6 replies to this topic

[pinkcloud]

Hi all - apologises its long...yet full description is called for with this delicate subject i feel...

The most hardest part of sci for me, is me children living with this.

The best incentive I got to admit, understand,accept sci. So me kids will be able to as well.

Me children was the only ones whom knew of and experienced me living with undiagnosed sci for two years. I couldnt hide the symptoms in home no matter how hard i tried, and they helped me get off chairs, beds, lifted kettles..everything the had not ought to have to do. Yet with no help we had no choice.

They lived with me like this, none of us knowing what was wrong. We coped - because I coped I could help them cope.

When I got admitted as an emergency..the surgeons told me I may die during the operation, if not loose all function at t7/8 and below...I was told this and I had to deal with it quick...then let me kids and family and loved friends know.

I explained it like this....our bodies are machines and sometmes they stop working, some bits can get mended..some cant. The doctors are going to remove me broken parts like we would have to remove a broken, unfixable tyre. Now unlike a bike where we can buy new tyres...doctors cant buy new spine body parts, so I will be having to run ths body without 2 wheels working, just one. Now, as you can imagne a bike with 1 wheel would be very wobbley and it may not be rideable again....or the bike could be rode about on one tyre, doing wheelies everywhere..of course sometimes the bike may fall over and may damage the paintwork or dent the frame...well mammy is like that bike...I gonna have to learn to move it again - ok it will look funny, be hard yet...like wheelies are fun..so will mammy be fun - just like before yet n a different way
.
Now me children have not been bought up to be religious in any way, its something we kind of just found, as a personal thing and it helped us be comforted, find a explanation of why sad things happen. Me other son is the opposite and thats ok, he copes with the same ideas, just that no faith is involved. The mixture of science and faith i use, helps both understand equally in both or one of the ways.


Theres a small chance this means i wouldnt even be able to smoke a fag or drink a cup of tea by meself and the only time thing in life I would see will be be the ceiling or the sky as I would have to lay on me back 24/7 - now this means I would be more like a carrott than a human being, yet carrotts help people see in the dark after all, so I would still be able to help you see the nice light of the world.And i'd still hve a lovely life, I would still be able to chat to everyone, listen to the radio, talking books, the tele and most importantly be here for you two.


Now there is a little chance that the body just may not be able to cope with working without all its body parts, if this is ever the case, it means God will want me to go up to heaven to be your mammy in a different way, as a guardian angel. Because if me body can not work properly,and needs machines to keep the heart pumping, lungs breathing, food and drink thorough tubes, I would be asleep all the time too - and some people call this being a vegetble, now if God had wanted me to be a vegetable he would have made me grow in the mud and be called a turnip. And He wouldnt want that.

If this happened, you always remember, me life has been wonderful and happy, becaus you boys are in me life - you dont have to do anything more than be you - thats all you have to do to make me the happiest mammy in the universe. And if I was to go to heaven, well I would like you to try ya bestest to be as happy as can be, I will be never think you dont miss me if you are happy in life, you deserve to be happy. Being sad wont bring me back to life, happy memories will and no one can take these away from you.

Me son told me he used to talk to me by Gods telephone when I was in hospital, he would talk to God and get him to pass messages onto me that way.


Both however, use the positive out of the situation, they are like me honest with their feelings, never not telling others how special people are to them, they live life each day to the fullest, they understand the reality that bodies are bodies, not invinsible machines. They also think of me like a stunt rider - like them on tele who do stunts and get hurt. They are aware of worldly dangers yet not intimidated by them.

I did the best job I did, they got lots of support and most importantly they were able to go back to being 'just kids' again - to see i get help from the doctors when i need it. Friends too.

I found that not knowing the truth makes things worse, the imagination can be much worse than the reality.I explain stuff in a safe way they can understand - both by me natural instincts and help I asked for from professionals.

They understand that other kids get a more rougher deal in life as they are born to parents who dont care. They would rather have me than suffer that. They know if the worst came to the worst they will be looked after by family and friends - me chosen family.

They are both glad this has happened in a way, as before I worked a lot, now they get there mammy at home and available all the time for them. They like whom we have met by having me injury, they like how others ask me all the time how to cope. They like how they dont have to worry about unmportant things in life...that make other so unnecessarily unhappy.

They also understand how unkind others can be - some kids turned to them and said 'ya mam broke her legs when she was in bed with me because i'm so great;and i left her the money under her pillow'

- yes i know - sick or what? I helped them get thorough this by saying -

'me mam will get some money off you for real, when she takes you to court either for you accusing her of being a prostitute paedophile - or...you causing her grevious bodily harm if this was true- i'll just go and tell the teacher though, to pre-warn yor parents they may be homeless by court compensation for raising such a liar who says such horrid things to grieving children about their mam'. This shuts them sick kids up..and because the bullies realise me kids are not bothered by this - they leave them alone as the reaction and attention they crave is not met...and no, the teachers dont stop it happening. Sadly. I'm just glad me kids tell me what happens in life,so i am there to help them in life.No matter how sad it is to hear such children are bought up to think this treatment of others is right in life.

They also know they dont have to be perfect just because i have sci - its me job to get annoyed,part on a mams description. And sci may take me mobility away - it will not take my parenting skills away.And they know they would never be able to do any more for me than they do. And none of the injury is ever their fault. Its amazing how many people I have met over the years whom somehow they feel they could never ever do enough for their loved ones...in some way, it may have been their fault - which of course is never true.

And for them whom wish they would have been there in the last minutes of a loved ones life yet were not - yes you would have been - in their memories and heart. And pain - yes it gets real bad, but at a certain point we pass out.Like we have a 'flip off switch' that kicks in as an emergency - I know I experienced this. and the memory of pure trauma? well...we forget it once it reaches past a certain point too. Im me experience - and a few hundred who have told me too - i hope this brings some comfort to others.

Best wishes, Miss cloud

Edited by pinkcloud, 06 July 2011 - 07:35 AM.

[Mrs Wisteria]

Hey Miss Cloud - nobody is ever going to take away from you the love and respect and pride your boys have for you. They have a great teacher and she may be a bit gobby now and again, but her heart is full of goodness and light.

You want what every parent wnats for their kids - mine are all married with lives of their own, but I still found it tough to say the words that you think you are struggling with. Your boys are not daft - they know what is waht - they live with your problems day in and day out - all you can do is carry on respecting their different ways of coping. Being honest and true - bat with a straight bat has always been my maxim, even if its bad news...

I sense you are feeling weighed down with it all - its been a long struggle to get answers and find out what your problems really are to be able to deal with them - real frustration and angst. Give them space to be young lads and just carry on being true.

As for the bullies and uninformed, well, your lads already know that they dont need to waste time on them. Sadly it will be there however hard you try - even when they are grown men there will still be some ill mannered people making snide remarks. Your job is to make sure your boys know not to react - or else react in a way that 'informs & educates' them about SCI and how difficult life is - as a sufferer, as a carer, as a family member, as a loved one, as a friend.

Right after all that, I think you need
v aka Mrs Wisteria (as in the plant, not the american housewives)- aka Lancashire Hotpot aka friend x
pm me again if oyu want - i will come back to you ...

[pinkcloud]

[quote name='Mrs Wisteria' timestamp='1309992859' post='239543']

oh mrs wisteria, you are indeed a top friend - and i still think of you as a right top totty wisteria lady, nothings gonna be changing this, ya got a pretty personality and its outstanding, much like the tree too actually

you hit the nail on the head, for me its all about me lads staying being young lads - and i do a grand job as i do have to remind um i am sci sometimes, as they forget which to me, is an achievement i deal with it as it is....natural part of life that gets in the way sometimes. Why i like it on here, i get to tlk about sci as it is, i dont with me friends as i like to pretend it aint there, not let it get in the way of me life.

thank you for ya help with all ya said, all 100 per cent true, gobby, yeap sure can be - mind u me voice is rather very young sounding and sweet sounding, so that takes the edge off it somewhat. or i would be the arnold swarziniger of gobbyness when i have to be, the lass may have left the rough council estate, the council estate dont leave the lass i do have the vocab of a fishwife at times too, helps being a single mam - me kids feel safe i can stand up for us 3 and dont be getting no bull-poop off others mainly though because i is friendly

the boys are very bullett proof when it comes to taking school life stuff, gentle yet strong minded.

The diagnosis thing...i dont think no-one can tell me nothing and even if they could, i know it dont help much by all what you lot tell me. i find you lot on here real helpful - you have been dealing with this for years, i just breaking out of the last stage and into the next stage which is:

no one knows, no ones going to know and if they do know, all i will do is understand better...only i can really look after me sci - no one else can.They can help me understand and this is better than gold fillings in me 2 gappy missing teeth mouth which i really want but can never afford (council estate roots,what i tell ya...thorough and thorough)

[Tatiana]

Hiya pinkcloud, thankyou for sharing this with us. I always learn something from your posts and your insight.

The uncertainty is def the worse thing with SCI...and our imagination,thats so right.

My consultant never muttered the words SCI or CES to me...my sister read on my notes at the end of my bed and told me.

So i had to learn from googling and my own experiences/body changes and you guys on here.

Arent kids cruel...they have no idea how hurtful they can be talking about you in that way to your boys...

Your a brave lady...and a fab mum...im sure your qualities as a person overides the physical anyday!!!

[Cal86]

Thanks for this. Recently injured and fighting with myself on how to explain it to my little boy. Cheers.

[lkb2399]

Talk to kids about it

[Miss Donna]

My son knew before I knew how bad it was, because I was in a MVA.. Thankfully his friends have been supportive and no one has said anything mean. 4 days after I got home after being in hosputals for 10 months, I was sent to the hispital with a UTI...firetruck and ambulance screaming into my small neighbrhood sirens blairing. My son said he had never felt so much love and caring. He is 16 and stayed home, neighboirs (some I don't really know) were checking on him and offering to bring him to the hospital. He is so fortunate that so many people care for him, but no one as much as me!!