I am reading a book at the moment about a mother who has lost her daughter to problems associated with diabetes. Last night I read a part in the book and my thought 'oh my God, I can so relate to this and it says it better than I ever could'.
..Not too long ago Nicole and I were living our own lives. And then she got sick and, by the score, doctors and nurses and therapists and social workers began falling out of the sky. ... In our wallets, their faces replaced those of dead presidents. ...Our lives were no longer our own. Every facet was governed and judged by someone else. First we were free, then we weren't, and now we were here. That's all I know for certain.
This is exactly how it feels if you have a child with a disability. Your life is inundated with people. Don't get me wrong, I have extremely grateful for all the help we receive. It's just that life is very much different. At the end of the day when you might throw off your bra or when you get up of a morning and think you might leave your nightie on until you finish tidying the house, you can't. Well maybe you can, but your house is going to have carers in it and I am sure they don't want to have their retinas burnt haha.
Your chain of thought changes and this was brought home to me this week. When I was following the ambulance to the hospital when they took Peter up, my mind was racing a dime a dozen. In the five minutes it took to get to the hospital, I had rung Jade, Peters sister and worked out a plan of action.
With Ryan in respite, my mind was racing... If they kept Peter in, Ryan couldn't stay in respite as it was Easter. Okay I will have to ring CCRC, QMDA, Focal and Alara to try and organize full time help. I had formed a plan of action in my mind and all this and the phone calls in that short drive.
Luckily Peter is fine and all this didn't have to happen.
Now for some observations from the hospital.
Shoes are optional, as most don't have any on.
You have to tell everyone around you why you are there and find out why they are there.
If you have kids, it gives you the right to talk really loud and try and be the centre of attention.
It's okay to use your phone and talk as loud as you can without going outside.
Speaking of outside, it's fine to go out and the staff spend forever trying to find you when your turn comes up (if it was up to me, you then miss out on that spot and the next in line goes).
If you eat chips or any other food, you can more than welcome to drop it on the floor.
Shifting to a different seat to get away from weirdos doesn't work, they just follow you so they can keep telling you about their kidney stones and past medical history.
Thank God we only have to go there rarely (third time in our lives, all what they thought were heart related and closest place with the right equipment if needed). Private health insurance is priceless, when it means that at other times we can go private and not deal with the above situation.
Thursday 28 March 2013
Wednesday 13 March 2013
How much can a bear bear?
This is a whinge, but I need to get it down on paper - well in word form. So if you want to leave my pity party, now is the time to go.
Years ago a very dear friend said to me "You are never given more than you can handle". I have always taken comfort in this and believe it to be true.
I look at my close family and know that they struggle and panic with son having asthma occasionally (not trivialising asthma as you will see). This is their level of what they can bear and that is fine.
Now while I might complain or use humour to cope, we normally get through things and come out the other side, because it isn't more than we can handle.
Today has me wondering, if maybe I have reached that limit. Will I be pushed to crack? Is this some sort of test? WTF did we do in a past life that we have to experience it this time around?
If you have read my past blogs, you will know of some of the medical things that we have been through, but here is a brief run down:-
1 ovary removed, 3 miscarriages, 1 ectopic pregnancy, 3 caesarians 1 hysterectomy (well another would be impossible) gall bladder removed, in hospital for a week with asthma that they didn't think I would come home from, diabetes, asthma, severe depression and a back that as my gp says "is fucked".
Now with the kids. All 3 had asthma. Jade had a couple of hospital visits with asthma. Troy for the first 5 years of his life, would go to hospital every 6 to 8 months to get grommets, had adenoids out twice and tonsils out. Due to this he had some speech problems and had to see a speech therapist. Before he was 2, he had tests for what they thought was epilepsy but which turned out to be cluster migraines. We were told he would either grow out of the or have them for life. Thankfully he grew out of them around the age of 8.
Peter had his tonsils out at around the age of 35. Ryan had his done when he was around 10. Then of course Ryan with DMD and all that goes with that - including losing all movement after his rods being done and the problems of his back opening up. And Ryan going to commit suicide when he was younger.
We had a painting business that at one stage had 3 lots of people in a row not pay, that crippled us and a worker that went up on a murder charge of killing his wife. God this all sounds like a bad novel.
So all of the above is a summary of 1985 until 2012. Then we have 2013.
I think that this year alone, has seen me cry myself to sleep more than the rest of my life combined.
We are still struggling from the dickhead that ripped us off in January. The same week that happened, Peter's work hours were cut in half by his boss. Peter had the breakdown, Ryan had breathing problems and somehow in all that was 'normal' life.
The latest is that Ryan is having panic attacks. He has valium, which I hope helps.
I feel hopeless to be able to help my family and keep us all on the even keel of life. I'm tired. So very, very tired of the fight. It always seems like, we crawl our way to a good place, then get kicked in the teeth, never having time to enjoy what is happening. It is also very hard to focus on the positive when the negative seems to swamp you.
I know I will be fine. I am seeing a psychologist who understands the battles we are going through, as she use to work for DSQ in Ipswich.
But you do really have to wonder, just how much can you bear and what happens when you crack your breaking point.
If you stayed and read all this crap, I can now tell you that yes it has helped to get it down and out there. I don't want hugs or sympathy or anything else. Just sharing the burden is more than enough for me. :)
Years ago a very dear friend said to me "You are never given more than you can handle". I have always taken comfort in this and believe it to be true.
I look at my close family and know that they struggle and panic with son having asthma occasionally (not trivialising asthma as you will see). This is their level of what they can bear and that is fine.
Now while I might complain or use humour to cope, we normally get through things and come out the other side, because it isn't more than we can handle.
Today has me wondering, if maybe I have reached that limit. Will I be pushed to crack? Is this some sort of test? WTF did we do in a past life that we have to experience it this time around?
If you have read my past blogs, you will know of some of the medical things that we have been through, but here is a brief run down:-
1 ovary removed, 3 miscarriages, 1 ectopic pregnancy, 3 caesarians 1 hysterectomy (well another would be impossible) gall bladder removed, in hospital for a week with asthma that they didn't think I would come home from, diabetes, asthma, severe depression and a back that as my gp says "is fucked".
Now with the kids. All 3 had asthma. Jade had a couple of hospital visits with asthma. Troy for the first 5 years of his life, would go to hospital every 6 to 8 months to get grommets, had adenoids out twice and tonsils out. Due to this he had some speech problems and had to see a speech therapist. Before he was 2, he had tests for what they thought was epilepsy but which turned out to be cluster migraines. We were told he would either grow out of the or have them for life. Thankfully he grew out of them around the age of 8.
Peter had his tonsils out at around the age of 35. Ryan had his done when he was around 10. Then of course Ryan with DMD and all that goes with that - including losing all movement after his rods being done and the problems of his back opening up. And Ryan going to commit suicide when he was younger.
We had a painting business that at one stage had 3 lots of people in a row not pay, that crippled us and a worker that went up on a murder charge of killing his wife. God this all sounds like a bad novel.
So all of the above is a summary of 1985 until 2012. Then we have 2013.
I think that this year alone, has seen me cry myself to sleep more than the rest of my life combined.
We are still struggling from the dickhead that ripped us off in January. The same week that happened, Peter's work hours were cut in half by his boss. Peter had the breakdown, Ryan had breathing problems and somehow in all that was 'normal' life.
The latest is that Ryan is having panic attacks. He has valium, which I hope helps.
I feel hopeless to be able to help my family and keep us all on the even keel of life. I'm tired. So very, very tired of the fight. It always seems like, we crawl our way to a good place, then get kicked in the teeth, never having time to enjoy what is happening. It is also very hard to focus on the positive when the negative seems to swamp you.
I know I will be fine. I am seeing a psychologist who understands the battles we are going through, as she use to work for DSQ in Ipswich.
But you do really have to wonder, just how much can you bear and what happens when you crack your breaking point.
If you stayed and read all this crap, I can now tell you that yes it has helped to get it down and out there. I don't want hugs or sympathy or anything else. Just sharing the burden is more than enough for me. :)
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