Things I do socially now I use a wheelchair
- if I need to stop somewhere or am waiting for someone to arrive, I overact the fact that I am waiting - I find a corner or pillar, fiddle with my phone and avoid eye contact. This is to stop people from 'helping'. If I don't make it completely obvious I am waiting then numerous people ask if I need help whilst the rest stare and wonder if they should.
- when people push each other out of my way and make me feel like a car I intentionally slow down to make a point that I was not and did not need to get past.
- if I am no more in the way than any walking person (usually in a shop), I do not preemptively move and instead wait for the person to say 'excuse me'. Once they have attempted to climb over me they might realise they simply had to treat me like a normal human being.
- when adults pull children away from me if they show the faintest bit if interest in my presence I ignore the adult and flash my lights. At best the adult might realise the child is intrigued and not ignorant, at the minimum the child will learn that you can interact with disabled people - or I will just piss their parents off.
- when kids in buggies stare at my chair I make a comment (to adults and child) about how mine differs from theirs in size, colour and that it has a joystick. It's nice to see the penny drop on adults faces as they realise the real reason the child is staring.
- drive forwards if someone leans on my chair
Things I wish I would do
- approach the adults who pull their children out of the way when I am nowhere near. Let them know that they are teaching their child that disability is something to be feared and that it makes me feel like a monster.
- drive in to the backs of boyfriends who yank their girlfriends arms to move them away from me. Alternatively, point out that 'protecting' your partner using physical aggression against them is not OK...you are not being a gentleman, you are being a douche.
- assertively tell people not to lean on/against my wheelchair back/handlebars/headrest - particularly on the tube. Just because I am disabled doesn't mean I am immune to being mugged. You could have your hands in my bag for all I know. Similarly, just because I am sitting down doesn't make it ok to approach me from behind by grabbing my shoulder. A hello would suffice.
- violently 'spasm' at the next person who tries to use me and my wheelchair as an arm/leg/newspaper rest.
Thursday 1 August 2013
Wednesday 24 April 2013
ME/CFS clinic appointment
This blog post was written using Dragon dictation for iPod. Please be patient if you find any mistakes in something doesn't make sense. I will tryand correct this time that at the moment that is not within my abilities.
This week I saw a chronic fatigue syndrome clinic. This is the second time I have seen such a service that my first time at this particular one.
The experience was… Interesting.
The first thing that happened was that when I arrived and turned the corner into the consultants were in the consultant said oh my goodness... This didn't strike me as a particularly positive start to be appointment to be honest. The consultant had some very interesting ideas about what causes chronic fatigue syndrome or M.E as it is preferred to be called by sufferers. The appointment lasted around one hour and I felt as if I was being talked that for the entire time,with no attempts to learn how my illness facts, what symptoms Et cetera.
The consultants series on M.E/CFS word that it takes three mechanisms to cause M.E/CFS to happen. In his opinion these were as follows;
One. The genetic predisposition to the conviction.
Two. A trigger for example a major life events, a virus, another illness or et cetera.
Three. Particular mental state was he called it a 'fertile mind. . .
I tried to bite my tongue . I completely disagree with this theory, which I have heard mentioned similarly before and know other people havebeen told this at similar clinics as well . I did however, feel as if I was being backed into a corner. It was clear that his intentions were to get me to undergo a cognitive behavioural therapy and/or graded exercisetherapy . I managed to quickly got any thoughts are graded exercise therapy to rest after stating that I thought it was too much risk to my health . He then turned his attention back toCBT.
I try my best to remain strong about illness related things that deep down a big part of the grief process for me has involved? So. Question myself repeatedly about whether or not what I'm experiencing is true whether anything I am doing has any bearing on the end result of my impairments , and whether I am doing the right thing in terms of self management.
The more he spoke at me, the more grounds down Ken, and also the more fatigued I became which meant I felt as if I had no sense to fight. The consultant was nice in his demeanour; this actually made things worse! In hindsight, it was all quite manipulative. It was repeatedly implied that if I am to go see T then this will be a cure. He spoke of other people who were also in wheelchairs and one lady in particular you apparently after CBT was able to stand and walk again because she learns what the triggers were . Apparently as soon as she started think thinking of the difficult thing that had caused her mental state to cause cf S, she immediately started having symptoms again and was unable to walk. The consultant asked how I could believe that this illness dance not have the psychological component switch the only thing I can say is that perhaps for these people there was a psychological component that from me, I do not believe there is!
Having any major life events, including a chronic illness is going to have an effect on your psychological well-being. This is not the same as chronic than being psychological, and I am fed up of being made to feel as if acknowledging this (which in my eyes is very important in terms of the grief process ) means acknowledging that your illness has a psychological component. There is an important interaction between the two, but this is not the same as cause and effect.
I am conscious that I am waffling at this point! However, this was very frustrating and so in some ways it is hard not to! Nonetheless, I will try and summarise a little better.
The doctor that I just saw gave many bits of 'evidence, but apparently proved that not only was this a physiological illness but that's the only way of treating it is actually the psychological treatments.
These evidences for this included that all cells in the body and brain come from the same original song and that's how can we define their mind and body divides and that's how could an illness effort purely physical. Also, that mental state has a big impact on the new system and so this improving the mental state will make the problems reverse and thus you will get better.
Apparently physiological treatments can only provide a patch over the problems and only psychological treatments such as cognitive behavioural therapy will be able to cure your illness. It is important to note at this point that he gave no mention of any physiological treatment at all. Whilst he acknowledged that there was a shame that was physical cure, you did not acknowledged that there was any need for one.
I can now see many faults in all of his arguments , but at the time this was a lot more difficult.
The end result of this appointment was me being backed into a corner and say that I would consider CBT and let him know. I was very much made to feel that I would not be offered any other treatments for my symptoms unless I was happy to comply with nice guidelines treatment. It was also implied that complying was synonymous with recovery, and that if I was not recovering that meant I must not be comply . Thankfully, just as I was leaving the waiting room I was told that he would forward my referral for a symptom-based treatments. I was not told what these were! All this of course, just as he shook my hand and told me it was nice to meet me and once again I was a very nice gentleman. This, along with telling me I was an intelligent guy formed a large part of his demeanour in the appointment.
I think it is incredibly unfair, to put people's health in danger by suggesting treatments that are widely discouraged by nearly all M.E charities . It is also completely unfair to give people false hope of recovery. I am sure some people do improve with these therapies , however in the grand scheme of things there are not many and it is misleadingto tell patients (as this consultant did to me) that the U.K.'s treatments are the only ones in the world that seemed to work.
So, after that appointment I guess I'm not any further forward aside from maybe (because it was never discussed fully) I will end up with a diagnosis of M.E CFS. Other than that, I now just have the option between undergoing therapy that could make me physically worse or alter my grieving process, or arguing it out with the M.E/CFS team and my GP that this treatment is unsuitable, pointless, a waste of my time and their resources as well as being potentially dangerous. This will no doubt have another impact on my medical notes in the future. Fun times!
This week I saw a chronic fatigue syndrome clinic. This is the second time I have seen such a service that my first time at this particular one.
The experience was… Interesting.
The first thing that happened was that when I arrived and turned the corner into the consultants were in the consultant said oh my goodness... This didn't strike me as a particularly positive start to be appointment to be honest. The consultant had some very interesting ideas about what causes chronic fatigue syndrome or M.E as it is preferred to be called by sufferers. The appointment lasted around one hour and I felt as if I was being talked that for the entire time,with no attempts to learn how my illness facts, what symptoms Et cetera.
The consultants series on M.E/CFS word that it takes three mechanisms to cause M.E/CFS to happen. In his opinion these were as follows;
One. The genetic predisposition to the conviction.
Two. A trigger for example a major life events, a virus, another illness or et cetera.
Three. Particular mental state was he called it a 'fertile mind. . .
I tried to bite my tongue . I completely disagree with this theory, which I have heard mentioned similarly before and know other people havebeen told this at similar clinics as well . I did however, feel as if I was being backed into a corner. It was clear that his intentions were to get me to undergo a cognitive behavioural therapy and/or graded exercisetherapy . I managed to quickly got any thoughts are graded exercise therapy to rest after stating that I thought it was too much risk to my health . He then turned his attention back toCBT.
I try my best to remain strong about illness related things that deep down a big part of the grief process for me has involved? So. Question myself repeatedly about whether or not what I'm experiencing is true whether anything I am doing has any bearing on the end result of my impairments , and whether I am doing the right thing in terms of self management.
The more he spoke at me, the more grounds down Ken, and also the more fatigued I became which meant I felt as if I had no sense to fight. The consultant was nice in his demeanour; this actually made things worse! In hindsight, it was all quite manipulative. It was repeatedly implied that if I am to go see T then this will be a cure. He spoke of other people who were also in wheelchairs and one lady in particular you apparently after CBT was able to stand and walk again because she learns what the triggers were . Apparently as soon as she started think thinking of the difficult thing that had caused her mental state to cause cf S, she immediately started having symptoms again and was unable to walk. The consultant asked how I could believe that this illness dance not have the psychological component switch the only thing I can say is that perhaps for these people there was a psychological component that from me, I do not believe there is!
Having any major life events, including a chronic illness is going to have an effect on your psychological well-being. This is not the same as chronic than being psychological, and I am fed up of being made to feel as if acknowledging this (which in my eyes is very important in terms of the grief process ) means acknowledging that your illness has a psychological component. There is an important interaction between the two, but this is not the same as cause and effect.
I am conscious that I am waffling at this point! However, this was very frustrating and so in some ways it is hard not to! Nonetheless, I will try and summarise a little better.
The doctor that I just saw gave many bits of 'evidence, but apparently proved that not only was this a physiological illness but that's the only way of treating it is actually the psychological treatments.
These evidences for this included that all cells in the body and brain come from the same original song and that's how can we define their mind and body divides and that's how could an illness effort purely physical. Also, that mental state has a big impact on the new system and so this improving the mental state will make the problems reverse and thus you will get better.
Apparently physiological treatments can only provide a patch over the problems and only psychological treatments such as cognitive behavioural therapy will be able to cure your illness. It is important to note at this point that he gave no mention of any physiological treatment at all. Whilst he acknowledged that there was a shame that was physical cure, you did not acknowledged that there was any need for one.
I can now see many faults in all of his arguments , but at the time this was a lot more difficult.
The end result of this appointment was me being backed into a corner and say that I would consider CBT and let him know. I was very much made to feel that I would not be offered any other treatments for my symptoms unless I was happy to comply with nice guidelines treatment. It was also implied that complying was synonymous with recovery, and that if I was not recovering that meant I must not be comply . Thankfully, just as I was leaving the waiting room I was told that he would forward my referral for a symptom-based treatments. I was not told what these were! All this of course, just as he shook my hand and told me it was nice to meet me and once again I was a very nice gentleman. This, along with telling me I was an intelligent guy formed a large part of his demeanour in the appointment.
I think it is incredibly unfair, to put people's health in danger by suggesting treatments that are widely discouraged by nearly all M.E charities . It is also completely unfair to give people false hope of recovery. I am sure some people do improve with these therapies , however in the grand scheme of things there are not many and it is misleadingto tell patients (as this consultant did to me) that the U.K.'s treatments are the only ones in the world that seemed to work.
So, after that appointment I guess I'm not any further forward aside from maybe (because it was never discussed fully) I will end up with a diagnosis of M.E CFS. Other than that, I now just have the option between undergoing therapy that could make me physically worse or alter my grieving process, or arguing it out with the M.E/CFS team and my GP that this treatment is unsuitable, pointless, a waste of my time and their resources as well as being potentially dangerous. This will no doubt have another impact on my medical notes in the future. Fun times!
Friday 29 March 2013
been a while
The main reason I haven't written in this blog very much is because I've generally felt as if I would end up writing hte same thing over and over again. Grief is hard. Justifying grief to yourself is hard. Grief for the things I love but am unable to do, grief for the future that never was, grief for the future that remains uncertain.
I am trying to get back in to music at the moment but it feels painfully slow. I want to write and play music in any way but what I want to do most of all is play my trumpet. It's my instrument and I can't accept that it is gone from my life.
I'm finding it hard to convince myself that I am doing things right. I don't know if that's part of hte grief. Maybe if I can convince myself that I am doing something wrong, then I will eventually put it right and it will be fixed - rather than accepting that this is how things are right now and for as long as my body decides this is how things are going to be.
I have experienced some progression recently in my hands and arms. It is hard to know what has caused this though it is possible that getting an ipad was the tipping point. Apparently too much touch screen is bad! It has been happening for a while though.
I am yet again facing hte decision of do less vs more help. It's not so much about pride for me. I see others around me who need help and do believe they should take it and fight for it. For myself though, I look at others with an ME/CFS diagnosis (which remains my most probably diagnosis) and see them trying to get 'better' - attempting to cut back activity to improve their health. I try instead to maximise what I have right now. I stay within the remits of my health but don't follow the '50% rule' (whereby you do 50% less than you could do in order to allow your body to heal and/or not damage itself). But, I don't see how I could live like that. I could never shower (even with assistance), would never leave the house, would use the computer minimally, rarely if ever leave bed etc. I don't understand how I would 'choose' that life for myself. That life should never be a choice, only ever a necessity.
I think I need to trust myself more.
I do know for sure that I need to get better at self care. For now I have 3 main things that can be done/need doing.
- accept more help with personal care
- improve sleep patterns
- decrease time talking/actively hanging out with people - even PAs and partner.
I'm hoping the above will save enough reserves that I can use my resources for the activities that matter most.
I am trying to get back in to music at the moment but it feels painfully slow. I want to write and play music in any way but what I want to do most of all is play my trumpet. It's my instrument and I can't accept that it is gone from my life.
I'm finding it hard to convince myself that I am doing things right. I don't know if that's part of hte grief. Maybe if I can convince myself that I am doing something wrong, then I will eventually put it right and it will be fixed - rather than accepting that this is how things are right now and for as long as my body decides this is how things are going to be.
I have experienced some progression recently in my hands and arms. It is hard to know what has caused this though it is possible that getting an ipad was the tipping point. Apparently too much touch screen is bad! It has been happening for a while though.
I am yet again facing hte decision of do less vs more help. It's not so much about pride for me. I see others around me who need help and do believe they should take it and fight for it. For myself though, I look at others with an ME/CFS diagnosis (which remains my most probably diagnosis) and see them trying to get 'better' - attempting to cut back activity to improve their health. I try instead to maximise what I have right now. I stay within the remits of my health but don't follow the '50% rule' (whereby you do 50% less than you could do in order to allow your body to heal and/or not damage itself). But, I don't see how I could live like that. I could never shower (even with assistance), would never leave the house, would use the computer minimally, rarely if ever leave bed etc. I don't understand how I would 'choose' that life for myself. That life should never be a choice, only ever a necessity.
I think I need to trust myself more.
I do know for sure that I need to get better at self care. For now I have 3 main things that can be done/need doing.
- accept more help with personal care
- improve sleep patterns
- decrease time talking/actively hanging out with people - even PAs and partner.
I'm hoping the above will save enough reserves that I can use my resources for the activities that matter most.
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