This blog has been very helpful to me during the worst times of my illness. It has been there when I was feeling like my life was going nowhere and when the ignorance of others (particularly the medical profession) has been overwhelming. While I am not cured I am a great deal better and am nearing the end of my degree which means that maybe it is time to say goodbye to my blog. I may one day need to return to Real Life Sisyphus to help me get through new life challenges created by having a chronic illness but for now I feel the need to call time on this blog. I hope that it has helped others understand the life of those with CFS/ME or help sufferers understand their illness better. Very little information is out there and the honesty of other blogs has helped me very much to understand where I stood and how to manage my symptoms.
I would like to end on a cycle that I have realised as a result of a lecture recently on chronic pain (in the context of a clinical psychology module).
It appears that chronic pain is viewed in a similar way to chronic fatigue by the medical profession. Chronic pain is generally considered to be pain that is long lasting but without the presence of anything that actually causes pain. While the causes of physical pain are complex and very little is understood, generally the view is that chronic pain is caused by a person being afraid of using a particular muscle or joint because they fear the consequent pain - which in turn leads to the muscle or joint stiffening and becoming painful. Psychologists believe this leads to a vicious cycle in which the patient doesn't use their painful muscle or joint because they think it will hurt, causing it to hurt, causing them to not use it and so on.
I know very little about this cycle, definitely not enough to comment on how accurate it is but I do know two things. The first is that if you look at research into treatments for chronic pain based on this theory, they generally don't work. The second is that this sounds remarkably similar to the medical profession's views on chronic fatigue: fatigue is caused by not exercising due to the fear of exercising, not exercising leads to muscle atrophy and fatigue, fatigue leads to not exercising and so on. I know this second view to be rubbish, partly because treatments for fatigue based on this paradigm also don't work, and partly because I have attempted to push through my fatigue before (believing it myself to be simply muscle atrophy and laziness) which made my illness much worse.
This perspective of the medical profession leads to the belief that CFS/ME sufferers have 'untrue' and 'unhelpful' beliefs concerning their fatigue such as 'All doctors are arrogant/lazy (insert your favourite adjective here!)', 'I feel horrible so something must be really wrong', 'Doctors should work to cure me because I am sick'. Personally I think all of those, maybe I am crazy really.
But on the other hand, if doctors have this perspective they will talk to patients in a way that actually encourages these thoughts in some cases. I have had doctors not talk straight with me about my symptoms regularly which confirms the first belief for example. Where doctors believe that you are almost making it all up, they are naturally going to talk to you in a condescending way and not take you entirely seriously, despite their best efforts to appear sincere. This behaviour then causes the "untrue" and "unhelpful" beliefs, confirming the doctor's perspective of the patient. So maybe I'm not crazy? Maybe my "unhelpful" beliefs are the result of my doctor, not my illness?? My cynicism of doctors is definitely something that has developed very recently and way after my illness started.
Having said the above, I have met the odd very helpful and straight-talking doctors and medical professionals:
- my physiotherapist at my university doctors surgery, who helped me with pacing and not letting my illness hold me back
- Dr. Bansal at the Epsom and St. Helier hospital
- the CFS/ME team at Sutton Hospital
- the lovely nurses at my university doctors surgery, who have given me my B12 injections with little fuss and pain.
Thanks to all of the above, as well as the many friends and family members who have supported me during my worst times, despite many attempts to push them away through letting out my frustrations and fear. You are all amazing.
Showing posts with label Symptoms. Show all posts
Showing posts with label Symptoms. Show all posts
Tuesday, 6 January 2015
Thursday, 4 December 2014
The CFS/ME mythbuster!
There comes a time when you meet someone new when you find that they need to know that you have CFS/ME. The time that this is appropriate is not one that can be standardised. However, when that time comes there are a few frequently asked questions that I have found require a quick and effective answer. Here are a few. I hope that this may help people who both find explaining it difficult and those who find understanding it difficult.
So... what is it?
M.E. or C.F.S. (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) is a neurological condition. I like to describe it in two ways.
The first is that my muscles don't behave in the normal healthy way. By this I mean that the way your body reacts usually when you exercise (such as a good feeling after exercise, the building up of stamina etc.) don't happen. Instead I feel really sick after exercise and I can't build up stamina. I can do the same gentle exercise every day and it get harder rather than easier.
The second is that my body overreacts to everything (it's a bit of a diva!). This includes exercise, but also stress, certain food, getting too hot or cold, anything really. Personally I don't eat dairy and I explain that this is the reason why - before I developed CFS/ME I could eat dairy more or less OK.
This doesn't encompass everything though, some symptoms such as dizziness, concentration problems and memory problems are not included really.
So to summarise:
- It's a neurological condition (caused by the nervous system)
- My muscles don't respond the right way to exercise of any kind or intensity
- My body overreacts to minor stressors that would normally be dealt with without you noticing.
How long have you had it?
Obviously this varies from person to person but in my case it has not been the same severity over time. I don't know if people assume it's the same all the time?
I say I have had CFS/ME for 5 1/2 years now on and off, but I was only diagnosed last year. I do have good days and bad days though and say if that particular day is good or bad.
Can you treat it?
There is no standard treatment and some treatments work well in some people and not in others.
I personally am given vitamin B12 injections to help with the dizziness, fatigue and concentration as well as antihistamines to make me drowsy at bed time.
Some people also take food supplements such as CoEnzyme Q10.
The best way to manage it is to pace myself and to balance work and social time with rest. The best form of rest is lying down in bed doing nothing so sitting in a chair is tiring.
How is it diagnosed? How do you know you have CFS/ME and not something else, or am just tired like everyone else?
Unfortunately there is no specific test that shows you have CFS/ME. Instead there are symptom criteria that you have to meet in order to get a diagnosis. It is also a diagnosis of exclusion in that doctors have to make sure you don't have another illness that has similar symptoms, such as lupus, anaemia or thyroid problems.
I know that I have CFS/ME because I fit the criteria exactly. I know this is not usual tiredness because I was healthy beforehand and I know what it is to be exhausted in the usual way! My instinct is to push through (although I may moan about it while pushing through!) but I tried that since being ill and it made things much much worse rather than better. How my body feels and reacts to things is like nothing I have ever experienced before. I do not feel tired most of the time as I can't physically do enough to get tired. That is why I try to describe it as my muscles not working as that is the closest sensation I can think of.
At worst, any muscle use hurts very much, even moving my eyes or fingers.
Are you sure this isn't something else? Maybe you have depression?
I have come to realise that maybe CFS/ME can present itself in a way that looks like depression to others but it is definitely very different.
In depression, the motivation to get up and move and to get involved in things is gone.
In CFS/ME the motivation is very much there but the body physically can't do it.
In depression things that you used to enjoy have less or no enjoyment than before.
In CFS/ME you often can't do the things you enjoyed. You would still enjoy them if you could actually do them! Although sometimes the enjoyment is reduced because of the frustration or the physical pain of doing them.
In depression you spend a lot of time alone in bed because your motivation to get up is lacking.
In CFS/ME you spend a lot of time alone in bed because you are too weak to leave or because doing so helps you manage your symptoms.
Maybe you're just unfit. Come out for a walk with me, that will make you feel better.
Apart from this being a highly annoying and frustrating thing to say to someone with CFS/ME... as previously said the muscles can't function well enough to gain stamina through exercise. However this is the view of some doctors - that patients are just unfit and so scared to exercise because of the negative results of exercising with no muscle stamina.
I can say from personal experience this is not true. When I relapsed in first year I thought that I must just be unfit and so attempted to build up my fitness through gentle walking, by pushing through when I didn't feel like exercising. All this achieved was to greatly increase my suffering. Also, I relapsed pretty much overnight (I assume I had pushed my body just that little too far and it gave up). The day before I had been running around perfectly fine.
Is it contagious?
No. It has been linked to a virus, but from what I have researched this seems to be due to the body's overreaction to the virus or something along those lines. There is no way of transmitting it from person to person. Any genetic link is yet to be investigated though.
Would energy drinks or coffee help?
Unfortunately no, I have tried. All they achieve is a massively high heart rate!
There, I hope I have busted some myths about CFS/ME!!
So... what is it?
M.E. or C.F.S. (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) is a neurological condition. I like to describe it in two ways.
The first is that my muscles don't behave in the normal healthy way. By this I mean that the way your body reacts usually when you exercise (such as a good feeling after exercise, the building up of stamina etc.) don't happen. Instead I feel really sick after exercise and I can't build up stamina. I can do the same gentle exercise every day and it get harder rather than easier.
The second is that my body overreacts to everything (it's a bit of a diva!). This includes exercise, but also stress, certain food, getting too hot or cold, anything really. Personally I don't eat dairy and I explain that this is the reason why - before I developed CFS/ME I could eat dairy more or less OK.
This doesn't encompass everything though, some symptoms such as dizziness, concentration problems and memory problems are not included really.
So to summarise:
- It's a neurological condition (caused by the nervous system)
- My muscles don't respond the right way to exercise of any kind or intensity
- My body overreacts to minor stressors that would normally be dealt with without you noticing.
How long have you had it?
Obviously this varies from person to person but in my case it has not been the same severity over time. I don't know if people assume it's the same all the time?
I say I have had CFS/ME for 5 1/2 years now on and off, but I was only diagnosed last year. I do have good days and bad days though and say if that particular day is good or bad.
Can you treat it?
There is no standard treatment and some treatments work well in some people and not in others.
I personally am given vitamin B12 injections to help with the dizziness, fatigue and concentration as well as antihistamines to make me drowsy at bed time.
Some people also take food supplements such as CoEnzyme Q10.
The best way to manage it is to pace myself and to balance work and social time with rest. The best form of rest is lying down in bed doing nothing so sitting in a chair is tiring.
How is it diagnosed? How do you know you have CFS/ME and not something else, or am just tired like everyone else?
Unfortunately there is no specific test that shows you have CFS/ME. Instead there are symptom criteria that you have to meet in order to get a diagnosis. It is also a diagnosis of exclusion in that doctors have to make sure you don't have another illness that has similar symptoms, such as lupus, anaemia or thyroid problems.
I know that I have CFS/ME because I fit the criteria exactly. I know this is not usual tiredness because I was healthy beforehand and I know what it is to be exhausted in the usual way! My instinct is to push through (although I may moan about it while pushing through!) but I tried that since being ill and it made things much much worse rather than better. How my body feels and reacts to things is like nothing I have ever experienced before. I do not feel tired most of the time as I can't physically do enough to get tired. That is why I try to describe it as my muscles not working as that is the closest sensation I can think of.
At worst, any muscle use hurts very much, even moving my eyes or fingers.
Are you sure this isn't something else? Maybe you have depression?
I have come to realise that maybe CFS/ME can present itself in a way that looks like depression to others but it is definitely very different.
In depression, the motivation to get up and move and to get involved in things is gone.
In CFS/ME the motivation is very much there but the body physically can't do it.
In depression things that you used to enjoy have less or no enjoyment than before.
In CFS/ME you often can't do the things you enjoyed. You would still enjoy them if you could actually do them! Although sometimes the enjoyment is reduced because of the frustration or the physical pain of doing them.
In depression you spend a lot of time alone in bed because your motivation to get up is lacking.
In CFS/ME you spend a lot of time alone in bed because you are too weak to leave or because doing so helps you manage your symptoms.
Maybe you're just unfit. Come out for a walk with me, that will make you feel better.
Apart from this being a highly annoying and frustrating thing to say to someone with CFS/ME... as previously said the muscles can't function well enough to gain stamina through exercise. However this is the view of some doctors - that patients are just unfit and so scared to exercise because of the negative results of exercising with no muscle stamina.
I can say from personal experience this is not true. When I relapsed in first year I thought that I must just be unfit and so attempted to build up my fitness through gentle walking, by pushing through when I didn't feel like exercising. All this achieved was to greatly increase my suffering. Also, I relapsed pretty much overnight (I assume I had pushed my body just that little too far and it gave up). The day before I had been running around perfectly fine.
Is it contagious?
No. It has been linked to a virus, but from what I have researched this seems to be due to the body's overreaction to the virus or something along those lines. There is no way of transmitting it from person to person. Any genetic link is yet to be investigated though.
Would energy drinks or coffee help?
Unfortunately no, I have tried. All they achieve is a massively high heart rate!
There, I hope I have busted some myths about CFS/ME!!
Wednesday, 17 September 2014
The panic is back, along with the hope
So the results of the PIP assessment thankfully arrived much sooner than the actual assessment did but unfortunately they will not be giving me any benefits. This then has some negatives and some positives and as always, some frustrations.
The most frustrating thing is that when I applied, and therefore needed it most, my form was backlogged somewhere, and now that things have improved a little, suddenly I get an assessment! The positive in this is of course that I have improved and while the whole system is in my view a bit ridiculous, it does demonstrate that I have come very far in my recovery to the point where I am not sick enough for PIP.
The problem with conditions like CFS/ME is that where you have to work yourself hard to do things you have to prioritise very severely. I can just about (but with discomfort) manage most everyday necessary tasks for life, like eating and washing. But to have the energy to do all that and then enjoy other things like socialising and hobbies is something many CFS/ME sufferers lack. My hope was that the PIP money and the disabled status that comes with it would enable me to live a little more because I would not have to worry about the parts of life that most people take for granted. I would get a free bus pass for example which would mean that I could get a bus for short distances without worrying about the accumulating bus fares.
The Bible promises us that we can have life and have it to the full, which right now feels a little out of reach. I have to have faith that God really can live up to this promise.
I am also currently freaking out a bit about going back to university. The fear and anxiety is much, much less than last year but it's still there, making all my symptoms worse. This is very inconvenient as I have loads to do before I head back. The end is in sight though. I had been thinking about quitting or going to a different university to go part time but I feel that this is something I need to do. I would liked to have taken a year out previously to recover and sort out appropriate accommodation but I was unable to do this alone and my parents refused to help me achieve this.
I am getting back my big dreams and I know that God has plans for me that he's excited about. I also know that I would not have gotten through this without God and the promises he has given to me, and everyone who believes in him.
The most frustrating thing is that when I applied, and therefore needed it most, my form was backlogged somewhere, and now that things have improved a little, suddenly I get an assessment! The positive in this is of course that I have improved and while the whole system is in my view a bit ridiculous, it does demonstrate that I have come very far in my recovery to the point where I am not sick enough for PIP.
The problem with conditions like CFS/ME is that where you have to work yourself hard to do things you have to prioritise very severely. I can just about (but with discomfort) manage most everyday necessary tasks for life, like eating and washing. But to have the energy to do all that and then enjoy other things like socialising and hobbies is something many CFS/ME sufferers lack. My hope was that the PIP money and the disabled status that comes with it would enable me to live a little more because I would not have to worry about the parts of life that most people take for granted. I would get a free bus pass for example which would mean that I could get a bus for short distances without worrying about the accumulating bus fares.
The Bible promises us that we can have life and have it to the full, which right now feels a little out of reach. I have to have faith that God really can live up to this promise.
I am also currently freaking out a bit about going back to university. The fear and anxiety is much, much less than last year but it's still there, making all my symptoms worse. This is very inconvenient as I have loads to do before I head back. The end is in sight though. I had been thinking about quitting or going to a different university to go part time but I feel that this is something I need to do. I would liked to have taken a year out previously to recover and sort out appropriate accommodation but I was unable to do this alone and my parents refused to help me achieve this.
I am getting back my big dreams and I know that God has plans for me that he's excited about. I also know that I would not have gotten through this without God and the promises he has given to me, and everyone who believes in him.
Monday, 12 May 2014
CFS/ME awareness day 2014
Today (12th May) marks the annual CFS/ME awareness day worldwide. The more I meet both people with CFS/ME and those who know them, the more I feel so strongly that this disease needs a much greater awareness. So many people have this illness, young and old that you probably know at least one person with it, and yet so many people are ignorant of it and its lasting effects on both those who suffer from it and their friends and family.
This blog was originally started because I realised that not only did I know nothing about it, but neither did most of my friends and family. Not only this, but I discovered just how difficult it is to find reliable and helpful information about it so that even those kind enough to look up their friend or family member's illness are not rewarded for doing so. So today, to mark awareness day I shall give you a little insight into my life, to add to the multitude of others who are doing the same today.
I have been ill for almost 5 years now. It affects every aspect of my life, nothing is beyond its influence. I first became ill after my GCSEs (which I took a year early) in that the inevitable slump that comes just after a battery of exams never seemed to quite go away. Since then I have both improved and relapsed a number of times with the biggest and longest relapse occurring last January, in my second term of my first year at university. For most of this time I had no idea what was wrong with me, and even now I can say with confidence that I have CFS/ME this doesn't always enlighten people.
When someone asks 'how does it affect you?' or 'how are you?' where on earth do you start? I have had a number of times in between the last relapse and getting a proper diagnosis when people have asked me these questions and there is so much to explain and mourn that I have no idea what to say and instead stayed silent. The best I have managed is 'I am so very, extremely, unbearably TIRED' and even that doesn't cover it.
Getting a formal diagnosis, while mentally wearing and a lot of hard work, has been helpful, not only in terms of formalities (such as applications for benefits) but also for me to have a qualified consultant confirm that all of these confusing symptoms are real and come from a physical cause. It has also made me more confident in telling people.
In an everyday context, every action I make must have thought attached to it concerning how it will make me feel at a later date - can I afford to do this activity in light of what I must do later, tomorrow, over the next few days. My energy is extremely limited and therefore precious. It cannot be wasted. As a young person this is hugely frustrating and limiting and even now I still mourn for the things that I cannot do, and for the freedom I used to have.
I have never been a very positive person, things usually come half empty rather than half full, but I have had to learn to search harder for the positive things. I truly appreciate the valued few who understand enough to ask the right questions, to give me space to rest without fuss or offense and who keep me in their prayers. I have attempted to learn more about God and his relationship with us. I have to admit that for a long while I was bewildered as to what God could possibly do with a weak and useless body like mine and the mystery of how God can show His strength through our weakness is something I have also been searching for. God gives and takes away, and He has given me so much since I last relapsed. I am sure He will continue to keep giving way beyond I can imagine.
I understand how difficult it is to know this illness if you don't have it (which is why I write on this blog) which is why today is so important. Please take some time to read posts by people like me, which often in themselves take up a lot of valuable energy and require great bravery to produce such honesty. Also, if you are interested, I have other blog posts that cover other aspects of the illness that I don't have space to cover here, such as a list of symptoms, practicalities I have had to go through as well as my thoughts and feelings. Thank you for taking the time to read this.
This blog was originally started because I realised that not only did I know nothing about it, but neither did most of my friends and family. Not only this, but I discovered just how difficult it is to find reliable and helpful information about it so that even those kind enough to look up their friend or family member's illness are not rewarded for doing so. So today, to mark awareness day I shall give you a little insight into my life, to add to the multitude of others who are doing the same today.
I have been ill for almost 5 years now. It affects every aspect of my life, nothing is beyond its influence. I first became ill after my GCSEs (which I took a year early) in that the inevitable slump that comes just after a battery of exams never seemed to quite go away. Since then I have both improved and relapsed a number of times with the biggest and longest relapse occurring last January, in my second term of my first year at university. For most of this time I had no idea what was wrong with me, and even now I can say with confidence that I have CFS/ME this doesn't always enlighten people.
When someone asks 'how does it affect you?' or 'how are you?' where on earth do you start? I have had a number of times in between the last relapse and getting a proper diagnosis when people have asked me these questions and there is so much to explain and mourn that I have no idea what to say and instead stayed silent. The best I have managed is 'I am so very, extremely, unbearably TIRED' and even that doesn't cover it.
Getting a formal diagnosis, while mentally wearing and a lot of hard work, has been helpful, not only in terms of formalities (such as applications for benefits) but also for me to have a qualified consultant confirm that all of these confusing symptoms are real and come from a physical cause. It has also made me more confident in telling people.
In an everyday context, every action I make must have thought attached to it concerning how it will make me feel at a later date - can I afford to do this activity in light of what I must do later, tomorrow, over the next few days. My energy is extremely limited and therefore precious. It cannot be wasted. As a young person this is hugely frustrating and limiting and even now I still mourn for the things that I cannot do, and for the freedom I used to have.
I have never been a very positive person, things usually come half empty rather than half full, but I have had to learn to search harder for the positive things. I truly appreciate the valued few who understand enough to ask the right questions, to give me space to rest without fuss or offense and who keep me in their prayers. I have attempted to learn more about God and his relationship with us. I have to admit that for a long while I was bewildered as to what God could possibly do with a weak and useless body like mine and the mystery of how God can show His strength through our weakness is something I have also been searching for. God gives and takes away, and He has given me so much since I last relapsed. I am sure He will continue to keep giving way beyond I can imagine.
I understand how difficult it is to know this illness if you don't have it (which is why I write on this blog) which is why today is so important. Please take some time to read posts by people like me, which often in themselves take up a lot of valuable energy and require great bravery to produce such honesty. Also, if you are interested, I have other blog posts that cover other aspects of the illness that I don't have space to cover here, such as a list of symptoms, practicalities I have had to go through as well as my thoughts and feelings. Thank you for taking the time to read this.
Monday, 21 April 2014
Balancing act
I wrote a blog post on pacing almost a year ago now but a lot has changed in that time. In my previous post I described some days where I couldn't even sit upright, which was a little shocking to me as it was long enough ago that I have forgotten exactly how bad I used to feel. So I am also rather encouraged to have it in writing that I have come so far. It would appear that the pacing, amongst other things, has made a big impact.
Pacing is individual to everyone and so giving a guide for anyone who needs some advice would be difficult. Each person has different commitments. But here are some of my rules that I have learnt to live by, and have become almost natural to me now.
Know the warning signs. Having been ill for a while now I have gotten a better idea of the order in which symptoms appear. This may sound bizarre as they often just feel like always being there in a big rush but once you have gotten to a point where you have a little energy you realise which symptoms disappear first. For me, a sore throat and dizziness are signs that I need a little more rest that day. By the time I feel nauseous and am in pain I have way overdone it. I have talked to others who say the opposite though so maybe their individual to each person.
Plan ahead. Someone suggested to me that pre-resting (i.e. resting before activity) is better than post-resting and I think I would probably say that it is true, for me at least. If you know you have a big energy expenditure coming up, rest beforehand.
Wherever possible, sit down. Sounds a bit obvious I suppose but this was something I had to train myself to do. Sit down at every opportunity. Even on the bus when it's busy and everyone's glaring at you because you look young and fit, what do they know.
It's only 3 things but they are things that do involve some self awareness and changing of your mind set. But it is possible and every little part of energy that can be spared is useful.
God tells us to look after our bodies as they house the Holy Spirit and so I felt a bit liked I'd failed in this somehow as my body felt like it had been used past it's shelf life. But after a bit of thought, I know see resting and looking after my body as following this instruction. I would love to be getting really involved with church and evangelism but instead I will have to honour God by looking after myself, which is the best I can do with what I have been given. I have also been encouraged recently by a verse from 2 Corinthians which says
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves."
I definitely feel like a fragile clay jar and it reassures me to know that this does not mean that I can't go out and be God's ambassador because God is so much greater than I am and yet He lives in me in the form of the Holy Spirit who shines though. Also, God says that we have great power from him and so I don't have to rely on my own very limited strength.
Also, sometimes I feel that people assume that I am giving in to the CFS/ME or giving up and moping around by resting. I feel like I should not have to justify my actions (and this feeling may not even be accurate of others' opinions) but resting is the opposite of giving up. It is me managing my symptoms myself in the absence of medicine or physiotherapy. It is me taking control of my life again and accepting facts about my life that are unpleasant. In not resting, I deny and run away from the truth and in the process my body becomes weaker. Resting is a brave thing to do.
Pacing is individual to everyone and so giving a guide for anyone who needs some advice would be difficult. Each person has different commitments. But here are some of my rules that I have learnt to live by, and have become almost natural to me now.
Know the warning signs. Having been ill for a while now I have gotten a better idea of the order in which symptoms appear. This may sound bizarre as they often just feel like always being there in a big rush but once you have gotten to a point where you have a little energy you realise which symptoms disappear first. For me, a sore throat and dizziness are signs that I need a little more rest that day. By the time I feel nauseous and am in pain I have way overdone it. I have talked to others who say the opposite though so maybe their individual to each person.
Plan ahead. Someone suggested to me that pre-resting (i.e. resting before activity) is better than post-resting and I think I would probably say that it is true, for me at least. If you know you have a big energy expenditure coming up, rest beforehand.
Wherever possible, sit down. Sounds a bit obvious I suppose but this was something I had to train myself to do. Sit down at every opportunity. Even on the bus when it's busy and everyone's glaring at you because you look young and fit, what do they know.
It's only 3 things but they are things that do involve some self awareness and changing of your mind set. But it is possible and every little part of energy that can be spared is useful.
God tells us to look after our bodies as they house the Holy Spirit and so I felt a bit liked I'd failed in this somehow as my body felt like it had been used past it's shelf life. But after a bit of thought, I know see resting and looking after my body as following this instruction. I would love to be getting really involved with church and evangelism but instead I will have to honour God by looking after myself, which is the best I can do with what I have been given. I have also been encouraged recently by a verse from 2 Corinthians which says
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves."
I definitely feel like a fragile clay jar and it reassures me to know that this does not mean that I can't go out and be God's ambassador because God is so much greater than I am and yet He lives in me in the form of the Holy Spirit who shines though. Also, God says that we have great power from him and so I don't have to rely on my own very limited strength.
Also, sometimes I feel that people assume that I am giving in to the CFS/ME or giving up and moping around by resting. I feel like I should not have to justify my actions (and this feeling may not even be accurate of others' opinions) but resting is the opposite of giving up. It is me managing my symptoms myself in the absence of medicine or physiotherapy. It is me taking control of my life again and accepting facts about my life that are unpleasant. In not resting, I deny and run away from the truth and in the process my body becomes weaker. Resting is a brave thing to do.
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, 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.
Sunday, 13 October 2013
The Symptoms and Nature of CFS/ME
I have mentioned before that I would do a post on the symptoms of CFS/ME and I think today is the day! But I will also talk about the nature of the condition as I think that it all becomes confusing, and people make wrong assumptions.
So firstly, there's the fatigue thing. What does that even mean?
The fatigue involved in CFS/ME is very different from normal tiredness (in the last 9 months since my crash, I have maybe felt tired in the normal way maybe 10 times?). Normal tiredness comes from being busy and if your day has been productive, it can feel quite nice at the end of the day to be tired and sleepy as you head to bed.
That is why the condition is called Chronic Fatigue Syndrome, rather than Chronic Tiredness Syndrome. The best description I have heard so far of what it feels like is that your muscles don't really work properly. You tell your legs to go up some stairs and they get stuck on the first one. It feels like the energy is simply not there, like when your car completely runs out of petrol. Other analogies include the feeling of walking through treacle.
What does this have to do with post-exertional malaise?
Post-exertional malaise (PEM) sounds fancy but all it means is that you feel HORRIBLE after any activity. That includes sitting upright in a chair, or cooking dinner. How a normal person may feel after a hefty work-out at the gym doesn't even come close, and I can say that from experience as I used to enjoy a good gym work-out.
The PEM worsens every other little symptom that is there in a CFS/ME sufferer.
PEM also causes a weird thing which has been likened to sunburn - very little effect at the time, but a major effect hours or maybe days after. So a sufferer could go for a long walk one day, and then be bedridden for the next 3 days. This looks rather odd to others as normally the ability to do something one day is indicative of the person's ability always, but with CFS/ME the opposite is the case.
Is there pain involved?
Luckily I have not suffered much with pain, but a lot of people with CFS/ME have crippling pain which, similar to the fatigue, is worsened by activity. I can only really speak from experience with this one as describing pain is tricky. Personally, I ache a lot, and when my muscles have been used too much (for me, that is) they hurt.
Dizziness leads to me being at least in a sitting position, if not lying down for most of the day.
If I close my eyes for a second, and then open them, everything spins for a couple of seconds before righting itself.
Standing or walking for any prolonged space of time (like more than 5 minutes) can lead to varying degrees of dizziness. Multitasking while standing or walking increases the severity of the dizziness and the speed at which it comes on. The number of times I've almost fallen over because the world has been toppling about...
Feeling nauseous doesn't help either.
Fairly self-explanatory I think. Not helped by the dizziness, mind.
I normally get this when I have really pushed it, you know, by maybe walking around the block or something.
Sore-throats appear to crop up.
I have heard of a number of sufferers, myself included, who seem to have some form of sore-throat at all times.
Concentration and memory problems.
Also known as brain fog. This appears to occur in conditions such as M.S. too, but with a different name. Imagine you on a bad day when you overslept and you're groggy. And maybe a bit hungover. That's brain fog more or less, but it happens all the time.
Not really helped by sleep problems.
Anything you can think of that could go wrong with sleep, goes wrong at some point: can't get to sleep, can't stay awake, keeping waking up, really vivid dreams, can't wake up in the morning. Mostly the problem is that it is unrefreshing, although the dreams have been getting weirder and weirder.
The tendency is to swing towards sleeping for 15 hours a day or so, to hardly sleeping at all. Not much inbetween.
And then just loads and loads of random stuff like:
The nature of CFS/ME.
So firstly, there's the fatigue thing. What does that even mean?
The fatigue involved in CFS/ME is very different from normal tiredness (in the last 9 months since my crash, I have maybe felt tired in the normal way maybe 10 times?). Normal tiredness comes from being busy and if your day has been productive, it can feel quite nice at the end of the day to be tired and sleepy as you head to bed.
That is why the condition is called Chronic Fatigue Syndrome, rather than Chronic Tiredness Syndrome. The best description I have heard so far of what it feels like is that your muscles don't really work properly. You tell your legs to go up some stairs and they get stuck on the first one. It feels like the energy is simply not there, like when your car completely runs out of petrol. Other analogies include the feeling of walking through treacle.
What does this have to do with post-exertional malaise?
Post-exertional malaise (PEM) sounds fancy but all it means is that you feel HORRIBLE after any activity. That includes sitting upright in a chair, or cooking dinner. How a normal person may feel after a hefty work-out at the gym doesn't even come close, and I can say that from experience as I used to enjoy a good gym work-out.
The PEM worsens every other little symptom that is there in a CFS/ME sufferer.
PEM also causes a weird thing which has been likened to sunburn - very little effect at the time, but a major effect hours or maybe days after. So a sufferer could go for a long walk one day, and then be bedridden for the next 3 days. This looks rather odd to others as normally the ability to do something one day is indicative of the person's ability always, but with CFS/ME the opposite is the case.
Is there pain involved?
Luckily I have not suffered much with pain, but a lot of people with CFS/ME have crippling pain which, similar to the fatigue, is worsened by activity. I can only really speak from experience with this one as describing pain is tricky. Personally, I ache a lot, and when my muscles have been used too much (for me, that is) they hurt.
Dizziness leads to me being at least in a sitting position, if not lying down for most of the day.
If I close my eyes for a second, and then open them, everything spins for a couple of seconds before righting itself.
Standing or walking for any prolonged space of time (like more than 5 minutes) can lead to varying degrees of dizziness. Multitasking while standing or walking increases the severity of the dizziness and the speed at which it comes on. The number of times I've almost fallen over because the world has been toppling about...
Feeling nauseous doesn't help either.
Fairly self-explanatory I think. Not helped by the dizziness, mind.
I normally get this when I have really pushed it, you know, by maybe walking around the block or something.
Sore-throats appear to crop up.
I have heard of a number of sufferers, myself included, who seem to have some form of sore-throat at all times.
Concentration and memory problems.
Also known as brain fog. This appears to occur in conditions such as M.S. too, but with a different name. Imagine you on a bad day when you overslept and you're groggy. And maybe a bit hungover. That's brain fog more or less, but it happens all the time.
Not really helped by sleep problems.
Anything you can think of that could go wrong with sleep, goes wrong at some point: can't get to sleep, can't stay awake, keeping waking up, really vivid dreams, can't wake up in the morning. Mostly the problem is that it is unrefreshing, although the dreams have been getting weirder and weirder.
The tendency is to swing towards sleeping for 15 hours a day or so, to hardly sleeping at all. Not much inbetween.
And then just loads and loads of random stuff like:
- food and alcohol intolerances.
- sensitivity to sound, light and touch.
- difficulty judging distances.
- problems with body temperature regulation.
- difficulty focussing on objects.
- sensitivities to various medications.
- numbness and tingling.
- many more really quite random stuff.
The nature of CFS/ME.
- Not everyone gets all the symptoms, but all will have the fatigue problem, and high percentages of sufferers have been found to have all of the symptoms listed.
- The symptoms can be managed by careful rest-activity balancing. The worse the CFS/ME, the more the balance must sway towards rest - in severe CFS/ME you must rest virtually all the time.
- The rest needed for sufferers is total, as in lying in bed feeling relaxed. Sitting with friends watching tv counts as activity.
- Symptoms are not in a normal proportion to activity so you can't make predictions. They are also affected by mental activity and strong emotions so even being excited can wear a sufferer out very quickly.
- A sufferer will have good days and bad days which aren't always related to activity, although they can very roughly be correlated.
- It is present at all times, even when a sufferer appears to feel fine. Things can tip the balance towards more severe symptoms even once a person appears to be recovering. It's like the clutch pedal in a car - it can go down very fast, but has to come up slowly else you stall.
- It's not contagious.
- Stimulants like coffee have no effect other than maybe to make sufferers feel worse.
- It is totally different from having temporary insomnia, in that a few days of not doing much is nowhere near going to fix the issue.
Saturday, 14 September 2013
The countdown begins...
I just wanted to first say how overwhelmed I was by how many people have read my last post, I was moved to tears! With a week left to go before term starts again at university, the familiar nervousness and worries creep in - what if people think I'm being rude in not joining in things? what if people think I am faking it? what if my symptoms get worse? what if I end up very isolated because I can't go out and talk to people?
And so, of course, I prayed about these things, and although I still worry about them, God has used the response I had to my last post to show me just how much He loves me, and just how much support I have. So thank you to everyone who has been reading, you are an answer to prayer!
I have spent the last 4 months trying to improve my health by following the only thing that has been consistently shown to improve symptoms in people with CFS/ME - doing nothing! I never thought that I would end up with a condition that made it impossible to exercise. Actually when I say nothing, it's a controlled sort of nothing, as in I can do a limited amount, but only because if I literally did nothing except what is necessary for survival, life would become pretty dull.
So my summer has been basically filled with days' worth of television (thank you Netflix), mounds of ironing (somehow the easiest chore, and one that never gets done at home) and endless form-filling and research. If I look at the summer as a whole, I would probably say that it has been successful in improving my health. Maybe not quite (OK, not nearly) as much as I would have liked, but the fact that I am sitting upright typing this as well as having had a very short trip into town this morning by car is a major breakthrough.
I feel very proud with my achievements but 4 months is a long time and I struggle to remember exactly what I was like at the start. One thing I do remember is that I was feeling very low and definitely ready to throw in the metaphorical towel concerning my degree. However, 4 months of recovery and numerous, extremely welcome and kind messages and discussions have helped me to now make a list of the good things in life as it is:
- Disabled Students Allowance has promised to be very generous and so I am expecting to (at the very least) be given a mentor, a very comfortable office chair and computer equipment. Yes, given!
- After years of trying to get to a weight that I like, the lack of activity I am now forced to has allowed me to be able to put on the necessary pounds, and I feel fabulous!
- Somehow my hair stays grease-free for days at a time so a highly energy-consuming activity like hair washing doesn't have to be done every day.
- I have convinced myself that I do *need* a smartphone as I can't be always walking to top up my credit on payg, and I have not looked back.
- Trips out become special as they are a rare treat.
- My bed and me are firm friends.
- Any shopping trip expenditure can be justified as either 'I *need* this now' or 'I haven't been shopping in AGES so I can spend the money I saved by not shopping before' so they become guilt-free.
- God is very good, and He promises that any suffering will be greatly recompensed, in fact the scales will tip towards the good rather than the bad.
So here goes!
And in terms of the official support the list goes:
- Disabled Students Allowance (DSA) have said yes to funding me and I just have to turn up to a meeting with someone who is willing to splash some cash!
- Personal Independence Payment (PIP; totally wrongly named by the way) have taken my form that I spent so much time on and have not been heard of since.
- Social Services have said we'll see what we can do but the man on the phone was very nice :)
And so, of course, I prayed about these things, and although I still worry about them, God has used the response I had to my last post to show me just how much He loves me, and just how much support I have. So thank you to everyone who has been reading, you are an answer to prayer!
I have spent the last 4 months trying to improve my health by following the only thing that has been consistently shown to improve symptoms in people with CFS/ME - doing nothing! I never thought that I would end up with a condition that made it impossible to exercise. Actually when I say nothing, it's a controlled sort of nothing, as in I can do a limited amount, but only because if I literally did nothing except what is necessary for survival, life would become pretty dull.
So my summer has been basically filled with days' worth of television (thank you Netflix), mounds of ironing (somehow the easiest chore, and one that never gets done at home) and endless form-filling and research. If I look at the summer as a whole, I would probably say that it has been successful in improving my health. Maybe not quite (OK, not nearly) as much as I would have liked, but the fact that I am sitting upright typing this as well as having had a very short trip into town this morning by car is a major breakthrough.
I feel very proud with my achievements but 4 months is a long time and I struggle to remember exactly what I was like at the start. One thing I do remember is that I was feeling very low and definitely ready to throw in the metaphorical towel concerning my degree. However, 4 months of recovery and numerous, extremely welcome and kind messages and discussions have helped me to now make a list of the good things in life as it is:
- Disabled Students Allowance has promised to be very generous and so I am expecting to (at the very least) be given a mentor, a very comfortable office chair and computer equipment. Yes, given!
- After years of trying to get to a weight that I like, the lack of activity I am now forced to has allowed me to be able to put on the necessary pounds, and I feel fabulous!
- Somehow my hair stays grease-free for days at a time so a highly energy-consuming activity like hair washing doesn't have to be done every day.
- I have convinced myself that I do *need* a smartphone as I can't be always walking to top up my credit on payg, and I have not looked back.
- Trips out become special as they are a rare treat.
- My bed and me are firm friends.
- Any shopping trip expenditure can be justified as either 'I *need* this now' or 'I haven't been shopping in AGES so I can spend the money I saved by not shopping before' so they become guilt-free.
- God is very good, and He promises that any suffering will be greatly recompensed, in fact the scales will tip towards the good rather than the bad.
So here goes!
And in terms of the official support the list goes:
- Disabled Students Allowance (DSA) have said yes to funding me and I just have to turn up to a meeting with someone who is willing to splash some cash!
- Personal Independence Payment (PIP; totally wrongly named by the way) have taken my form that I spent so much time on and have not been heard of since.
- Social Services have said we'll see what we can do but the man on the phone was very nice :)
Sunday, 1 September 2013
The human spirit can endure in sickness, but a crushed spirit who can bear?
I said before that I would write about each of the symptoms of CFS/ME but for now I shall quote Action for M.E. (a charity who support sufferers of CFS/ME):
Moderate“People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.”
(http://www.actionforme.org.uk/get-informed/about-me/Symptoms/degrees-of-severity)
This is an insidious disease. Since May 2009, just after I completed my G.C.S.E.s, I knew something wasn't right. Unfortunately, my G.P. disagreed. But to be fair, my symptoms could mostly be excused or explained away - I had just finished doing about 15 exams and worked pretty hard. The symptoms never quite went away but hey, everybody gets tired, right?
Slowly, the symptoms got worse to the point where by the end of my school life I now know I had mild CFS/ME. I had to quit my Saturday job, quit my gymnastics club, and basically quit all social activities. Despite only having 3 hours of lessons a day and doing very little of my allotted homework I felt like death each day.
But hey, this was year 13, everyone was tired, right?
And so, with only a small amount of thought for my health, I started university, and loved it. I was studying a really interesting subject, I had made some fantastic friends and I was able to go to church more often than ever. Until the inevitable happened.
I crashed. Spectacularly.
Literally overnight, I went from feeling more or less fine to the moderate symptoms described above. Note the 'moderate' - yes, it could be a whole lot worse, but it could be whole lot better. By the time I got home for the Easter holiday after being ill for about 8 weeks and still pushing to keep up with university, I was on the verge of severe CFS/ME and it wasn't pretty.
Severe“People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise."
(again from Action for M.E.)
And so for that 8 weeks, which must have been the toughest 8 weeks of my entire life, I was in some little painful bubble of coming to terms with my new disability and the minute-by-minute struggle of independent living. My friends were there somewhere with their hurts and cares and joys but they were secondary to my struggles.
I have the utmost respect for people who are in some crisis or even really good times, who still have genuine concern for others' problems. They are better people than I. All I could see was my loss.
I desperately wanted to join in with what my friends were doing - eating together, watching films together, shopping together - but my body was screaming at me constantly to sleep, while simultaneously making sleep impossible. I am sorry for not being there for them, I truly am, but at the same time I feel some anger that none of them were truly there for me either.
I also feel sometimes that that anger is unjustified. I don't ask for help because some stupid part of me assumes that I can do things alone, and that getting upset in front of people is weak. What I needed in terms of support was way out of their league and what I could expect of a friend.
I hope these amazing friends that I have made will forgive me, and be able to move on from this. Hopefully I will be able to get a carer, but I'm not too hopeful as there isn't enough money to help people like me, whose pain is first acknowledged with a patronising air, and then second ignored with superiority.
"The National Institute for Health and Clinical Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions." (Again, Action for M.E.)
Moderate“People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.”
(http://www.actionforme.org.uk/get-informed/about-me/Symptoms/degrees-of-severity)
This is an insidious disease. Since May 2009, just after I completed my G.C.S.E.s, I knew something wasn't right. Unfortunately, my G.P. disagreed. But to be fair, my symptoms could mostly be excused or explained away - I had just finished doing about 15 exams and worked pretty hard. The symptoms never quite went away but hey, everybody gets tired, right?
Slowly, the symptoms got worse to the point where by the end of my school life I now know I had mild CFS/ME. I had to quit my Saturday job, quit my gymnastics club, and basically quit all social activities. Despite only having 3 hours of lessons a day and doing very little of my allotted homework I felt like death each day.
But hey, this was year 13, everyone was tired, right?
And so, with only a small amount of thought for my health, I started university, and loved it. I was studying a really interesting subject, I had made some fantastic friends and I was able to go to church more often than ever. Until the inevitable happened.
I crashed. Spectacularly.
Literally overnight, I went from feeling more or less fine to the moderate symptoms described above. Note the 'moderate' - yes, it could be a whole lot worse, but it could be whole lot better. By the time I got home for the Easter holiday after being ill for about 8 weeks and still pushing to keep up with university, I was on the verge of severe CFS/ME and it wasn't pretty.
Severe“People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise."
(again from Action for M.E.)
And so for that 8 weeks, which must have been the toughest 8 weeks of my entire life, I was in some little painful bubble of coming to terms with my new disability and the minute-by-minute struggle of independent living. My friends were there somewhere with their hurts and cares and joys but they were secondary to my struggles.
I have the utmost respect for people who are in some crisis or even really good times, who still have genuine concern for others' problems. They are better people than I. All I could see was my loss.
I desperately wanted to join in with what my friends were doing - eating together, watching films together, shopping together - but my body was screaming at me constantly to sleep, while simultaneously making sleep impossible. I am sorry for not being there for them, I truly am, but at the same time I feel some anger that none of them were truly there for me either.
I also feel sometimes that that anger is unjustified. I don't ask for help because some stupid part of me assumes that I can do things alone, and that getting upset in front of people is weak. What I needed in terms of support was way out of their league and what I could expect of a friend.
I hope these amazing friends that I have made will forgive me, and be able to move on from this. Hopefully I will be able to get a carer, but I'm not too hopeful as there isn't enough money to help people like me, whose pain is first acknowledged with a patronising air, and then second ignored with superiority.
"The National Institute for Health and Clinical Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions." (Again, Action for M.E.)
Thursday, 29 August 2013
My Life is More Than Tick-Boxes
Being sick/disabled produces so much paperwork! The acronyms go on and on: DSA, PIP, ESA... How else am I meant to get enough money to live off? Filling out all these forms and attending all these appointments turns into a full-time job.
My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.
Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'
As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.
So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.
I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.
And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?
My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.
Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'
As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.
So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.
I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.
And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?
Friday, 26 April 2013
Who am I? and what is CFS/ME?
Who am I? Some days I have no idea - and not because I'm confused and going through some deep life changing transition but because I can't think past a wall of fog.
I have a condition confusingly named CFS/ME which stands for Chronic Fatigue Syndrome/Myaglic Encephalomyelitis. It has a number of names but due to it's complex nature, no-one really knows exactly what it is and so CFS/ME is used to cover all possible angles in terms of symptoms and seriousness.
Because it is a very serious condition and you underestimate it at your peril. I have had CFS/ME for 4 years now and did just that until the start of this year (January 2013) where 2 weeks into my second term at university my body finally could not keep up with the demand and gave up. I have since been fighting for some kind of control over symptoms and for some kind of life at all.
I am a 19 year old student studying psychology at a university in Surrey. Before I relapsed I enjoyed trampolining, gymnastics, baking, reading and singing. Since my relapse, I have been unable to do these regularly and sometimes even reading is beyond me.
The general journey (for want of a better word) of this illness is that something occurs to trigger it (such as a viral infection, stress, multiple bereavements -or sometimes it just occurs with no apparent reason) and the body suddenly, as in literally overnight, goes from healthy to on the brink of collapse from the symptoms below. Through careful lifestyle management and other possible methods, the body gradually, slowly, gains some strength and health. From this point, it is very possible that someone with CFS/ME may relapse back into the state they were at first if something triggers it. Or they may be immensely lucky and never relapse. Or they could relapse again and again. Unfortunately the relapse is much more common. Some people never fully recover from this - the research suggests this number is very large but the research is in its early days.
Please just stop for a moment and imagine a life where your body is too weak to do basically anything (sitting up in a chair feels as tiring as running hard) and what that means for your day to day, let alone your hopes and dreams. Life becomes full of 'oh that looks great... apart from... I can't do that'.
I do not intend this blog to be a constant rant of the negatives, but rather an education and raising of awareness for those who have CFS/ME or know someone who does.
Here is a quick, brief list of symptoms that I will describe further in a future post as there a lot of them and they deserve a proper explanation.
Extreme, debilitating fatigue Concentration and memory problems Pain Post-exertional malaise Immune deficiency Sensitivity to sensory experiences and toxins Food allergies and intolerances IBS Mood swings and irritability Muscles weakness Sleep problems including unrefreshing sleep.
The list of symptoms goes on for longer than this list but these appear to be the most common, salient ones.
Thank you so much for reading!
I have a condition confusingly named CFS/ME which stands for Chronic Fatigue Syndrome/Myaglic Encephalomyelitis. It has a number of names but due to it's complex nature, no-one really knows exactly what it is and so CFS/ME is used to cover all possible angles in terms of symptoms and seriousness.
Because it is a very serious condition and you underestimate it at your peril. I have had CFS/ME for 4 years now and did just that until the start of this year (January 2013) where 2 weeks into my second term at university my body finally could not keep up with the demand and gave up. I have since been fighting for some kind of control over symptoms and for some kind of life at all.
I am a 19 year old student studying psychology at a university in Surrey. Before I relapsed I enjoyed trampolining, gymnastics, baking, reading and singing. Since my relapse, I have been unable to do these regularly and sometimes even reading is beyond me.
The general journey (for want of a better word) of this illness is that something occurs to trigger it (such as a viral infection, stress, multiple bereavements -or sometimes it just occurs with no apparent reason) and the body suddenly, as in literally overnight, goes from healthy to on the brink of collapse from the symptoms below. Through careful lifestyle management and other possible methods, the body gradually, slowly, gains some strength and health. From this point, it is very possible that someone with CFS/ME may relapse back into the state they were at first if something triggers it. Or they may be immensely lucky and never relapse. Or they could relapse again and again. Unfortunately the relapse is much more common. Some people never fully recover from this - the research suggests this number is very large but the research is in its early days.
Please just stop for a moment and imagine a life where your body is too weak to do basically anything (sitting up in a chair feels as tiring as running hard) and what that means for your day to day, let alone your hopes and dreams. Life becomes full of 'oh that looks great... apart from... I can't do that'.
I do not intend this blog to be a constant rant of the negatives, but rather an education and raising of awareness for those who have CFS/ME or know someone who does.
Here is a quick, brief list of symptoms that I will describe further in a future post as there a lot of them and they deserve a proper explanation.
Extreme, debilitating fatigue Concentration and memory problems Pain Post-exertional malaise Immune deficiency Sensitivity to sensory experiences and toxins Food allergies and intolerances IBS Mood swings and irritability Muscles weakness Sleep problems including unrefreshing sleep.
The list of symptoms goes on for longer than this list but these appear to be the most common, salient ones.
Thank you so much for reading!
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