I realise that I have never really explained why this blog is called 'Real life Sisyphus'.
I have always been interested in the ancient Romans and Greeks, particularly ancient Romans. Their time period was filled with hedonistic and awful behaviour, but then the same could be said for today's world too. Apart from its downsides though it's a time period that is in a lot of ways totally different and a lot of ways totally similar to today. People at that time appeared to greatly value knowledge and the pursuit of it. They had people who would spend their time simply gaining as much knowledge as they could. I suppose the existence of slaves means that they would actually have time for such a thing but then again, as a student this is basically how I spend my time too.
Their culture is full of myths and legends, which contain both mythical 'explanations' for how various aspects of nature came about and heroes that everyday people could aspire to. Sisyphus probably comes under neither category, where his story serves to teach a lesson, similar to the fables of today. Sisyphus as a character is referenced in a number of ancient Greek literature as a king who lied too much. His punishment from the gods was to have the task of rolling a huge boulder up a steep hill, where this boulder would never stay at the top of the hill and would instead keep falling down again. Sisyphus was then cursed with the task of struggling with this huge boulder every single day of eternity. They don't really do light punishments in ancient Greek literature, and you could debate as to how truly good those giving the punishments were, but that is the fun of studying the literature.
And so this is why Sisyphus' ordeal reminded me of CFS/ME - a daily struggle that is immense in size. It's a little pessimistic I suppose but this blog is aimed to help people understand more about this illness and many people who are ill will not let on quite how horrible they are feeling as they feel that continually reminding people that yes they are STILL ill bores and annoys people. So please excuse the pessimism, it's for a purpose.
Wednesday, 16 April 2014
Wednesday, 9 April 2014
Jupiter
I wondered slowly into the room unsure if this part of the hospital really was the place I had travelled 40 miles to be. The whole building looked as if it had been forgotten, which I suppose was appropriate considering many of the patients in it felt the same. The room was filled with chairs, half of which were filled with nervous and expectant people. Some hobble in as if they are young people trapped inside an old person's body while some walk in normally but warily. One woman wears sunglasses and some lean against the wall.
Three women stood at the front of the room and as a natural hush fell on the people in it, one of the women introduced themselves. After further introductions and housekeeping two disappear to the back of the room and the third begins to describe a complex biological system. Everyone listens with interest, some also with wariness as she talks about each section of an ever-increasing diagram. The pens run out as she scribbles in unreadable handwriting on a whiteboard. Then comes the turn of the second woman. She is a clinical psychologist and starts her section by asking those in the room what they have to deal with on a daily basis.
The people in the room, previously supressed by uncertainty suddenly come to life and symptoms and cares are flying across the room. This is the start.
So today I went to a 'First Steps Seminar for CFS' at Sutton Hospital, marking the fifth hospital visit this year. I had no idea to expect from such a seminar and was sceptical as to its usefulness for someone like me who has had CFS/ME for almost 5 years now. As it was, it proved to be very reassuring and informative. The team came across as having integrity, care and understanding. No politicians' talk from them. One of the team described their thoughts on how CFS/ME exists and is caused. This part was new to me and so was of the greatest interest (but also because I have an interest in biology, and of course psychology). It made so much sense, and to have a biological explanation for my symptoms was reassuring because CFS/ME is often supposed to be a psychological illness. Generally, it came down to how the body reacted to stress hormones and dysregulations all over the place.
Secondly we went through common symptoms and emotions that come up in CFS/ME sufferers. The patients in the room called out symptoms as they occurred and there were many nods and sounds of agreement from the rest. The symptoms of CFS/ME are so broad, varied and confusing that it is easy to be overwhelmed by them and to wonder exactly what symptom means what. Seeing each symptom and each emotion that have taken over my life appear one by one on the whiteboard was amazing as the people around me were going through exactly the same. Not one disbelieving face was present.
This was also where the patients came to life. Each were fairly outspoken and each quite obviously had some sense of frustration - at how the medical system had previously treated them, at the lack of practical help, and the everyday struggles for some kind of existence. One person sitting behind me mentioned he had been ill for 10 years and yet here he was at a 'First Steps Seminar' at this point due to his symptoms being ignored and discarded by the medical profession. Others appeared to be newly diagnosed and in a state of panic. I remember vividly being in their place this time last year and it gave me some hope that I had gone through that phase and worked some things out for myself. I still wouldn't say I'm doing well but I have come a very long way.
This post is about me discussing a more positive experience, and although the team will probably not see this post I would still like to praise their handling of the seminar and the obvious hope they have given to a handful of people just like me. My criticism here is not of the seminar or the team whatsoever, but of the system generally. You have to have symptoms for at least 4 months before a diagnosis can be given and so that it 4 months of real struggle before any help can even begin to go your way. Some people like me and the man behind me have waited years for help. Everyone in the room was dissatisfied, anxious and frustrated. The CFS/ME itself is only half the battle.
And I have named this post Jupiter as this is what was playing on the radio as well travelled home from another hospital appointment yesterday. It's a famous classical music piece by Holst, and is entitled 'Jupiter, bringer of Jollity' so I thought it was appropriate.
Three women stood at the front of the room and as a natural hush fell on the people in it, one of the women introduced themselves. After further introductions and housekeeping two disappear to the back of the room and the third begins to describe a complex biological system. Everyone listens with interest, some also with wariness as she talks about each section of an ever-increasing diagram. The pens run out as she scribbles in unreadable handwriting on a whiteboard. Then comes the turn of the second woman. She is a clinical psychologist and starts her section by asking those in the room what they have to deal with on a daily basis.
The people in the room, previously supressed by uncertainty suddenly come to life and symptoms and cares are flying across the room. This is the start.
So today I went to a 'First Steps Seminar for CFS' at Sutton Hospital, marking the fifth hospital visit this year. I had no idea to expect from such a seminar and was sceptical as to its usefulness for someone like me who has had CFS/ME for almost 5 years now. As it was, it proved to be very reassuring and informative. The team came across as having integrity, care and understanding. No politicians' talk from them. One of the team described their thoughts on how CFS/ME exists and is caused. This part was new to me and so was of the greatest interest (but also because I have an interest in biology, and of course psychology). It made so much sense, and to have a biological explanation for my symptoms was reassuring because CFS/ME is often supposed to be a psychological illness. Generally, it came down to how the body reacted to stress hormones and dysregulations all over the place.
Secondly we went through common symptoms and emotions that come up in CFS/ME sufferers. The patients in the room called out symptoms as they occurred and there were many nods and sounds of agreement from the rest. The symptoms of CFS/ME are so broad, varied and confusing that it is easy to be overwhelmed by them and to wonder exactly what symptom means what. Seeing each symptom and each emotion that have taken over my life appear one by one on the whiteboard was amazing as the people around me were going through exactly the same. Not one disbelieving face was present.
This was also where the patients came to life. Each were fairly outspoken and each quite obviously had some sense of frustration - at how the medical system had previously treated them, at the lack of practical help, and the everyday struggles for some kind of existence. One person sitting behind me mentioned he had been ill for 10 years and yet here he was at a 'First Steps Seminar' at this point due to his symptoms being ignored and discarded by the medical profession. Others appeared to be newly diagnosed and in a state of panic. I remember vividly being in their place this time last year and it gave me some hope that I had gone through that phase and worked some things out for myself. I still wouldn't say I'm doing well but I have come a very long way.
This post is about me discussing a more positive experience, and although the team will probably not see this post I would still like to praise their handling of the seminar and the obvious hope they have given to a handful of people just like me. My criticism here is not of the seminar or the team whatsoever, but of the system generally. You have to have symptoms for at least 4 months before a diagnosis can be given and so that it 4 months of real struggle before any help can even begin to go your way. Some people like me and the man behind me have waited years for help. Everyone in the room was dissatisfied, anxious and frustrated. The CFS/ME itself is only half the battle.
And I have named this post Jupiter as this is what was playing on the radio as well travelled home from another hospital appointment yesterday. It's a famous classical music piece by Holst, and is entitled 'Jupiter, bringer of Jollity' so I thought it was appropriate.
Wednesday, 2 April 2014
Turning point
I haven't written on this blog for quite a while now. This is because it was pointed out to me that some of what I had written was inappropriate and hurtful. I have since deleted the particular posts (although if I have missed any, then sorry) and have said to myself that should I return to the blog that it would take a turn back to the purpose it was intended for - to educate and inform people what it is like to have CFS/ME - and not to be the place I turned to let out my feelings when at my worst. Some people have suggested I step away from the blog, but others have suggested I keep writing and I have thought about this a lot. I have decided to return, but to set a rule to myself that I will never write when I know I'm at my most poorly, and let out any feelings constructively way before they get to the point of destruction.
And so, to start afresh slightly today's post is going to be on things that have helped me with my symptoms and their consequences. I take so many supplements and medications that it is probably a bit difficult to say exactly what makes the most difference, but put together they seem to work. Working out which is most effective scientifically is not possible right now as it may require removing an important medication from my collection and may send me back into a relapse, which I can't afford right now!
And so firstly, here are some supplements that I take:
And so, to start afresh slightly today's post is going to be on things that have helped me with my symptoms and their consequences. I take so many supplements and medications that it is probably a bit difficult to say exactly what makes the most difference, but put together they seem to work. Working out which is most effective scientifically is not possible right now as it may require removing an important medication from my collection and may send me back into a relapse, which I can't afford right now!
And so firstly, here are some supplements that I take:
- vitamin D - this was suggested by a rheumatologist I saw last summer who found that I had low vitamin D levels in a blood test. Not necessarily related to CFS/ME but it has been linked to muscle function so maybe it has some importance.
- l-carnitine - this supplement was recommended to me as one that may or may not help. I'm not entirely sure what it does, but I think it may again have a link to muscles.
- co-enzyme Q10 - this supplement was recommended to me by a CFS/ME consultant on the NHS but I don't think it has any clinical backing. It seems to have had some effects though! Possibly linked to the production of energy in cells?
- avoiding dairy food - not technically a supplement, more of a subtraction, but it's to do with diet so it's going here. I haven't eaten dairy since I first got ill almost 5 years ago. It made such a difference! I am mildly lactose intolerant anyway and somehow the CFS/ME exaggerated it so this was definitely a good move.
- hydroxyzine - (brand name Atarax). This is an antihistamine but I take it because it has a side effect of drowsiness, with the aim of it helping me to sleep. It doesn't make me drowsy but it does make me feel more relaxed and has made so much difference to my sleeping patterns.
- vitamin b12 - I have put this here because I have it administered by injection by a nurse instead of taking tablets. These have been taken weekly so far but I think that is due to go down to fortnightly. I believe these have helped a lot too, but having no original b12 deficiency, their prescription was a little unorthodox.
- focus on keeping calm - any kind of stress or excitement can increase symptoms and so I focus throughout life on keeping calm and in control. Not easy of course but recognition of these emotions in itself makes a difference.
- limited exercise - I hate this one, I would love to go running but it has made such a difference to limit my exercise to what my body can do without complaining.
- proper rest breaks - again, I don't like this either because at 20 I want to be out there doing things but consciously stopping for breaks gets me through the day.
- making all activity more energy efficient - this involves some conscious thought and self awareness, and so maybe talking it over with a friend or family member may be helpful. What can I do to make that activity less effortful? (e.g. sitting down while cooking).
Tuesday, 4 February 2014
"When I'm on my knees, I'll still believe"
These last few weeks I have ventured to join a student study group that is run by a nearby church, not the church I usually go to though. They haven't felt betrayed and have accepted me into the group, much to their credit.
So far I have been to two bible studies, both on separate parts of Ephesians. Today's study focussed on the first half of Ephesians 3, and Paul's (previously Saul) calling as a Christian. This study has demonstrated to me that the path that you think you should be taking, just by assessing yourself and knowing your skills, isn't necessarily the path God has called you for. Just as Saul thought that routing out all the Christians and having them killed was the best way to serve God, I may have a completely wrong view of my direction and skills (I haven't been nor plan to kill anyone though!).
This has helped me in the face of so many limitations to know that even if you don't have the skills or physical strength for what you think you should be doing, God will give you a path you can do, and give you what's necessary to complete it. There are so many things I would like to do for God right now, and it has puzzled me that God would prevent me from doing these things for him but this says to me that it's OK to not be doing these things because God will provide some even more amazing things for me to do that will help more people and will give him more glory.
It also says to me that I don't have to do this alone. Sickness induces such immense loneliness in people, and chronic illness simply equals chronic loneliness. But God has commanded us to not fear or be anxious because He has said so many times that He will be with us through absolutely everything, and that we are capable of anything because He can equip us to complete anything.
"I can do all things through Christ who gives me strength".
So far I have been to two bible studies, both on separate parts of Ephesians. Today's study focussed on the first half of Ephesians 3, and Paul's (previously Saul) calling as a Christian. This study has demonstrated to me that the path that you think you should be taking, just by assessing yourself and knowing your skills, isn't necessarily the path God has called you for. Just as Saul thought that routing out all the Christians and having them killed was the best way to serve God, I may have a completely wrong view of my direction and skills (I haven't been nor plan to kill anyone though!).
This has helped me in the face of so many limitations to know that even if you don't have the skills or physical strength for what you think you should be doing, God will give you a path you can do, and give you what's necessary to complete it. There are so many things I would like to do for God right now, and it has puzzled me that God would prevent me from doing these things for him but this says to me that it's OK to not be doing these things because God will provide some even more amazing things for me to do that will help more people and will give him more glory.
It also says to me that I don't have to do this alone. Sickness induces such immense loneliness in people, and chronic illness simply equals chronic loneliness. But God has commanded us to not fear or be anxious because He has said so many times that He will be with us through absolutely everything, and that we are capable of anything because He can equip us to complete anything.
"I can do all things through Christ who gives me strength".
Sunday, 22 December 2013
Bit of an upward turn.
After a few more negative posts, I feel it is time for a more positive note. It is almost Christmas after all!!
I was able to get an appointment with a CFS/ME specialist last Tuesday (after pushing for it with my GP) and what a difference it has made! For the first time when speaking to a health professional about my condition, I felt they knew more about it than I did! He asked relevant questions, and practical things that I had prepared to ask his opinions about (such as special exam arrangements for university) he asked me about first, demonstrating that he had a knowledge of the sorts of things I could need help with. He also suggested a number of other supplements, as well as setting up a series of vitamin B injections, which I have heard from some people to be beneficial.
I could still find fault with this system I'm sure but today I won't because of the relief I feel after finally getting some help and advice from someone who understands my condition!
In other news, my university term ended just over a week ago and I am firmly back home preparing for Christmas. I've managed to do too much shopping with Mum but it has been so nice being home that I feel it's worth it. I feel a little more optimistic about next term, having just about managed this last one but there are maybe some aspects I need to work on, such as organisation, as I have 6 deadlines next term, although I hope to have 2 of those completed before I go back in January. Maybe 2014 will hold better things than 2013.
I was able to get an appointment with a CFS/ME specialist last Tuesday (after pushing for it with my GP) and what a difference it has made! For the first time when speaking to a health professional about my condition, I felt they knew more about it than I did! He asked relevant questions, and practical things that I had prepared to ask his opinions about (such as special exam arrangements for university) he asked me about first, demonstrating that he had a knowledge of the sorts of things I could need help with. He also suggested a number of other supplements, as well as setting up a series of vitamin B injections, which I have heard from some people to be beneficial.
I could still find fault with this system I'm sure but today I won't because of the relief I feel after finally getting some help and advice from someone who understands my condition!
In other news, my university term ended just over a week ago and I am firmly back home preparing for Christmas. I've managed to do too much shopping with Mum but it has been so nice being home that I feel it's worth it. I feel a little more optimistic about next term, having just about managed this last one but there are maybe some aspects I need to work on, such as organisation, as I have 6 deadlines next term, although I hope to have 2 of those completed before I go back in January. Maybe 2014 will hold better things than 2013.
Friday, 6 December 2013
"So when your hope's on fire, but you know your desire..."
I'm a big Mumford and Sons fan, but unfortunately their songs aren't the most cheery. I felt that this quote fitted my predicament right now, but unfortunately I have no opportunity to be a "Hopeless Wanderer" - I don't need anyone to "hold me fast" as I've got an illness that does that anyway.
What on earth to do with my life??! I am faced with such uncertainty that I have forgotten how to plan. Events come and if I'm not up to it, they go unnoticed. As do I. And at the end of the day, what can I do with my life? All my dreams and hopes are being destroyed, and it's the little things that keep me reminded of my loss. I used to love singing. I was never that great but I loved singing at church so I could really worship God but now I sing one hymn at church and that's me exhausted. Music seems to require such stamina, and I really don't have any.
I had always thought that university and a fantastic, satisfying job were in store for me, but now I have no idea. Everything I can think of appears unattainable. And this isn't just me being unduly pessimistic - this is the reality. I want something to get me out of the bed in the morning, to make me hope for the future. So that's my desire, a bit vague I know. That used to be achieved by my degree but I'm not sure it is any more.
What on earth to do with my life??! I am faced with such uncertainty that I have forgotten how to plan. Events come and if I'm not up to it, they go unnoticed. As do I. And at the end of the day, what can I do with my life? All my dreams and hopes are being destroyed, and it's the little things that keep me reminded of my loss. I used to love singing. I was never that great but I loved singing at church so I could really worship God but now I sing one hymn at church and that's me exhausted. Music seems to require such stamina, and I really don't have any.
I had always thought that university and a fantastic, satisfying job were in store for me, but now I have no idea. Everything I can think of appears unattainable. And this isn't just me being unduly pessimistic - this is the reality. I want something to get me out of the bed in the morning, to make me hope for the future. So that's my desire, a bit vague I know. That used to be achieved by my degree but I'm not sure it is any more.
Tuesday, 3 December 2013
Acceptance
These last few weeks leading up to the Christmas holidays have led to me asking a few big questions about my life. Do I want to stay at university? Should I stay at university? And then the opposite questions which should be asked, as I have found that sometimes the answers don't match up.
Do I want to stay at university? - I think yes.
Do I want to quit university? - Also, I think yes.
But do I want to leave university? - Not really.
The estate agent who we rent our student house from is asking us to confirm whether we will be staying in the house next year. The first step was deciding whether to stay at the house here or go back into halls, as that choice is basically friends vs practicality and better health. I decided on the house, feeling that having friends nearby was a useful thing but the decision wasn't an easy one.
I then realised why the decision wasn't easy - I wasn't sure about staying at university at all. I was meant to sign a contract for the house last Saturday and I couldn't even make it through the door of the estate agent before I freaked out.
Which has led me to think about acceptance. Acceptance of situations is thought of as a healthy step towards feeling positive about things and being grateful for the life you've been given. I have been told various things from well-meaning people about their opinions surrounding acceptance. Some people say I shouldn't accept that I am very unlikely to recover, and some say that too much acceptance can be a bad thing.
But how am I meant to move on with my life without understanding and accepting my state of health? Maybe I will get better, but realistically can I plan for the >5% possibility? I have to think practically, which isn't something I really like doing.
I don't feel the unbearable fatigue any more than makes me unable to move, but I think I have just gotten used to it as all the symptoms I have had in the past only when I have severely over-done things are now constant instead of rare and I have developed new symptoms. Is this acceptance? My body has acclimatised and now all these aches and pains and weaknesses and everything else are part of life. I feel so old at 19, or at least my body believes it is way beyond the teenage years.
I also am amazed to think that it has been almost 11 months since my relapse (that I haven't recovered from by the way!). And that overall I have had CFS/ME for 4 1/2 years. That's crazy.
Do I want to stay at university? - I think yes.
Do I want to quit university? - Also, I think yes.
But do I want to leave university? - Not really.
The estate agent who we rent our student house from is asking us to confirm whether we will be staying in the house next year. The first step was deciding whether to stay at the house here or go back into halls, as that choice is basically friends vs practicality and better health. I decided on the house, feeling that having friends nearby was a useful thing but the decision wasn't an easy one.
I then realised why the decision wasn't easy - I wasn't sure about staying at university at all. I was meant to sign a contract for the house last Saturday and I couldn't even make it through the door of the estate agent before I freaked out.
Which has led me to think about acceptance. Acceptance of situations is thought of as a healthy step towards feeling positive about things and being grateful for the life you've been given. I have been told various things from well-meaning people about their opinions surrounding acceptance. Some people say I shouldn't accept that I am very unlikely to recover, and some say that too much acceptance can be a bad thing.
But how am I meant to move on with my life without understanding and accepting my state of health? Maybe I will get better, but realistically can I plan for the >5% possibility? I have to think practically, which isn't something I really like doing.
I don't feel the unbearable fatigue any more than makes me unable to move, but I think I have just gotten used to it as all the symptoms I have had in the past only when I have severely over-done things are now constant instead of rare and I have developed new symptoms. Is this acceptance? My body has acclimatised and now all these aches and pains and weaknesses and everything else are part of life. I feel so old at 19, or at least my body believes it is way beyond the teenage years.
I also am amazed to think that it has been almost 11 months since my relapse (that I haven't recovered from by the way!). And that overall I have had CFS/ME for 4 1/2 years. That's crazy.
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