I really badly need a decent haircut.....

Thanks to Veronica (somedaywewillsleep) & Kim (frogpondsrock) I have pinched the idea of passing on a blog I read.  I thought about showing another but because I am selfish I quite like it being my guilty pleasure, not yet ready to share.

So it is my pleasure to direct you to Mr London Street - http://mrlondonstreet.blogspot.com/2010/10/self-help.html

I have a feeling anyone who visits here reads this brilliant blog already but I am nothing if predictable.  Mr London Street is a breath of fresh air.  A man who talks properly about stuff!

After recently saying I don't know who visits here I have found that stats are available to me.  I now know that those who visit here are a direct result of where I comment.  I think perhaps I should have emigrated a long time ago.  I turned down the opportunity to go to Australia/Taz with a boyfriend, I regret the not going to Australia/Taz but not the not going with 'that' boyfriend'.  When young I had a habit of falling for looks and charm forgetting to check out, verity & probity.  So it was with great pleasure when said boyfriend contacted me a couple of years ago, visiting from Bermuda where he now lives with a beautiful but incredibly dense girlfriend. (So why was he contacting me, nothing changed there then) stating that he would love to see me.  After 25 frigging years.  Don't get me wrong a bit of me wanted to say - Oh all right then.  But I am not as young as I was & I like the idea of him remembering me as I was and frankly I wanted him to want to see me and me say no.  I did that.  He immediately said - Oh & a Happy Christmas to you too and slammed the phone down!  Did I leave out that he could always have done with a few more manners.

Had I stayed with him, we would be rich & I would be unhappy.  He was a serial womaniser.  His father in fact was a bigamist.  A man who was married to a wonderful sincere woman (the wife I knew) who found out after many years of marriage that he had a whole other family & wife.  My ex was the type that would fly back into the country - he worked abroad.  Waltz into my life, sweep me off my feet each time and I subsequently found out was doing this to other women in other countries.  I cried and cried fruitless tears over that arsehole.  So when he rang, it was with great pleasure that I not only said - no thanks my husband and I are going out but also rather unnecessarily - (pretend name) Andy who?  I'm afraid I really don't remember you.

I do still have a photo of him in all honesty.  I take it out occasionally to remind me how lucky I am.  My OH has his faults and I talked latterly of marriage and the bits I would change if I knew how.  But do you know what, I would rather have Mr Achelois than that arsehole each and every day.  The only bit I regret is that I didn't play him because if I had I would have got to go to Australia, Taz........   but then again I wouldn't have met Mr Achelois and that would have been a tragedy.

Not sure why I blogged about that. Perhaps its because I have a temperature.  Following the ear drum incision and hoovering.  (can't spell the procedure) I have a bloody infection in the air sac? in the bone behind my ear.  I spent a wonderful hour and twenty f'ing minutes waiting to see a doctor.  Amongst people who frankly should have been at home in bed.  Why people go to the doctor with the common cold is beyond me.  You have a cold, stay at home, stop spreading your germs and put your f'ing hand over your mouth when you cough. Please.  To the mother whose 7 year old daughter was vomiting into a bucket, did you not think she may have been more comfortable with you holding that bucket by her bed at home.  The gp was not best pleased.  I must admit I had bad thoughts about her, I am not good with anyone outside my immediate family's vomit I am afraid.  I hope the poor child vomited all over her car and the particularly smelly bits stick down the sides of the seat and stink forever.

  I have never met the gp I saw today before.  He was very nervous and running very late.  I don't think long qualified.  In time I have no doubt he will stop shaking and give diagnosis with confidence.  In the meantime I really really feel for him.  No doubt he went into the profession  because he is a genuinely nice person wanting to heal the sick.  In some years he will learn to go on expensive holidays and bitch along with the others about Mr Borings piles and Mrs Moanalot's snotty kids.  Can you tell I waited too long.  I am a nice person really and I spent the majority of my time talking to a very lonely old lady who had shingles.  Now I have had shingles and I was looked after.  She was vulnerable and lonely and had no one to look after her.  She probably caught something nasty waiting.  What has happened to the old days when gp's visited the sick at home?

I remember as a child our local doctor (we lived rurally) would set up shop in the back room of the pub.  Those were the days.  As I get older I am aware that I have probably more to look back on than years to live.  The older I get the more I remember.  I particularly like it that for the most part it is with rose coloured spectacles!

I have just realised that I am reminiscing because have myelin (see blogs I like to right) posted about diaries.  I commented that my diary is in my head.  Apart that is from the crap I write here.......

Hoovered Up....

Well I arrived - to get grommets.  No grommets!  Instead, they made an incision in my ear drum lifted it up and hoovered away.  Mini Dyson in ones ears is extremely loud.

I signed permission for this although I was so hungry having not been allowed to eat or drink for hours I am still not entirely sure I was in any fit state to do so.

He wouldn't fit the grommets because of risk of rejection/infection and that at the 'moment' my ears are not gluey enough.  But there was a lot of garbage behind eardrum from numerous ear infections and perforations.  My hearing loss on that day was the same old familial thing - loss of high tones and very low ones.  Not the no hearing at all I get for months in the winter.

Stapled to my notes was a wikki article on EDS!   Last night I was nauseous and dizzy, this morning sore and feeling odd.

It appears that my Eustachian tube is too small.  This may be because of my prematurity ENT bloke says.  So at the onset of any sniffle am to snort a steroid to try to keep them draining.  They were the most charming and kind staff I have ever encountered.   This was a joy as some of you know I have experienced on occasion the opposite.  I am pleased to report that at all times they took into consideration the EDS mobility issues and I had a lovely nurse whizzing me around in a wheelchair along very long corridors.

This evening our beautiful wonderful loyal staffie was put down due to the glaucoma and I have spent all evening bawling my eyes out.  He was a much loved pet who will be missed always.  If there is a heaven he will be cavorting with our last dog and cat.  My grandmother will no doubt be keeping her beady eye on them all so they will be safe and 'B' will have no pain ever again.  Losing a pet is so sad, losing a pet in its prime is just heartbreaking.

My minor procedure is nothing in comparison.  Normally when I blog, OH is asleep, the dog lays with his head on my lap surrounded by cats.  If this post is bland its because I am all cried out.

So as not to end on a negative, I am so pleased for both my mother and goddaughter who are happily on holiday in sunnier climes (not together).  Nothing makes me happier than knowing that the people I love the most are having a brilliant time.

Bits and bobs...

On the wheelchair thing - I am thinking of cancelling the whole process.  Its stressing me out too much.  Thinking that perhaps I should hint loudly and if I do it for long enough around my parents something good may happen.  In truth probably about as long as the whole waiting for wheelchair services to work their magic would take.  I still don't get the whole indoor/outdoor stuff.  So just don't even want to think about it anymore.

The hospital rang apparently (today as I was in a I am not answering the phone mood).  I am to have the grommets done on Monday!!!  A nurse will ring and do the pre-op on the phone!!! What bit of I can't hear properly do ENT particularly on the phone, do they not get.  But no matter, my primary concern is that they can obviously hear but are not LISTENING to - I have great difficulty with efficacy with local anaesthetics (injections and cream) because of the EDS.  They are not listening to this and I am concerned that it is going to hurt a lot.  Before I was diagnosed with EDS giving birth to my first child I was stitched up by a murdering cow wonderful midwife who simply did not believe that injections didn't work and I still haven't forgiven her.  Dentists tend to be more understanding I have found although I still abhor going to the dentist.  I hope the nurse on the phone LISTENS.  Although I must be honest I have never had a pre-op on the phone before.  Probably because its not an op its a procedure.

I am worrying about money a lot.  Along with worrying comes guilt and plenty of it.  When one relies wholly on another for everything its hard to moan at them about money.  Enough said really.

I am holding my breath for the last Chilean miner to pop up out of the pod... so can't comment on that until that happens.  edited to add - yippee - last one out ages ago - I obviously worry so much I forget to check on reality....  

The carpet that is supposed to be fitted in 'our' bedroom is still rolled up on the floor in the lounge.  Waiting for me to tidy up the bedroom.  I have tried to explain that the mess is too much and it looks as though I will be explaining that again.  With the possibility of a major 'take notice' tantrum thrown in.  These days I save these types of tantrums for important things, I'll let you know how that goes.  See I am so confident someone will be reading I blithely write 'I'll let you know'..  The carpet is new to me but not new, so I am having to adapt to the colour.
Beggars cannot be choosers however as my darling grandmother used to say.  It will be better than the floorboards currently exposed.  Now if we lived in a rural cottage like this -

 

floorboards would be fine & dandy.  However we live, albeit in a sleepy village similar to the one in the photograph not at all in a house whose original features look good.  Also I am afraid to say that hard floors and fally over EDS people do not go well together.  I feel I am coming to terms with the carpet not of my choice quite well, thinking that it is good to re-cycle (not really thinking so in this instance but it is good to re-cycle) and that in truth the majority of a bedroom is taken up by the bed afterall.   If I keep repeating these reasons to myself often enough I will believe.  I think its called self hypnosis.

Moving on swiftly, I am watching a programme called Countryfile and am much impressed by a town  where food waste (including meat & bone) is collected each week and converted into electricity.  Clever technologies.  Not everyone has composting facilities.  Converting food waste to electricity instead of sending to landfill - a good idea.  Sewage to electricity another good idea.  I like good ideas, I prefer though when they are put into action.  In our house food waste does happen I will not lie but I hate waste.  I am my mother's daughter!

Well that's more than enough of my bits and bobs ...

E-Motion

Ok I think I would give this a go  http://www.davincimobility.co.uk/

Lightweight with the e-motion powered wheels.

If you are reading BG - I wonder if you think this would be viable with hand/shoulder and the in-between bits issues with EDS?

I reckon if wheelchair services provided these they would in fact end up cheaper than the big bulky models they favour?

Having looked at some of the other options my head is spinning now and fancy some country parks and proper offroading - the options are out there.  How come wheelchair services still live in the dark ages.

My preference I think would be for the E-motion (see details below).

description below from website - funky or what.  

E-motion power wheels fitted turning a self propelling wheelchair into a power wheelchair,  Ask for a free quotation. 

E-Motion powered wheels E-motion reduces manual effort up to 80%. Simply maneuver as a manual wheelchair. Applying pressure to the push-rims engages the power-assist motors to help you with your everyday travels. If you are not ready for a power chair, but have worn out shoulders at the end of the day and would like to benefit from motor assistance, then try e-motion powered wheels and feel the difference for yourself!   *(at the end of the day ha ha ha)

With e-motion powered wheels on your manual wheelchair you can conquer steep hills and ramps with ease, go longer distances without becoming tired or achy, and be more active.

80% less effort than self propelling - would I be able to push enough I ask myself.

This is what my GP was talking about and he said 'S.............' they should provide one like this.  I will look forward to your feedback on wheelchair services!  He knows me well and knows that despite the fact that I will no doubt not get very far with an appropriate powered chair as 'he' has deemed necessary and told them so!  I will give them a run for their money.

I have I must admit thought about cancelling the whole assessment - but as there is a waiting list anyhow I am sure I may muster up some gumption to challenge some of their seemingly archaic working practice!

Despite the fact that the GP has already told wheelchair services that this type of wheelchair would be suitable my guess is that this particular service provides -fuck off chairs that don't fit in normal sized houses!  Is there a whole load of people out there relying on carers to push them about when really if WCS moved with the times things would be different.  Or people getting indoor power chairs which  because the rules state they have to in order to eventually get an inside/outside chair.  I fear I am repeating myself now.  I promise I won't post about wheelchairs for a while yet as you may guess they are on my mind a little right now.

Steph - thank you for your comment - I could not agree more! 

BG - Please do let me know if your local wheelchair services department has changed at all and how you get on.  I don't think my house is big enough either for a power chair - in fact I am not sure many people's are.

I have a feeling that I may have to do that thing I abhor for so many reasons and beg parents for a loan.............


Just to say if you have stumbled across my blog and are thinking arghhhhh she's a seriously negative human being.  In reality I am not.  I am actually pretty grounded and I laugh and sing daily its just I can write stuff here and get it out of my head in turn enabling me to cope with life in a positive way.  Its only a blog afterall and its mine so I can write what Iike as long as its not causing offence or hurting anyone.  There are so many blogs out there that if its not your cup of tea thats fine by me, there is plenty more out there.

Moving swiftly on.......

Wheelchair services to be or not to be... that is the question

On happy smiley me - we have another kitten - black and white named bliss. I promise no more kittens unless we win the lottery and move to that mansion.

I deliberately wrote knew instead of new further down this post I am in that kind of mood.

I am not intending to read this post through after writing it so it remains 'surreal'.

I mentioned in a comment recently that my GP had referred me to Wheelchair Services.  I subsequently received a phone call from a lovely lady to 'explain' how this service works.

Now I have thought over and over again how I could possibly put the conversation that ensued into words.  BG from benefitscroungingscum.blogspot.com replied to my passing comment about this to one her posts that she had found such encounters surreal.

It has taken a little while for me to digest the information within the phone call and I agree entirely with BG.  Firstly trying to explain to someone what ehlers danlos is who has no medical knowledge at all is tricky.  In the end I suggested she googled in desperation.

She explained very politely that it goes like this - if one is deemed appropriate for an electric wheelchair following an environmental assessment (this basically means looking inside and outside of my home), then after a very long wait, one is issued with a powered wheelchair that one can use inside for four to six months then after that, they see how you get, they consider an indoor/outdoor model.  Another long wait.

She asked me why I could not use a 'walker' - crutches etc. and I patiently explained that I cannot hold my body weight through my hands, wrists, elbows, shoulders, spine ......... because I have ehlers danlos and this causes subluxation/dislocation and soft tissue injuries plus more.  The same reasons I cannot self propel a wheelchair.  Oh yes the more includes mind blowing PAIN.

She asked how I walk now, I explained that I am currently using knee braces but this isn't the only bit of me that is the problem to do with walking, you know the other bits included, feet, ankles, hips, pelvis..... the braces do not 'cure' me and with a combination, indoors of staggering around and hanging on to the furniture, the dog, and more often than not 'not' walking these days it is a precarious painful process. She obviously isn't interested as yet on the outside bit but for the record holding onto OH is OK after all these years of marriage but it would be nice to not deemed agoraphobic more than I already am simply by dint of 'the criteria'.  If you are getting lost here remember only the inside bit is considered for the first six months.

I did feel as though I was having to justify myself a little too much and a qualified doctor had deemed it appropriate that I need an electric lightweight wheelchair. Bearing in mind she was not medically qualified she was pretty invasive with her questions.  However I kept reminding myself that it was all in a good cause and not to be my normal bolshy self and continued to be charming.  Hiding well I thought, a pretty strong urge to terminate the conversation.  She being the facilitator so I thought to improve my mobility and independence.

She then explained that powered wheelchairs are bulky and that the environmental assessment would look at my home (fair enough) and if I couldn't get access to the garden with it then I wouldn't get one.  (Bear in mind they don't trust one outside of the home for up to six months).

I would need a vehicle with ramp access to take said wheelchair for the inside/outside chair.

I said that in the home was pretty rubbish but its walking outside as well that is an issue.  But the way they see it disabled people apparently don't need to go outside.  Inside and be grateful be damned.

She explained - that on the NHS only bulky powered chairs are available but that she would send me a letter explaining that I had been put on the waiting list for an environmental assessment.  I said save the trees as I had ascertained that from the conversation but she was obliged to not save the trees and send a letter anyhow.  Bearing in mind how stressful I was finding this whole conversation I thought my minor pun on the words environmental assessment including the trees was pretty good going.

I have left out other more ridiculous parts of the conversation because in truth thinking about that more just upsets me.  It would seem that the GP shouldn't have bothered frankly making the referral because they won't actually be able to accommodate my needs.  I don't have the money to buy the type of wheelchair which would be appropriate.  So it just leaves me wondering whether the system was set up and the criteria of need set up deliberately to make people realise its a no go situation.  Well it is if one is rich obviously.  Money and lots of it would be entirely useful in these circumstances.

(just read a little of this post from blog and have to say a whole paragraph has disappeared if you find it in or out of my blog please return to confused sender)

 One is also apparently given a dvla type test if one gets an outside/inside wheelchair.  I said, I have a proper driving licence and she said I would still need a dvla type competency test on eyesight etc. I repeated that I have a full driving licence, she repeated that it didn't make any difference.

Oh and if I had epilepsy I couldn't have one.

Well that did get me going - I don't but those of you who have read my blog for any length of time know two members of my immediate family do.  I asked her to explain further.  Well goodness me, we nearly fell out.  She explained that epileptics can't have a power wheelchair because its not safe.  OH MY GOD.   and that perhaps it wasn't entirely appropriate that she say this like this and that she needed to think carefully before stating that epileptics persay wouldn't meet the criteria!  Suffice to say I think she may be giving some thought to terminology.

I have missed out a fair bit of the conversation because frankly I still cannot believe my ears.  It has taken me ages to type this post I am fally aparty and if the continuity is poor its because I have typed a bit, and come back another day for a bit more getting more confused by the moment as time passes about exactly what bit of the 'wheelchair' and 'services' bit applies to each other.  Seemingly reams apart.

Now if anyone who works for wheelchair services is reading this its nothing personal and I am sure you didn't make up the rules so don't take offence.

My guess is that all that I will get out of this is a bog standard wheelchair which carer will need to push.  Expecting more was just a pipe dream I guess.

I apparently need to move home, I need to be able to drive a car I would not be happy to.  Mine is a small automatic and that is all me and my mini driving phobia can cope with.  So despite how much us disabled lot want to be independent it seems wheelchair services don't quite get it although I was left feeling that its me that doesn't quite get it.

Oh as an aside every time I try and have this conversation with OH his eyes glaze over with denial more than I am capable of bearing in mind I like denial. 

So having got all that out of the way - knee brace, jury is out at present.  It is pulling my hip out of its socket, my other leg is complaining big time (a bit like me) and other hip is not liking it at all.  members of the public do seem impressed though and continually ask me what I have done....or my OH with the does she take sugar principle.  I wonder if these random strangers would like to take me out to lunch whilst I explain tee hee...  It seems with a brace or caliper as someone referred to it the other day means my disability is suddenly real.  Its magic truly abracodabra (sp) along with the rest of my dodgy spelling.

I still can't crotchet... bendy fingers 'n all that boring stuff seem to make this more complicated than it should be.  I will perservere.

 After all that I have run out of brainpower to say much more.   I haven't written the whole wheelchair services saga because of moaney ol me reasons to be honest more in case someone googles wheelchair services and stumbles across this it may help them realise they are not dreaming its real life.  Its better than the telly - its drama.