Christmas greetings!

;.'#
Merry Christmas everyone!



Now excuse this blog if it comes out wrong! Eyes bad and voice recognition software doesn't really do Scottish and I really can't be bothered talking like the Queen at 4am on Christmas day! With the pain I have at the moment I'm hoping that the kids sleep to at least 6 and hopefully they will then be able to find a happier Christmassy mummy instead of the Exorcist Regan one that has taken her place these last two days!



ok problem 1 - no pain meds of any kind! Have 3 signed prescriptons right here.

problem 2 - Reason have prescriptions here on paper and not in bottles? I live in a country that goes into some huge kind of breakdown if it snows! All wheelcheer accessable taxis were pulled for Health and Safety reasons yesterday. So got asked why can hubby not go pick it up? Yes leave Autistic 5 year old and the 11 year old on the sugar high from hell! With the mum who can barely see them! That could have worked I suppose! Or get my mum who can barely walk herself to shove on her skates and see if she could catch the same pharmacy that is going to be open on Sunday, reason has to be the same Pharmacy? Well because of a disibility related tablet mix up last week the new GP at our Practice has put me on a 'junkie script' for one of my prescriptions! Has to be dispensed every 3 days! By the time we worked out which pharmacy it was that was going to be open this Sunday, who could and who could not go to collect it yesterday and Sunday, (family inconsiderate assholes having jobs!) it was too late to collect it anyway! For the second day running I could not hand in the urine sample that is needed or get the bloods done, which already show with their high CRP result that I have inflamation in my brain again! well duh! Took the Antibiotics for a week for a urine sample that said I had infection now bear in mind that sample was handed in in the only sample container I could find, a white topped bottle (should have been Red) which I wasn't sure had been used before, (they ration them here) so was rinsed out under the tap and then transferred to a red top by my GP's about 3 hours after I had done it on the 11th! Got a prescription then for the Antbiotics just in case and for Diazipam then too. Which where all this bloody shit started.

Even though I did not have had and have never had have any symptoms of a UTI well not unless my Kidneys have fell and came to rest at the base of my spine right above my cockix which is killing me. (right thats it, I am switching the bloody viavoice off! I know how to spell coccyx and that bloody wasn't it! useless piece of junk!) Ok we are now on to touch typing (never a strength of mine, ask Mrs Kettles!) and my right eye surgically taped closed, (it jumps from eye to eye) So against my usual common sense to this kind of prescribing I thought about it and took the just in case antibiotics, well just in case!

I was also taking my 15 Amitriptyline at night and some days, but not everyday the 12 Diazepam 2mg 2-3 4 x daily I had been prescribed. Now at my pharmacy (the only one that seems willing to order in the plain white Tramadol capsules I get, not the ones with Quinoline yellow dye that gives reactions anywhere from hives to wheezing! So really not allowed, hence 15 x 10mg Amitriptyline every night instead of just 3 of the dye loaded 50mg ones!) Well my regular Pharmacist, who is great by the way!

Well she dispensed the the Diazepam on the 11th. Only these two medications come in boxes that are practically identical, exactly the same size, except one has a green band and the other has a yellow band. So come on how could anyone who at that point was only seeing in black and white and negative ever get them mixed up? Well as dumb as it sounds I did and instead of taking the 15 x 10g Amytriptiline, I took 15 x 2mg Diazepam and 30mg of Amitriptyline! When I woke up a very exhausted hubby to give me my medication.

See what I mean dumb! Not as dumb as the next thing we did though because as a good little pill popper I am, (well except for the Just in Case Antibiotics which is really bad, by the way! And never something that I would ever condone, as unnecessary prescribing and use of Antibiotics is why Antibiotics are getting their asses kicked and are losing in the war against Bacterial Infection in our hospitals!) I did exactly what it says in the medication advice leaflet as soon as hubby and I realised what I had done, we contacted a medical professional for advice, or at least my hubby did as I was too bloody sore on account of having ran out of Amitriptyline and was almost out of Tramadol as well!

Now I think it must have been at this point that this new doctor must have got confused as she said I couldn't have ran out as she had prescribed more than enough medication. Which when she did finally speak to me the next again day she made more than clear, when she told me that she had prescribed 420 Amitriptyline on the 15th! Which I then explained to her was news to me, as I hadn't been anywhere near or in contact with the surgery since the 11th! I was almost out of pain meds and even though I had not been taking all the Diazepam I could take, every day I would run out of that at some point over Christmas as well especially having taking 27 of the 112 I got on the 11th in the one day/night! Which is where my nightmare before Christmas began! Now she found the prescription that she had done on the 15th, on the 22nd she did one for the Tramadol but was giving thought to the Diazepam.



On the 23rd I was that bad I wanted to go into hospital. She agreed! I thought 'yes they will sort out my meds can test the new sample I had to hand in, take new bloods and then boot my arse back out again like they always do, severe bed shortages, lack of disabled access facilities, trust me when I say this, that after last time I was there that this hospital does not want me for long! Did I want to go in to hospital 2 days before Christmas? Did I heck but it would have sorted out my meds, started the labs that needed to be done, which would have sped up the process to me perhaps getting the treatment that I need, which is 3 daily IV doses of Methyl Prednisilone to try and stop another of my Axons dying. What is wrong with my eyes is not an attack of what they call Retrobulbaropticalnueritis which is just a big word that just means swelling of the optic nerves behind the eye! If it was then both nerves wouldn't be affected in the way they are and as intermitantly as they are, I can almost read this now but if I look up at the lightbulb I still don't see a light, I see a halo around where I know the light is and by closing either eye I actually could be the only person this Christmas day that can say she sees the light!

The hilarious thing is that if I could actually see an very detailed picture of my brain I could probably stick a pin to within milimetres of the Axon that is being attacked and is inflamed! you have your eyes, then you have the nerves behind your eyes, (optic nerves) then there is a point in your brain where these nerves intersect, so that visual information can be passed to it's correct primary visual cortex at the back of each side of your brain. Basically what your left eye sees is processed in your right PVC and what your right eye sees goes to the one on the left side of your brain. I can't recall what that intersection is called (see this no longer having instant access to information I know, I know! grr I used to think as a kid that having an eidetic memory was a bloody curse! used to go to great lengths to hide the fact I had it! Now I know that the true curse is only having half of bloody one!) anyhow this intersection is pretty damn close to your pituitary gland, the teeny little bit of your brain that controls basically all your Endocrine systems, Thyroid, Hormones everything like that! Now the inflamation in my brain at the moment and probably over a lot of the last year is somewhere pretty close to around there!



There were clues, before this latest thing with the eyes and again with the loss of feeling in the lower half of my legs! (though not with the right leg at the moment, very painful falling ou wheelchair and twisted ankle accident the other night!)

I lost over 5 st in a year, with no diet, no exercise, whilst stuffing my face with enough Ferrero Rochers that if I could find all the boxes I could do a James May and build the kids a small house out back with Ferrero Rocher bricks, we could enter it in the Turner prize! Could really do with the prize money too! Having only one fallopian tube but having a period every two weeks for most of the last year? I didn't need a degree in anything to figure it out! Which does make me wonder why those that do have such degrees have never said anything to me about it.



Anyway back to the nightmare, Doc phones back can't go to hospital on the 23rd as that white stuff falling from the sky and the below zero temps means that Ambulances are doing Emergencies only. Fair enough, so leave house a little after 1pm to get to doctors to pick up prescriptions and hand in sample. Kids off school, wee one suffering with this hacking cough and throat 'infection' So not about to let hubby take him out or pay the £14 it normally costs to get to my Doctors by taxi! So wrapped up warm and off I wheeled. *note to self* wheelchairs and snow doesn't work! Especially in my town. Got about 2 and a half miles, realised it was ten to six and I wasn't going to make that other mile before docs closed at 6 got home about 8pm! This was the night I fell out of my wheelchair and sprained my bleeding ankle! As if things couldn't get any bloody worse! C'mon this is me, there is always a bleeding worse! Go to minor accidents unit! yeah could do that if all the Wheelchair accidents hadn't been put off the bloody roads for H&S reasons! Did manage to get the prescriptions picked up from the Surgery by my brother running my mum and making himself 3 hours late for his work! Couldn't actually get anyone to pick up the prescriptions as the no one could work out which pharmacies would be open or if they could even be got to as the 3 day 'junkie' script the doctor stuck the Diazepam on would have to be collected from the same pharmacy! pharmacies open Christmas eve, would be closed on the 27th, how crap of Christmas to be on a weekend this year!

So it is now 45 minutes into boxing day and I have to pull an ambulance off a really imporant call to go to that bloody hospital as out of hours wont come out to give me any kind of medication until I have had this bloody foot xrayed! It won't be broken I know this as I don't break bones, ever! So after eating my Christmas dinner here alone whilst everyone else went to my mums for theirs, I now have to spend boxing day alone in the same hospital where the last time they could find me a bed the only way to go to the loo was to leave the ward they put me on, cut across the carpark in the middle of the night to use the only disabled loo that was open at night in A&E. The same hospital where I asked for the meds I had been written up for 4 hours earlier I was told well snapped at really "I am very busy, can't you see we have sick people here!" eventually did get the shot 7 hours later, ten minutes before they packed my ass into a taxi and sent me home! Something they won't be doing this time not unless the roads and weather have improved a lot and they can find a taxi to take me. So happy boxing day then! a whole night of drunks and junkies, me shoved in a corner (thats if they let me take my wheelchair!) and being my own invisible self! Maybe the scumbag that stole my ipod will be there again, might try for the phone this time!
and all because of the bloody wheather!
Our Goverment does realise, that in countries where regular heavy snowfall and freezing temps, sometimes all year round that there are millions of people laughing their heads off at just how quickly our country shuts down completely in conditions nowhere near what they have to manage with everyday!

After the first hour of being in there my immune system is going to be so loaded with viruses that next week I get no treatment!

msghost

Twas 6 Weeks Before Christmas

Twas 6 weeks before christmas and all through the house
people were extremely angry all because of a mouse
It shit all over the place without even a care
Was not nice or jolly or bloody fair

The parents cried into their hankies and all hung their heads
What to do now when all of their sprogs were in their beds
They all exchanged numbers, made plans for a Sunday night cap
Where they could ponder how the mouse gets away with this crap

It's not the first time he has done it oh so many times before
It is what happens when this mouse gets under your door
He's well known around the world from the UK right to Hong Kong
Just moves in, takes and leaves behind nothing but the pong

This mouse thought he was smart but is really as mad as a hatter
If he thought parents were just like tree baubles easy to shatter
All those mums & dads were onto him though as quick as a flash
He was after MOT's molucated potatoes as he was sick of just mash

A very greedy, fat mouse but with not enough brains to know
We shouldn't judge the mouse its not his fault he's a bit slow
He thought the parent's would just tremble and quake with fear
Just because the mouse jumped out and said he was here

As I said though they knew he was really incredibly thick
Schnizzle even said he'd never before seen such a pr**k
Now the people who kept this mouse had no shame
To them his terrorising of parent was just a game

Now go Polly, go Christies Gal, go Nessy and go BFG
On Tootsie, on Daedy, on Topsy and on OMC
Show that bloody mouse he is not really that tall
Infact faced with this crew he is really quite small

Youngmumkim & oldmanrab had an inkling but needed more proof
She was young and he was just bald and a bit long in the tooth
He always thought this particular mouse was really quite sound
Ignored the protester OMC and her cries of they 'pay them less than a pound!'

She knew under all that fur that mouse never gave a hoot
About all the workers it kept helpless, downtrod and under his foot
All the toys from China it had to send right back
Those poor workers in Haiti he threatened to sack

She wonders if poor Remi ever got that raise to 50 cents a day, was his Christmas merry?
20 Cents extra, he wanted it so to feed and school his kids, not to spend on Sherry!
OMC remembers Remi's lass on Christmas morn how her dad can't afford to work slow
As the most he could earn was 42 cents depending on how fast he could sew

Did Remi make those PJ's below the tree, all carefully wrapped and hid underneath
Is that really a mouse, could he be a little rat are mice supposed to have such big teeth?
As yet another dreamy mouse ad for Christmas bursts to life her telly
OMC can see why some do forget that this mouse is just smelly

So think carefully when you go to his shop as see that toy on the shelf
It was made by another poor exploited parent and not by an elf
There is just one thing that fills this mouse with fear and absolute dread
That kids wont be taking his mousey dreams with them when they go to bed

And mouse you think long and hard before you mess with oldmothercath
She is not known for her happiness but you dont want to see her wrath
Don't mess with my friends mouse now just you let them alone
You have taken enough from them, taken away their home

The British market share was not a right mouse, it was a very big perk
Were are a whole different kind of parent you pompous oversized jerk
Parents not buying your hugely overpriced but cheaply made tat
You mess with this Cath, she drops an H and becomes a bloody big CAT

Now I want you to think carefully on what happened to Woolies and their Lolita bed
Made the Ten o'clock news, all the papers, gave the board a very sore head
Now please take this ditty in the spirit it was truely meant, all in fun and very good humour
Don't you screw with us, Lolita was bad? Just wait and see what we can do with a rumour!


Cath x

CANCELLED

Well the guys came on the 8th to start the ramp just like the council said they would. Then they went and didn't come back until this morning!
They are really getting stuck in about the job now though as I type!
So hopefully todays appointment for the pain clinic is going to be the last one we have to cancel. I knew, I just knew that something like this would happen. I can't get out of the house. Can not use the front door as there is obviously no path there at the minute, it might be quick drying concrete but I seriously doubt it will be dry in the next 60 minutes which is when I need to leave to see the Doc at the pain clinic. I can't get out the back door either as there is furniture in the close and next door isn't in.

It's a fucking shambles and my Doctors are not going to be plased as it was me who was shouting for an earlier pain clinic appointment! Finally got one and now I can't go? Oh yes they are going to love this!

They though are going to be the least of my problems though, as this morning
I ran out of the bloody stupid Morphine I never wanted to go on in the first place! I have experienced the withdrawal that the sudden stoppage of any number of opiate based drug's brings over the years to know that what is coming next is not going to be good!

When that last dose of Morphine which I took this morning wears off tonight. On top of the MS pain that the useless Morphine doesn't even come close to touching I can expect, sweats, shivers. shakes, diarrhea and even worse muscle spasms and thats just for starters. I bloody knew this would happen! Does anybody listen to me though?

grrr I just want to scream!

Not so much for myself as I know I will do it but for Rab as he has seen what is coming before! I think Pethidine is probably about the strongest one I have come off in the past and that was a week from hell for both of us and I was only on that for a couple of weeks. I have been on Morphine for almost a month now. For the last week I have been taking 40mg a day with top ups of 3.3mg of liquid Morph almost every 4-6 hours! Oh the next 96 hours are going to be fun!


Anyone believe in or had a past life regression?
I really want to know just what exactly I did in a past life to get all the sh*t luck thats seems to be magnetically attracted to me in this one?

C x

SUNDAY'S WITH MS & CATH and Other Unaswered Questions!

Just used to pain now it drives me mad but not as quick or as mad as it is driving Rab.
He is finding it really hard to accept that there isn't any God given or human right for that matter for anyone to not be in pain and you just have to put up with it the best you can.

If there was a way to take it away I'm sure they would. I don't know why Morphine doesn't really work for me it just doesn't. The last time Rab had Morphine was after surgery and he was in another world on just 5 mgs of the stuff.

Me doesn't make me sleepy, giggly, sick (thank goodness) When I had my appendix out at 10pm the night before my 21st birthday I woke up in absolute agony at 2am and started loudly demanding that they take the effing Morphine drip out and shove it up their arses and get me a bottle of Gas and Air my surgeon was great and he did agree to a little G&A which I found out after my etopic you are not supposed to do when you've had surgery something to do with the gas they blow your abdomen up with or something but I was creating such a fuss even took out the Canula myself that he just told the nurse as he was walking away (in disgust I think) "just bloody give her the stuff" Think I had it 20 mins tops and buzzed for the nurse, told her I really needed to go to the loo, she told me she'd just go get a commode by the time she got back with it I was already half way back from the loo! She wasn't pleased as I'd got up but I just told her "I'm 21 now I can do as I please!" I got two pills I'm thinking those would have been Dihydrocodine went to bed and woke up a ten feeling fine, well not fine obviously but got up had a shower, a couple more tablets and was chirper by time my surgeon came to talk to me which wasn't till about lunch time.
Some mad mare kept him up half the night! Same mad mare who's GP had warned her that she might have an inflamed appendix the on the Friday but didn't believe him and delayed calling him back (wow do you remember those days when you phoned up out of hours and it was your own GP that came out?) out until she had finished papering the livingroom of her new flat at 8pm on the Sunday, ready for her birthday on the Monday! Well I'd got nibbles in and everything! The surgeon wasn't having any of it and said I definitely could not go home and he didn't care what day it was, though he did say my friends could take me to the hospital canteen and shop for an hour at visiting. 2 oclock and I was racing to go, went down in the lifts with my mates who came with cards and fruit instead of the Bacardi and Wine they were supposed to be bringing at 7 to mine!

So we got down to the main corridor and this being pre MS and Wheelchair minded Cath the wheels got abandoned at the lift and all my friends turned left (direction of Canteen but Cath made a B line right and they caught up with her just as she lit up her first ciggy for 16 hours and slid down the wall at the Maternity exit! That one ciggy probably did what all this useless Morphine should be doing because it blew my head off! When we got back to the ward about at 3.45, well I needed a coffee to recover from the fag and then we had to spend another 20 mins trying to find the wheelchair which someone from the mens ward had nicked he'd opened the emergancy door the one that said Do Not Open and took the chair so he could sit and have his ciggy! the cheek!
Sister was so not amused when we finally did get back to the ward to find her doing her best Hattie Jaques impression! I had to have a wound check which was actually the first time I looked at it as I was bricking it and sh*t out of peeking in the shower because my mate who brought the grapes, when she had hers out her scar looked really, really horrific! I mean really it was a huge ziggy zaggy line with large dots either side of it. Her Appendix scar looked like Frankienstein's monster's neck! All I got though was this little 4 inch neat red line with about a centimetre of dissolving stiches poking out at one end. I was well chuffed, if I'd known he was that good I'd have tried and talked him into getting rid of the jelly belly! He was a really nice doctor, he had sat and just chatted with me for the hour before they had a theatre available as he knew I was absolutely terrified of hospitals and even more terrified of getting an anesthetic (sort of came out when he asked why I had left it so long to come in)
When he came round the next morning the first thing he asked me was what did I think of my Birthday present? meaning the scar. I'd told him all about my mates scar apparently it was in there somewhere in the jumbled rant of me knowing about hospital butchers and and how I knew I was going to die! He was nice enough to wave off my apologies and say it was the premed drugs but it wasn't it was all me because I used to get like that everytime I was admitted to hospital, Still am to a degree though the doctors and nurses don't get the same ranting woman I was back then but I don't eat hospital food ever, only drink my own bottled water and the only time they have got me to sleep in a hospital is when I'm anethitised or heavily sedated. Can't help it at least I have got over my first instinct when a doctor says they are sending me to hospital which is to run. Signed myself out AMA too many times to count, tried to do it the night of my Appendix which is probably the real reason that doctor was sitting with me till about thirty minutes before they wheeled me down.
NHS 24 and my GP both tried to get me go into hospital last week but there wouldn't have been much point as they don't have a 'pain' ward lots of other wards for the admissions manager to bang her head off a wall for 5 hours trying to find me a bed, poor woman while I sit taking up one of their acute admissions beds while having no reason for an admission other than The Drugs Don't Work, They know whats wrong with me, I probably know way more about what is wrong with me that some of the Doctors I have seen. There was this one lovely young doctor on the A&E ward they day they fired me through there in an ambulance for a 3rd time in one week to get my hip xrayed, I told him he couldn't really help and he agreed and then he listened, I'm not sure if it was in disgust or astonishment really but he wanted to hear it all the same for a whole 40 minutes after his shift had ended which knowing just how many hours he works in a week at his level of qualification and how much study he has to add to those hours that he wanted to listen to me for an hour was very humbling.
It's all right there in those 2/3 huge volumes my medical notes we are onto volume 3/4 now because of those multi volumes I have 4 different unit numbers which can be very frustrating for admin staff trying to get all my notes for a clinic or even to just trying and book me an appointment! Though we are on a roll this month as we have managed to get 3 appointments on 3 seperate days, instead of 3 seperate clinics all wanting me on the same day at the same time, oh it feels to be wanted!
One of the things that has been so frustrating these last few months is this inane need I have to organise, I have hundreds of files I need to sort through and organise as the last time there was anything remotely near organisation was last August! Everytime I am at the hospital I look at those files and questions pop into my head like where is the 'missing' mystery volume? Stands to reason it exists or existed because if the 3 volumes I always see at an appointment have somehow each generated their own unit number and I have 4 unit numbers there has to be another volume. Is it in Stirling perhaps? I know they ferry case notes between the two hospitals, Infact I was told once that I was going into Stirling Royal while at an appointment at Falkirk Royal but I'd have to make my own way through there and I asked if they wanted me to take my notes which back then were a modest two volumes and was told

"No no we will send them through by taxi."

"Oh right" says I

"well can I not go through with my notes then?"

"Oh sorry you can't it's these new Data Protection rules you see"

"Ah" says I thinking I was catching on "I see you send loads of peoples notes at the same time" makes sense I wouldn't want some stranger hitching a ride with my private confidential medical file. Thinks I

"No love it'll just be yours I'll just go get that sorted now!"
and off she trots leaving a very perplexed Cath with some wonderful new questions. The main one being how the hell was I going to get to Stirling on a Sunday and what in blazes was this data protection thingy that she was yammering on about? and Why did it say that some stranger (taxi driver) could travel with my private and confidential medical file but I couldn't?

My brother ran me when he got home from work and I arrived around five hours after my files had. Can't fault the NHS for organisation can you! lmao and you know I don't like unanswered questions. Never did get an answer to that second one! for all I know that Taxi driver could of been a woman or a man who wanted to be a woman and saw her chance. Bought herself a bikini a nice pair of pumps and matching sarong and is living it up large in Rio on hundreds of fake credit cards in my name! Every bit of information you could ever need to know to steal someones identity is somewhere in your NHS medical notes. Maybe that is where missing file number 4 is in Rio with Cath it could even explain why had problems getting credit in my own name until about 8 yrs ago!

Other questions in need of answers...


Do Doctors and Nurses know that those silly plastic folders were designed to hold 300 bits of paper tops?

and if they do

Why do they keep trying to cram 3000 sheets in them?

Are the folders expensive?

Do you want me to get you a plastic file box for my notes?

And finally

where do you get those supersized elastic bands you use to stop those 3000 bits of my data from parting company from those semi precious folders? they look really useful!


Oh no wait

The NHS does know that I could carry all that info around with me on an ipod doesn't it?


yup thats about it!
see this is what 58 hours without sleep makes Caths Brain do! LMAO

Cath x

MS HUG

The very word used to describe this awful symptom of Multiple Sclerosis must be one of the cruelest ironic abuses of language ever conceived and one that is completely lost on me.
When you are given a HUG it can be for any of a great number of reasons, a demonstration of love or given in friendship or as a comfort, as a social greeting or an affectionate farewell. In all definitions and descriptions of a hug, in all cultures throughout history around the world, a hug is known as a benevolent action.

With the MS hug though there is nothing remotely kind or benevolment about it! I have never had a Boa Constrictor try to squeeze the life out of me before but I imagine the start of such an attack would feel exactly like this!
Knowing scientifically what causes it isn't much of a comfort either, (which me being me you know I could bore you to tears with what I do know! lol) suffice to say your torso is filled with lots of muscles, The Intercostal Muscles (see can't help myself). Now your Intercostal's have been in use your entire life, from the moment you let out that very first cry. They intertwine your ribcage and basically hold you together. They help you bend, stretch and most people never give them a second thought, probably the most common injury to these muscles is when you 'pull a stitch' whilst running or exercising. With MS though every one of these muscles can go into spasm at the same time,front and back and it truely does feel like being squeezed to death! I've had this symptom a few times in the last six months but today is the first day that it has affected my entire upper body, before it stopped at my lower ribs now its everywhere. The treatment for this is with a muscle relaxant. Rab is talking to the NHS 24 and because it is technically 'chest pain' I need to be seen by a Paramedic! So there is one on his way, who knows what will happen now! Roll on November, the quicker I get to the pain clinic the better!

Cath x

MORPHINE! A PAINKILLER! THAT'S A JOKE RIGHT?

The pain I am in is bad! It's really bad at the moment and has been for weeks. I can not even describe it to anyone as I just don't have the words. Anyone who knows me will know it is thatif I can't find the words! Then it really is bad!

Over the last week I have been on what they call MSG Morphine 10mg 2 x 12 hourly. It is a slow release form of the drug, in theory should be in my system working constantly but if being in as much pain if not more than I was before, sleeping less than I was before (and what would you know I do still function on less than my usual 3 or 4 hours a night!) is classed as 'working' as suppose it could be hailed a success!
When talking to my GP on the phone on Friday she told me to keep taking it and maybe when I start to take the anti deppressants I am due to start tomorrow the Morphine might start working! Wondering how that will work? Will I still be in pain but just not care that I am?

I am depressed there isn't any doubt about that, I was the one that told them I am depressed! Having only been able to leave this house less than 40 times since September 10th last year and over half of those outings have involved visits to my Dentist or hospital! That and not being able to use my toilet or bathe and wash properly since then how could I not be depressed? When friends or people visit I'm not depressed, I am still in pain but I am cheery!
My shower room and adapted toilet is supposed to start going in tomorrow, though given the visits from the 3 lovely workmen who came out last week all scratching their heads at what they have been told is to get done and how that differs from what I was told and shown years ago and what even they can clearly see needs to be done it really isn't looking good that it is going to happen! Knowing Falkirk council and the bureaucracy that prevails throughout not only theirs but every other local government organization in the UK and perhaps the world? I can even see this stopping the installation of the ramp thats supposed to be going in within the next 3 weeks!

Have I really, really got that cynical? How did that happen?

Hubby yesterday got so fed up with my being in pain that he did what he thought was best and phoned the NHS 24, spoke to a Doctor who agreed that I should not be and shouldn't have to be in pain until I go to the pain clinic in November and gave me a prescription for, wait for it, more bleeding Morphine! Not your slow release stuff just plain old useless Morphine, 10mg tablets 4 x a day! I am to take them on top of the slow release ones (my GP is going to love that) and they will help, the doctor suggested that I could get a higher dose of the MSG until the pain clinic. (I just know what my own GP is going to think of that idea!)
I have only taken the third of the 12 pills that Rab got yesterday about an hour ago and at no time has my pain level reduced and it has taken a lot of coaxing just to get me to take those! Partly because I KNOW they are not going to work but also because (and this is the bit that scares me) I also know this crap is highly addictive! Am I going to end up being an addict to a drug that doesn't even work?
I guarantee you that if you could see me right now at no time would you think I have had 30mg of Morphine today! (remember 10mg of that lasts till 12am tonight!) My pupils are still normal and reactive, I am not sleepy or drowsy (if only! because I am shattered) I don't feel sick and can still go to the loo, you may think my puntuation and grammer is a little shoddy but let me assure you it is always like that, not through reduced mental capacity though! (it's just sheer laziness on my part! lol) It's ok though you wouldn't be alone because a hospital Doctor I saw once went to give me 10mg of IV morphine not realising I'd already had 10mg an hour and a half before he had spent 30 mins talking to me and I had got up and walked to the loo and back to get him his urine sample. I think I taught a Doctor that day! That really reading and not just skimming notes was so the way to go! (see there is good that comes from MS pain!)

I just wish to hell I could get my head around a way to cope with this kind of level of pain, it is nerve pain, muscular pain, spasm pain and even skeletal/joint pain! So there isn't a magic bullet of a drug out there thats going to work. I already knew that, I always have! So now there are some really difficult decisions coming up.
Most of what the pain clinic is going to offer me are going to be long term drug options and a lot of those come at a cost. Gabapentin/Neurontin if your American is a drug that I know will hit the nerve pain on its head like a sledgehammer but for me the price of that will be my eyesight! Two years ago an Ophamologist was willing to register me as practically blind. Suddenly having to stop taking the drug due to an unplanned pregnancy which sadly was not meant to be,
and within weeks it was clear the reason I could not see was nothing to do with my MS!
Then there is the spasms/muscle pain, Diazepam a drug that I do tollerate well is a short term use only drug because it is one that is not only addictive but one that is tolerance building drug which means that there would come a time that the 5mg doses that I have taken on and off over the last 3 months would eventually require increasing doses to still be effective. On the plus side for me is of the 7 day 4 x daily Diazepam courses that I have been prescribed, I have only ever took them as and when required so I don't think there was a week where I'd actually used them all. I do know that as a long term treatment the risk of addiction will automatically rule it out though.
The 'better' muscle relaxant options that are recommended as the standards for in MS treatment like Baclofen did work on my back and my legs. However while it did that quite effectvely it closed my bowel down, I don't mean it constipated me, which is what both I and my doctors thought at the time, I mean closed it down entirely! 38 sachets of Movacol, who knows how many Senna tablets and it took 19 days to go! (Rab gets that a bit muddled up and says it was 19 sachets and a few of weeks) By day 14 though I had to stop eating and almost everytime I drank something I threw most of it back up within 15 mins. The reason it happened is pretty simple really, It is a powerful muscle relaxant! It has its plus points it isn't addictive and it will still work regardless of how long you take it. What some of those who misadvised me first with the dosage and then the advice to 'just stick with it' seemed to forget was the Muscle Relaxant bit! The body has many muscles, the ones in my Arms, Back and Legs that my MS is pretty badly affecting and they are important ones and anyone who has pulled one anyone of them will know how painful they can get! They are powerful muscle groups but in terms of their importance in the funtioning of a human body they are by no means the most useful muscles or important ones your body has, The Heart and your Bowel are ones you really don't want relaxing! Sadly muscle relaxants don't pick and choose which ones they work on! The other one which that was prescribed, I only ever took one of because of the reaction I had to it, perhaps the head spinning, heart racing, out of my face feeling, nausea and the six or eight hours of memory loss it caused is the reason I can't even recall the name of that drug!
So I am thinking that there really won't be any answer to my MS pain. I started writing this last night and still have not slept, I have been posting elsewhere on the net and I got up and put a couple of dvds on. Spent some time talking to my wee man who is back to school today and who we won't see till after school tomorrow as he is off to respite today. I've took my 4th morphine tablet while watching breakfast news and admit to having an unkind thought when the 'Care Not Killing' representative was discussing the Director of Public Prosecutions new cop out guidelines in the aftermath of the Debbie Purdy case! So those assisting a suicide of a relative will be unlikely to be prosecuted unless they benefit finiancially! mmm interesting point, what will be considered as a qualifying financial benefit I wonder? Now I sit and await the council to see if they will prove me wrong and give me a bathroom with a loo I can actually use! Not going to hold my breath though because as bad as the pain is I don't want to die, well not this day anyway! That's the Klingon in me!
Today is not a good day to die!

(and there was me telling someone the other night I couldn't write anymore as I had lost the words and I haven't shut up all weekend since then pmsl!)

Cath x

Pubs and Clubbing for the young disabled, it's what they want/need! Is it?

A discussion started by a member on one of my favourite forums, which is raisingkids.co.uk by the way has finally started me thinking again, real long and pitiful story about my lack of thinking thats for another long and boring blog I think!
http://www.sthelensstar.co.uk/news/4625529.Club_night_launched_for_youngsters/#commentsform


I have been up all night considering the idea that young disabled people regardless of what their disability is want to have their own pubs and clubs and the reasoning that there are a lot of people out there who think this is a great idea! Now I can not comment on the volunteer who has started this particular 'disabled club night' or how poorly his area is for catering for the needs of any disabled persons ability to socialise like the non disabled. I am sure he is a great bloke, most volunteers I know are, hell I used to volunteer quite a bit myself and some used to think of me as a great person, was about to write bloke there! lol I've changed a lot though and as a human being I am thinking probably a lot for the worse and I don't think I like the new me. Why can I no longer see an act of charity as being just that? Why am I starting to think that Charities especially ones for the disabled are a bad thing? I have argued on the Ouch site on the side of the charities before and none of the radicalised arguements have swayed me, so why has one guy wanting disabled people to be able to go out and have a good time got me?

Once again it feels like it is being left to charities, organisations who are making sure that these young people are always seen as vulnerable wherever they go, instead of pushing for proper support that could see many of these young adults lead full and integrated lives. They get half hearted schemes aimed at segregating them further from the society that really needs to take a long hard look at themselves and realise that those people who are as you describe of sound mind but are perhaps differently abled physically are not requesting this, they want to do what they have as much right as anyone else to do, they are fed up being excluded especially when there is already Law in place that should be being enforced to ensure those rights. It is like a charity saying 'well you should have this, you are entitled to it but because the statute law on this is about as much use as toilet paper really and those that wrote it really can't be arsed enforcing it unless they see an opportunity to make some money from the fines they collect from those who do breach it, this will have to do, it's not much but it's all your are getting! Take it or leave it!

If the changes being considered under the current review of the Green Paper regarding benefits for the disabled mainly to carers allowance, care component of DLA and Attendance Allowance were to ever put into practice ie take the money from the disabled person and give it to Local Authorities then we really would see change.
Where the curent benefits make no distinction between needing help and actually getting that help so can pay a pittance to the disabled and their carers. Councils won't be allowed to do that and will have to start paying for actual care. In my case for example, instead of paying Rab £53.10 pw and me £47.10 pw (I would be entitled to the higher rate because of how bad things are now but you know what I really can't be arsed claiming it!)
So who is my council going to pay £100 pw for the 24 hour care I need at the moment, may need for years? Bear in mind that health and safety means I would need 2 qualified and trained and police checked. Many conditions like mine are very variable and the type of help they can change from hour to hour! If they do rehash the care components of disibility benefits in the way they are thinking. Care for people with disibilities, firstly would quadruple everyones council tax overnight and bankrupt every local health authority in a day!
We have heard the arguments of people who say "well if you need that kind of help you should be in hospital or home anyway!"
The pain I'm in at the moment despite the useless morphine I'm on, I could perhaps be in trouble arguing on that one this morning! At the end of the day absolutely no one has a right to not be in pain, whether they are disabled or not! I have absolutely no acute medical need for a hospital bed, so that leaves the 'care home' option and they really are having a laugh with that one aren't they? We don't even have enough care places for our elderly which is why they get to be known as 'bed blockers' in their old age, left to rot in hospital wards so understaffed that recent studies and a lot of old studies for that matter show that a large amount of those poor people get left to lie in pain, in their own waste and many end up suffering from preventable but potentially life threatening infections and even malnutrition!

To be able to put every disabled person who requires any level of care into a home, we would need to be thinking along the lines of rebuilding the massive institutions of yesteryear! Wow and won't that do wonders for the rights of not just the disabled but for everyone in the country. Might be a little in conflict with Articles 1, 2, 5 and 8 of the EHRA but who'll care about human rights when we can look at it and say "well at least we will be saving all us tax payers that ' potential' £3658.20 that every disabled person gets a year towards the cost of their care and the bleeding hearts that don't like it (or do but are too ashamed to admit it) well they can start or join the charities or groups that ease their consciences and make the world see just how much we do care by all the nice things we are willing to do for them, like giving them their own pubs for instance!"

You will notice that I use the term 'we' there because I, who am still a taxpayer myself and does give, has joined and fundraised for these groups now considers and accepts that I myself is and always has been a part of the problem.

Charity is what lets governments, society and the whole world get away with not doing what we should be, not just for the disabled but for everyone everywhere! I doubt that we will ever change though so like everyone else I just have to make like Tesco's and say "every little helps!" and be grateful that the vast majority of people in this country will have absolutely not a clue what I am talking about until many, many years into their personal futures after hopefully having lived very long, healthy and happy lives!

Cath x

Education, what did I learn?

The drastic change in my MS has had me living in retrospect the last few months and one of the things that has preoccupied my thoughts a lot is my level of education. Think the highest I have tested on an IQ test was 146. Though truth be told I can't even get past 123 and certainly no where near my usual 127 at the moment!
Thats really sad isn't it? When I am not really interested and couldn't care if my last MRI scan will show if my legs will ever work again (which the won't!) only worried if I am going to get dumber! lol

I am thinking of my school days, those nightmare mornings full of fear of bullies and teachers who couldn't give a shit and don't get me wrong there were many, many teachers there that I liked and respected. I just didn't have many of them! I did have Mr Williams for Modern Studies, who inspired a love of politics that remains with me to this day, The late Mr Conlan, RE and SVS (social and vocational skills) I was heart broken when I heard he had passed away the year after I left school, he was a brilliant teacher. Mr Barnett, English, what a pity I didn't get him until my 3rd year of high school, I have a feeling he would like to know I still read and be really pleased that I still have all the Shakespeare play books that I rescued from the bin at the end of that term! (that gave the bullies a new taunt for fourth year. 'Bucket Raker' How imaginative) see I even inspired independant thought back then! Finally Mr Mowat and Mr Melville. I still can't play an instrument or sing to save myself but I do love music Mr Mowat!
I know Mr Melville that we had our differences and although you only took our Latin class for a short time I recently amazed myself at exactly how much of it I actually do remember! (a lot more Latin than French if thats any consolation!) If there was just one subject that I could go back in time to take again it would be your Latin class!

I still write, though not as much as I should. Blame the MS, blame life, blame me.
I have been looking through some of the writing I have done in the last 25 years or so, A lot of it is missing (well coal fires needed something to burn when there was no money for coal when the girls were babies!)
Looking through my musings and scrawlings I did about school back then, which was lets face it were not the best years of my life. I found two that fit really well. I want to put the first one that I wrote in 1990 but it is so full of an anger and immaturity that I think would offend and insult the five great teachers that I have paid tribute to in this blog. So I will go with this one I wrote in 1999.

LESSONS

History taught me
That no solution is final
Geography showed me
That not all men are equal
Mathematics told me
That I would not be an accountant
Science truely informed me
That Physics holds both wonder and Horrors
English inspired me
To tell you this
That is All

Cath x

BAD NEWS - GOOD NEWS - BAD NEWS AGAIN!

Well aint that always the way of it!



Bad news - Your legs aren't really going to get better the MS is all down hill from here on in. It is no longer Relapse/Remitting it is now Secondary Progressive you will need to keep the wheelchair but you should get more help now your not being a 'malingerer'



Me - Yay! like I haven't been trying to tell you all that from last October!

Won't hold my breath for that help though! The last five years has taught me it isn't coming!

My council, who we rent our house from doesn't believe in help because things will always get worse! So the disabled access toilet and washing facillities I was supposed to get five years ago are still not here, they just fobbed us off year in year out saying that they were looking for a house that WE KNEW didn't even exist. If we knew it how can they say that they didn't know it? Not saying that having a showeroom or a more accessable loo would have made our lives perfect for those years but it would have made everyone in this house's life a damn site easier! No they just kept hoping to hang on long enough till my then 13 and 14 year old daughters would be old enough to force out of school and chuck out at 16. Girls didn't want to leave school or home but at 19 and 17 that is exactly what they have had to do. They hung on as long as they could but in the end they just had to go! The oldest does what she terms 'sofa surfing' as she maintains that since she lost the job she got after leaving school at 17 she can't afford a house and they did offer her one when she was still at school but she is at college now hoping to continue that and point blank refuses to claim benefits.

The 17 year old is a mum herself now but right through her pregnancy she stayed on at school and went back after the birth, as MS got worse here though she really couldn't stay on though and had to leave in November. She was hoping to go to college and get her highers this year so she could pursue a Degree in History which she one day hoped to teach! She can't do that now she has a third floor flat and a daughter to keep. The third one she was offered (two while at school) We still feed both of them, one has no money and the other hasn't yet got a cooker!

As I said it has been a sort of 'suffer now until you are suffering a whole lot more!' kind of policy and they are in no hurry to change that.

Months on from getting the wheelchair, I still can't leave the house. I have even been told that I am Wheelchair bound by someone who could change that!
Now if he had said housebound I could have let him off because technically as they wont give me the ramps I need to get out of the house I am housebound!

But wheelchair bound?
No one ties me to the thing! Perhaps I am missing out on some kinky wheelchair frolics or something! (should really look into that!)

It is like being called an MS sufferer. No one gets to decide if I am suffering, except me! There have been and still are times that I have been but not as much as my poor family have and still do thanks to Falkirk Council!

I might be 'disabled' but I don't think I think of disability the same as everyone else seems to because simply I do not think I am Disabled. Un-enabled maybe but not disabled!

I am in a wheelchair, I sleep on a very uncomfortable sofa and I have just about crippled my poor hubby having the 4 baths he has lifted me in and out of since last December!
The most disabling thing for me in that time though has been the 6 weeks I had to do without my computer thanks to viruses!

I was sure I had good news somewhere, haven't won the lottery, council seem determined to end a very strong and loving marriage, by killing my husband! Not enough that he has had to give up a working life of almost 34 years and the two jobs he had from injury and ill health caused by his caring. Having to help me do things I could do quite easily by myself. They want make him Scotlands first MS 'SUFFERER' that doesn't even have the disease!
Seems everyone else in Europe has a right to a family life and privacy except for us!

Oh I know what our good news was! We have got our Autistic 5 year old into a great school and the respite care we asked for last May might actually happen in July/August. The potential carers seem lovely and very experienced.
Anyone who knows anyone with an ASD child will know that routine is really an essential, A Paeditrician confirmed on the 21st that the breaking of his routines that have been caused by not being cared for at night by his night time carer (which is me!) and the stress in this house is having a detrimental effect on his Disability. He and his brother are lucky though they can now get legal help now as they are most definitely being Discriminated against by Association!

whew five weeks of writing but this blog is done, wouldn't say dusted yet but its definitely done!

Cath x

A Girl Who Liked the Footie!

After I got MS I thought I could just go back to work, like nothing happened. I was fine! Well as my mum would say


"you know what thought did?"


I had a great career stewarding at football matches, OK not something that challenged my brain greatly but a job I loved and took very seriously all the same. I remembered the haunting images from my younger days as an armchair wrestling, football fan. Other girls got up early to watch Tiswas or Going live on a Saturday morning, I stayed in bed until it was time to watch Saint and Greavsy,Dickie Davis and of course Big Daddy and Giant Haystacks squaring up to each other! I loved my job at Brockville it was when I stopped being a football fan and worked to make sure other fans were safe. I read the Taylor and Popplewell reports. A bit much for a job were I was paid just £15 quid a shift! I didn't have to but I have this thing about knowing everything about anything I do.
I was haunted by Friday night nightmares about Crushes and the wooden stand I used to sit in burning. Knowing that there was only a 4 minute window where they had to stop the Bradford City Stadium fire is what kept my arse glued to that seat in the library studying what mistakes had been made before but never learned from. I have many distinct memories of those Saturdays sitting in front of the box watching the footie while waiting for those magic 8 score draws that were going to change all our lives. Two of the worst of those memories are watching that stand at Brafford burning and the people running around the pitch while on fire. The other was screaming "let them fucking out" as caged football fans were squashed against that blue fence. It was one of the few times I swore infront of my dad and escaped a clip around the ear!



I used to have a really good time working at the Falkirk FC stadium at Hope street and found I could joke with all my teams opponents on the day but at the end of the day I was in charge of my section and I soon learned how to make 100 men to do exactly what I said! I didn't leave them in any doubt that their lives could depend on it.
I admit it took some great mental discipline not to turn around when I knew the Bairns were coming up on goal but I did it. I wore a massive yellow jacket over the top of my shirt and a tie that I had borowed from dad. I worked for 6 years at that job. When I didn't trust my eyes anymore though I knew that I had to give it up.


After the stewarding came car cleaning. I wasn't as good at that but I always gave the job my best. I did try selling Ann Summers for a bit but selling naughty knickers and vibrators although great fun really only makes money if you can drive.



My next job was on the checkouts at Tescos and they were a great employer and very disability aware, they made reasonable allowances for the MS but in the end after just a couple of years I had to retire on medical grounds. Which meant I could get my pension paid out in full and keep my discount card, retired at 28 what can I say? my dad always told me I would retire young, though I suspect he thought it would be when I had made my first million! I never planned on not having qualifications. Oh I had definite plans, as an 11 year old! I wanted to be a vet but then I found out I might have to shoot horses so I put that idea down. Then I considered Politics, Law and Journalism. I used to go quite often to my local councillors house after school and keep him on his doorstep debating all manner of issues, usually while his dinner got cold! I liked him.The late Mr Ian Davidson a labour councillor who had a keen intellect and really beautiful handwriting. He also had the patience of a saint when it came to the 12 year old who wanted to save the whales, stop animal testing and to ban the bomb! I can't help thinking that he would be spinning in his grave if he could see what the party he gave his life to had turned into today. He granted my request to show me and my entire modern studies class around our local councils chambers. A trip I thoroughly enjoyed and although it made me very popular with the modern studies teacher Mr Williams I can't say that the rest of the class was all that thriled with me but thats another blog entirely!





Councillor Davidson gave me a piece of advice I have never forgotten, He said " Cath I might not agree with you, I might not like what you have to say but as your duly elected local goverment official I damn well have to listen to it!"

You have Pain, Where is your Shame? MS from Scotland!

As much as I have learned and grown in the last fourteen years, it still stuns me sometimes just how little those that are paid to understand and defend the Disability issues that are of special interest to myself and my family, frequently fail to learn or grow!
I dont suppose it should come as a shock after all these years because I was once just the same as the people that I am often so scathing in my numerous verbal onslaughts.

I represent everything they secretly fear. A person who used to be 'normal' just like them. Who went to work one day and came home half blind. Was I in an accident? Was I attacked? Well in a way, I suppose you could describe it as an attack and my own body was the assailant.

I sometimes try to imagine what I must have looked like sitting there in that hospital room that September Sunday all those years ago, wondering why the hell I could only see in black, white and grey. I must admit that if I really could go back and observe that happy go lucky, newly wed with so much going for her, that the person I am now would judge the person I was then as weak, a pathetic figure, who was an arrogant and ignorant figure. She sat there so worried sick with fear and terrified by what she couldn't possibly have understood. As the still nameless attacker changed its tactics and reduced her sight to only a negative! Remember back to the days before the digital doors were flung wide, you could look at the negatives of yourself. The parties, the friends, the pictures of some of the happiest and carefree days of your life!
It is not as much fun when you are not holding a strip of film up to the light to isolate a memory or moment forever caught in time. When you no longer see the light because it has turned dark and the only clue to tell you it is a light you are looking at is the halo of light that surrounds the darklight. If you could only see the world in negative shades of grey, do you think it would be as wonderous?
It did not matter in the end because just 3 hours later that day the mystery turned the negatives off and turned on the darkness.
They tested my eye with all the tests and instruments they had but my eye was fine, perfect in every way, yet my pupil could no longer react to light. I was sent home by the young, inexperienced, I suppose trainee opthamologist, with his last words to me ringing in my ears "There is nothing wrong with your eye. There must be something wrong in your brain!" Perhaps not the best thing to say to a young and inexperienced mother and bride whose much loved grandmother had missed her wedding day by just six weeks a few months earlier that year. The something that had been wrong in her brain had turned out to be an attacker just as evil in its nature as the mystery that had brought the darkness to me and there was nothing they could do about the multiple malignent tumours they had found. Gran was supposed to have just a few months but even bringing our wedding forward by six months we couldn't beat the cancer. She passed peacefully at home just three weeks after we had rearranged the day so she could be at one of the happiest days of my life. A day that was predestined to be tinged with sadness and grief because of 'something' in the brain! So it is of little suprise that I had self diagnosed myself as having an evil brain tumour and my theory seemed to hold up well, when a couple of days later my left arm and leg went weak. Which was a major pain as my husband was in hospital himself that day having a pre booked major surgery, After which he was supposed to be on bed rest
The day after his operation was when my limbs also became painful and numb at the same time. Which is a concept that many find difficult to accept and it is difficult to articulate it. The only way I can think to descibe it would be to liken it to those times you would sit kneeling on your legs too long as a child to listen to an exciting story or watch your favourite cartoon and when you finally did stand up your legs were numb but you start to have that painful pins and needles sensation that arrives as the blood rushes back into your lower legs and feet.

Then eight days after the eye tests and start of the darkness a medical secretary was sitting at her desk typing up medical discharge letters to be sent to patients General Practioners. She thought it a bit strange that when she opened my file there was nothing to type and no appointments or refferals to make. She asked the Senior Consultant what she should type and thats when the phonecalls began. First he phoned my doctor and he then phoned me telling me I had to go back to the hospital which wasn't even in my hometown right away. As any mother with two young kids, one at nursery and one in their first year at primary school will know that it isn't aways easy to just drop everything at the behest of a phonecall.
I had no one to collect the girls from school. I couldn't do it and my husband who had talked his surgeon into letting him come home on the understanding his recovery would be six weeks of bedrest with only trips to the bathroom allowed. Strange recovery orders I know but if I described in detail exactly what his surgery had entailed any man reading this would visibly wince and cross their legs in terror! Most women think that a man could never understand the pain of childbirth. I however am married to a man who endured more pain than I ever did giving birth to our sons. Two beautiful and amazing boys whose births would never have been possible if it hadn't been for a brilliant surgeon, who agreed to attempt a vasectomy reversal at the same time as he was doing a much more difficult and major operation my husband needed.
The neighbour who dropped the girls off at school that morning could not collect them because of a family emergency of her own. So I had a doctor phoning every half an hour telling me to get to hospital, a school worried about who would pick up two young girls and then the consultants secretary joined in. Explaining a mistake had been made and I should have been admitted the previous Sunday and I needed to come in. In desperation I phoned the Social Services and asked for help. The sent a duty worker to the house, she was there when my GP phoned again. We explained the surgeons orders to my husband. "Can your parents get them?" she asked. I explained that they could not because both my parents had serious health problems of their own my dad was registered disabled and was cared for by my mum who herself had just started to notice problems with her knee. Though it took many more years before she was diagnosed with the arthritis that cripples her today. She only has another ten years to wait and she will be old enough for the complete knee replacement she so desperately needs. So this social worker said she would organise someone to pick the girls up. Why is all this relevant to my story you ask? Well I did eventually agree to go into hospital after I was assured that the girls would be fine and picked up and taken to and from school for the duration of the treatment I needed, which was three days of IV steroids. The reason for my blindness was a condition called Retrobulbaropticalnueritis. Which is simply the term they use to explain a swelling of the optic nerve behind the eye itself. So off I went and after the same young doctor that had discharged me the previous week had harpooned just about every vein in both hands, wrists and arms before he sent for an anesthetist who finally got a vein that didn't collapse using a needle that he had to send to Paediatrics for I started my steroids. I had no visitors that night or the next day but my sight had started to return on the second day. As the ward had opened for everyone elses visitors there appeared three familar faces my two girls and my hubby!

I was furious at my husband for taking the risk of bursting his stitches by disobeying his surgeons orders and walking about. Which was when I found out that thirty minutes after the ambulance had left to take me to hospital, the social worker had knocked on my parents door and told them they would have to pick up the girls from school. My parents explained to her why they couldn't but she pointed to the car that was parked in their front garden and said they had a car so they had to. If she had given them even a minute before she about turned and got into her own car and drove off they could perhaps have explained that the reason my dads old clapped in Maestro car was in the garden was because its brakes had failed the MOT just 3 weeks before then and not having the cash to get it fixed right away my dad had cancelled the insurance on the car and not renewed the road tax!
My dad left his house at 1.50pm and walked the mile to the school and only just arrived at the school before the bell at 3.15pm. He couldn't do it the second day and that is why my husband got out of his bed and did it himself and brought the girls through to the hospital to visit me that night. I discharged myself from the hospital Against Medical Advice and with a ten day course of oral steroids. My vision never returned completely to what it was before, Colours had changed and it was still blurred. If I closed my right eye and looked at a piece of white paper on a light coloured wall the paper would just disapear. Reds became pink, yellow became cream and blues were apple green. Something I didn't understand for many years was how I could see a friend walking towards me when they were some distance away but then the next moment they would be right infront of me. It is something to do with how eyes and brains work normally.

Two eyes see two slightly different views of the same thing but our brains, those wonderful and fascinatingly clever organic circuit boards for the machine that is the human body, blends the two seperate images together to form what we actually see. However when two eyes, see two seperate pictures that are vastly different from each other the brain sometimes disregards one image all together. Which is where your brain plays tricks, it sometimes disregards the wrong image which is why someone you didn't see suddenly appears. Or someone you did see just a moment before vanishes. It was very strange at first but I have got used to it and I think with time the brain learns new ways of dealing with the information my eyes sends it. The only time it is a worry is when I am crossing a road!
I will never know if the reason for damage to my sight that remained after that first attack was because of the delay of a week in starting the IV treatment or because I stopped the treatment a day early.
One thing I do know for sure is that was to be the first time of many that the Social Services department would let us down!