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.
Showing posts with label God. Show all posts
Showing posts with label God. Show all posts
Wednesday, 17 September 2014
Sunday, 20 July 2014
"The Lord he knows where each day goes, I know he won't leave me behind"
The last couple of weeks have been an almost uneventful few days, and that is just how I like it. Exciting things have been happening but they have been interspersed with calm and relaxing days.
One thing I would like to write about is a visit to the CFS/ME clinic at Sutton Hospital about a week ago. This appointment was a follow-on from the seminar I went to a few months ago. I met with a specialist physiotherapist to discuss my resting regime (my phrase, not her's) and anything I might want help with. I went in thinking that I was doing OK I suppose as I have been improving steadily since Christmas and have been feeling a lot more hopeful for the future, but on the other hand I still have days when I get the resting regime a little wrong or I feel much less persevering and overall I can't live as a normal 20 year old quite yet. So I was very surprised when the physio said that I was doing really well and doing everything right.
Really??
Apparently yes. Maybe it's my perception that being as I'm not better yet, or that I still have down days so I have to be doing something wrong. Or maybe it's other people's perceptions that my illness is my fault, or that my down days are my fault. Either way, somehow I was surprised. This is something that has reassured me though as most of my resting regime is of my own creation based on trial and error, not the specialist advice of a doctor.
I may just pause here and elaborate on what the physio said was particularly good/helpful:
This is turning out to be a meandering post because I would also like to put into words my thoughts about this, my last long summer before I am meant to go out into the real world once I graduate next year. Last summer felt wasted as I spent most of it in bed feeling very poorly but this summer has allowed me some freedom. While I still cannot compare myself to others at my age and stage in life without some sadness and envy, I can still enjoy the great things my life is offering to me right now. I am well enough now to meet up with friends I haven't seen for a while and so have something to look forward to. The most encouraging thing is when friends who I have barely seen are still good enough to remember me. They tell me that they are so glad I have made it to see them or to get to an event and make the most of my company, which is the most lovely thing ever. So somehow I don't feel this summer is being wasted, and I am learning to enjoy each day for its own sake.
One thing I would like to write about is a visit to the CFS/ME clinic at Sutton Hospital about a week ago. This appointment was a follow-on from the seminar I went to a few months ago. I met with a specialist physiotherapist to discuss my resting regime (my phrase, not her's) and anything I might want help with. I went in thinking that I was doing OK I suppose as I have been improving steadily since Christmas and have been feeling a lot more hopeful for the future, but on the other hand I still have days when I get the resting regime a little wrong or I feel much less persevering and overall I can't live as a normal 20 year old quite yet. So I was very surprised when the physio said that I was doing really well and doing everything right.
Really??
Apparently yes. Maybe it's my perception that being as I'm not better yet, or that I still have down days so I have to be doing something wrong. Or maybe it's other people's perceptions that my illness is my fault, or that my down days are my fault. Either way, somehow I was surprised. This is something that has reassured me though as most of my resting regime is of my own creation based on trial and error, not the specialist advice of a doctor.
I may just pause here and elaborate on what the physio said was particularly good/helpful:
- pre-resting (again, my phrase not her's) which involves resting in anticipation of larger energy expenditures rather than relying on resting afterwards. Somehow it's more efficient, but I'm not sure why. Maybe because you feel a little less anxious going into things knowing you have prepared??
- proper resting. I talked about this about a year ago as I was experimenting with it but haven't kept it up so much. The physio described proper resting as simply doing nothing, even for only a minute or two. I had gotten a little into the habit of watching TV to relax but it doesn't quite work as well.
- a good bed-time routine.
This is turning out to be a meandering post because I would also like to put into words my thoughts about this, my last long summer before I am meant to go out into the real world once I graduate next year. Last summer felt wasted as I spent most of it in bed feeling very poorly but this summer has allowed me some freedom. While I still cannot compare myself to others at my age and stage in life without some sadness and envy, I can still enjoy the great things my life is offering to me right now. I am well enough now to meet up with friends I haven't seen for a while and so have something to look forward to. The most encouraging thing is when friends who I have barely seen are still good enough to remember me. They tell me that they are so glad I have made it to see them or to get to an event and make the most of my company, which is the most lovely thing ever. So somehow I don't feel this summer is being wasted, and I am learning to enjoy each day for its own sake.
Friday, 27 June 2014
"Your grace finds me"
If you hadn't noticed already, I have found some parts of my life hard since becoming sick. However I have also discovered God's amazing power for comforting and bringing joy to those who need it. I read recently a part of the Bible in 1 Kings chapter 19 where Elijah (a famous, and rightly so, prophet in the old testament) fears for his life as he has greatly angered a very influential person in his country while obeying God's instructions and fears for his life and wellbeing. At this point Elijah wants to give up everything. The Message (a version of the Bible) describes it as "wanting in the worst way to be done with it all". He really is at a low point.
And so Elijah prays and asks God to take his life. God answers his prayer - but not directly, as with most answers to prayer - and gives him 4 things: food, rest, encouragement and someone to help him. It appears to be exactly what Elijah needs as he shortly afterwards stands up to the influential person who has been angered despite her power to have him killed or beaten and conveys what God has in store for both her and her husband. It's not pretty (it involves them falling off high buildings and lots of blood).
I found this so encouraging as there are times when I have prayed for particular things and not seen them happen in quite the way I expect because God knows us and knows that sometimes what we need are more basic things. God didn't do as Elijah asked nor did he immediately solve Elijah's problem. He instead sees Elijah is discouraged and equips him with exactly what he needs to face the situation. I also think those 4 things that God gives Elijah are so applicable to every bad situation we face.
In this way the more difficult times in my life have led me to be able to get something from passages such as these and to really understand some of the mysteries of Christian life. I also think that you cannot truly understand questions like 'why does God allow suffering?' unless you have been through suffering with God alongside. At church last Sunday someone mentioned a talk they had been in recently where the speaker had mentioned that life is about balance and that with good things also comes bad things, and conversely that with bad things come good things.
And so Elijah prays and asks God to take his life. God answers his prayer - but not directly, as with most answers to prayer - and gives him 4 things: food, rest, encouragement and someone to help him. It appears to be exactly what Elijah needs as he shortly afterwards stands up to the influential person who has been angered despite her power to have him killed or beaten and conveys what God has in store for both her and her husband. It's not pretty (it involves them falling off high buildings and lots of blood).
I found this so encouraging as there are times when I have prayed for particular things and not seen them happen in quite the way I expect because God knows us and knows that sometimes what we need are more basic things. God didn't do as Elijah asked nor did he immediately solve Elijah's problem. He instead sees Elijah is discouraged and equips him with exactly what he needs to face the situation. I also think those 4 things that God gives Elijah are so applicable to every bad situation we face.
In this way the more difficult times in my life have led me to be able to get something from passages such as these and to really understand some of the mysteries of Christian life. I also think that you cannot truly understand questions like 'why does God allow suffering?' unless you have been through suffering with God alongside. At church last Sunday someone mentioned a talk they had been in recently where the speaker had mentioned that life is about balance and that with good things also comes bad things, and conversely that with bad things come good things.
Tuesday, 10 June 2014
"If you love me let me go back to that bar in Tokyo...
...where the demons from my past leave me in peace."
I have recently had a slight TV binge of the 'My Mad Fat Diary' boxset on 4od. For those who haven't seen it, it's about a teenager with mental health problems trying to navigate her way through the tangled mess that is adolescence. For something with such a flippant title, it is very moving and in some cases inspiring. The main character does not hesitate before starting new friendships and relationships, even though her illness will probably create difficulties. She constantly does things that terrify her, things that others do without thinking. And at the same time there is so much to relate to in the programme that it has left me changing my perceptions for days after I finished watching the last episode. Here are some of the things that have left me thinking and that I have been challenged about.
The perception that nothing has improved because today is a hard day.
This is a very easy one to think without even realising. It is the small moments of normality that make me realise that I have come so very far, both in terms of my health and how I perceive the world. I used to be so ill that I was in pain every minute just with the effort of existing but now I can walk and laugh and enjoy life in a way I wasn't able to this time last year. One day of feeling a bit rotten can be easily attributed to something like the heat of summer, but is all to easily attributed to a downward path. This has reminded me that thinking backwards to a more negative past can highlights the positivity of the present.
The perception that a friend's support is only what is visible to me.
This is where the demons from my past comes in.
Support comes in many forms, and a person does not have to be perfect to be a good friend. I have been let down throughout life in many ways, by many people, and to varying degrees, which has given me the warped perception of betrayal at every turn because you can see it anywhere if you really try.
A friend's support can occur in private, can happen with others when you aren't around, and with you in person. People have sometimes get the last one wrong, due to maybe a lack of knowledge of my illness, or perhaps my inability to speak openly about what I'm struggling with. It takes a lot of trust on my part to believe that the support is still there in other ways. The panic that comes hand in hand with sickness does not usually allow room for such trust, but is something I will need to work on.
The perception that people are scared of talking about illness.
I have met so many times with people who look awkward when I start talking about having CFS/ME, but this has been challenged by the observation that people view a person's illness in the same way the person themself does. If someone is able to live with their illness and work with it, this encourages a positive attitude from other people.
The perception that others see you as weak for struggling.
Maybe this is more my perception of myself. I have found in the last few years that you are what you eat and 'man cannot live by bread alone, but by every word that comes from God". Having negativity in your life and being surrounded by negative things is likely to lead to a negative outlook on life. Getting by and being positive despite such a negative thing as a chronic illness is hard work and not something that comes easily to me. My ambition therefore is to become a master of the art of positive thinking. I used to think this was something negative people were told when others were bored of their negativity and feels like a cop-out as it is something the person must do by themselves and without the help of the person suggesting it. But this perception has changed; surrounding myself with positive things and encouraging positive thoughts will help immeasurably. It's not going to cure me but it will make living with sickness a little bit easier. I hope. "I'm sick of dancing with the beast."
I have recently had a slight TV binge of the 'My Mad Fat Diary' boxset on 4od. For those who haven't seen it, it's about a teenager with mental health problems trying to navigate her way through the tangled mess that is adolescence. For something with such a flippant title, it is very moving and in some cases inspiring. The main character does not hesitate before starting new friendships and relationships, even though her illness will probably create difficulties. She constantly does things that terrify her, things that others do without thinking. And at the same time there is so much to relate to in the programme that it has left me changing my perceptions for days after I finished watching the last episode. Here are some of the things that have left me thinking and that I have been challenged about.
The perception that nothing has improved because today is a hard day.
This is a very easy one to think without even realising. It is the small moments of normality that make me realise that I have come so very far, both in terms of my health and how I perceive the world. I used to be so ill that I was in pain every minute just with the effort of existing but now I can walk and laugh and enjoy life in a way I wasn't able to this time last year. One day of feeling a bit rotten can be easily attributed to something like the heat of summer, but is all to easily attributed to a downward path. This has reminded me that thinking backwards to a more negative past can highlights the positivity of the present.
The perception that a friend's support is only what is visible to me.
This is where the demons from my past comes in.
Support comes in many forms, and a person does not have to be perfect to be a good friend. I have been let down throughout life in many ways, by many people, and to varying degrees, which has given me the warped perception of betrayal at every turn because you can see it anywhere if you really try.
A friend's support can occur in private, can happen with others when you aren't around, and with you in person. People have sometimes get the last one wrong, due to maybe a lack of knowledge of my illness, or perhaps my inability to speak openly about what I'm struggling with. It takes a lot of trust on my part to believe that the support is still there in other ways. The panic that comes hand in hand with sickness does not usually allow room for such trust, but is something I will need to work on.
The perception that people are scared of talking about illness.
I have met so many times with people who look awkward when I start talking about having CFS/ME, but this has been challenged by the observation that people view a person's illness in the same way the person themself does. If someone is able to live with their illness and work with it, this encourages a positive attitude from other people.
The perception that others see you as weak for struggling.
Maybe this is more my perception of myself. I have found in the last few years that you are what you eat and 'man cannot live by bread alone, but by every word that comes from God". Having negativity in your life and being surrounded by negative things is likely to lead to a negative outlook on life. Getting by and being positive despite such a negative thing as a chronic illness is hard work and not something that comes easily to me. My ambition therefore is to become a master of the art of positive thinking. I used to think this was something negative people were told when others were bored of their negativity and feels like a cop-out as it is something the person must do by themselves and without the help of the person suggesting it. But this perception has changed; surrounding myself with positive things and encouraging positive thoughts will help immeasurably. It's not going to cure me but it will make living with sickness a little bit easier. I hope. "I'm sick of dancing with the beast."
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.
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".
Tuesday, 5 November 2013
Independence, humility and gratitude
I have been feeling very sorry for myself lately! Feeling rubbish all the time doesn't really help you to see straight. This week is reading week and so I am taking a break from independent living for a few days and have gone back home. I have still ended up making small meals and doing my washing but the strain of doing cleaning to other people's standards (mine is very low) and cooking main meals is relieved, along with the effort involved in going to lectures. Not entirely a holiday though, as I have a mound of work to get done!
I have been thinking about 3 things this last week: independence, humility and gratitude.
Independence
Coming home has meant that in a way I have lost some independence because my parents are helping me with things and I can pretend that university doesn't exist for most of the day if I wish. And in a way this is quite a nice feeling, but at the same time I do miss my independence, but I won't get all of it back when I go back to university. I can't walk for more than 10 minutes a day without a lot of pain, dizziness and nausea - and nowhere useful is within that walking distance, which means I either have to ask others to do things for me or ask others to help get me to the more distant places.
I have been getting to lectures by taxi which Student Finance have offered to reimburse me for due to my DSA. I calculated how much I have spent on taxis just this far and it came to £234!!
Disability can, in a number of cases, lead to people loosing at least some of their independence, and pride comes into it in that people do not like giving up their independence, being able to do things their way, and instead rely on others. Because really, how many people are truly reliable? If you muck something up and you end up suffering that's one thing but if you are relying on someone else to do it and they muck up, that's a whole different matter.
Humility
Personally, I don't think humans are naturally very good at this and humble people always amaze and inspire me. Jesus was a very humble person and He helps me to put things into perspective. Jesus was born to die for us, which meant that as soon as He knew what His calling was, His death was in sight. I think people generally think they have some great purpose, or at least they hope they do to make all the sufferings in life worth it, but what if your ultimate purpose was to die, and to be hated along the way? I think I would probably kick up a bit of a fuss and give up, but Jesus saw what was coming and yet still acted with great humility and grace. He didn't wallow in self pity (like I often do) and wonder why no-one was paying any attention to all the sacrifices He was making. God's approval was enough. That didn't make it an easy task, but as tasks go, it was pretty extraordinary.
Gratitude
I was reading the verse Phillipians 4:6-7 the other day:
'Do not be anxious about anything, but in everything, with prayer and petition, with thanksgiving, present your requests to God, and He will guard your hearts and minds in Lord Jesus.'
I have always liked that verse but never really noticed the thanksgiving part, but it is so important went it comes to not being anxious. I can say this from experience. It seems crazy when you are truly anxious to turn around and say thank you, but if you start small and work up, you do find things that you can be thankful for. Somehow, God uses our thanks to 'guard our hearts and minds' which can mean different things I suppose depending on the situation, but when you are anxious and your mind just won't stop creating new worries, the thanksgiving can guard your mind against these new worries.
I have been thinking about 3 things this last week: independence, humility and gratitude.
Independence
Coming home has meant that in a way I have lost some independence because my parents are helping me with things and I can pretend that university doesn't exist for most of the day if I wish. And in a way this is quite a nice feeling, but at the same time I do miss my independence, but I won't get all of it back when I go back to university. I can't walk for more than 10 minutes a day without a lot of pain, dizziness and nausea - and nowhere useful is within that walking distance, which means I either have to ask others to do things for me or ask others to help get me to the more distant places.
I have been getting to lectures by taxi which Student Finance have offered to reimburse me for due to my DSA. I calculated how much I have spent on taxis just this far and it came to £234!!
Disability can, in a number of cases, lead to people loosing at least some of their independence, and pride comes into it in that people do not like giving up their independence, being able to do things their way, and instead rely on others. Because really, how many people are truly reliable? If you muck something up and you end up suffering that's one thing but if you are relying on someone else to do it and they muck up, that's a whole different matter.
Humility
Personally, I don't think humans are naturally very good at this and humble people always amaze and inspire me. Jesus was a very humble person and He helps me to put things into perspective. Jesus was born to die for us, which meant that as soon as He knew what His calling was, His death was in sight. I think people generally think they have some great purpose, or at least they hope they do to make all the sufferings in life worth it, but what if your ultimate purpose was to die, and to be hated along the way? I think I would probably kick up a bit of a fuss and give up, but Jesus saw what was coming and yet still acted with great humility and grace. He didn't wallow in self pity (like I often do) and wonder why no-one was paying any attention to all the sacrifices He was making. God's approval was enough. That didn't make it an easy task, but as tasks go, it was pretty extraordinary.
Gratitude
I was reading the verse Phillipians 4:6-7 the other day:
'Do not be anxious about anything, but in everything, with prayer and petition, with thanksgiving, present your requests to God, and He will guard your hearts and minds in Lord Jesus.'
I have always liked that verse but never really noticed the thanksgiving part, but it is so important went it comes to not being anxious. I can say this from experience. It seems crazy when you are truly anxious to turn around and say thank you, but if you start small and work up, you do find things that you can be thankful for. Somehow, God uses our thanks to 'guard our hearts and minds' which can mean different things I suppose depending on the situation, but when you are anxious and your mind just won't stop creating new worries, the thanksgiving can guard your mind against these new worries.
Sunday, 29 September 2013
Daily decisions
So here I am at university on a Sunday evening and all my housemates are across the landing having a cosy chat while I am sitting here on my laptop on my own, contemplating the life decisions we make. I look at the photos on my wall of friends and relatives and they remind me of some good times before I had any notion of what CFS/ME was.
Because I have a dilemma tonight. Should I get up and join them, or should I stay here and wind down to sleep? Joining them would involve my general ill feeling increasing and a possible very bad day tomorrow. Staying in my room would involve me feeling better health-wise but also very lonely and resentful.
And it is these kind of choices that now make up my daily routine. Being in a place with so many people who should be my peers really reminds me how different I have become. The decisions my housemates make are so different and if it was them, the answer to my above question would be easy and obvious.
It scares me how easily I can slip into this way of thinking. It takes one mistake, one reckless action and the rest of the day must be spent in bed. The possibility of me not eating later that day is very real, depending on how I look after myself in the morning. At 19 I should be impulsive, yet I am making the daily decisions of a much older person, and I miss something I never had. A number of older people have said to me that they think chronic illness harder on the young because if you get ill at 60, you can look back on your life (hopefully) with an attitude of having lived well. But for a younger person, your life has only just begun!
I am aware that I am feeling very sorry for myself this evening, partly because I am scared of starting my new term again tomorrow, so I shall try and include some positives.
I made it to church this morning for the first time since February, which of course was very tiring, but I really enjoyed going. I was thinking during the service how often we try to attribute blame and question the apparently bad things that happen to us. Sometimes we blame ourselves, sometimes we blame others and sometimes we blame God. And maybe God is to blame for some of the bad things that happen to us, but blame is the wrong word. I see these things as things that just happen in the grand scheme of things, but at least God has some control over it and can make it worth our while.
And as for questioning why bad things happen, we never stop and question accusingly 'God, why on earth did that go well? What did you do that for?'. Why do we really deserve such great and amazing things to happen to us? Even people who are considered very Godly have awful things happen to them. I'm not saying that we deserve for bad things to happen to us but I think that it is a healthy way of dealing with things that life throws at us to turn the knee-jerk reaction around.
Easier said than done of course.
Because I have a dilemma tonight. Should I get up and join them, or should I stay here and wind down to sleep? Joining them would involve my general ill feeling increasing and a possible very bad day tomorrow. Staying in my room would involve me feeling better health-wise but also very lonely and resentful.
And it is these kind of choices that now make up my daily routine. Being in a place with so many people who should be my peers really reminds me how different I have become. The decisions my housemates make are so different and if it was them, the answer to my above question would be easy and obvious.
It scares me how easily I can slip into this way of thinking. It takes one mistake, one reckless action and the rest of the day must be spent in bed. The possibility of me not eating later that day is very real, depending on how I look after myself in the morning. At 19 I should be impulsive, yet I am making the daily decisions of a much older person, and I miss something I never had. A number of older people have said to me that they think chronic illness harder on the young because if you get ill at 60, you can look back on your life (hopefully) with an attitude of having lived well. But for a younger person, your life has only just begun!
I am aware that I am feeling very sorry for myself this evening, partly because I am scared of starting my new term again tomorrow, so I shall try and include some positives.
I made it to church this morning for the first time since February, which of course was very tiring, but I really enjoyed going. I was thinking during the service how often we try to attribute blame and question the apparently bad things that happen to us. Sometimes we blame ourselves, sometimes we blame others and sometimes we blame God. And maybe God is to blame for some of the bad things that happen to us, but blame is the wrong word. I see these things as things that just happen in the grand scheme of things, but at least God has some control over it and can make it worth our while.
And as for questioning why bad things happen, we never stop and question accusingly 'God, why on earth did that go well? What did you do that for?'. Why do we really deserve such great and amazing things to happen to us? Even people who are considered very Godly have awful things happen to them. I'm not saying that we deserve for bad things to happen to us but I think that it is a healthy way of dealing with things that life throws at us to turn the knee-jerk reaction around.
Easier said than done of course.
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 :)
Labels:
God,
Life with limits,
lonely,
Pacing,
PIP,
Resting,
Student finance,
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Thursday, 11 July 2013
Just a clue...
God works in mysterious ways. So they say.
Every now and again, something happens, or some strike of inspiration gives you just a little clue as to these mysterious ways.
I found out on Monday that I had passed every exam I had taken in my first year of my university degree (although one exam was only 2 marks over the pass mark!), and not only that, but I had achieved a 2:1 overall!
Well I did a little dance and was very shocked as I was expecting a 3rd or a 2:2 at best and thinking about just how far I had come.
Technically, you could say that I have backtracked, but I feel it is the overall picture that shows the best image.
I spent last summer feeling slightly ill (not realising that this was in fact mild CFS/ME) but nonetheless able to go out and enjoy my summer. God used that summer to show me just how strong He is, and what I can achieve with Him. I thought that this was just me being readied for university as an experience that I expected to be tough at first but very exciting.
What I didn't realise was just how tough independent living is, especially when your world crashes down with a serious illness that had evolved from mild to moderate/severe and no form of support. Other than your faith.
Without a readiness beforehand I may have completely crumbled. I was too ill to read my Bible or go to church or listen to praise songs, let alone sing them myself. Even praying was proving tricky as brain fog was proving putting a sentence together extremely difficult so that my prayers generally came down to one word: 'help'.
I don't think that doubting or confusion or anger is necessarily a bad thing in a person's Christian life. But it can only be a good thing if you address these feelings and work through them. Working through doubts to end up saying either 'I understand' or 'I don't understand, but I trust you' I think is very healthy and strengthens a relationship with God. Because it isn't God who abandons us during times of great need, it's us abandoning God because we look for a scape-goat.
My perseverance paid off and now, thanks to over a month at home being cared for by my family I can read my Bible, pray and sing most days although church is still beyond me. But I am proud of my achievements and doing these things are all the more precious because of the rediscovery of how great they are.
And so I realised that becoming ill is not the result of an action by God, it's not a cause and effect relationship, it's more of a parallel relationship. Considering that God is God and created the world and all that, it's pretty impressive that the relationship is still an 'alongside' relationship rather than a 'looking down on you' relationship. So that when I was struggling it wasn't because God was annoyed, it wasn't because of anything in particular if I was looking for something to blame. It just happened, but God had seen it coming and prepared me as best as He could.
And it is that, that is the clue. And I even think that there is plenty more to learn from this, as I have challenged God to make this all worth my while by showing His glory through it. So let's see what happens!
Every now and again, something happens, or some strike of inspiration gives you just a little clue as to these mysterious ways.
I found out on Monday that I had passed every exam I had taken in my first year of my university degree (although one exam was only 2 marks over the pass mark!), and not only that, but I had achieved a 2:1 overall!
Well I did a little dance and was very shocked as I was expecting a 3rd or a 2:2 at best and thinking about just how far I had come.
Technically, you could say that I have backtracked, but I feel it is the overall picture that shows the best image.
I spent last summer feeling slightly ill (not realising that this was in fact mild CFS/ME) but nonetheless able to go out and enjoy my summer. God used that summer to show me just how strong He is, and what I can achieve with Him. I thought that this was just me being readied for university as an experience that I expected to be tough at first but very exciting.
What I didn't realise was just how tough independent living is, especially when your world crashes down with a serious illness that had evolved from mild to moderate/severe and no form of support. Other than your faith.
Without a readiness beforehand I may have completely crumbled. I was too ill to read my Bible or go to church or listen to praise songs, let alone sing them myself. Even praying was proving tricky as brain fog was proving putting a sentence together extremely difficult so that my prayers generally came down to one word: 'help'.
I don't think that doubting or confusion or anger is necessarily a bad thing in a person's Christian life. But it can only be a good thing if you address these feelings and work through them. Working through doubts to end up saying either 'I understand' or 'I don't understand, but I trust you' I think is very healthy and strengthens a relationship with God. Because it isn't God who abandons us during times of great need, it's us abandoning God because we look for a scape-goat.
My perseverance paid off and now, thanks to over a month at home being cared for by my family I can read my Bible, pray and sing most days although church is still beyond me. But I am proud of my achievements and doing these things are all the more precious because of the rediscovery of how great they are.
And so I realised that becoming ill is not the result of an action by God, it's not a cause and effect relationship, it's more of a parallel relationship. Considering that God is God and created the world and all that, it's pretty impressive that the relationship is still an 'alongside' relationship rather than a 'looking down on you' relationship. So that when I was struggling it wasn't because God was annoyed, it wasn't because of anything in particular if I was looking for something to blame. It just happened, but God had seen it coming and prepared me as best as He could.
And it is that, that is the clue. And I even think that there is plenty more to learn from this, as I have challenged God to make this all worth my while by showing His glory through it. So let's see what happens!
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