Category Archives: family

Spiralling …..

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round and round it goes, where it stops nobody knows

This is how life feels right now , its just a continuous series of events that Happen to me and spiral out of control .leaving me feeling overwhelmed, lost and a little blue .

I have no clue if / when Ollie will get a school place, if he will cope with a school place, or if I even want him to have a school place
I have no idea if J will ever get the support I’ve fought for for 9 years , for both of them the future is an unknown.
My health is just a big pile of pants .
I struggle to afford to feed these gannets children of mine who wont stop growing and also don’t stop eating .
I cant remember the last time I went out without one or more offspring in tow.
Im starting to feel like I’m just mum like that’s all there is to me .

I know I need help to get the right support for the boys, but the help I’ve got right now isn’t help atall , I struggle to reach out and find that help , I don’t even know how or where to reach out to .

I stood in town on friday night waiting to collect the girls after they had been on a church trip they were late so I stood on the high st for nearly 30 minutes watching people out for the evening, no kids, going out for a drink or food , chatting and laughing and I was jealous .

My children are the single most important thing in my life, I live and breathe for them, would give my life for them but sometimes, just sometimes I want to be just me before I don’t even know who me is anymore .

This week I had a couple of really lovely moments , where I genuinely felt happy and relaxed , my lunch date and long walk with Ollie,and a lovely dog walk in the evening with 12yo, and although they were both warm happy moments they made me sad to realise how little I feel I can be happy and free .

My anxiety just wont leave me alone .
We had mice (4) nine months ago which completely terrified me , there hasnt been a single one since , not a sign and we have a cat now, but still I’m afraid to go in the kitchen alone after dark or first thing in the morning , I actually have to get one of the kids out of bed to come with me its ridiculous .

I have endless meetings with the support workers who are supposedly helping me , I sit there bubbling over with frustration because there are things I want to say , issues I want to address i want to tell them to fuck off but I don’t know how because they don’t listen so still the meetings keep happening to me

Im 39 , alone with 7 kids , two “disabled” I have to make every decision myself ! Have full responsibility and you know what its fucking hard.

My kids are growing up fast , I want to enjoy them , enjoy life before im too old and crumbly but this never ending catalogue of events beyond my control keeps happening .

I need to push through these things that are getting in the way of life

if you cant get around it you need to go through it

But thats scary , I don’t know where or how to start .

On monday Im going to be brave and tell my support worker that i feel they should be finding support for my boys (a school place for Ollie) before pushing me ( a carer to both my boys) to job club and causing me more stress and pressure , but the very idea of speaking up makes me do a little sick in my mouth .

What do I do?
How do I get some control back?
how do I do brave when I don’t feel brave?
When is it my turn to be happy ?

Forty is coming at me ….fast

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I turn 40 this year , on christmas day infact so right away this a stumbling point, obviously I want christmas day to be all about me i want to share the day with my family …it is christmas after all . What will happen is i will run about like a headless chicken making christmas day go well and then just before bedtime I will get time for some cheese and a glass of cider , I’ve toyed with the idea of an early birthday but its hard to organise because nobody wanted to come, not even twitter folk * insert crying sound here* folk are too busy or too far , so at the very least I need to make my last few months of 39 count and I’d quite like my 40th year to be a bit special as they say forty is old life begins at 40 , I missed out on fun when I was young because by 16 I worked full time by 18 I was working, married and heavily pregnant , not that I have any regrets , I love this slightly dysfunctional lovely brood I’ve raised but I want to have some fun, do something different, make 40 my year.
The problem is I have no idea what this fun I speak of is ,
~ fun ….but not outrageous….or expensive…or brave , I wont be bungee jumping or canoeing I’m not that stupid brave .~ a challenge? But I wont be climbing ben nevis , ~learn something ? But what

So whats left , for my sounding lamer by the minute life begins at forty list, anything ?
Please please hit me with ideas . My birthday is for life not just for christmas

I dont do blood …..

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I dont do blood ,i really dont .
I cant even cope with blood tests which i have so many of .
I sliced my thumb today while chopping peppers I cried I
panicked because of the blood , the kids tell me its no more than a paper cut but in my head I’m bleeding out and I’m convinced i was moments away from slicing my thumb off , no sympathy as they think I’m overreacting , ok usually i am , but not this time .
The whole blood phobia is actually a big problem for me as when my children are hurt i run from them screaming calling my eldest (dan) who is fazed by nothing and my first aider daughter leanne ,
Let me give an example or two son was run over aged 11, he ran home from the scene and collapsed by our door , i phoned my sister ( on my street ) and waited upstairs to paramedics had had a look ,I did go in the ambulance though .
When other son,Ben was almost one I was hoovering with the hose whilst he stuck his hand in the beater bar , of course he didn’t scream till I stopped the hoover ,I pulled his hand out , saw the whole skin had come off of the middle of the back of his hand ,I saw his bones , ran to neighbours screaming !
Ollie sliced his foot on broken china , pouring with blood , I Picked up ollie and ran to neighbours house ,passed out on her floor ( me not ollie)
Its not just blood , its broken bones , when Emma broke her foot at playcentre i couldn’t bring myself to look , and Ben ,still accident prone , broke an ankle skateboarding , when that cast came off he immediately broke the other ankle cycling , that cast came of and ….guess what ….he broke his other ankle at football training, each time I couldn’t look at the broken limbs . Calling either my sister or a neighbour , my now 16 yo had a fit of some kind in her brothers room , a couple of years ago cutting her head open in the process of falling off the chair , my neighbours came and sat with her till the ambulance came ,while I hyperventilated in my room

How the heck do I get over this absolute panic and fear over a bit of blood or broken bones ,the kids are used to it ,they know i will be there as soon as the bloods bandaged or the break is out of my sight , but I feel stupid because a mothers instinct is to run to her hurt child ,mine is to run away , one day something could happen where they actually need me to step up and be brave ,I’m not sure i can . I want to be there and soothe them and comfort them but how can I?

Look whos back , back in town , well…back on the blog

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I havent been blogging because ….reasons….meh!
But ive missed it ,blogging is my voice, my own little place that I’m the boss of ,so I’m back and itching to get blogging.
I have lots of blog posts i want to get out this week ….
I want to dust off ” my positive week ” because I had great feedback from that !
I want to persevere with my ” show us your blog linky” seriously how hard is it to get a linky on its way to being a success ?
Ive got some great interviews for my ” behind the blog” series ,and as well as word of the week and my sunday photo , id like to find another linky that I fit into .I also need to get blogging about my pyjama walk for autism , because how hard is it to get sponsors ? Who knew ?
I have also been meaning to review fruit broo tea ( because I love it)
So lots to be cracking on with , i hope you will enjoy my blog this week and if you know of any linkys i might fit in to please let me know xx i also desperately need to catch up on and comment on all the lovely blogs i read 😃

As always thank you for reading xxx

Pyjama walk for autism

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Hello fellow bloggers and tweeters, as you may know its autism awareness month , you may also know that I have two boys both with autism along with other co morbid conditions .
My friend Sue also has two boys with autism , last easter we did our first sponsored walk , in pyjamas , for the national autistic society ,raising almost £300 in total , this year we are doing it again on august 17th 5 miles in our pyjamas , i cant walk any further because as ive blogged previously I’m very poorly !
This is where I’m going to ask for your help, we’ve all seen what bloggers can do for charity please help us to beat our £300 that we raised last year !
You can help us by sharing this post , tweeting links to this post and our virgin money giving link , blogging about the walk , anything that may help
You can also help in a fun way by sparing a morning to walk with us , in your pyjamas , you don’t need to come to london , you can walk where you live , blog , tweet about it , instagram it ! I would add you to our money giving page of course , if you have a child in a buggy you could just walk a mile ( or two) in your pjs or if you have kids you could do whatever distance they can handle , it would be awesome if anyone would join in , it would mean a lot to myself and Sue , and we raise even more than £300 this time .

Our virgin money giving link is here http://uk.virginmoneygiving.com/team/TeamPyjama

Please help us do something wonderful for autism by raising money for the national autistic society , if you cant do the walk ( please do the walk) then please support team pyjama and the pyjama walk for autism on social media
#teampyjama
#pyjamawalkforautism

I know times are hard and we are all a little charitied out right now but this is for such a great cause , please help if you can

Thankyou for reading , G x

The one where i ‘don’t know what I’m doing ‘

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“we need to pop to B and Q on sunday , just in and out to pick up a roll of wallpaper”
I thought I approached the matter well, I was very clear about what we would be doing and B and Q is just a little bus ride away so wouldn’t take long and Ollie probably wouldn’t mind ,I thought wrong ,of course !

His first argument was weak “er mum you know I don’t like going shopping ”
I countered this well ” Its not really shopping its just popping in to buy something Ive already chosen ”

He was just warming up “mum,is it a great big place , where there are lots of people and its full of all different stuff right up to the ceiling ? And do we need to go on a bus with people to get there ?”
“Well , yes it is ” I told him
“So you are going to make me go somewhere that is all the things I hate ?”
“Well , the thing is that when you have autism sometimes you have to do things you hate and find hard ,so its good to practice a bit to get used the feelings and try to cope with them”

By now he was firing on all cylinders ” the only reason I need to get used to busy shops is if you are planning to make me go and live in debenhams ”

Debenhams ? He’s never even been in debenhams !

“Look ” I said I’m just doing my best to help you get used to things ”
He huffed , puffed and then replied ” sometimes when a person has autism , the person with autisms mother doesn’t know what she’s doing ”

I *might* have muttered something about someone being a smart arse .

I think i will just pop to B and Q on my own .

My positive week 😊 : day 1

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I’ve blogged before about how I’m usually quite a negative person , I’m making an effort to be happier and more positive , looking for the good rather than focussing on the bad … This week I’m going to blog every night about 3 positive things from that day.
Because sometimes you don’t realise how many positives there are until you actually sit down and think about it.
I’ve decided on 3 things because I don’t want to set myself up with something Unachievable but I’m pretty sure even I will be able to find 3 things.
By the end of this week I should have a whole list of good things to read back over.
My positive things for today are

•I have felt well today , after a very poorly day yesterday today was a great day health wise .😃

•the kids have made a big effort to be tidier today and the 14 year old has helped me with all of the cleaning and tidying . We even cleaned the bathroom and the guinea pigs cage together. 😄

•Ollie loves the stir fry I make. He asked me to make it for dinner today and he ate it all , so he had a lovely load of veg. 😃 I love how he loves vegetables.

There are even a few more positive things … Ollie went to bed really nicely tonight without any fuss …. As it’s Sunday Hawaii five 0 was on TV , it’s my absolute favourite so I always enjoy watching it , I look forward to it all week……my blog had more views than ever today , with lots of posts from the archives being read too , I’m proud of my little blog. 😃

Not a bad start to my week of blogging about the positives !

Do you find it easier to focus on the negatives rather than the positives or are you more a glass half full kind of person ?

Thank you for reading xx

Sick and tired

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I hate moaning about my health. I have IBS and psoriatic arthritis , I’m not going to die from either of them but at the moment my health is frankly s**t and I feel like a good moan about it may be just what I need.
It’s around 3 years now since I first became really poorly , pain , swelling , stiffness , sickness , diarrhoea , tummy pain etc and it took a long time and a million blood tests to get properly diagnosed but once I was diagnosed I started taking medication (lots of it) and I started to have periods of time where I was ‘well’ and the pain was manageable . Since a bit before Christmas though I’ve been constantly poorly.
The arthritis and IBS have been very bad , the pain stiffness and swelling had been constant and although most of it had been in my feet and legs until now my hands are becoming increasingly bad , and I’ve had far more bad IBS days than good ones. Along with this I’ve been getting migraines , which make me vomit. (a few times a week) and extreme tiredness. The medication I take for the psoriatic arthritis also makes me vomit so as you can see it’s a a bit of a disaster. It’s been so stressful and so painful that I’m also battling depression and anxiety too. After one of my many blood tests I was also diagnosed with microcytosis . I’m an absolute picture of health aren’t I.
I tried going gluten free as I noticed I was eating a lot of pasta and bread type foods but it hasn’t made much difference. I’m sick and tired of being sick and tired.
Last week I went to my gp and she ordered blood tests for me to get to the bottom of what’s going on. She wants to look at everything so the blood test was for a blood count , rheumatoid factor , vitamin D , b12 , a bone profile , inflammation markers ,blood sugar , cholesterol and liver function.
I will get the results on Tuesday and I’m hoping that they will just result in my medication being adjusted , I’d be happy to try something other than methotrexate (I’d even have steroid injections , despite my needle phobia because I’ve had one a couple of times before and it helped) but I’m also worried , very very worried that the blood tests are going to end up showing that there is even more wrong with me. I don’t think I will be able to relax at all until Tuesday. The IBS and arthritis are more than enough to be getting on with and I take more than enough different kinds of medication without adding to the list.
I just can’t get it out of my head that I might have been so poorly because there is something more sinister going on.
Roll on tuesday.

I’ll do it my way !!

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As you will know if you’ve read my blog before I have two boys with autism. One is 9 (Ollie) and one is 18. Both have other conditions along with autism.
Until two years ago I didnt really know much about autism. My teenager was only diagnosed last summer after 8 years of me fighting for diagnosis and never really knowing what he had , Ollie was also diagnosed last summer.
Even now with two children diagnosed with autism I’m not an expert on it. I know my boys , I try my best to understand my boys but autism is a continuos learning curve. I would never presume that I know all about another person with autism because as they say if you’ve met one person with autism , you’ve met one person with autism
One thing I get very tired and frustrated by is people who just don’t understand at all giving me advice or their opinions on something they just don’t know .
As an example of this , Ollie doesn’t like going out. He finds it all very difficult. People , noise , the unexpected , it’s all just very difficult for him. I took him out of school in November and in the first few weeks he didn’t really go out atall. Since then I’ve built it up to a trip in to town once a week , where we have lunch in McDonald’s and usually go into one shop. This involves a couple of bus rides. And a visit to my mums at the weekend. Another couple of bus rides.
Ollie needs a couple of days notice if he has to go out and he’s very stressed before we do. He becomes anxious , agitated , his tics increase , it’s very important that there are no surprises and we only go to the places he’s been told about.
It means I can’t just take Ollie out if I need to run some errands. I can’t just pop to the shop with him or go window shopping.
There are some that believe I should be pushing Ollie more , making him go out , even that I’m allowing Ollie to control when I shop. Some people don’t understand that if we are in town I won’t make him go into a shop that he wasn’t told about. Whereas I feel very strongly about only doing things I’ve told him about. I get criticised if I don’t take him out every day.
Well , first and foremost , Ollie needs to know without any doubt that he can trust me. That he is safe with me. And that I understand the things that are difficult for him. He knows that I expect him to try going out and he knows I’m trying to increase it but I’m not going to rush him. Going out to busy places is very stressful for him. I don’t want to put him through stress. Why should I ? And as far as controlling when I go shopping , yes he makes it difficult , but I have 5 teenagers , if I need to go out I will do so when one of them can look after Ollie. I manage just fine.
Obviously I want Ollie to learn ways of coping with going out but pushing him into situations isn’t the way to do that.
With the nice weather coming we will start doing smaller more manageable trips to the park across the road or taking the scooter out for a ride. Ollie is happy not going out , why shouldn’t he be when it’s so difficult for him. He feels very safe at home.He lives with me and 6 siblings. People come to the house , he visits my mums house , he’s not living under a rock. He’s fine. He’s happy and we will take things at his own pace.
I could go on and on with examples , bedtime , mealtimes , meltdowns , I deal with these things in the way I feel works for my boys. And I’m sure that there are others who would deal with them differently. And that’s fine.
I always appreciate advice from people who have an understanding of autism , I even appreciate input from people who don’t know much about it, advice when constructive and from a well intentioned place is often a good thing. but what I don’t appreciate is criticism from people who really have no understanding.
I’ve never had much time for my boys psychiatrist , mostly because I generally find CAMHS useless. But after the meeting where he diagnosed my boys he told me that the most important thing to do for an autistic person is to allow them to be who they are. Don’t try to change them , just help them be the best THEY can be. and that will always stay with me.