The definition of Exacerbation: A worsening. In medicine, exacerbation may refer to an increase in the severity of a disease or its signs and symptoms. For example, an exacerbation of asthma might occur as a serious effect of air pollution, leading to shortness of breath.
Until I was diagnosed I had used this word a handful of times. It had no real meaning in my life.
Once diagnosed with MS however it became an all too familiar concept, one that was to be dreaded, avoided if at all possible and when it happened….panic.
Usually my MS flares up or exacerbates when I get an infection or am run down through over doing things or stress. The first question asked by most MS nurses when you call up about a possible relapse will be do you have an infection? Have you been tested for a UTI? and when this exacerbation began I made a little drawing (I was going to base it on a scene from Shaun of the dead where they talk about exacerbating things but I got off track)
It’s not the best or most scientific explanation ever, but it kept me amused for an hour making it and it does give the general idea.
Time to go and take out my thrice weekly injection that tries to control this idiotic immune system of mine. According to the Neurologist I saw for my Bi-annual check in today it’s working pretty well, not that he ever sees with his test, the deterioration I feel happening slowly. I wish I was somewhere where I would get an MRI every so often that could show empirically what damage has been/is being done but unfortunately not.
Crossing my fingers this silly exacerbation goes away soon I can’t cope with the fatigue, spasms, vision problems that have come with it.
I told my Mother how much she terrified me when I was younger, that there are still moments when she’s angry that she scares me.
The look of disbelief on her face said it all to me. That a woman who prides herself in taking care of children didn’t recognise her influence on her own children and those around her.
Yes I spent my childhood hiding from that anger, that rage that escaped whenever I did something wrong, it’s why I’m so good at spotting “dangerous” emotions in others. No, when I couldn’t look her in the eyes it was not that I was being disrespectful, it was that I was terrified to lift my head and if I looked in her eyes I would shake. I still do when in a high pressure situation where I feel obliged to look people in the eyes, my body quivers and I can’t control it.
So I remember only being hit by her twice, that does not mean the relationship was good. Did she not realise that when I couldn’t come to her with my problems? when I acted out as a child by stealing sweets from the local shop (the dog dobbed me in) the fact I wrote to a magazine (and got the answer back in the post which they found out) for answers I should have been able to go to my mother for. They didn’t know that I tried to run away as a small child, I packed a bag with teddys and books, but only made it 50 metres down the road before a farmer spotted me and made me walk back beside his tractor to our house (yes I lived in that sort of village).
That I was sick from the amount of alcohol I consumed, at home, alone, before they got back from work more than once. Anyone who has had someone do that near them will know the difference and spot it, but not my family until I was passed out in it on my bed.
She’s surprised at the fact my sisters children want to be close to her, now I may not like my sister but there’s nothing shocking to me that she’s trying to not be our mother. I don’t know what she’s like with them in general because I do not see them unless it’s a family gathering but I don’t see fear in them when they approach her.
I know how to calm her in general now, she knows I speak sense, I can often talk her down when I know she’s in the wrong. But it will not be my life, my duty to do that. I almost feel it should be, that I should be there to stop her showing that rage to others, to protect them from it and her from herself but I will not, for the sake of my own sanity what’s left of it.
Maybe it’s something that comes with getting older but I’ve become intrigued with my family history. I never heard many stories about my Dads side other than the bare minimum, for example I knew that my Grandfather was involved in WWII he taught dispatch riders how to repair and ride their bikes. I only found out most of the facts that I do know once my grandparents had passed away, they had all gone by the time I was 12 years old so I had not reached the point of wanting to know where I had come from by the time they had all gone.
I tell my Dad that he should write down his memories before he forgets them completely or he is gone and those stories are gone forever, adding to him that I wish he had told me those stories about his childhood when I was younger rather than repeating the same old stale stories time and time again then I might have shown more interest! Anyway…I’ll get to the point, I’ve realised that my memory is not good and I should really write down the little tales he does spin, when he tells me them, as boring or mundane as he thinks they are.
Today we were discussing his childhood, I mentioned that I had been looking at pictures of the area he grew up in after reading a blog post by another writer about the area he grew up in. It set off his memories and as sparse as they are they made me smile, made me sad, gave me a connection to his past that I’ve not had for some time.
My dad grew up in Northern Ireland, a post WWII baby boom child with three older brothers. The family owned and ran a linen bleaching Mill that is actually documented in a book about the Linen Houses of the Bann Valley (scary to think that I come from such stock as common as I am living on a council estate). I never hear many memories from my dad about he and his family from that time so the little stories tend to stick.
As young children my Dad and his one brother that was still at home by the time he remembers, would play at the mill watching the linen being laid out on the green meadows to dry in the sun. They would run around the mill playing around the machines and probably pestering the workers in the same way that I did with anyone who came to the house when I was a child.
They would get the men who were piling up the rolls of dried linen to help them make forts out of the rolls, creating the biggest temporary fort any child could want. With gaps to use as doors and windows they would play in it until the rolls were collected to be taken to another factory, pretending to be soldiers and such as the factory worked around them
While looking into the family tree I found a document that even my dad didn’t know existed. It’s a ships boarding record showing my Grandmother, Dad and uncle all going to South Africa back in the 1950’s to visit my Grandmothers family. I’ve found quite a few od them now and will be willing to pay the websites annoying fee (I’ve gone past the free period now) to print them off so he can see them. It saddens me that those boarding lists show that my Grandmother would take her younger children with her to visit the family in South Africa, leaving the older children at their boarding school and my Grandfather to run the business (or so I assume).
Leaving for months at a time due to the journey length on a boat, separating the family that was already emotionally distanced from each other. She trained as a home economics teacher so surely she must have know that the relationships that children have when young are important? I guess that unfortunately at this point in history it was seen as more important for young boys to be strong, to be trained to be independent and able to cope with the horrors that their parents had lived through. Discipline was everything and caring, loving them would always come second if not last.
What shouldn’t have surprised me was how few memories my Dad has of his grandparents. They lived in a house down the road from them but the only thing my Dad could tell me today about his Grandfather was that they used to see him on a Sunday on the way to church, where he would give them a mint imperial. His Grandmother even lived with them after her husband died but he couldn’t tell me much about her at all, the true legacy of an upper middle class family, no warmth, no connection between the people who are supposed to be bonded by blood.
I heard so many times in my childhood that ‘Blood is thicker than water’, that family is important and you ‘Should’ do this and ‘Should’ do that….I have now accepted that what my old therapist said is true…’Should’ is a bad word for me, it’s one of the reasons why I feel so appallingly guilty for so many little things. I try not to use it in my vocabulary too much now but it’s damn hard.
This whole ‘family’ thing confuses me a lot and always has done, especially since my fathers side classes people as cousins and ‘close’ family who I’ve never seen, barely talked to or in most peoples eyes would not really be part of their family. Third cousins, second cousins twice removed….in other words so far away in the blood line that marrying them would be completely legal and not result in deformed offspring, people I shouldn’t care about at all.
The digging into the past will continue, my Grandmothers side is intriguing and a post may follow about hers but more and more I realise my parents have improved on what theirs did to them, it’s just that they didn’t improve enough to avoid my emotional struggles.
This past few days my mind has been full of worries about my life, “will I keep my driving licence? can I keep working? There’s another form to fill in I must get it done.”
But in amongst all these worries my mind has been in the past, 70years in the past.
70 Years ago today Auschwitz was liberated and after accidentally flicking onto a program last week about a survivor of the Holocaust I have been watching many programs that have been made about the German death camps, prison camps, work camps throughout the second world war.
It puts every worry I have into a stark perspective. I have a home, food, clothes, heating, sanitation, medical care…..what in truth do I have to worry about?
I watch these people talking about their time during the war and what they had to survive. I am humbled and horrified by the things that humans can do to each other and the strength of the people who can survive it.
Jews, gypsies, homosexuals, political prisoners, anyone who was seen as ‘Undesirable’ to the Third Reich were tortured, starved and killed in the most inhumane ways possible, it’s hard to believe that this happened in the 20th century.
If you listen to the survivors the biggest thing that they are desperate for now is that what happened is not forgotten. That what they went through is not hidden, is believed and that the next generation understands what can happen if the hatred of a few is carried out by the many.
I’ve learned more about the reality of it by listening to these people over the past week than I ever did sitting in a classroom. The horrible truths that they speak of will stay with me forever.
The separation of the weak, the sick, children, the old, pregnant women who were all immediately gassed or killed, then thrown into pits or burned. Their clothes, belongings, hair, teeth all taken from them to be sent back to Germany or to be reused in the camps.
Children who were twins, experimented on in horrible ways to try and ‘find cures’ for diseases to benefit the ‘pure’ Germans.
Those that were left were worked on starvation rations, housed in sheds where people could barely sit never mind lie down. Covered in lice and surrounded by human excrement they were almost certain to contract a disease such as typhus or dysentery and many died from these if not because having them meant they were picked out as sick and murdered.
Unfortunately there are so few of the survivors left alive that their worry is once they are gone it will drift into the mists of history as ‘just another story’ and listening to them speak to camera they are trying to pass on their memories to the children of today so that it will continue in the collective memory.
I didn’t know that when the camps were liberated, the Allies made the locals come to the camps and look. To see what they were living next to and turning a blind eye to! They were walked around the camps, past the piles of the dead who had been left there to rot because the prisoners couldn’t bury them, to see the crematoriums where hundreds of thousands of human beings had been burnt en mass. I felt a certain amount of angry satisfaction that the Allies did this, as well as making the SS guards and other German workers that were captured when the camps were liberated, take over the tasks they had made the prisoners do. To bury the dead, to clear up the horrific mess that they had helped to create.
Not surprisingly this subject makes my blood boil. It doesn’t matter to me that I am not one of the ‘minorities’ that were targeted, I am a human being and that is enough for me to empathise with those who have suffered at the hands of people who were “just following orders” and committing atrocities.
The saddest thing is there are still people in command of countries that try to make this sort of thing happen. There are still those that believe they are better than others just because of their faith, the colour of their skin, the way they dress, the country they come from. How can this still be happening in this day and age? Why can we not accept that we all have differences but that does not make us any better or worse than others?
All any of us can do is speak out when we see people hurting each other, try to accept that we are different but that is not a bad thing and teach our children to do the same.
Let what happened remain in our memories for the human race to learn from and never let it happen again.
Last year I turned 30, now my friends and people I know seemed to make a big fuss out of this when they did and tried to do the same to me. They didn’t quite get that I really don’t give a monkeys about my birthdays. I like a card, I like cake, but that’s about it! Long story short, my birthday is in the middle of the school holidays so I never really had the whole fuss at school, people often turned down party invites because they were away on holiday…I learnt not to expect an awful lot and now hate having to make a fuss about myself so why bother.
In the clear out I’ve been having of my house this past couple of weeks, I found my pile of 30th birthday cards and the version my sister and family had done for me. It was genius and made me smile so as much as I can’t stand the woman I will admit that it was a damn fine piece of thinking. If you want to smile, ignore my notes, ignore the ending of this post and smile away I won’t judge you or be upset 😉
Here’s what they did….
and yes they were right, I would like to be younger again. But with the knowledge I have of how things should be and how to stand up for myself (and preferably with a better big sister) so that I don’t end up this messed up!
I wouldn’t say that but I’m sure there were times when it was fun even if I don’t remember many of them. Plus when I was little I didn’t know any better, I didn’t know that my family life was not the idyllic scene that we all wish for.
Yes I probably would have been offended if they’d got it a year or two out, but that much difference I think I would have got it…..I assume that this was just to fill a card and explain their intelligent comedy.
Woohoo! they got the maths right.
and with the cards I got a couple of silly things including a coke bottle with my name on it…not a full coke bottle, an empty one. Yeah, that’s what they think if me. OK so apparently the kids had insisted on sending it to me, but really? could they not have sent a full one and bought another one to drink? Bah
So if you ignore the background history of my sister and I, it’s a lovely gesture! It’s funny and shows affection but whenever a post about sisters comes up on facebook, an advert comes onto the telly saying about sisters or siblings and how important they are I sit and swear at it! I scream in my head “no they’re F&*$*&%g not! I wish I’d never known mine!!”
My family to a Tee. Abuse each other, ignore each other, treat each other like crap, but when it’s a birthday or Christmas then a polite card, a note and an obligatory gift to pretend that the rest of it was all BS.