I have been asked by a few bloggers of late if they can add me or me them to Facebook. However it works.
I hope this makes sense but Facebook for me is a place where I keep in touch with very few people really. Relations too far away to see often if at all. Friends who have emigrated. Plus the odd few that have slipped in. In all I only have about 19, maybe less 'friends' on facebook. (now I think about it, it could be 9 and I am too lazy to log in to check).
So by way of apology and explanation, Facebook still worries me a little. I know I can control my privacy settings except the powers that be ie: facebook god - keep changing the layout and settings.
On my blog I am Achelois and shall always remain so. Unless I change my mind and that is my perogative. Facebook is in my real name and most of those who are my friends there don't know about this blog. The reason for that I am not quite sure why. (if you do and are about to comment either here or over there in the F place - please please respect my wish for annonymity here - you know who you are). I don't know why I like it like that but I do.
Its not that I mind bloggers that I communicate off blog that sounds quite charming don't you think a little like off piste, with knowing my real identity either- name etc. and those that I email and vice versa do indeed know. So its not as though I am a fraudulent creep. I am who I say I am.
Its just that for some reason I just can't cope with the whole Facebook thing. In my world at least growing too fast for me to keep up - also me as 1 amongst 397 other friends on other people's facebook feels a bit spooky.
So if you have recently requested that I add you as a friend on Facebook via this blog please please please don't take it personally if I rather rudely just don't respond to the suggestion with no explanation by just ignoring it. It truly is nothing personal. Its just I haven't really been able to find any well thought out reason for why I just can't push that add me/you as a friend button thingy that makes any rational sense. So I thought I would publish my irrationality here on my blog!
I am just a little bit complicated on my ethos about Facebook which I find hard to put into words in the first place and am happier doing things the way I do.
If I have a revelation and change my mind I'll let y'all know. In the meantime please forgive me and my eccentricities.
Sunday, 28 March 2010
Monday, 22 March 2010
Helping Hands - A Very Worthy Cause
IVY
(photo's copied with permission from Ivy's mum Tiff)
In the UK this weekend Sport Relief took place.
Over 29 million pounds raised for worthy causes worldwide.
It seems a little corner of the world was all forgot.
(in no way on purpose)
If we could spread the word
I am sure our virtual community can help to make a difference.
Please click on link below to find out about IVY & why Tiff her FANTASTIC mum is trying to raise money for the hospital where Ivy spends much of her young life.
http://www.mythreeringcircus.com/2010/03/helping-hands/
To donate now to help the hospital & find out more,
please click on the link below
please click on the link below
This Cause, needs support to raise funds which in the grand scheme of things is a very small & humble request.
Just think now, in our virtual blogging world we could collectively help the hospital despite the 'real' miles that keep us all apart.
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Last but not least -
Saturday, 20 March 2010
The jury is out ....
Oh thank you bloggy people. I started to comment on comments and decided to post instead by way of reply. Not sure again having done it once before whether this is acceptable blog etiquette or not but no matter.
Veronica - thank you for being there - I expect you are right - I did say to the gp - many years ago my 'good' physiotherapist said = the problem is really that you need a double knee and tendon replacement but no one would do it. Why replace one dodgy tendon with another.
Veronica - thank you for being there - I expect you are right - I did say to the gp - many years ago my 'good' physiotherapist said = the problem is really that you need a double knee and tendon replacement but no one would do it. Why replace one dodgy tendon with another.
The gp(s) as there were two of them at the same time (scary) decided after basic neuro exams, the classic ones I fail.... nb I always fail them always have! So have that positive whatsit sign thingy and the rest on neuro front. Hence the referral. I tried to say the opthalmologist said the stabbing pain in extremeties was the PHN (although last rheumy said it was Raynauds) but they said it could be neurological. (although if I am being pedantic in theory PHN is somewhat neurological anyhow)
The registrar at A & E said the chronic muscle spasms in back are from my shoulder being out - the pain management team say its from bulging discs and nerve impingement. A combination of it all is the problem I think, but that would mean one discipline would have to talk to another - god forbid.
I will add the neurologist into the pot mix it all up and come out with the same nonsense no doubt! If things carry on as they are I won't be able to hear the answer anyhow!!
On the deaf thing - saw local friendly pharmacist and he says pass go do not collect 200 and go to A & E!He thinks its not an ear thing and Maxillo Facial (serious spelling problems on that one) need to have a look. Haven't done that yet too busy writhing around with muscle spasms. ha ha
Geri Atric - hello thank you for your comment - they think my father possibly contracted this following whooping cough or measles as a child, although there seems to be a connection with ehlers danlos as well! He has been misdiagnosed with late onset asthma. Latterly - in his 70's n he has had pleurisy and severe chest infections needing loads of different antibiotics and steroids. He is very very tired a lot of the time. He did work for the Ministery of Defence associated with exposure to radiation at some point a very long time ago and they are looking into this tentatively. I also think they gave him an old fashioned med the name of which escapes me - to try to get him to cough up from deep within the bottom scarred area of the lungs. He insisted on an mri and thats how they came to the diagnosis. Thank you for your thoughtfulness.
Oh em, thank you always there with genuine reassurance - go to the appointment.. - I know you are right but you are also right with the years of consultant merry go rounds.
On the deaf thing - saw local friendly pharmacist and he says pass go do not collect 200 and go to A & E!He thinks its not an ear thing and Maxillo Facial (serious spelling problems on that one) need to have a look. Haven't done that yet too busy writhing around with muscle spasms. ha ha
Geri Atric - hello thank you for your comment - they think my father possibly contracted this following whooping cough or measles as a child, although there seems to be a connection with ehlers danlos as well! He has been misdiagnosed with late onset asthma. Latterly - in his 70's n he has had pleurisy and severe chest infections needing loads of different antibiotics and steroids. He is very very tired a lot of the time. He did work for the Ministery of Defence associated with exposure to radiation at some point a very long time ago and they are looking into this tentatively. I also think they gave him an old fashioned med the name of which escapes me - to try to get him to cough up from deep within the bottom scarred area of the lungs. He insisted on an mri and thats how they came to the diagnosis. Thank you for your thoughtfulness.
Oh em, thank you always there with genuine reassurance - go to the appointment.. - I know you are right but you are also right with the years of consultant merry go rounds.
Thank you for asking about 'B' -not too bad is she, depending on the day. That however is a whole other story I may or may not tell - there is a whole lot of parental concern mixed up with parental boring - what the **ck is going on! (came back and edited a bit out I must respect privacy!)
Hoping your dear cute pooch is on the mend.
Just went to publish comment and up popped your comment Have Myelin. Its weird the ear thing - i have always had ear issues although obviously not as severe as yours. I have had multiple perforations and as a young four year old had surgery for a massive abcess in throat - including ear which made me extremely poorly.
Hoping your dear cute pooch is on the mend.
Just went to publish comment and up popped your comment Have Myelin. Its weird the ear thing - i have always had ear issues although obviously not as severe as yours. I have had multiple perforations and as a young four year old had surgery for a massive abcess in throat - including ear which made me extremely poorly.
Although I know you have a cochlear implant, the hearing impairment not being associated with the MS. I am afraid I cannot remember the reason despite spending an entire evening reading your blog from start to now... note to self pay more attention!
In a way it wouldn't surprise me if they did say MS as a fellow EDEser forwarded me a research paper that said that those with EDS have a higher percentage of having both than is the norm. NB I haven't put in the statistic as getting it wrong is just scaremongering! Not that i would wish MS on my worst enemy although in writing that I am not sure I have an 'actual enemy'. perhaps I do and don't know, what a simply awful thought. Over here I would get much more support if I did have it just because of the way our health care system works - sad but true.
Oh yes before I forget.. howcome people are so ready with morbid diagnosis' unmprompted. In the supermarket today, a very friendly elder said to me - oh dear, dear... my husband did that with his leg and has Parkinsons now. Um do I know you and I wasn't aware it was catching. Must remember face mask in public in future. tee hee.
I do not include you bloggy people by the way in the above paragraph - by blogging I ask I guess for your welcome input. My guess is the lady was lovely really, I was just trying to concentrate on whether to buy a new pastry cutter which I did. That certainly made my husband laugh as I definately can't make pastry these days. But I am an optimistic and it may be that without the appropriate gadgets in kitchen I would give up hope - not me. If I say that often enough it will come true. Especially if I rub my nose (or in my case try for that and hope for the best) and click my heels together .. ha ha. I may have got my television programmes mixed up there I think.
Steph - thank you for your comment. I expect the same on the MRI although I did have my orbital front stuff done not long ago to do with the PHN. Sorry for lack of medical terminology Ihave a file somewhere with medical letters in - obviously not near me! I always plan to be organised before Consultant appointments but something happens to me 'in' the room that means I get instant amnesia on anything that is said. Have written on this before regarding viral meningitis! But as I don't do the labels thing like a good girl god knows where that is. ha ha I don't really understand MS factor and lesions ie: are they always in the brain or other places too. To Have Myelin - please don't cringe on that one. The appointment is due to come through on the choose and book system so that will be fun, normally this means one has to follow up the computer stuff with a telephone call, which is followed by a random letter saying the appointment chosen is not available and here is another. Anyway - it can't be serious as they haven't carted me off with the blue lights yet. Hope you get to read this post as I am not sure the commenting on previous post thing works as bloggy people keep posting. So think I will revert to old system of commenting on comments as they come in!!! Really appreciate you taking time out to comment as I know you are still recouperating. Take care Steph.
Steph - thank you for your comment. I expect the same on the MRI although I did have my orbital front stuff done not long ago to do with the PHN. Sorry for lack of medical terminology Ihave a file somewhere with medical letters in - obviously not near me! I always plan to be organised before Consultant appointments but something happens to me 'in' the room that means I get instant amnesia on anything that is said. Have written on this before regarding viral meningitis! But as I don't do the labels thing like a good girl god knows where that is. ha ha I don't really understand MS factor and lesions ie: are they always in the brain or other places too. To Have Myelin - please don't cringe on that one. The appointment is due to come through on the choose and book system so that will be fun, normally this means one has to follow up the computer stuff with a telephone call, which is followed by a random letter saying the appointment chosen is not available and here is another. Anyway - it can't be serious as they haven't carted me off with the blue lights yet. Hope you get to read this post as I am not sure the commenting on previous post thing works as bloggy people keep posting. So think I will revert to old system of commenting on comments as they come in!!! Really appreciate you taking time out to comment as I know you are still recouperating. Take care Steph.
Over and out - thank you for being there.
I may write another post this weekend - expect a lot of drivel lol....
foot n deaf...
Well a new referral to a neurologist.
In brief my left foot drags. I wonder what this new consultant will say. Will I be compliant on the day I wonder and give an appropriate medical history. I am wary of new consultants, will they have a knowledge of Ehlers Danlos. I didn't ask for the referral anyway. I went to the gp with earache, except its not a classic earache - following the flu virus some five weeks ago now I went deaf. Normally in these circumstances my ear drum perforates - painful but a blessed relief when it happens. Where is this infection stuck - somewhere. Antiobiotics are making no difference and I cannot hear the phone ring. Please could I just have a virus - get better and get on with life!
The foot drop/drag thingy came as an aside. With EDS minor inconveniences such as this can go unnoticed. Osteopinic me You see when one's knees crunch, creak, dislocate, ankles lie flat on the ground, hips rotate and sublux, lower back has osteoarthritis, spine has bulging discs, shoulders dislocate, neck arghhhhh, elbows back bend and do their thing, wrists over pronate and thats fun, thumbs, fingers dislocate. Post herpatic neuraliga you know that suicide pain thing I love to have. Well with all that walking is fun most days anyhow. So a bit of foot drag/drop is nothing to me. I have deliberately left out muscle stuff - well thats just boring isn't it.
What will a neurologist make of it I wonder. I saw a neurophysiologist once who was the brainiest person I have met. His technician attached me to the machine to test muscle firings - that was fine it seemed it was the ehlers danlos that made my fingers claw and all that crappy stuff. I wonder again whether they will do that again but on my leg? Probably they will say mmmm thats weird.
Any ideas anyone what could be causing it. It would save me the trip to new consultant. As some may know I am adverse to hospitals and consultants, years of misunderstandings and labels of things that I am not make me this way.
I am too tired to give a succinct medical history. I feel like saying you get paid - a lot - learn about the condition.
But this symptom may not be related to the EDS. I am not prone to googling what it may be, who am I to know.
So bloggy friends - what do you think it is? Husband says I must attend and not cancel appointment. So I had better go. Hopefully there will be a long wait and it will go away and I won't have to go!
Thus far I have had the following suggestions!
From a relative - oh that will be MS your uncle - you know the one you have never met has that.
From a friend - its probably a mini stroke- or lots of mini strokes (do lots of mini ones make a big one I wondered).
From a passer by in the street a stranger by the way - did you know there is something wrong with your leg? no diagnosis.
From husband - I don't know but it makes you walk even slower than ever.
Me - don't give a shit frankly except I am falling over more often.
So bloggy people - any ideas? No obligation to comment.
In brief my left foot drags. I wonder what this new consultant will say. Will I be compliant on the day I wonder and give an appropriate medical history. I am wary of new consultants, will they have a knowledge of Ehlers Danlos. I didn't ask for the referral anyway. I went to the gp with earache, except its not a classic earache - following the flu virus some five weeks ago now I went deaf. Normally in these circumstances my ear drum perforates - painful but a blessed relief when it happens. Where is this infection stuck - somewhere. Antiobiotics are making no difference and I cannot hear the phone ring. Please could I just have a virus - get better and get on with life!
The foot drop/drag thingy came as an aside. With EDS minor inconveniences such as this can go unnoticed. Osteopinic me You see when one's knees crunch, creak, dislocate, ankles lie flat on the ground, hips rotate and sublux, lower back has osteoarthritis, spine has bulging discs, shoulders dislocate, neck arghhhhh, elbows back bend and do their thing, wrists over pronate and thats fun, thumbs, fingers dislocate. Post herpatic neuraliga you know that suicide pain thing I love to have. Well with all that walking is fun most days anyhow. So a bit of foot drag/drop is nothing to me. I have deliberately left out muscle stuff - well thats just boring isn't it.
What will a neurologist make of it I wonder. I saw a neurophysiologist once who was the brainiest person I have met. His technician attached me to the machine to test muscle firings - that was fine it seemed it was the ehlers danlos that made my fingers claw and all that crappy stuff. I wonder again whether they will do that again but on my leg? Probably they will say mmmm thats weird.
Any ideas anyone what could be causing it. It would save me the trip to new consultant. As some may know I am adverse to hospitals and consultants, years of misunderstandings and labels of things that I am not make me this way.
I am too tired to give a succinct medical history. I feel like saying you get paid - a lot - learn about the condition.
But this symptom may not be related to the EDS. I am not prone to googling what it may be, who am I to know.
So bloggy friends - what do you think it is? Husband says I must attend and not cancel appointment. So I had better go. Hopefully there will be a long wait and it will go away and I won't have to go!
Thus far I have had the following suggestions!
From a relative - oh that will be MS your uncle - you know the one you have never met has that.
From a friend - its probably a mini stroke- or lots of mini strokes (do lots of mini ones make a big one I wondered).
From a passer by in the street a stranger by the way - did you know there is something wrong with your leg? no diagnosis.
From husband - I don't know but it makes you walk even slower than ever.
Me - don't give a shit frankly except I am falling over more often.
So bloggy people - any ideas? No obligation to comment.
Wednesday, 3 March 2010
Not Today...
Each day I mean to write ...
to say
this and that.
I stare at the empty page
and wish
I knew
which words
to use
but not Today...
Emails to answer, bills to pay, not Today.
The treadmill of life has caught me, entrapped in the this and that.
If I had my way I would fly away... Today.
My butterfly day,
to land on the soul of those whose days are so affected
with illness, grief.... & pain
then briefly for a moment would steal a soul
redress the need for peace.
Return a soul
made better.
No need for words no speak.
So if a butterfly rests gently
beside your shattered soul
know that I may have been there
& in my dreams I speak..
of love
of life
& laughter....
Let me rest awhile & play
with shattered emotions
& mend them
whilst I stay
I may come in different guises
a butterfly I may not be
perhaps a shaft of sunlight
dancing on a leaf.
But if I pause & stay awhile
just know that I stopped by
to say
I have no words today....
no speak.
no speak.
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