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
Sunday, 27 September 2009
Sunday, 20 September 2009
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
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
Wednesday, 16 September 2009
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
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
Wednesday, 24 June 2009
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
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
Monday, 1 June 2009
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
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
Tuesday, 21 April 2009
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 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!"
Monday, 20 April 2009
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!
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!
Subscribe to:
Posts (Atom)
