I just heard back from Tim Wheeler (Ash), who dropped the exciting news that whilst hanging with "We are Scientists" last week he mentioned his involvement with my project and they have all decided to do an Ash/We Are Scientists collaboration ....which is SUPER exciting!!!
If you are as excited as me to hear their interpretation of the song Tim signed off the email with the following...
"Got the song and it's great, I did a guide track on Friday and Andy who used to be in Razorlight who drums for We Are Scientists is going to do some drums in London this week (fingers crossed!)"
Whilst sitting in the March sunshine it has finally occured to me that I can make a real difference raising awareness and just as important money for a disease which my family and I struggle so greatly with... And I am so incredibly lucky that such amazing artists, artists I have listened to and loved for a long time are being so generous and amazing by getting involved..
So keep your eyes and ears in my direction, you will hear the Song on this very blog as soon as I received..
over and out.. Interweb!!
-Robert
Monday, 7 March 2011
Friday, 4 March 2011
The needle and the damage done.....
I figure today is a good day to actually write an insight into what life is like living with Muliple Sclerosis..
Friday as a day is celebrated by millions, no more work, no more hanging around with colleagues who you spend more time with than your actual family and friends.. Although I am completely with you on this, Friday is also a day I fear, a day I start dreading all over again from as early as Sunday morning.
The reason - every Friday night since March 2006 I take my injection treatment for MS (Avonex - Interferon beta-1a (also interferon beta-1-alpha)) Statistically you are not given the greatest of percentages, Interferons have been shown to have about a 18-38% reduction in the rate of MS relapses, but at 31 yrs old with a young family and having a disease which is unpredictable, likely to leave you wilting in a wheelchair or worse you will end up taking any percentage over 1% with both hands...
The Injection - Well, first comes the ritual. To help me actually sit down and take the injection I first need to get my wife, although I happily injected myself for 2 years I now have complete needle phobia. Even the smallest sight or reference to a needle on TV and im in panic mode.. Secondly I choose a different vinyl each week to put on and listen whilst my wife is preparing the 2" weapon, I find it much easier to drift away and to try and forget what is about to happen. The songs I choose all have to be slow and atmospheric, I tried to settle down once to "sultans of swing - dire straits" NO CHANCE.. The songs of choice are normally Sigur Ros, Iron and wine, LOW, Papa M or Marissa Nadler...
The side - effects - Don't be fooled by the helpful marketing leaflet in which it states "symptoms may include flu-like symptoms" SWEET LORD...... As soon as the 2" needle pierces the skin I feel the rush of a poisonous substance coursing through my blood network.. This is clearly all in the head, but in the head or not, if you feel it, you feel it..... Next comes the calm before "hurricane avonex" ...I normally get a 2 hour window of nothing, sweet nothing... but like an unexpecting attack by a gang of roughians, the side effects will then hit me like a sledgehammer.. I try to sleep through the onslaught with painkillers and a sleeping tablet, this always works until the 5am wake-up, and it always seems to be around 5am. I wake feeling like ive been run over by a car, shaking, freezing, convulsing, every part of my body aching. The way to best describe is that im paralysed with pain, I can see the glass of water and painkillers less than a foot from my face, but I cannot reach out to get them. It is at this point I feebly call out for Megan to wake up and feed me water and painkillers.. I cannot even hold a glass of water in my hands and my fingers are so painfull I cannot wrap them around the glass.. These side-effects normally last until late Saturday with me bumbling around the house in a dark cloud with a walking stick, then by Sunday morning I feel normal again, just in time to start thinking about going back to work the next day... Brilliant!! I do wonder sometimes whether the injection is actually worse than the disease, but then I lose the use of part of my body in which seems a way of teaching me a lesson and shut up moaning...
There is a pill that has been extensively trialed which would removed the need of the injection, but it looks like it will not be given license in the UK anytime soon... So with that in mind Im going to link one of my favourite "Sad Bastard" songs to represent my mood this Friday morning...
Friday as a day is celebrated by millions, no more work, no more hanging around with colleagues who you spend more time with than your actual family and friends.. Although I am completely with you on this, Friday is also a day I fear, a day I start dreading all over again from as early as Sunday morning.
The reason - every Friday night since March 2006 I take my injection treatment for MS (Avonex - Interferon beta-1a (also interferon beta-1-alpha)) Statistically you are not given the greatest of percentages, Interferons have been shown to have about a 18-38% reduction in the rate of MS relapses, but at 31 yrs old with a young family and having a disease which is unpredictable, likely to leave you wilting in a wheelchair or worse you will end up taking any percentage over 1% with both hands...
The Injection - Well, first comes the ritual. To help me actually sit down and take the injection I first need to get my wife, although I happily injected myself for 2 years I now have complete needle phobia. Even the smallest sight or reference to a needle on TV and im in panic mode.. Secondly I choose a different vinyl each week to put on and listen whilst my wife is preparing the 2" weapon, I find it much easier to drift away and to try and forget what is about to happen. The songs I choose all have to be slow and atmospheric, I tried to settle down once to "sultans of swing - dire straits" NO CHANCE.. The songs of choice are normally Sigur Ros, Iron and wine, LOW, Papa M or Marissa Nadler...
The side - effects - Don't be fooled by the helpful marketing leaflet in which it states "symptoms may include flu-like symptoms" SWEET LORD...... As soon as the 2" needle pierces the skin I feel the rush of a poisonous substance coursing through my blood network.. This is clearly all in the head, but in the head or not, if you feel it, you feel it..... Next comes the calm before "hurricane avonex" ...I normally get a 2 hour window of nothing, sweet nothing... but like an unexpecting attack by a gang of roughians, the side effects will then hit me like a sledgehammer.. I try to sleep through the onslaught with painkillers and a sleeping tablet, this always works until the 5am wake-up, and it always seems to be around 5am. I wake feeling like ive been run over by a car, shaking, freezing, convulsing, every part of my body aching. The way to best describe is that im paralysed with pain, I can see the glass of water and painkillers less than a foot from my face, but I cannot reach out to get them. It is at this point I feebly call out for Megan to wake up and feed me water and painkillers.. I cannot even hold a glass of water in my hands and my fingers are so painfull I cannot wrap them around the glass.. These side-effects normally last until late Saturday with me bumbling around the house in a dark cloud with a walking stick, then by Sunday morning I feel normal again, just in time to start thinking about going back to work the next day... Brilliant!! I do wonder sometimes whether the injection is actually worse than the disease, but then I lose the use of part of my body in which seems a way of teaching me a lesson and shut up moaning...
There is a pill that has been extensively trialed which would removed the need of the injection, but it looks like it will not be given license in the UK anytime soon... So with that in mind Im going to link one of my favourite "Sad Bastard" songs to represent my mood this Friday morning...
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