Parva Domvs Magna Qvies

This is a very bad picture taken in the kitchen. Appalling clarity. This is a part of a dresser in the kitchen which in all honesty I just place things on I like. You can see the drips on the wall and everything. As ever other people put things on it also and I have a running battle with spouse not to stick letters on it. I have blotted out the detail in letter, no one really needs to know my NHS Hospital Number anyway, many letters of late seem to be for hospital appointments. I don't mind the picture saying To Grandad from my step grandson (I only say step grandson here as otherwise it looks as though my nineteen year old daughter has a six year old son which is not the case) My grandson is in fact that but from my stepson from husband's first marriage.  I may take a photo of the top half of dresser to show other bizarre objects I like.


The clay plaque to the right says we think - Parva Domvs Magna Qvies - A rough translation I believe is Small House Much Peace.

The birds by the way were my grandmother's and she brought them back from Australia. NO one is allowed to touch them apart from me.

The cats on the lower shelf are a weird conglomeration of 'cat' presents over the years from the children.  In all honesty this is probably one of the tidiest bits of my house.

On cats, we are waiting for our new kitten.  I am like a child, stupidly excited.  Only a few weeks to go now.  No doubt I will not be so excited when it craps where it shouldn't.  But I will enjoy the kitten antics.

On the pain front - its crap frankly.  I know I included a link recently to pain management in which it was suggested that one takes pain relief before its intolerable.  This is all very well for me but unless I want to be a zombie I have to wait until night time to up the anti.  Having had an attack of post herpetic neuralgia on top of EDS of late I have not been the best company.  Lack of sleep at night means I am randomly falling asleep in the day.  A pattern I do not recommend.

In the US they refer to the pain from PHN as the suicide pain.  Its a pain I cannot even describe adequately.  Because its stuck in my trimengal nerve it affects my left eye and this is not a pretty sight.  Its too painful to shut hence the lack of sleep at night and makes my eye droop even more than normal.  Shingles/PHN makes one very very grumpy and unfortunately for me it seems sunshine triggers an attack.  I fear this summer being so short I will have to wear a large hat, leaving me with the feeling in all honesty that I look a little like a mushroom.  Very short and large hat is not a sexy look.  Oh I forgot to mention the dragging foot thing, the windmill arms which I have developed in an attempt not to fall over constantly and the sideways lack of balance from very unstable knees, ankles and hips.  No empathy necessary by the way, its just the facts of my life.

 I am not part of the EDS community that wears braces/orthtics well I am afraid, not having had much success with them at all.  They rip my skin and render the muscles even weaker.  I do have a variety of wrists supports, thumb, hand supports though which fill a drawer with which I experiement daily.  A hard one I am supposed to wear at night which goes all the way up my arm and should I dare move in my sleep I reckon would knock the OH out in one feel swoop.  I am not sure though it would go down well in court or look good in the local rag to read -

   Bendy woman with a rare connective tissue disorder inadvertently murdered husband by knocking him unconscious with a support intended to keep her hand/wrist/arm in the normal position whilst sleeping.

I keep thinking of late that I am very very floppy.  I saw a picture of myself which I will not be publishing here! where I realised that I just thought I was looking relaxed it seems on looking closer I actually look like a rag doll.  I was sitting in a large armchair and the dog was smiling nicely for the camera.  Does anyone remember those Slinky's that could just flop down the stairs in one long chain of floppiness.  Like one of those.  I suppose that's why when I stand up and forget to concentrate on it I just fall over.

One day perhaps I will write of my past.  Before I became a wife and mother.  No doubt some of you would be shocked some not!  I can't make up my mind on that one to share or not.  In some ways I guess it may be cathartic.  Some of it are mis-matched memories of a time maybe best forgotten.   Some people say regret nothing.  Some of my life choices all those years ago were wrong.  I hurt my parents and I affected my health.

One thing I have tried to instill in my children is to respect themselves.  My son is nearly 18 now and I have been kind to him this weekend.  He managed to go to work on Sunday - despite the fact that he had been up all night at a party.  He remembered to take his meds - he was sick and I was nice. I could be the type of over bearing mother who says it is forbidden for him to drink bearing in mind he has epilepsy and his meds don't really go with that.  He has to learn to make life choices I am not his keeper.The neurologist was really measured about this and said basically it would probably be better if he didn't but in moderation would probably be OK.   He got home from work and went to bed, I woke him to take his meds at midnight and he has been in and out of bed all day.  Most teenagers just have hangovers and that's it - he has to learn how to drink in moderation, remember to take his epilepsy medication and understand that it is always OK to come home - no matter what.

I remember well my mother yelling at me 'you are pregnant aren't you go on admit it'  In actual fact I absolutely wasn't but I was completely off my face.  But that is a story for another day.

Suffice to say with my teenagers, we only yell about the inconsequentials, the important stuff like drugs, alcohol etc. we discuss.  It seems only a short time ago that I was reading them bedtime stories now we don't have bedtimes, but I do think that having appropriate bedtimes as children has helped them to turn into pretty damn nice nearly adults.  I am a great believer in sleep and fruit and vegetables.  I look back and know we made mistakes aplenty but I don't regret having a messy house and spending time talking, laughing and making collages from leaves and twigs, pasta pictures......   Whilst other mums climbed the social ladder and cleaned and cleaned.

Some of those social climbers have produced offspring who as peers to my teenagers do take drugs, don't get the respect oneself thing at all.  Mine are not perfect no one is but I don't regret the messy house, one bit.  Because of the EDS I may not have been able to do as much with them as I would have liked but the time invested by way of substitute was not wasted time.  Sometimes when they were  we young we could be found mid afternoon in the bath - bubbles, toys and laughter.  Those baths in the middle of the day may have been founded out of my pain but it was fun.

One has epilepsy, one has EDS, I can't change that but there is more to life.  I won't pretend that life in our small house is always peaceful, we have big personalities us lot good job too I think because to cope in this day and age I think it helps.  I remember cherishing reading bedtime stories because its not long before one finds oneself giving them half an hour to read Narnia etc. before lights out.  Oh one of the things neither of them has forgiven us for is not allowing televisions in bedrooms because obviously absolutely EVERY other kid had one.  I am of the personal opinion that televisions in bedrooms of children are a cop out on the parenting front and responsible for much that is wrong in society today.  But I am middle aged and boring afterall of a different generation!  Actually boy son didn't read books he listened to story tapes because of dyslexia. 

So that's my post for today - opinionated as ever. 

If you are in pain, care about someone in pain, I just want to say I have lit candles, the aroma of  which fill the room as I type.  The candles are for you.  I hope they help.