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.
Tuesday, 3 December 2013
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, 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.
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.
Thursday, 26 September 2013
19 going on 90 / Facing fears
This week I have been back at university. Lectures don't start until next week but I figured a week to settle in and get my bearings wouldn't be a bad thing.
Even after 9 months now since I relapsed (or crashed) I am still finding new aspects of being ill that I haven't come to terms with yet. And sometimes things I thought I had worked out turned out to not be so worked out as I had thought.
One of my cousins (who unfortunately is a bit dubious that I am sick at all) calls me 19 going on 90, which made me laugh at the time but which has come round to bite me eventually.
I am not a typical young adult. I spend most of my day in bed, not out of choice, but out of necessity. I can't walk for more than 10 minutes without serious repercussions later on so I can't join in with my friends with anything that involves leaving the house. I have to be in bed by around 10pm to allow for the 2 hours it will take me to get to sleep, and to prevent any groggy mistakes being made (I managed to burn myself this week because I forgot at 11pm that desk lamps that are left on become VERY hot!).
And what's the deal about being normal? I had actually prided myself in the past that I didn't just follow what everyone else was doing and did what I wanted with my life and my appearance. And yet now, I just want to be a normal young adult at university. I don't mind not going to numerous house parties, but being physically capable of doing my studies, and socialising and planning my future would be nice. But right now, I can't see past the end of the week, let alone my degree, let alone plans post-degree. How am I meant to get a job? Or study so I can get a degree-related job later on? My future in 2 years' time seems to involve going back to the parents' house and recovering the best I can for the 2 years after that.
And so today I have been facing up to my fears. The thought of continuing my degree, let alone looking after myself terrifies me. The people who are meant to help appear to be waiting somewhere out of sight, controlling the outcome of this venture from an office somewhere, while I am left struggling to put together a sandwich for lunch, partly because my brain is so muddled and panicky that I have forgotten to buy half the food I need. Everything just seems that little bit rubbish today, but hopefully things will pick up soon.
Even after 9 months now since I relapsed (or crashed) I am still finding new aspects of being ill that I haven't come to terms with yet. And sometimes things I thought I had worked out turned out to not be so worked out as I had thought.
One of my cousins (who unfortunately is a bit dubious that I am sick at all) calls me 19 going on 90, which made me laugh at the time but which has come round to bite me eventually.
I am not a typical young adult. I spend most of my day in bed, not out of choice, but out of necessity. I can't walk for more than 10 minutes without serious repercussions later on so I can't join in with my friends with anything that involves leaving the house. I have to be in bed by around 10pm to allow for the 2 hours it will take me to get to sleep, and to prevent any groggy mistakes being made (I managed to burn myself this week because I forgot at 11pm that desk lamps that are left on become VERY hot!).
And what's the deal about being normal? I had actually prided myself in the past that I didn't just follow what everyone else was doing and did what I wanted with my life and my appearance. And yet now, I just want to be a normal young adult at university. I don't mind not going to numerous house parties, but being physically capable of doing my studies, and socialising and planning my future would be nice. But right now, I can't see past the end of the week, let alone my degree, let alone plans post-degree. How am I meant to get a job? Or study so I can get a degree-related job later on? My future in 2 years' time seems to involve going back to the parents' house and recovering the best I can for the 2 years after that.
And so today I have been facing up to my fears. The thought of continuing my degree, let alone looking after myself terrifies me. The people who are meant to help appear to be waiting somewhere out of sight, controlling the outcome of this venture from an office somewhere, while I am left struggling to put together a sandwich for lunch, partly because my brain is so muddled and panicky that I have forgotten to buy half the food I need. Everything just seems that little bit rubbish today, but hopefully things will pick up soon.
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.)
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