This has been a momentus week for ME sufferers globally as the FDA published their research linking ME to retroviruses on Monday. This could mean at the best a cure is around the corner and at worst better treatment and understanding is close.
Finally it is also a big kick in the teeth to all out there who still don't believe ME to be anything more than psychosomatic or plain idleness and I hope it shuts them all up once and for all.
As for me? Just tell me where to sign up for drug trials!
Saturday 28 August 2010
Monday 5 July 2010
Procrastination and friendships - What you can do when you can't DO anything!
Most people crave a few sick days a year, to trawl the internet guilt free, eat bad food, and hide indulgently under the duvet. But when that is your life it becomes a prison. Most restrictive at all is the foggy headedness. This meand you can read books, and sometimes following films is difficult.
I rely on DVD boxsets and trashy tv - and also on procrastination tools like Stumbleupon and facebook . anything that requires minimal brain power, and, when I am really bad, minimal physical effort is a strain. The problem is that it's pretty miserable being isolated from the world and depression is a fatiguing condition, which all multiplies.
Friendships are hard. A good friendship is always going to be something that takes attention, but when you are forced to spend most of your time segregated from the world then it becomes nearly impossible. you cant' 'join in' on the normal casual socialising and it's embarrassing to have to explain to people why you cant do things, why you have to plan things so carefully. In many ways it is easier to have no friends... but that leads to a very lonely life, detrimental to an chance of recovery you might have.
When I first got ill I became a prolific letter writer. Any day I had the energy to put pen to paper, or write a few lines of an email, I did it. I wish sometimes now that I had kept copies of those letters before sending them as they make up an account of my life back then. As social networking and the internet bleeds into every facet of our lives, communication became easier. I hear so much FaceBook-bashing and I understand the arguments and opposition people have to a 'virtual' life but for me it is a lifeline. It allows me to have casual contact with people when I cant see them and keep some sort of relationship going with them.
Ive had a few really close friends over the course of this illness. 3 or 4 who I've told everything to and who have tried their hardest to understand what I am going through. I am grateful to them for their support. They are the exception to the rule of an iron wall of ignorance when it comes to ME, however. I, together with my whole family have lost friends over my illness. Many of my mum's friends couldn't work out why she had to nurse her 'lazy' daughter. understandably, when I started university I was so concerned about how to tell people I was ill. I never like telling people but you soon realise that to have a real friendship with someone you have to tell them - they have to know why you can't do a b and c, and they need to accept it and a good friend will simply value whatever contribution you can make to the friendship. Sadly these people are in the minority and as much as I don't want to have to admit it, I simply can't be friends with the kind of epople who aren't understanding, who don't make allowances for me if I cant do things. That hurts. I don't like asking so much of people, but when you have ME you have no choice.
School was hard. Being an adult with ME is terrifying in lots of ways as I loathe myself for having to take benefits from the government, but it is nothing compared to school. The nature of the beast that is the teenager demands uniformity and conformity - despite professing to the opposite, there is little a teenager can abide less than someone who doesn't follow the prescribed rites of passage.
So I played it cool. I was living at home anyway, so noone questioned why they didn't see me outside lectures. Being a fresher is crazy anyway, and everyone is disorientated (by alcohol and by their new surroundings in equal measures) so little attention is paid to a friendly face who is only a sporadic acquaintance.
This meant I could be a casual participant in these new group friendships without missing out on too much and without too many questions being asked. It was fantastic after the microcosm of school and I felt much more confident as slowly I could explain to my new friends why I was sometimes not able to do things and how sometimes I might only be able to come to something for a little while. I agonised over telling people, fearful of bad reactions and ostracising myself even more than I had to anyway. I have spent so much of my life upstairs in bed. Missing out on the most basic interaction with my family, let alone people outside my family, and the fear of rejection was overwhelming. But I had to accept that I am ill and I can only have friends in my life who accept that, bugger the rest of them.
This has a happy ending. I have been lucky in life. I pour my time into friendships and have been rewarded bountifully. After years of school - of people not understanding and not getting in touch and giving up on me, giving up on my parents because they didnt understand our family situation it is getting easier to maintain friendships now ME is in the public eye a little more.
I rely on DVD boxsets and trashy tv - and also on procrastination tools like Stumbleupon and facebook . anything that requires minimal brain power, and, when I am really bad, minimal physical effort is a strain. The problem is that it's pretty miserable being isolated from the world and depression is a fatiguing condition, which all multiplies.
Friendships are hard. A good friendship is always going to be something that takes attention, but when you are forced to spend most of your time segregated from the world then it becomes nearly impossible. you cant' 'join in' on the normal casual socialising and it's embarrassing to have to explain to people why you cant do things, why you have to plan things so carefully. In many ways it is easier to have no friends... but that leads to a very lonely life, detrimental to an chance of recovery you might have.
When I first got ill I became a prolific letter writer. Any day I had the energy to put pen to paper, or write a few lines of an email, I did it. I wish sometimes now that I had kept copies of those letters before sending them as they make up an account of my life back then. As social networking and the internet bleeds into every facet of our lives, communication became easier. I hear so much FaceBook-bashing and I understand the arguments and opposition people have to a 'virtual' life but for me it is a lifeline. It allows me to have casual contact with people when I cant see them and keep some sort of relationship going with them.
Ive had a few really close friends over the course of this illness. 3 or 4 who I've told everything to and who have tried their hardest to understand what I am going through. I am grateful to them for their support. They are the exception to the rule of an iron wall of ignorance when it comes to ME, however. I, together with my whole family have lost friends over my illness. Many of my mum's friends couldn't work out why she had to nurse her 'lazy' daughter. understandably, when I started university I was so concerned about how to tell people I was ill. I never like telling people but you soon realise that to have a real friendship with someone you have to tell them - they have to know why you can't do a b and c, and they need to accept it and a good friend will simply value whatever contribution you can make to the friendship. Sadly these people are in the minority and as much as I don't want to have to admit it, I simply can't be friends with the kind of epople who aren't understanding, who don't make allowances for me if I cant do things. That hurts. I don't like asking so much of people, but when you have ME you have no choice.
School was hard. Being an adult with ME is terrifying in lots of ways as I loathe myself for having to take benefits from the government, but it is nothing compared to school. The nature of the beast that is the teenager demands uniformity and conformity - despite professing to the opposite, there is little a teenager can abide less than someone who doesn't follow the prescribed rites of passage.
So I played it cool. I was living at home anyway, so noone questioned why they didn't see me outside lectures. Being a fresher is crazy anyway, and everyone is disorientated (by alcohol and by their new surroundings in equal measures) so little attention is paid to a friendly face who is only a sporadic acquaintance.
This meant I could be a casual participant in these new group friendships without missing out on too much and without too many questions being asked. It was fantastic after the microcosm of school and I felt much more confident as slowly I could explain to my new friends why I was sometimes not able to do things and how sometimes I might only be able to come to something for a little while. I agonised over telling people, fearful of bad reactions and ostracising myself even more than I had to anyway. I have spent so much of my life upstairs in bed. Missing out on the most basic interaction with my family, let alone people outside my family, and the fear of rejection was overwhelming. But I had to accept that I am ill and I can only have friends in my life who accept that, bugger the rest of them.
This has a happy ending. I have been lucky in life. I pour my time into friendships and have been rewarded bountifully. After years of school - of people not understanding and not getting in touch and giving up on me, giving up on my parents because they didnt understand our family situation it is getting easier to maintain friendships now ME is in the public eye a little more.
Wednesday 16 June 2010
Career Fears
Everyone worries about the future. about their health, their love life, their family, their security. we worry about getting a job, keeping a job, being happy and fulfilled. we are told retraining is always posible, to reach for the skies. i have been brought up with a british resolve to work until i die on my feet. In my family we are over-achievers to the extreme. there is nothing we are incapable of, and there is no grade other than A's. This is not an outlook that is conducive to coping with ME, but it is one that drives me to fight my disease every day. my biggest fear is not being able to work to sustain myself. forget being able to follow my career dreams and realise my potential, right now if i lost my benefits i would have to live at home and not even be able to work at tesco's to keep myself. it is depressing and crushing. the benefits system is disgustingly anti-ME. income support isn't worth having if you want to try and work part time like i do, and my mother had to go to court to appeal my income support when i was receiving it because the government was trying to stamp down on ME claimers. i received disability living allowance for my rent and a little more and i work part time and, with some help from my parents, i can afford to live away from home (although i have to come home often when i am very ill to have help from my mum and my lovely fiance has to care for me a lot). v lucky to work part time from home. couldnt do another job because my health is too unreliable.
this fear keeps me up at night. the few times ive articulated it, my breath has been hard to catch and my heart beat a little harder against my ribs.
I have been working on my degree for 5 years. i have consistently averaged a 1:1 for all my work and yet i cant finish it... i keep having relapses. i had to leave university and try to finish my degree with the open university, but they have turned out to be grossly unsupportive of disabled students. finishing my degree is my biggest wish right now and i feel like the last 5 years will have been a waste of everything until i have it.
this fear keeps me up at night. the few times ive articulated it, my breath has been hard to catch and my heart beat a little harder against my ribs.
I have been working on my degree for 5 years. i have consistently averaged a 1:1 for all my work and yet i cant finish it... i keep having relapses. i had to leave university and try to finish my degree with the open university, but they have turned out to be grossly unsupportive of disabled students. finishing my degree is my biggest wish right now and i feel like the last 5 years will have been a waste of everything until i have it.
Thursday 27 May 2010
Open University and Disabled Students - Research needed
I have spent 6 years trying to get my degree. At every turn my illness has thwarted my attempts. I am, if not modest, a very high achieving student and my academic capabilities have never been the problem.
I was studying at Cardiff University but after a bad relapse I had to leave and resumed my studies with the Open University. I assumed it would be an institution, because of the kind of study it offers, that was sensitive to the needs of students with disabilities but I have been appalled by what I have found and have now reached an upsetting juncture at which I may have to take legal action against them.
they never sent me the exam for my latin course and failed me for the whole course - they will neither send me an exam now or admit there could be a small chance they were in the wrong. in the most basic sense they are breaking the contract of me buying goods from them and them not delivering the goods as they technically never gave me a way to finish the course. they now wont take my calls. i just want to take the exam and finish the module. it's upsetting me so much and driving me mad. Has anyone else heard of similar experiences and what do you recommend I try next?
I was studying at Cardiff University but after a bad relapse I had to leave and resumed my studies with the Open University. I assumed it would be an institution, because of the kind of study it offers, that was sensitive to the needs of students with disabilities but I have been appalled by what I have found and have now reached an upsetting juncture at which I may have to take legal action against them.
they never sent me the exam for my latin course and failed me for the whole course - they will neither send me an exam now or admit there could be a small chance they were in the wrong. in the most basic sense they are breaking the contract of me buying goods from them and them not delivering the goods as they technically never gave me a way to finish the course. they now wont take my calls. i just want to take the exam and finish the module. it's upsetting me so much and driving me mad. Has anyone else heard of similar experiences and what do you recommend I try next?
Tuesday 25 May 2010
Nanny State - i Wish!
It is a tricky subject, benefits. Firstly I am loathe to have to be on them and feel embarrassed, ashamed and guilty. Secondly, the government makes it harder and harder for disabled people to receive their benefits and easier and easier for the jobless to receive theirs.
Many sufferers of ME have been victims to cuts in their benefits this year. My mother had to take my case to an appeals court to battle to keep mine. When she got there, the judge told her the local council should be ashamed of themselves for what they were putting us through and that it was a disgrace how disabled people throughout England and Wales are being made to feel like they have no right to an independent life.
I work part time and have so many aims and goals for a career. I continually try to get closer to these dreams. It has taken me over 6 years to get a degree whilst working part time from home. I would not be able to work was I not able to do my job from bed at home as my job is an internet based role with very flexible working hours. If I didn't have this unique job, no other exists that I could undertake reliably. Some employers are being forced to be more understanding to disabled people's needs and charities like SCOPE are doing great work to spread awareness of how companies can be more diverse and accommodating, but despite this the unpredictability of ME makes working very difficult unless you work for yourself or a very small company. Full time is beyond reach for most patients and part time jobs that are not just casual work can be hard to find.
There is so much to say on this subject. so much research, so many statistics.
I have to rely on my wonderful mother to help me with my benefits. I am too ill to sort them out myself. Every other month there is some sort of problem with my DLA *Disabled Living Allowance*. I am accused of supplying incorrect information, their calculations are often incorrect, getting council tax exemption is a minefield. It is degrading. I'm not work shy. I'm disabled. Some civil servant decided that claimants suffering from ME were probably all faking it - the clamp down on benefits for ME sufferers has been universally severe and unjust. In the act of taking benefits away from people with ME the government is sending out the message that the illness is not a real medical condition but that we are a group of people who just need a gentle 'nudge' in the right direction.
I live in constant gratitude for the work my Mum does to help me through this disease, but simultaneousy wish deeply that she didn't have to do it
Many sufferers of ME have been victims to cuts in their benefits this year. My mother had to take my case to an appeals court to battle to keep mine. When she got there, the judge told her the local council should be ashamed of themselves for what they were putting us through and that it was a disgrace how disabled people throughout England and Wales are being made to feel like they have no right to an independent life.
I work part time and have so many aims and goals for a career. I continually try to get closer to these dreams. It has taken me over 6 years to get a degree whilst working part time from home. I would not be able to work was I not able to do my job from bed at home as my job is an internet based role with very flexible working hours. If I didn't have this unique job, no other exists that I could undertake reliably. Some employers are being forced to be more understanding to disabled people's needs and charities like SCOPE are doing great work to spread awareness of how companies can be more diverse and accommodating, but despite this the unpredictability of ME makes working very difficult unless you work for yourself or a very small company. Full time is beyond reach for most patients and part time jobs that are not just casual work can be hard to find.
There is so much to say on this subject. so much research, so many statistics.
I have to rely on my wonderful mother to help me with my benefits. I am too ill to sort them out myself. Every other month there is some sort of problem with my DLA *Disabled Living Allowance*. I am accused of supplying incorrect information, their calculations are often incorrect, getting council tax exemption is a minefield. It is degrading. I'm not work shy. I'm disabled. Some civil servant decided that claimants suffering from ME were probably all faking it - the clamp down on benefits for ME sufferers has been universally severe and unjust. In the act of taking benefits away from people with ME the government is sending out the message that the illness is not a real medical condition but that we are a group of people who just need a gentle 'nudge' in the right direction.
I live in constant gratitude for the work my Mum does to help me through this disease, but simultaneousy wish deeply that she didn't have to do it
Monday 10 May 2010
Cripple!
Last week I went to a gig with my darling fiance, let's call him J. I am shuffling around with the aid of a stick at the moment and needed to find a chair once inside. Obviously these are not ideal gig-going circumstances - especially for a sold out venue as I spent most of the set staring at the back of people's heads as they were thrown around with the great abandon of rock and roll. My problem is that when I book tickets to these things my mind is often a little over enthusiastic about my capabilities.
My fiance, whilst being lovely, has a penchant for causing a sensation by playing to other peoples' prejudices and sense of political correctness. This has caused many an awkward moment when he, being part Indian himself, has probed a little too deeply into others' sense of right and wrong surrounding racial slurs! This means that he relishes, a little too much, the opportunity to do the same when it comes to disability. This gig was a prime and humorous example. When there was a crush to vacate the packed building after the gig, J rushed ahead of me like a human battering ram and jubilantly shouted "Cripple coming through! Make way for the cripple!" Demonically throwing a cheeky smile back towards me as many of our fellow gig-goers scattered and stared, not knowing whether to obey or argue the orders.
Five years ago I somehow endured a course at university in Cultural Criticism. This was a mulch of critical theory, gender studies, and all things politically correct. It was agony, and I am not sure what drives anyone to teach a room full of 18 year olds a subject that encourages them to talk about 'identity'. Blah! what it did encourage me to do, however, was to consider the post-modern jubilant redefinition of prejudicial slurs for minority groups, and led me to enjoy, childishly, 'shocking' people with my use of terms usually negatively associated with disability.
It is a infantile and perhaps seemingly silly pleasure, but beneath lies a serious issue of semiotics and the cultural meaning assigned to words and the questions of how these meanings and attitudes can, if ever, be changed and challenged.
My fiance, whilst being lovely, has a penchant for causing a sensation by playing to other peoples' prejudices and sense of political correctness. This has caused many an awkward moment when he, being part Indian himself, has probed a little too deeply into others' sense of right and wrong surrounding racial slurs! This means that he relishes, a little too much, the opportunity to do the same when it comes to disability. This gig was a prime and humorous example. When there was a crush to vacate the packed building after the gig, J rushed ahead of me like a human battering ram and jubilantly shouted "Cripple coming through! Make way for the cripple!" Demonically throwing a cheeky smile back towards me as many of our fellow gig-goers scattered and stared, not knowing whether to obey or argue the orders.
Five years ago I somehow endured a course at university in Cultural Criticism. This was a mulch of critical theory, gender studies, and all things politically correct. It was agony, and I am not sure what drives anyone to teach a room full of 18 year olds a subject that encourages them to talk about 'identity'. Blah! what it did encourage me to do, however, was to consider the post-modern jubilant redefinition of prejudicial slurs for minority groups, and led me to enjoy, childishly, 'shocking' people with my use of terms usually negatively associated with disability.
It is a infantile and perhaps seemingly silly pleasure, but beneath lies a serious issue of semiotics and the cultural meaning assigned to words and the questions of how these meanings and attitudes can, if ever, be changed and challenged.
Tuesday 4 May 2010
MEAW - ME Awareness Week
It always creeps up on me and catches me unaware... like water bills and smear tests... and I never learn from my past mistakes. Yes everyone, I have once again forgotten to prepare properly any kind of fund-raising for ME awareness week this year. It takes place from 8-16th May (yes that is next week, and yes I really am that behind in my organisation). I was only reminded of it yesterday and since then have been tweeting and facebooking wildly to let everyone know how to get involved with 'ahem' other people's valiant efforts to fund-raise for this important and overlooked event. The irony of the situation doesn't escape me. I am one such person who overlooks ME awareness week and yet I am someone who should really be behind it, who needs it to be successful, but that is one of the key problems with ME awareness and fund-raising efforts. Sufferers are too tired to get involved, and their families too busy and exhausted caring for them. When we are enjoying better periods, or if we manage to shake the illness permanently, we often don't want to jinx it by getting back into that 'ill' frame of mind and fight, as we should, against prejudice and for research into our disease. Perhaps one of the problems or kinks in the process is that ME isn't fatal. Unlike families battling for cancer research etc we are not fighting to save our lives, just our quality of life. This disease makes our lives a living hell - physically and mentally, and so perhaps like sufferers of PTSD we want to forget about it all whenever we can. Sadly this can lead to some oversights in how we should be supporting each other and really pushing for further research and medical help.
So, this ME week, belated as it may be, please get involved... if only by educating yourself a little better about the disease.
Alternatively, visit www.ayme.org.uk for fundraising events and links to research campaigns that need your support.
So, this ME week, belated as it may be, please get involved... if only by educating yourself a little better about the disease.
Alternatively, visit www.ayme.org.uk for fundraising events and links to research campaigns that need your support.
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