I have been busy of late. And sick. Really, very sick.
First of all, I now have a stairlift (as I have previously blogged about), and a wheelchair, and the bathroom renovations started today!!! And on Friday I will be picking up my very own (albeit second hand) CPAP machine, thanks to some great donations from friends, family, and a couple of strangers (all of whom warmed my heart – thanks guys!!!). Great things are happening, and I am thankful for all of them.
Still….. I have to admit, when someone tells me to be thankful, I just want to slap them around a little. Seriously. Just a little.
I had a phone conversation today and told someone about the bathroom renovations. They thought it was fantastic, which it is, and proceeded to tell me what a lucky country we live in, which we do. I am not debating these points. I am debating the manner in which they were expressed.
Like I should be thankful. Like I should thank my lucky stars and bow down to all that is holy. Like all is right with the world as I know it.
It felt like this person thought that I snapped my fingers yesterday and it all just happened.
It felt like this person thought that all my dreams had come true and I no longer had anything to worry about.
So for those of you who tend to not look past the face of things, a little education if I may…
These things did not happen at the snap of my fingers, though if wishing only made it so! These things happened after many hours of work from myself, two case workers, and many many other individuals in various organisations. These things happened due to people who have never met me, fighting for me so that I could receive funding. These things happened due to individuals donating their time and money to these organisations. These things happened due to taxpayers paying their taxes. These things happened due to hundreds of different people doing hundreds of different tasks, specifically for me.
That isn’t just lucky. That is AMAZING!!!
(((Someone pointed me to this article today on FB – indeed, compared to other countries, it looks like Australia has it good… However, as the writer points out – “The fact that poor Australians get higher benefits than many poor people in European countries or the United States doesn’t actually help them pay their bills.”)))
Plus, other involvement has included… Over a dozen appointments with case workers. Over half a dozen appointments with my GP. A handful of appointments with Occupational Therapists, and Physiotherapists, and builders, and salesmen. And all of this just to get approval. Then there have been the drama’s involved in delivery as well!!!
Nine months of active work has gone into these things. It is only by chance that they are all happening at the same time.
Add on to that the four + years of not having a diagnosis – therefore not even eligible to apply even though the equipment and modifications were needed. Four + years of my family and friends helping out, and being patient, and busting their arse. Four + years of 90% house arrest for me (compared to others in similar demographics), despite having committed no crime.
So yeah – bet your arse I am thankful. However, please do not ever treat such things so *meh* that it seems like one just snapped their fingers to make it happen. Australia may be a lucky country, and we may do better than most, however we are still a long way from perfect. A long way. I understand enough to know that not everyone is as lucky as I, even in this great country. The stair lift guy put one in for someone who had been stuck upstairs in his home for over a year! At least I got to go out every now and then! I may have been approved for a wheelchair within six months, but many are not.
Thus maybe Australia is just luckier, rather than lucky.
As for the second point – these things do not make everything ok all of a sudden. I still have Ehlers Danlos. I still have Aspergers. I still have PTSD.
I also have Spondylosis/osteoarthritis, obstructive sleep apnoea, dysautonomia, auto-immune thyroiditis, asthma, irritable bowel syndrome, migraines, myoclonic jerks and astigmatism.
These I just copied from the list my GP wrote out today for university. Seriously – I’m not making this shit up!
Do you think I still have things to worry about? Do you think that my great “equipment and home modifications” fortune is going to make everything better?
No, me either.
I am thankful. I am thankful to each and every person that has made all this possible. My life is better now than it was a month ago.
So dear person I spoke to this morning… I AM thankful – you don’t need to tell me to be. I am a caring compassionate decent human and I don’t need to be reminded what good fortune looks like. I can spot it a mile away. Please don’t treat me like an ungrateful child. More than that, please don’t act like I am being spoilt. I didn’t win the lottery, much as it feels like I did. I am receiving support so that I can live in the world with everyone else.
I still have plenty to worry about. Life may have just been made a little easier, but you will never know what it is like to live with all those diagnosis’s every. single. fucking. day. You will never know what it is like to have your abilities in life cut so drastically at such a young age. This is not *mere* disability. It is illness as well. It isn’t a matter of learning how to do things differently because suddenly my body doesn’t look the way it used to, or work the way it used to (although it is certainly that as well) – it is a matter of just not being able to do things at all for much of the time. It is a matter of living with 24/7 pain, excruciating pain at times. It is a matter of living with random dizzy spells and nausea, and vision that goes blurry at a whim. Joints that dislocate at the most annoying times. Migraines every day. And honestly? Chronic Fatigue Syndrome would be on the list, but given how fatigued one gets just reading the damn list, it isn’t really necessary to point it out!
It is also living with uncertainty. I could die in 12 months. I could live until I am 90, though I’m starting to seriously hope I don’t. I know I will deteriorate over time, but I can’t tell how fast or slow that will be. Myoclonic jerks are actually a symptom – not a condition by themselves. I’m still not sure what they are a symptom of as I am on a waiting list to see a neurologist. I have been waiting for months with no idea of when an appointment will become available. It could be MS. It could be Parkinson’s. It could be due to lesions. It could be a few different things, and none of them seem overly appealing to me.
Yeah – the idea of a “free” bathroom renovation is great, and I am appreciative, but it doesn’t take the fear of what is causing those jerks away, you know what I’m saying?
Every time I visit my GP, I have a laugh at it all. I joke and carry on and she always comments about my joviality to which I always reply something along the lines of “you have to have a sense of humour to deal with all this shit”. I joke about it with my friends, and they joke about it with me and I love that! That isn’t the same as treating it as though I have a cold that will be all better with a couple of aspirin and 48 hours bed rest. My friends never treat it like that.
I really do not understand why you do treat it like that, with such a cavalier attitude. Especially when it hurts me so much that you do. Please stop. This is serious stuff, and I need you. Not to babysit, or collect the mail when we go away, though we do appreciate those things. I need YOU. I need you to give me a hug and tell me it’s going to be ok. I need you to learn what is going on with me and start taking it seriously. I need you, of all people, to understand that I didn’t just click my fingers and make these things happen, and that these things don’t miraculously make everything better. I need your support, not just your occasional help. Given your position in my life I don’t think a bit of real support is too much to ask.
Don’t worry though – it’s not like I would ever ask for real. I wouldn’t ever do that.