, to remind me to take better care of my mental, as well as physical, health. It made me bring the meditation back into my life, as well as the yoga. Sickness, pain, dark moods... sometimes they are only there because you're not paying enough attention to the things you should be doing for yourself. Listen to the messages your body give - not just the whinging screaming stuff but the whispers that are often drowned out. Take care and be kind to yourself!