Don't know where to start with this, I'm hoping that if I just start typing then everything that I want to get off my mind will just jump out.
So the headaches and the fatigue and the slowness, inability to do things or my mind to function properly is getting worse. It is such a struggle for my mind to even piece these words together, it has taken me ten times the amount of time it should of done to type what I have so far typed, why is this happening to me? I feel so pathetic asking that question but I'm getting to the point now were I just feel so out of control, so lost, so weak and I have no were to turn, no one to ask for help. My brain is just shutting down as it has been starved of use, I no longer need a brain and it has decided to just stop working properley. I wish I could hibernate until I have my lumbar puncture and also get my scan results. I think that is what my brain has decided to do, just not work until after these things. I have alot of things that are going to put in place to help me however there not here right now in the present, there in the future and im struggling to fill the time up until these things.
I have had 3 of the worst nights sleep on the trot and there isn't nothing I can do about that. At doctors they just say that sleeping pills are addictive so wont give me them. I'm back to feeling like I am just an inaminate object, I just exist, I am basicly just a chair. I don't do anything that would represent any form of living, any form of human life. Im fed up of acting, I never just be how I actually feel. I act for other people and I also do it for myself to try and ignite some life back into me but it never works. I can't just be how I really feel as people will just tell me to stop complaining and that theres nothing wrong with me or to 'just get on with it'. Well what exactly is 'it'? what exactly am I supposed to be getting on with?
I don't know what I actually want to happen, what do I want to change. Well I suppose I want my physical health to improve and then hope that everyhting else follows. I want to have some energy back, I want to feel enthusiastic, motivated to do things, to have something to focus on and also to have some things that I actually WANT. I, at the minute, don't want to do anything, I have nothing that I see as something that I want to do. It's not like there isn't things that I CAN do. I mean I could do my counselling course, I could edit my book, I could play on a game or watch TV but I don't actually feel like doing any of these things. All I WANT is to have my lumbar puncture, to get my scan results, to have my pain clinic appointment, to have the meeting with the ESA adviser and see if there are any courses or any jobs out there that I can do with my condition (although I already know that is a big fat NO).
I want to feel alive again, I want to do things that excite me, take part in things, do things for a reason and feel normal and be normal, not act normal when deep down its not true.
Being tired/fatigued is the final nail in the coffin to chronic pain, its the final thing that has destroyed my spirit, it makes standing up and fighting chronic pain pretty much impossible. I guess what I want most right now is to have some energy to try rebuild my spirit and to recharge the part of me that was starting to fight this and the part of me that was beginning to accept this new life and cope with chronic pain. Solar panels cannot work to power anything without sunlight and I am just the same, we all are, we cannot work without energy, there is darkness all around me and I need some sunlight to recharge and start fighting again, to make me actually function at all so I am not just an inaminate object merely existing.
Grrr, moan moan moan, blah blah blah, pathetic and weak depressed man speaking a load or boring pathetic babble.
Tuesday, 23 August 2011
Monday, 20 June 2011
Catch 22
So we all know that generally one thing leads to another with relation to our health. The problem for many of us is how to stop this from happening. But what if we feel we know how to stop it but it's out of our control, then what do we do?
I have a dilemma at he minute of how I can convince certain specialists, counsellors and pain clinic on how I feel I can be best treated. I am shocked that not all of the information on me is not always there between different health professionals. As I have had to wait sooooooo long inbetween tests and appt.'s it's like I've fallen through the cracks. I am not getting the help I need when I need it.
If the services available to me actually listened to me and if all the services were actually properly linked then i might actually get the correct treatment. I am not a trained health professional so my ideas/views are not valid, but it's my body, it's me who is suffering, I should have a greater say in the treatment and medication that I recieve. If I convince one service to give me what I need then another service may not go with it and then well I'm stuck, I need all available things to be going in the same direction but they won't listen to what I believe will help me, they have the theory from their textbooks and well they have to stick to it, but not all cases are in the theory and services should be more flexible to accomodate people like me.
The only way I can get what I need is to go private, which I can't afford, it's like I'm a lost cause and I know I'm not alone in recieving similar treatment and similar care where we are basically left alone to suffer. it's not good enough but what can we do? Chronic pain and problems that are yet to be discovered/treatable/curable aren't seen as important and we are left alone to suffer.
Moan over, please feel free to comment if you have suffered the same fate as me.
Thanks for reading
I have a dilemma at he minute of how I can convince certain specialists, counsellors and pain clinic on how I feel I can be best treated. I am shocked that not all of the information on me is not always there between different health professionals. As I have had to wait sooooooo long inbetween tests and appt.'s it's like I've fallen through the cracks. I am not getting the help I need when I need it.
If the services available to me actually listened to me and if all the services were actually properly linked then i might actually get the correct treatment. I am not a trained health professional so my ideas/views are not valid, but it's my body, it's me who is suffering, I should have a greater say in the treatment and medication that I recieve. If I convince one service to give me what I need then another service may not go with it and then well I'm stuck, I need all available things to be going in the same direction but they won't listen to what I believe will help me, they have the theory from their textbooks and well they have to stick to it, but not all cases are in the theory and services should be more flexible to accomodate people like me.
The only way I can get what I need is to go private, which I can't afford, it's like I'm a lost cause and I know I'm not alone in recieving similar treatment and similar care where we are basically left alone to suffer. it's not good enough but what can we do? Chronic pain and problems that are yet to be discovered/treatable/curable aren't seen as important and we are left alone to suffer.
Moan over, please feel free to comment if you have suffered the same fate as me.
Thanks for reading
Monday, 13 June 2011
Disabled.. ?
The Disability Discrimination Act (DDA) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.
When you think of a disabled person you will instantly picture someone in a wheelchair, or something similar. We all do it, being disabled has a massive stigma to it of something unbelievably horrendous. Which in some cases is unfortunately true. However there are those that are disabled but they aren't in a wheelchair or aren't exactly how you would picture someone who is disabled to be. This causes alot of people to almost dismiss those disabled that aren't disabled in an extreme way. This is also true of the government, well of the division of the government that deals with disability living allowance.
If you was to see me and come chat to me say in a pub or restaurant or somewhere sat (all be it probably with my legs up resting on another chair and my crutches lent next to me) you would not label me as disabled. I look on the face of it perfectly normal, you would probably assume that I had been in a car crash or had a sporting injury. However I am by basic definition disabled, I mean im definately not 'able'. I suffer with severe periostitis, nerve damage in my back and severe chronic pain (amongst other little things as an effect from the main things). These problems mean I cannot sit with my legs bent for more than a couple of minutes, same goes for standing or walking, I do have the occasional relatively good day, although even then I have taken alot of medication and can still only manage to sit/stand/walk for around 5 minutes. If I do try and make the most of a good day then that will mean the day becomes a bad day. this is one of the reasons why if you was to just see me you would presume I was fairly okay. this is because if I do have a relatively pain free day then I want to keep it that way, I don't want to try do any extra because then I know I will be laid up in excruciating pain.
Anyway my point to all this is trying to explain to the Disability Living Allowance (DLA) of my conditions and there effects. I recently received a letter from the DLA saying because I can walk (hobble with crutches in alot of pain) for 5 minutes that means I can walk. Also because I can stand and then lay down and then stand and then lay down that means I can cook a meal. This really got to me, for one what they have said is wrong, If I do 'walk' for 5 minutes then I need to rest by laying down for at least 20 minutes, maybe even up to several hours. Where exactly is there that someone can do this?? When I said earlier that you may find me in a pub or where ever, this is incredibly rare, i normally only leave the house for medical appointments. I have a driving license although i am not able to drive so i rely on other people taking me places. When i do go to say pub i have to be cheeky and put my legs up on an extra chair, I normally drink alot to try take some of the pain away and I talk and laugh but am inside dieing and wanting to be laid up at home. With regards cooking a meal, well how many meals can be cooked when you have to lay down every couple of minutes. Seriously try it, it's impossible, not to mention a fire hazard if I was to use the grill/hob or whatever. I tend to eat cereal (sometimes microwave meal) if my mum or girlfriend haven't prepared a meal for me the day before.
So I was told i couldn't receive DLA on these grounds I have mentioned, as well as the fact that I can sometimes do certain other things, such as going to toilet on my own, getting myself out of a chair, getting in and out of bed etc etc, which to be honest I struggle with but I don't always need help with these so that is fine. The DLA completely ignored the fact that I can't pick myself up from the floor, also completely ignored alot of things that should be important but you see the DLA has had to cut down on who it gives help/support/money too. I don't want a load of money, I just want help where i need it, I mean you've probably figured out that I can't work. I would like a blue disabled badge so if I do get taken somewhere then we can park close enough for me to be able to get there.
Now this is where it gets extremely tricky and incredibly annoying/stressful. There is a huge conflict between what my counsellor/physio/pain clinic/specialists tell me and what the DLA tell me. My counsellor wants me to accept my new disabled life to forgot the person that I once was beforehand, however I need support from the DLA to do this. My physio wants me to try going in a swimming pool to do a weightless jogging motion to try fix my core and sort out the extra damage not being mobile has caused. However I can't afford this without help from the DLA and also I can't tell the DLA that I am trying to get more mobile as they would then say I can't have the support. I can't get the right medication from the pain clinic as they see my condition as long term and worry about the long term effects of certain medication. Basically for me to be able to get DLA I have to stop trying to get better both physically and mentally. They want me to just lay up all day everyday (which is what I almost do anyway) and to basically be the cliched disabled person to allow them to give me DLA and support.
I can't improve on my own, as much as I hate to admit it and as mush as I hate needing help and benefits, I need support. But they won't at the minute give me support so i just have to lay here, moaning on a blog that probably no one will read or at least never read right through to the end. There is no help or support for those that aren't the typical stereotyped disabled, we are in a grey area and it can't stay this way, something has to change and i really hope it changes soon. I know I don't have it no where near as bad as some, but I do need support and at the minute I'm not getting what I need/want or deserve.
Thanks for reading, please share your stories with me and let me know if you are in the same grey area please.
Thank you
When you think of a disabled person you will instantly picture someone in a wheelchair, or something similar. We all do it, being disabled has a massive stigma to it of something unbelievably horrendous. Which in some cases is unfortunately true. However there are those that are disabled but they aren't in a wheelchair or aren't exactly how you would picture someone who is disabled to be. This causes alot of people to almost dismiss those disabled that aren't disabled in an extreme way. This is also true of the government, well of the division of the government that deals with disability living allowance.
If you was to see me and come chat to me say in a pub or restaurant or somewhere sat (all be it probably with my legs up resting on another chair and my crutches lent next to me) you would not label me as disabled. I look on the face of it perfectly normal, you would probably assume that I had been in a car crash or had a sporting injury. However I am by basic definition disabled, I mean im definately not 'able'. I suffer with severe periostitis, nerve damage in my back and severe chronic pain (amongst other little things as an effect from the main things). These problems mean I cannot sit with my legs bent for more than a couple of minutes, same goes for standing or walking, I do have the occasional relatively good day, although even then I have taken alot of medication and can still only manage to sit/stand/walk for around 5 minutes. If I do try and make the most of a good day then that will mean the day becomes a bad day. this is one of the reasons why if you was to just see me you would presume I was fairly okay. this is because if I do have a relatively pain free day then I want to keep it that way, I don't want to try do any extra because then I know I will be laid up in excruciating pain.
Anyway my point to all this is trying to explain to the Disability Living Allowance (DLA) of my conditions and there effects. I recently received a letter from the DLA saying because I can walk (hobble with crutches in alot of pain) for 5 minutes that means I can walk. Also because I can stand and then lay down and then stand and then lay down that means I can cook a meal. This really got to me, for one what they have said is wrong, If I do 'walk' for 5 minutes then I need to rest by laying down for at least 20 minutes, maybe even up to several hours. Where exactly is there that someone can do this?? When I said earlier that you may find me in a pub or where ever, this is incredibly rare, i normally only leave the house for medical appointments. I have a driving license although i am not able to drive so i rely on other people taking me places. When i do go to say pub i have to be cheeky and put my legs up on an extra chair, I normally drink alot to try take some of the pain away and I talk and laugh but am inside dieing and wanting to be laid up at home. With regards cooking a meal, well how many meals can be cooked when you have to lay down every couple of minutes. Seriously try it, it's impossible, not to mention a fire hazard if I was to use the grill/hob or whatever. I tend to eat cereal (sometimes microwave meal) if my mum or girlfriend haven't prepared a meal for me the day before.
So I was told i couldn't receive DLA on these grounds I have mentioned, as well as the fact that I can sometimes do certain other things, such as going to toilet on my own, getting myself out of a chair, getting in and out of bed etc etc, which to be honest I struggle with but I don't always need help with these so that is fine. The DLA completely ignored the fact that I can't pick myself up from the floor, also completely ignored alot of things that should be important but you see the DLA has had to cut down on who it gives help/support/money too. I don't want a load of money, I just want help where i need it, I mean you've probably figured out that I can't work. I would like a blue disabled badge so if I do get taken somewhere then we can park close enough for me to be able to get there.
Now this is where it gets extremely tricky and incredibly annoying/stressful. There is a huge conflict between what my counsellor/physio/pain clinic/specialists tell me and what the DLA tell me. My counsellor wants me to accept my new disabled life to forgot the person that I once was beforehand, however I need support from the DLA to do this. My physio wants me to try going in a swimming pool to do a weightless jogging motion to try fix my core and sort out the extra damage not being mobile has caused. However I can't afford this without help from the DLA and also I can't tell the DLA that I am trying to get more mobile as they would then say I can't have the support. I can't get the right medication from the pain clinic as they see my condition as long term and worry about the long term effects of certain medication. Basically for me to be able to get DLA I have to stop trying to get better both physically and mentally. They want me to just lay up all day everyday (which is what I almost do anyway) and to basically be the cliched disabled person to allow them to give me DLA and support.
I can't improve on my own, as much as I hate to admit it and as mush as I hate needing help and benefits, I need support. But they won't at the minute give me support so i just have to lay here, moaning on a blog that probably no one will read or at least never read right through to the end. There is no help or support for those that aren't the typical stereotyped disabled, we are in a grey area and it can't stay this way, something has to change and i really hope it changes soon. I know I don't have it no where near as bad as some, but I do need support and at the minute I'm not getting what I need/want or deserve.
Thanks for reading, please share your stories with me and let me know if you are in the same grey area please.
Thank you
Friday, 10 June 2011
Chronic Pain - brief description and my story
I could of given this article many different and clever eye catching titles but wanted to keep it simple. I suffer from, among other things, severe chronic pain. After nearly 3 years of scans and specialist appointments I have been given a vague diagnosis of the cause of my pain, however the cause of the pain has become irrelevant as the pain itself, the nerves sending, the part of the brain receiving, has dramatically increased. For those reading unaware of 'severe chronic pain' here is a rough (im not a doctor) explanation..
In our brain there are parts for receiving touch and pain etc, the part for our hands is the largest, when we injure/feel pain in say our arm the nerve/pain signals are sent to this part of the brain. When we injure something and the problem/cause of pain cannot be found/corrected then these nerves/pain signals go on a continous loop, the amount of nerves increase that go from the part injured and also the receiving part of the brain grows. So in my case the area in my brain that is for shins has enlarged to ten times the size and when you add this to a larger number of nerves that are going from my shin to my brain and that they are doing this repeatedly then it equals rather severe chronic pain.
The vague diagnosis I have of the problem in my shins is periostitis, this is basically an inflammation/tear of the periosteum, the periosteum is the layer (tissue) wrapped around the bone, it's main purpose is to heal the bone when it breaks. However this periosteum doesn't have healing properties of it's own. The reason I say vague diagnosis is that periostitis doesn't show up on scans, well it will if it is actually severely inflamed, say after jogging. So I have a clinical diagnosis, a symptomatic diagnosis. With the NHS it is all about money and urgency, which is how it has to be. But there's the problem right there for people who haven't had a diagnosis, the after effects. My problem, periostitis, can be solved by surgery. Whereby they slice down my shin and tear it completely then add a skin graft, whereby (remember im not a doctor) the cells and tissue from the skin graft does the healing. However I wasn't offered this surgery as I was told it may heal in time, which doesn't help me when I'm in constant pain and unable to work, walk or even sit with my legs bent due to pain. So it may heal in time and in the mean time we'll send you to a vascular specialist, pointless waste of NHS money and time. Money and time that could of paid for surgery.
Now here is where it went from bad to horrendous. It took four physio's, around a 100 doctor (GP) appointments and four specialists two years to refer me to a place I didn't even know existed, a pain clinic. However a little part of me wishes I had never heard and been referred there. The doctor there suggested steroid root nerve block injections to block the pain signals, brilliant I thought where do I sign the consent, I mean who wouldn't if they thought it may have the slightest chance of making the constant pain go away. I was informed it was experimental and I was informed it may not work and not to 'get my hopes up'. So on the 16th December 2010 I lay there with my bum crack out infront of a room full of around 10 people, no idea why 10 people needed to be there. Some where in charge of the x-ray so the doctor knew where to stab, not encouraging when a massive needle is going into your spine and it's being directed by repeated x-rays. The injections didn't hurt no where near as much as I was told or thought they would. I lay in the bed afterwards and the kind nurses bring me coffee and toast and then stand there in the corner to entertain me as I hear their gossip and talk of last night's TV, I mean that must be why they stand there and talk for so long. The woman next to me stands up out of bed and rejoices at the relief she's had. I lay there however with pain in my back which is what to be expected when you've just had two injections in the spine. My shins still hurting at the time but I'm reassured that will ease as the steroids do their magic and that the pain in my back will ease within a week.
Two weeks later, still pain in my shins and now a new pain in my lower back, the steroids hadn't done their magic and the pain in my lower back hadn't eased. A week later and still the same, I had another specialist appointment but this time with a 'lower limb specialist', turns out the first guy I saw was a hip specialist, ahh the NHS, always doing new things to delight us. In the appointment I mentioned my back pain and within 2 seconds the specialist says with complete conviction 'you don't have a shin problem', the pain has been referred from you're back. Erm.. I'm not a specialist but I had no pain in my back for the entire shin pain duration and now you're saying I don't have a shin problem. Hmmm I went along with it, I mean they are the specialists after all. She then says something you always want to hear after a procedure 'you shouldn't have had the injections without first having an MRI of your back and a nerve conduction study' brilliant.
So.. I have the MRI, well I have several, of my back, neck and head and I also have the nerve conduction study. MRI's return with small disc bulges, for which I am told are harmless and to ignore, I mean for me if something isn't what it's suppose to be then I'm pretty sure it shouldn't be ignored, but anyway.. The nerve conductions shows bilateral lumbosacral polyradiculopathy, clusters of damaged nerves either side of the spine. These damaged nerves are not significant enough to be causing the leg pain, however they are significant enough to be causing the lower back pain. Now it doesn't take a genius or specialist to figure this one out, the damaged nerves are a result of the injections. So.. the pain clinic designed to stop pain has actually caused more pain, again delightful.
Now I won't go into the full psychology of this (Im a psychology graduate by the way) but when you are in a group, no matter the size, you tend to defend your own. Well the NHS definately does this, whenever I have mentioned that the injections caused the nerve damage they either change the topic or say that it could of been many things. Erm.. no it couldn't, just admit that the doctor did it, admit that I should have had studies done first that would have showed my nerves were already fragile due to the chronic pain and admit your collective neglegance. I say collective as I don't know who directly to blame. The doctor at the pain clinic would be an obvious choice as he should have seen I hadn't had any tests on my back, the specialists are equally to blame for not sending me for the scans. But at the end of the day six months after having the injections I am here sat with my legs up resting, having had to lay on my back to rest during this with my laptop on a table as I can't rest the laptop on my legs, in pain, fairly drugd up, so I do apologise if there any mistakes, my medication seems to effect everything, slurring my words as if I've had ten pints is my favourite, although I suppose I'm not exactly being marked for this.
Now I have to go full circle, I have to be referred again to a specialist for my shins and plead with him for either the surgery or for an MRI while my legs are inflamed. The only way to plead in the NHS however is to go private, then they change their tune. Anyone want to help me raise the money to go private, if I have appointment, MRI, appointment, Surgery then that could be as much as £5000. It's either that or live a life where I'm laid up all day everyday having the occasional good day where I can hobble with crutches to the amazingly far distance of 40 yards. I'm sure either living at my parents or living in a council house will be lovely. i'm sure I'll love that my kids (I don't have kids yet) want me to go out with them or play with them and I can't will be the best feeling in the whole world.
I've never really agreed with people hating on the NHS, however I do feel just a little different on that matter now. I've plowed on up until this point for one main reason, my amazing, caring beautiful girlfriend who has for some reason stood by me as I've gained weight (inevitable as can't exercise and did used to go to the gym three times a week, football twice a week etc etc), been in horrible moods, suffered a level of depression I had studied but never fully understood until experiencing it, she's still here being my carer, being my rock, making me smile, I wouldn't be here moaning on a blog if it wasn't for her.
Thanks for reading, let me know your chronic pain stories, we need to raise awareness and we need to prevent stories like mine from happening again and again and again and again.
Thank you
In our brain there are parts for receiving touch and pain etc, the part for our hands is the largest, when we injure/feel pain in say our arm the nerve/pain signals are sent to this part of the brain. When we injure something and the problem/cause of pain cannot be found/corrected then these nerves/pain signals go on a continous loop, the amount of nerves increase that go from the part injured and also the receiving part of the brain grows. So in my case the area in my brain that is for shins has enlarged to ten times the size and when you add this to a larger number of nerves that are going from my shin to my brain and that they are doing this repeatedly then it equals rather severe chronic pain.
The vague diagnosis I have of the problem in my shins is periostitis, this is basically an inflammation/tear of the periosteum, the periosteum is the layer (tissue) wrapped around the bone, it's main purpose is to heal the bone when it breaks. However this periosteum doesn't have healing properties of it's own. The reason I say vague diagnosis is that periostitis doesn't show up on scans, well it will if it is actually severely inflamed, say after jogging. So I have a clinical diagnosis, a symptomatic diagnosis. With the NHS it is all about money and urgency, which is how it has to be. But there's the problem right there for people who haven't had a diagnosis, the after effects. My problem, periostitis, can be solved by surgery. Whereby they slice down my shin and tear it completely then add a skin graft, whereby (remember im not a doctor) the cells and tissue from the skin graft does the healing. However I wasn't offered this surgery as I was told it may heal in time, which doesn't help me when I'm in constant pain and unable to work, walk or even sit with my legs bent due to pain. So it may heal in time and in the mean time we'll send you to a vascular specialist, pointless waste of NHS money and time. Money and time that could of paid for surgery.
Now here is where it went from bad to horrendous. It took four physio's, around a 100 doctor (GP) appointments and four specialists two years to refer me to a place I didn't even know existed, a pain clinic. However a little part of me wishes I had never heard and been referred there. The doctor there suggested steroid root nerve block injections to block the pain signals, brilliant I thought where do I sign the consent, I mean who wouldn't if they thought it may have the slightest chance of making the constant pain go away. I was informed it was experimental and I was informed it may not work and not to 'get my hopes up'. So on the 16th December 2010 I lay there with my bum crack out infront of a room full of around 10 people, no idea why 10 people needed to be there. Some where in charge of the x-ray so the doctor knew where to stab, not encouraging when a massive needle is going into your spine and it's being directed by repeated x-rays. The injections didn't hurt no where near as much as I was told or thought they would. I lay in the bed afterwards and the kind nurses bring me coffee and toast and then stand there in the corner to entertain me as I hear their gossip and talk of last night's TV, I mean that must be why they stand there and talk for so long. The woman next to me stands up out of bed and rejoices at the relief she's had. I lay there however with pain in my back which is what to be expected when you've just had two injections in the spine. My shins still hurting at the time but I'm reassured that will ease as the steroids do their magic and that the pain in my back will ease within a week.
Two weeks later, still pain in my shins and now a new pain in my lower back, the steroids hadn't done their magic and the pain in my lower back hadn't eased. A week later and still the same, I had another specialist appointment but this time with a 'lower limb specialist', turns out the first guy I saw was a hip specialist, ahh the NHS, always doing new things to delight us. In the appointment I mentioned my back pain and within 2 seconds the specialist says with complete conviction 'you don't have a shin problem', the pain has been referred from you're back. Erm.. I'm not a specialist but I had no pain in my back for the entire shin pain duration and now you're saying I don't have a shin problem. Hmmm I went along with it, I mean they are the specialists after all. She then says something you always want to hear after a procedure 'you shouldn't have had the injections without first having an MRI of your back and a nerve conduction study' brilliant.
So.. I have the MRI, well I have several, of my back, neck and head and I also have the nerve conduction study. MRI's return with small disc bulges, for which I am told are harmless and to ignore, I mean for me if something isn't what it's suppose to be then I'm pretty sure it shouldn't be ignored, but anyway.. The nerve conductions shows bilateral lumbosacral polyradiculopathy, clusters of damaged nerves either side of the spine. These damaged nerves are not significant enough to be causing the leg pain, however they are significant enough to be causing the lower back pain. Now it doesn't take a genius or specialist to figure this one out, the damaged nerves are a result of the injections. So.. the pain clinic designed to stop pain has actually caused more pain, again delightful.
Now I won't go into the full psychology of this (Im a psychology graduate by the way) but when you are in a group, no matter the size, you tend to defend your own. Well the NHS definately does this, whenever I have mentioned that the injections caused the nerve damage they either change the topic or say that it could of been many things. Erm.. no it couldn't, just admit that the doctor did it, admit that I should have had studies done first that would have showed my nerves were already fragile due to the chronic pain and admit your collective neglegance. I say collective as I don't know who directly to blame. The doctor at the pain clinic would be an obvious choice as he should have seen I hadn't had any tests on my back, the specialists are equally to blame for not sending me for the scans. But at the end of the day six months after having the injections I am here sat with my legs up resting, having had to lay on my back to rest during this with my laptop on a table as I can't rest the laptop on my legs, in pain, fairly drugd up, so I do apologise if there any mistakes, my medication seems to effect everything, slurring my words as if I've had ten pints is my favourite, although I suppose I'm not exactly being marked for this.
Now I have to go full circle, I have to be referred again to a specialist for my shins and plead with him for either the surgery or for an MRI while my legs are inflamed. The only way to plead in the NHS however is to go private, then they change their tune. Anyone want to help me raise the money to go private, if I have appointment, MRI, appointment, Surgery then that could be as much as £5000. It's either that or live a life where I'm laid up all day everyday having the occasional good day where I can hobble with crutches to the amazingly far distance of 40 yards. I'm sure either living at my parents or living in a council house will be lovely. i'm sure I'll love that my kids (I don't have kids yet) want me to go out with them or play with them and I can't will be the best feeling in the whole world.
I've never really agreed with people hating on the NHS, however I do feel just a little different on that matter now. I've plowed on up until this point for one main reason, my amazing, caring beautiful girlfriend who has for some reason stood by me as I've gained weight (inevitable as can't exercise and did used to go to the gym three times a week, football twice a week etc etc), been in horrible moods, suffered a level of depression I had studied but never fully understood until experiencing it, she's still here being my carer, being my rock, making me smile, I wouldn't be here moaning on a blog if it wasn't for her.
Thanks for reading, let me know your chronic pain stories, we need to raise awareness and we need to prevent stories like mine from happening again and again and again and again.
Thank you
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