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
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