I've been sick now for 20 months. I mean really sick, I have an auto-immune condition which causes me nerve pain every second of every day. But that's only the beginning of it, I'm also suffering spasms where my muscles tighten, these spasms are spreading, affecting more and more of my muscles and eventually they will start affecting my organs. (If they haven't already, I had an ECG and blood tests last week.) Oh, and I can't walk. I have a spastic gait which causes me to lose balance and the pain and effort of being on my feet is often too much for me.
People say that I am so strong, that I cope with it so well, that I am an inspiration, that I have such a positive outlook.
Little do they know.
My health is the least of my worries.
My family is so difficult to live with.
No1 son is autistic and doesn't do much for himself. He still depends on me for so much. He's not difficult often but when he gets moody he is. The main problem is how I worry about him, I worry about his health, I worry about his mental state, I worry that he's not living the life of a normal 29 yr old.
Eldest Daughter has had issues since she was 12 yrs old. She has the diagnosis, three of them to be precise, but she doesn't get any help. She works really hard and it feels like she has a relatively normal existence, but I know she's suffering. I don't want to go into too much detail but I do want to mention food. She has an eating disorder, not a regular one you can put a name to, but she has a really bad relationship with food and has done for many years. Every meal I make her she will complain about, but she still eats some and that's my objective. I try to please her, but it doesn't matter what I cook she's never going to be happy with it. She complains so much that often I'm the only one who eats at the same time as her.
I've accepted this, it's not her fault. We've argued so much about it but nothing ever changes. So acceptance is the only option. I cook her food, she complains about it. It's not nice but it's the way it is. It's like having allergies. Now, if you were cooking for someone with allergies you'd make exceptions for them wouldn't you? The food I cook my daughter is not going to make her sick, but I make exceptions for her, she doesn't like food, it's not my fault and it's not worth getting upset or arguing about. I let her complain and get on with it.
Hubby, (yes, we got married last year) has anger issues. I really wish he would get some help. He complains that we are walking on eggshells around my eldest daughter, but if you looked in from the outside you would see that we are all walking on eggshells around him. I have to try really hard not to banter with him because everything I say is taken as a genuine criticism. I remember when we used to laugh together. He has a lot to cope with and he lost his Dad which is difficult, but I wish he would just get some help rather than take it out on us.
On to the younger three. Lucy is also autistic and has frequent meltdowns, usually in rebellion against her Dad, she says such awful things to him. When he was happy they used to be so close, she was a Daddy's girl. Not any more though. I have to do everything for her. She also has fecal incontinence and we have to do dis-impaction quite regularly. It's like having a kid with constant diarrhoea, and I have to help her clean herself up and I'm left with tons of washing which has to be hand washed before being put in the washing machine. Oh, I could really do without this part of my life.
Leila is a typical girl, but she's also a 10 yr old teenager. She's so stroppy and ultra sensitive, you have to be careful what you say to her. At least she's normal, I think she's the one who's going to be a regular awkward teenager.
Joseph, I believe, has ADD. He cannot sit still for one second and he 'stims' all the time. He can sit and play minecraft for hours, but he doesn't sit still. I've had him assessed by the nurse and he doesn't show any other signs of autism. They didn't think he had any problems apart from emotional ones. Yes, he does get picked on by the family and left out a lot by the girls. I am constantly reassuring him that he is worthy. I am the one that looks out for him. The situation reminds me so much of my Mum and my younger brother. I find myself even saying the same phrases as her. This worries me as Mum was the only one who ever looked out for my brother and when she died he had no-one so he killed himself.
So, now you can see why I'm so brave and strong about my illness, I don't have time to think about it, my family take it all.
I do honestly believe that my family will kill me one day.
Tuesday, 5 September 2017
Wednesday, 5 February 2014
Mind Reading Bus Journeys
I've had two surreal experiences while travelling by bus this week.
The first was on Monday when I was on the bus with my eldest. Now, he talks a lot, and doesn't listen much. We went to Liverpool on the train once and he talked the whole way there about the history of China! But on Monday he was talking about Japan, he talked a little about he history and the geography, and my mind started to wander while I thought about the volcanos and suddenly he joined in as if reading my thoughts, and said yes we are lucky we don't have volcanos here. Ok, maybe not so strange as my thoughts were related to the topic he was rambling on about, but it was just the way he appeared to answer my thoughts, I am sure I didn't think them aloud!
The second one was today while on the bus with Lucy. It was getting dark and we'd been talking about lights and what the colours of the lights we could see reminded us of. In Lucy's case it was mostly fruit? Then we fell silent. I started thinking about church for some reason. I have been feeling a bit lost lately as we haven't found a new church to attend since moving house, and I don't think I will feel as comfortable anywhere as I did in our old church. Then suddenly Lucy said, "mummy, I miss going to church, I really liked Sunday School" !!!
I think I might stop going on the bus for a while as my thoughts appear to open for anyone to see!
The first was on Monday when I was on the bus with my eldest. Now, he talks a lot, and doesn't listen much. We went to Liverpool on the train once and he talked the whole way there about the history of China! But on Monday he was talking about Japan, he talked a little about he history and the geography, and my mind started to wander while I thought about the volcanos and suddenly he joined in as if reading my thoughts, and said yes we are lucky we don't have volcanos here. Ok, maybe not so strange as my thoughts were related to the topic he was rambling on about, but it was just the way he appeared to answer my thoughts, I am sure I didn't think them aloud!
The second one was today while on the bus with Lucy. It was getting dark and we'd been talking about lights and what the colours of the lights we could see reminded us of. In Lucy's case it was mostly fruit? Then we fell silent. I started thinking about church for some reason. I have been feeling a bit lost lately as we haven't found a new church to attend since moving house, and I don't think I will feel as comfortable anywhere as I did in our old church. Then suddenly Lucy said, "mummy, I miss going to church, I really liked Sunday School" !!!
I think I might stop going on the bus for a while as my thoughts appear to open for anyone to see!
Friday, 17 January 2014
Parenting Skills, A Ranty Post!
Forgive me, I've not posted since last year but I'm starting the new year with a rant.
The other day I was walking behind a couple with a toddler in tow. He climbed up on a little wall, two bricks high, (actually it's the one Joe climbs on everytime we pass) and on jumping down he twisted his foot and started to howl. His mum said 'serves you right' His dad said 'shut up right now, or I'll give you something to cry about' The poor lad quietened down to a whimper.
My blood was boiling. The little lad couldn't have been more than three years old, doing what a typical child of his age would do. It wasn't his fault he got hurt, it was an accident. He had every right to cry, he was hurting. I told myself it was none of my business and bit my tongue. I wish I hadn't.
Then today I'm walking behind a mum with her three kids. The mum had really black hair, obviously dyed, you could see copper highlights. The son had brown hair. The smallest girl had a mane of glorious copper hair, it really was amazing. The older girl, who looked about eight, had bleached blonde hair with copper roots. WHAT!! Why bleach your child's hair at such a young age? I know ginger headed kids get teased at school but wouldn't it be better to let them deal with it rather than bleach their hair. I know I'm not the only person who likes ginger hair, one of my best friends at school had ginger hair. There is nothing wrong with it, I don't know why some people hate it so much. Especially to the extend of dying a young girl's hair just because she's ginger.
Now, I know I'm not a perfect mum, I've messed up loads over the years. but I wouldn't be angry at my child when they are hurt, even if it was their own fault. I wouldn't bleach my child's hair at such a young age. That's like telling them they are not beautiful just as they are, if they think their own mum doesn't like the way they look how will they ever cope with what anyone else thinks of them?
The other day I was walking behind a couple with a toddler in tow. He climbed up on a little wall, two bricks high, (actually it's the one Joe climbs on everytime we pass) and on jumping down he twisted his foot and started to howl. His mum said 'serves you right' His dad said 'shut up right now, or I'll give you something to cry about' The poor lad quietened down to a whimper.
My blood was boiling. The little lad couldn't have been more than three years old, doing what a typical child of his age would do. It wasn't his fault he got hurt, it was an accident. He had every right to cry, he was hurting. I told myself it was none of my business and bit my tongue. I wish I hadn't.
Then today I'm walking behind a mum with her three kids. The mum had really black hair, obviously dyed, you could see copper highlights. The son had brown hair. The smallest girl had a mane of glorious copper hair, it really was amazing. The older girl, who looked about eight, had bleached blonde hair with copper roots. WHAT!! Why bleach your child's hair at such a young age? I know ginger headed kids get teased at school but wouldn't it be better to let them deal with it rather than bleach their hair. I know I'm not the only person who likes ginger hair, one of my best friends at school had ginger hair. There is nothing wrong with it, I don't know why some people hate it so much. Especially to the extend of dying a young girl's hair just because she's ginger.
Now, I know I'm not a perfect mum, I've messed up loads over the years. but I wouldn't be angry at my child when they are hurt, even if it was their own fault. I wouldn't bleach my child's hair at such a young age. That's like telling them they are not beautiful just as they are, if they think their own mum doesn't like the way they look how will they ever cope with what anyone else thinks of them?
Saturday, 21 December 2013
A Bit Of A Catch Up!
It's been a while, but I have been busy!
First up, big news is Lucy. We took her for another CT scan and on the basis of her results her physiotherapy was stopped and we were told to leave her collar on all the time. This could only mean that she was getting worse. We didn't get seen by the consultant though and were left in the dark as to what was going on. So I called PALS and told them my concerns. They finally pushed the consultant into finding a space in his busy day to see us. But first we had to take Lucy for yet another CT scan. After this one she was called in immediately and the consultant said it was time to get her sorted and booked her into the theatre for a manipulation.
We were told that there would be a possibility of her being fitted with a halo brace. This consists of a plastic vest with a sheepskin lining which is bolted on to her body and a carbon ring around her head which is attached by screws into her skull. The ring, or halo is attached to the vest by metal poles. The whole contraption is a form of moveable traction. It keeps the neck perfectly straight at all times.
We were told that the halo was a possibility, that is all.
She came back from theatre wearing a halo.
She was in hospital for a week and was quite poorly at first. I think the anaesthetic made her so sick and sleepy. After a couple of days though she was much brighter and even got out of bed. By the third day she was walking around and going to the toilet. She was amazing really.
Since being home she has coped really well, it took some getting used to at first, and some sleepless nights, but things are relatively normal now.
In other news, we are all settled in the new house now. It's really beginning to feel like home. It was hard getting used to all the space, and I have to admit, it's taken me some time to get used to all the cleaning, but getting used to it all is what I am doing.
Cassie has a job! It's only an apprenticeship, but it's with the NHS so fingers crossed there may be a future in it. She's certainly putting everything in to it. Much better than any job or work experience she has had before.
Graham brought a bike which is great because now he can pop to his mum's house at least a couple of times a week without spending any money on bus fare. Well, I guess it's an improvement on 5 times a day. I spoke another mum in the playground the other day, bearing in mind that I've only known her a couple of months, and she asked where Graham was and I said he'd gone to his mum's, straight away she replied, he goes there a lot doesn't he? Ah nothing changes!
Less than a week to Christmas and I'm really looking forward to it in our new home. I love the fact that we can put the Christmas tree up and not have to block any doors off, or limit our space. What I don't love is not having a fireplace or even a window sill in my living room. I have lots of decorations that used to adorn my fireplace and windowsill in my old house. It will be lovely having the room to eat our Christmas dinner around the dining room table, and the kids will be able to play with their toys without us tripping up over them. We are having a party the weekend after Christmas and I'm really looking forward to that. I just hope enough people turn up.
Of course, this time of year my thoughts turn to my mum and the events leading to her passing on Christmas day five years ago. I have planned to visit the cemetery on Christmas eve as usual and I will light a candle for her on Christmas day. I can hardly believe it's been five years!
Merry Christmas to all my readers xx
First up, big news is Lucy. We took her for another CT scan and on the basis of her results her physiotherapy was stopped and we were told to leave her collar on all the time. This could only mean that she was getting worse. We didn't get seen by the consultant though and were left in the dark as to what was going on. So I called PALS and told them my concerns. They finally pushed the consultant into finding a space in his busy day to see us. But first we had to take Lucy for yet another CT scan. After this one she was called in immediately and the consultant said it was time to get her sorted and booked her into the theatre for a manipulation.
We were told that there would be a possibility of her being fitted with a halo brace. This consists of a plastic vest with a sheepskin lining which is bolted on to her body and a carbon ring around her head which is attached by screws into her skull. The ring, or halo is attached to the vest by metal poles. The whole contraption is a form of moveable traction. It keeps the neck perfectly straight at all times.
We were told that the halo was a possibility, that is all.
She came back from theatre wearing a halo.
She was in hospital for a week and was quite poorly at first. I think the anaesthetic made her so sick and sleepy. After a couple of days though she was much brighter and even got out of bed. By the third day she was walking around and going to the toilet. She was amazing really.
Since being home she has coped really well, it took some getting used to at first, and some sleepless nights, but things are relatively normal now.
In other news, we are all settled in the new house now. It's really beginning to feel like home. It was hard getting used to all the space, and I have to admit, it's taken me some time to get used to all the cleaning, but getting used to it all is what I am doing.
Cassie has a job! It's only an apprenticeship, but it's with the NHS so fingers crossed there may be a future in it. She's certainly putting everything in to it. Much better than any job or work experience she has had before.
Graham brought a bike which is great because now he can pop to his mum's house at least a couple of times a week without spending any money on bus fare. Well, I guess it's an improvement on 5 times a day. I spoke another mum in the playground the other day, bearing in mind that I've only known her a couple of months, and she asked where Graham was and I said he'd gone to his mum's, straight away she replied, he goes there a lot doesn't he? Ah nothing changes!
Less than a week to Christmas and I'm really looking forward to it in our new home. I love the fact that we can put the Christmas tree up and not have to block any doors off, or limit our space. What I don't love is not having a fireplace or even a window sill in my living room. I have lots of decorations that used to adorn my fireplace and windowsill in my old house. It will be lovely having the room to eat our Christmas dinner around the dining room table, and the kids will be able to play with their toys without us tripping up over them. We are having a party the weekend after Christmas and I'm really looking forward to that. I just hope enough people turn up.
Of course, this time of year my thoughts turn to my mum and the events leading to her passing on Christmas day five years ago. I have planned to visit the cemetery on Christmas eve as usual and I will light a candle for her on Christmas day. I can hardly believe it's been five years!
Merry Christmas to all my readers xx
Wednesday, 6 November 2013
Well I did it, and I'm glad I did!
I've just been reading my last post and although moving house was a complete and utter nightmare I'm glad I did it now. I don't really want to go over it all again but let's just say that whatever could go wrong did go wrong. The actual move day was more of a nightmare than I could have ever imagined, in fact only now have I stopped having panic attacks in the middle of the night.
I don't miss my old house at all. The memories I made there will always be with me, and very occasionally I think I might miss it, but I'm so much happier here. I will admit it still has a feel of being on holiday and that we will be going home again soon. But I really don't want to go back.
My new home is so much bigger, and nicer. There is no damp or cracks or peeling wallpaper. The walls are flat and straight, the woodwork is perfect. We all have so much more room. The area is not too bad, all the houses are new and they are still building, so it's not like moving somewhere where everyone else has been friends for years.
I found a school for the kids. It's not brilliant and it is obvious that they are trying to build it back up from being really bad, but at least they are at the stage where they are saving it rather than just letting it go. I remember when Lucy started their old school it was in the same position, but it is looking pretty good now. Hopefully this new school with go the same way too. The kids are happy there anyway, and it's a very small school too, so not too harrowing for Lucy.
So here I am now, starting a new chapter in my life. Of course some things never change but I'm still living in hope.
I don't miss my old house at all. The memories I made there will always be with me, and very occasionally I think I might miss it, but I'm so much happier here. I will admit it still has a feel of being on holiday and that we will be going home again soon. But I really don't want to go back.
My new home is so much bigger, and nicer. There is no damp or cracks or peeling wallpaper. The walls are flat and straight, the woodwork is perfect. We all have so much more room. The area is not too bad, all the houses are new and they are still building, so it's not like moving somewhere where everyone else has been friends for years.
I found a school for the kids. It's not brilliant and it is obvious that they are trying to build it back up from being really bad, but at least they are at the stage where they are saving it rather than just letting it go. I remember when Lucy started their old school it was in the same position, but it is looking pretty good now. Hopefully this new school with go the same way too. The kids are happy there anyway, and it's a very small school too, so not too harrowing for Lucy.
So here I am now, starting a new chapter in my life. Of course some things never change but I'm still living in hope.
Friday, 13 September 2013
Stressed
This moving malarky is driving me nuts! No wonder it's one of the most stressful things you ever do, give me a divorce any day I can handle that!
I thought things were in place, I'd found a van to hire and Graham said he'd asked his uncle to drive it. Then he calls him and finds out he's lost his driving licence...on a bus! Apparently this happened a while ago, so Graham obviously hadn't asked him about driving our van, he'd just assumed he would. So now we need a van driver.
Also, when we first heard about the house we applied for a budgeting loan to help with the cost of moving. After a month we hadn't heard anything so I got on to G to phone them, it took four days of nagging (I couldn't call, it has to be in his name) then he called and found out they hadn't received the application. So we applied again and still we haven't heard and every day this week I've asked him to call and he still hasn't. So now we don't have any money to help us out. It's ok he said, I've asked my dad to lend us some and he said he'd bring it down tomorrow. Then his dad phoned and Gray asked about the money and they ended up arguing. Obviously the 'asked my Dad and it's all sorted' was all bull shit too.
I don't know if it's the stress, the thought of getting everything ready for the move, or finding a driver and money with only a few days to spare but tonight I feel as though I've had enough. I don't want to move anymore. I feel safe here. I know everyone here. I don't want to move to an area I don't know and live among strangers. I don't want to start all over again. I want to be safe and comfortable. Now I know exactly how Cassie feels because she doesn't want to move either. The people around here know Craige and are used to him, how will strangers react, what if he gets bullied or threatened? How will Lucy and Leila cope with new schools? Will I ever find them a school? Even Joseph is scaring me, he gets more like Lucy and Craige every day. We are safe here, we have friends people who know us, who are kind to us. I'm so scared. Who needs a big new house. I can stay here, I would stay here in just one room rather than face the unknown. Can I change my mind?
I thought things were in place, I'd found a van to hire and Graham said he'd asked his uncle to drive it. Then he calls him and finds out he's lost his driving licence...on a bus! Apparently this happened a while ago, so Graham obviously hadn't asked him about driving our van, he'd just assumed he would. So now we need a van driver.
Also, when we first heard about the house we applied for a budgeting loan to help with the cost of moving. After a month we hadn't heard anything so I got on to G to phone them, it took four days of nagging (I couldn't call, it has to be in his name) then he called and found out they hadn't received the application. So we applied again and still we haven't heard and every day this week I've asked him to call and he still hasn't. So now we don't have any money to help us out. It's ok he said, I've asked my dad to lend us some and he said he'd bring it down tomorrow. Then his dad phoned and Gray asked about the money and they ended up arguing. Obviously the 'asked my Dad and it's all sorted' was all bull shit too.
I don't know if it's the stress, the thought of getting everything ready for the move, or finding a driver and money with only a few days to spare but tonight I feel as though I've had enough. I don't want to move anymore. I feel safe here. I know everyone here. I don't want to move to an area I don't know and live among strangers. I don't want to start all over again. I want to be safe and comfortable. Now I know exactly how Cassie feels because she doesn't want to move either. The people around here know Craige and are used to him, how will strangers react, what if he gets bullied or threatened? How will Lucy and Leila cope with new schools? Will I ever find them a school? Even Joseph is scaring me, he gets more like Lucy and Craige every day. We are safe here, we have friends people who know us, who are kind to us. I'm so scared. Who needs a big new house. I can stay here, I would stay here in just one room rather than face the unknown. Can I change my mind?
Sunday, 8 September 2013
Well it's September Already!
We had our break in Blackpool. It would have been better had Lucy been better. We had to give the Pleasure Beach a miss which upset Gray. We also had a couple of meltdowns off Lucy due to her not feeling good and not coping well with the journey.
The journey home was a nightmare, we couldn't get seats together and I had a migraine. At least the kids were well behaved.
So Lucy is still in her collar and has shown no improvement at all. It's been five weeks now, still early days I suppose. We were given a different collar with the promise that it would correct the position of her neck. It doesn't, she just flops out of it and is in so much pain when she puts it on. We are still doing physio five times every day.
Yesterday I was cooking dinner and Gray had taken the kids to his mum's house, two doors away. I heard Lucy scream and start crying and I was out of the house and over the gardens (yes, I didn't realise I could jump those fences either!) and happy to find out that she'd just been smashed on the back of the head with a spoon by the little monster. I know, she was hurting and all I could think of was thank goodness nothing happened to her neck. Once I'd calmed her down Gray and his mum wandered out of her house wondering why I was in the garden. So that's how they look after my children when they go around there. They hadn't heard her screams, yet I had two doors away in my kitchen with the radio and the washing machine on. Lucy was ok, that's the main thing.
We've been to see our new house and it's lovely. Cassie is in a bit of a flap about moving, she's lived her all her life. I thought Craige would be too but he's taking it in his stride. In fact he's almost finished packing up his bedroom ready to go. We move in on 16th September!
The stress is getting to me already, but I really can't wait.
The journey home was a nightmare, we couldn't get seats together and I had a migraine. At least the kids were well behaved.
So Lucy is still in her collar and has shown no improvement at all. It's been five weeks now, still early days I suppose. We were given a different collar with the promise that it would correct the position of her neck. It doesn't, she just flops out of it and is in so much pain when she puts it on. We are still doing physio five times every day.
Yesterday I was cooking dinner and Gray had taken the kids to his mum's house, two doors away. I heard Lucy scream and start crying and I was out of the house and over the gardens (yes, I didn't realise I could jump those fences either!) and happy to find out that she'd just been smashed on the back of the head with a spoon by the little monster. I know, she was hurting and all I could think of was thank goodness nothing happened to her neck. Once I'd calmed her down Gray and his mum wandered out of her house wondering why I was in the garden. So that's how they look after my children when they go around there. They hadn't heard her screams, yet I had two doors away in my kitchen with the radio and the washing machine on. Lucy was ok, that's the main thing.
We've been to see our new house and it's lovely. Cassie is in a bit of a flap about moving, she's lived her all her life. I thought Craige would be too but he's taking it in his stride. In fact he's almost finished packing up his bedroom ready to go. We move in on 16th September!
The stress is getting to me already, but I really can't wait.
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