Purr.....

Benji makes me smile.........

Making a difference....

I would like to say something individually to you all, who took the time to comment so thoughtfully and honestly on my last post. 

I have in draft the comments to each of you which I may publish eventually but for the present time its not here because I just read it and felt stupidly insecure about publishing such intimate thoughts & indeed facts about myself on the wibbly wobbly web. So I shall wait a while and look at it in the cold light of day.

In the meantime I thought I should post to say the 'bowel' episode has abated somewhat and my thoughts are becoming a little clearer.  An appointment is made with my GP.

As is normal with EDS when the body is or has been under additional stress I am having multiple dislocations and pain. Reminding me that looking for the good in small things helps with being able to look at life with continued optimism. 

Blogging friends support really does make a difference.  EDS when its like this is an isolating experience, the physical limitations means I am spending a great deal of time alone, friends care but most don't have the time to listen as you all do.  Thank you.

I have no doubt that the recent political situation will have impact on referrals etc. and I want to be sure with regard to all things bowel that I am going in the right direction having previously been underminded by some medical professionals. A common occurrence amongst those who have EDS is disbelief from Medical Professionals that the symptoms they describe are so painful and real.  Many have been accused of hysteria and worse.

I remember clearly following the birth of my daughter (prior to diagnosis with EDS) screaming at the midwife doing the episiotomy that she had to stop as the procedure was causing me such searing pain.  She laughed at me and with derision in her voice told me to stop being so pathetic.  I remember tears pouring down my face as she got another midwife to hold me down whilst she continued in her work. 

The following day she came and found me on the ward and in front of the other mothers gave me an old fashioned dressing down - I remained silent as words like, over reacting, hysterical, immature (getting the picture here) were thrown at me.  I remember saying to her when she had finished her tirade that local anaesthetics had never worked for me, that I didn't know why but when the day came and I found out why that I would remember her words.  She laughed in my face and said that in the history of her career not one of her patients had ever not responded to a local anaesthetic and that my pain was a figment of my imagination.

When I told this to Professor Grahame some  17 years or so ago - he put his hand on mine and said that if his dreams came true no one with EDS would ever have to go through this type of scenario. He said that it was his wish that the condition could be recognised by at least rheumatologists who would pass on their knowledge to inform GP's.  Appropriate management of the condition being available to each patient with the condition in their locality.  GP's receiving if his dream came true as part of their training an overview of appropriate management of an EDS patient.

I wonder how many patients can realistically say that this wish from all that time ago came true.  I wonder how many women have been on the receiving end of harsh words and misunderstanding that I received from that midwife all those years ago.  All I can say is with my second child it was on my birth plan that I should be allowed to tear naturally if necessary as I had ehlers danlos and local anaesthesia was a significant problem if an episiotomy is required.

No one knows why local anaesthesia doesn't work in some patients with Ehlers Danlos as far as I am aware.

This is just one example of why I think a diagnosis does make a difference.

By the way EDS isn't all bad - being able to scratch the itch anywhere on one's own back is really great.

ps - photo's of my gorgeous little kitten soon if he keeps still long enough.  When asleep he is so tiny the photo's just look like a blob of something furry.  His name is benji.  I must be getting dippy in my middle age as I honestly have never been so ridiculously protective of a new pet.  I just adore him.

The Truth...

 I have started this post with the following excerpt from the blog linked at the bottom of this post.

People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain.

The words jumped out of the page at me like a physical blow.

This description is the same for me.

I am telling the truth when I say I am hitting a brick wall with my experience of ehlers danlos right now.

In my title its says something about living well with a chronic condition.... the truth is I am not living well right now.



I feel as though I am sliding into an abyss of pain - 

Most of the time whilst I do chat about it on this blog I realise I never describe it.  Attending a pain management course many years ago - others seemed proficient at describing their pain.  Not me.  My pain is so much of me I suppose I don't seem to have adequate words.  I want to shout out loud  - can't you see it - why doesn't it show. This is my normality.  I am pain pain is me.

Do You See What I Feel?

 

 

Artist:  Dana Harrell-Sanders           

  

I was reading a thread in an on line community which was debating the difference between EDS and Hypermobility Syndrome.  It seemed as I skimmed the very long thread that there was much debate about EDS versus HMS. 

Do you know what I am sick of all of that crap.

 Flashing at me from the computer at my GP Practice it states - 'This patient has hypermobility syndrome' despite the fact that all those years ago I was actually diagnosed with EDS Type III now known as EDS hypermobility type.

It doesn't matter anyhow as gp's know the patient with whatever type they think you have, present with pain as a predominant feature in what probably is a heart sink patient.  If they bothered they would know that I have many overlap/mosaic features of EDS and if the terminology of all of that is wrong please forgive me.

I have thought on occassion that I should ask for a bioposy but where in actuality would that get me apart from the obvious implications on the longevity of my life.

It would be good if the money were invested to find the elusive gene related to hypermobility type (formerly k/a type III).   But the reality of the funding being available anywhere in the world for such a rare and misunderstood condition.  Where even amongst those Professionals who do have a special interest there is much argument between themselves worldwide about even an appropriate name.  I suppose if the gene were identified that bickering professional debate may stop.

Do you know what, right now all that is just talk because if someone suggested I had a morphine pump I would say yes please and bollocks to actually ever hearing the words ehlers danlos again.  Make of that what you will.


It doesn't matter how much I type really I could just repeat over and over 


   pain pain pain pain pain pain pain pain pain pain pain pain


For the past 48 hours I have been having the type of pain even I consider intolerable.  In an area of the body that one doesn't really bring up in company.  How does one say - I am having mind blowing spasms in my lower bowel - I suppose anus would be the best way to describe the area.  I haven't been out of the house now for two days - my spouse wants me to go the doctor.  If its not gone by the morning perhaps I will - this is not IBS by the way, I have had it before and the GP was dumbfounded, she was kind and supportive which is always nice.  If anyone else with EDS gets this please comment and help me out.  The only thing that helps is valium.


When the spasm starts, it makes my whole body tremble, I sweat and pass out.  I come round slowly and if I can manage it, make a cup of cammomile tea and take a valium.  It is often worse at night and unable to wake spouse at all at night (regular readers will know that due to his epilepsy meds, support at night is unavailable).  Pain at night as carolyn writes on her blog (link below) seems worse, more isolating somehow.

Last night I nearly called an ambulance. Eventually the first of many spasms abated.  Today I have slipped in and out of troubled sleep - I know I should go to the doctor.  The cause of the spasms another unknown.  I am practically too exhausted by this episode to even explain to a doctor the severity/nature of the pain.  To anyone who has had children the pain is on par with that.


Because as I have said already - I am much used to pain - If I didn't have EDS would I be rushing to the doctor?

I know I should go.

How do I explain that I feel that at the moment my bendiness is on the inside as well as out.  That my guts have twisted and until they stop it this will continue.  I know it could be diverticulitis or other gut/colon related conditions.  Its just I am not sure I can actually cope with something 'else' as well.  So for the moment I am thinking - its just a motility thing - it will pass.


So today I have used my blog completely selfishly I have moaned and moaned.

 As an aside, does anyone else ever get so that they actually are in so much pain or feel so ill they just can't get it together to go the doctor? 

The spouse wants to call one out.  

How can a doctor come in here - its too fucking untidy.


I want to shout at spouse and teenagers - if you care - clear up this fucking mess.  Husband got in from work and was dog tired - I understand but does he not see the mess?

Teenage daughter got shouted at - I admit it I was completely shitty to her.  She left to see boyfriend having added to the mess.

Teenage son - bless him stayed out til nine, then rang and came in with  nurofen express wondering if it would help.

 I love them all so much but want to shout if I had the energy - 
                            
                                                CLEAR UP THIS FUCKING HOUSE.


I hate it that they see me as being ill all the time.

I want to be normal. 


So there it is my day - pain pain pain pain pain pain pain pain pain pain pain

If there are any trolls out there who want to say  - you self piteous woman - get a grip and stop feeling so sorry for yourself.  Go ahead.  You are probably right.


But right now - if the volcanic ash would let me I would happily get on a plane to Switzerland and do the right thing.  The only thing preventing me is lack of cash, the fact that my mother would see just how untidy the house is and my family would never forgive me.


So I can't even resort to that.


Mostly when I write posts like this I am too embarrassed to hit publish but today this will turn into a post. 

I have made a decision. 

This can't carry on its time to make a plan - 

Time to return to coping and living well with a chronic condition.  

My guess is patience will have to feature heavily in the plan.

(Please accept my ramblings today and appalling grammatical/spelling and layout - that pain thing makes me lazy)




carolyns blog - from which I found the pain statement at the top of this post

Blogging is the best medicine...

Thank you Steph - Click the link

If you haven't read my last post you won't get it!

If you are reading this Kim@frogpondsrock my guess is that you will understand why this is my shortest post ever.

Sometimes it is the smallest of gestures.........

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.