First times

It's been quite a while since I last posted. Where posting on here helped to let out some of my anxieties and fears I have had fewer, and so less need for posting. I am about 10 weeks into my first term of third year now and despite the work being more challenging and the essays being longer and more detailed, I am generally enjoying things and managing my symptoms well.


The relief to finally be simultaneously ill and a student without the one massively impacting the other is huge. I have had a few stressful weeks with my coursework essays though where I underestimated the amount of work needed for the first and then the other two going down like dominoes. I'm still a bit rough because of it but I am grateful that I only feel a bit rough every week or so as opposed to every minute of every day. Mostly anyway!


I also had a panic where I had applied for an extension for one of the courseworks and it was turned down, which had never happened before. Fortunately a meeting with the support office finally shed some light on the situation and what things could be offered to help me when I am struggling to get my work done.


So overall a much more positive time, for now! I am exhausted and can't wait until Christmas but where my only stresses are study related and where I love what I'm studying generally things are OK. I live in a beautiful building and I have lots of neighbours, all of whom are lovely. I have all my meals made for me in a canteen and all my lectures and the bus stop are within 5 minute's walk.


Thoughts of what next year will hold are a little scary though. As a third year my inbox is full of messages that are career related. Currently I really don't want to think about it but I also don't feel there is any rush and that I can take my time when I graduate to find the right job for me.

The panic is back, along with the hope

So the results of the PIP assessment thankfully arrived much sooner than the actual assessment did but unfortunately they will not be giving me any benefits. This then has some negatives and some positives and as always, some frustrations.


The most frustrating thing is that when I applied, and therefore needed it most, my form was backlogged somewhere, and now that things have improved a little, suddenly I get an assessment! The positive in this is of course that I have improved and while the whole system is in my view a bit ridiculous, it does demonstrate that I have come very far in my recovery to the point where I am not sick enough for PIP.


The problem with conditions like CFS/ME is that where you have to work yourself hard to do things you have to prioritise very severely. I can just about (but with discomfort) manage most everyday necessary tasks for life, like eating and washing. But to have the energy to do all that and then enjoy other things like socialising and hobbies is something many CFS/ME sufferers lack. My hope was that the PIP money and the disabled status that comes with it would enable me to live a little more because I would not have to worry about the parts of life that most people take for granted. I would get a free bus pass for example which would mean that I could get a bus for short distances without worrying about the accumulating bus fares.


The Bible promises us that we can have life and have it to the full, which right now feels a little out of reach. I have to have faith that God really can live up to this promise.


I am also currently freaking out a bit about going back to university. The fear and anxiety is much, much less than last year but it's still there, making all my symptoms worse. This is very inconvenient as I have loads to do before I head back. The end is in sight though. I had been thinking about quitting or going to a different university to go part time but I feel that this is something I need to do. I would liked to have taken a year out previously to recover and sort out appropriate accommodation but I was unable to do this alone and my parents refused to help me achieve this.
I am getting back my big dreams and I know that God has plans for me that he's excited about. I also know that I would not have gotten through this without God and the promises he has given to me, and everyone who believes in him.

My life is more than tick-boxes

So ATOS assessment day is tomorrow. Currently I'm in bed listening to the How To Train Your Dragon 2 soundtrack (which somehow has a calming effect, and is pretty brilliant) as even thinking about it is making me want to give up and live in a hole. According to the many people who have been through the process and a number of ex-assessors the assessment aims to catch you out with the mentality of guilty until proven innocent. This is making me nervous, partly because I have an invisible illness that fluctuates and can't be seen, and partly because it's making me think of all the things I can't do in my life so that I can give the best (or rather worst) picture to the assessor. My mother woke me this morning with a lovely long list of reasons why my life is rubbish compared to most 20-year-olds. My positive-thinking ambitions are struggling to substantiate themselves right now. Cake has helped though.


I'm not normally one for going on about people doing extraordinary things despite illness or disability because it makes the others look weak and leaves room for ignorance and judgement, but this situation goes the entire opposite direction by actively searching for the limits of the disabled and chronically ill. I can see the difficulties of such a task in that there are always going to be people who lie or exaggerate but the other side of the coin is the systematic putting down of thousands of people who have way too much to be put down about already.






I wrote this the day before my assessment but didn't post it because it broke my rules about when best not to post. I am glad to say now that while the whole thing was stressful it was a much better experience than I expected.
The assessor told me she had some knowledge of CFS/ME which was reassuring from the outset and was kind enough to empathise with me once the assessment was officially over saying 'it is so hard' and also slightly surprised me by saying how draining it was for her to be a part of the process. While the form is a one-size-fits-all that in reality fits nobody there was some humanity in the assessor which really helped.




For anyone due to have an ATOS assessment for PIP soon here is a summary of what happened in my case:

• ATOS had rented a room in an office building and so shared the building with lots of other companies.
• I didn't have to climb any stairs but the distance to the assessment room itself was a hike.
• The assessor got us settled and then announced that she was ready to start the assessment and waited for me to say I was too before starting. Whether she took anything I said or did beforehand into account I don't know.
• I was prompted at the start to say as much as possible saying 'the more I know the better picture I can put on my form'.
• She asked objective questions from the form (e.g. how far can you walk? can you make a journey independently?) but also prompted me so that I was specific and only talked about my bad days.
• The questions were fair although difficult in some cases because some of them referred to my cognitive ability, which is dependent on my fatigue at the time and is worsened by moving around, whereas the ability to move around was only one specific question referring to walking.
• She asked at the end if I had anything I wanted to add. I suppose here you could include things you feel are necessary that they don't cover in the form (e.g. laundry)
• The end of the assessment was clearly stated and while again she may have observed my behaviour after, she did move away from the computer and talked in a more chatty and informal manner.
• It did feel a little pointless in that the questions were very similar to the form I'd filled in and so really there was little to add but maybe ATOS like an objective assessor.

"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:

• 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.

The Fundamental Attribution Error

Some psychology student somewhere will google this title and be a little confused as to what's it's doing here. I suppose most other people may be confused too.


As a psychology student, one of the many (many, many) things I have learnt about this last year is the fundamental attribution error. Generally, this is the belief (often made erroneously) that a person's behaviour is due to their own opinions and motivations.


For example, there was a psychology study in which participants were asked to listen to two opposing speeches. Both of the people giving the speeches were given a particular topic to speak on that was controversial and didn't necessarily fit with their viewpoint. Despite the participants being told that the speech topic had nothing to do with the speaker's views, they still attributed the opinions in the speech to the person speaking. So the speaker talking about how battery farming was great was viewed as being someone who supported battery farming, despite always buying free range.


This can also apply to everyday things, such as assuming that a sharp reply from someone is because they dislike you maybe, or have little patience. Usually, this isn't the case (hence F. A. error). I'm not sure why people see others like this but it has some negative consequences when people see the behaviour of those with invisible illnesses.


If I was chatting with a friend and then had to say that I was sorry but I needed to go rest, this could very easily be perceived as me being bored with the conversation rather than me being exhausted and having to drag myself away. And it often is perceived that way. Unfortunately in my world, and in the world of many others with invisible illnesses, can't and won't are entirely different. People who have had activities taken away from them due to illness generally would LOVE to keep doing them. Even doctors sometimes get this one wrong and see the patient's describing being unable to do things as not wanting to do things and diagnose it as depression.


Our brains would like to fit things into neat boxes and so will attempt to make the fundamental attribution error, but you don't have to listen.

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.

"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 when your hope's on fire, but you know your desire..."

I'm a big Mumford and Sons fan, but unfortunately their songs aren't the most cheery. I felt that this quote fitted my predicament right now, but unfortunately I have no opportunity to be a "Hopeless Wanderer" - I don't need anyone to "hold me fast" as I've got an illness that does that anyway.

What on earth to do with my life??! I am faced with such uncertainty that I have forgotten how to plan. Events come and if I'm not up to it, they go unnoticed. As do I. And at the end of the day, what can I do with my life? All my dreams and hopes are being destroyed, and it's the little things that keep me reminded of my loss. I used to love singing. I was never that great but I loved singing at church so I could really worship God but now I sing one hymn at church and that's me exhausted. Music seems to require such stamina, and I really don't have any.

I had always thought that university and a fantastic, satisfying job were in store for me, but now I have no idea. Everything I can think of appears unattainable. And this isn't just me being unduly pessimistic - this is the reality. I want something to get me out of the bed in the morning, to make me hope for the future. So that's my desire, a bit vague I know. That used to be achieved by my degree but I'm not sure it is any more.

Acceptance

These last few weeks leading up to the Christmas holidays have led to me asking a few big questions about my life. Do I want to stay at university? Should I stay at university? And then the opposite questions which should be asked, as I have found that sometimes the answers don't match up.

Do I want to stay at university? - I think yes.
Do I want to quit university? - Also, I think yes.
But do I want to leave university? - Not really.

The estate agent who we rent our student house from is asking us to confirm whether we will be staying in the house next year. The first step was deciding whether to stay at the house here or go back into halls, as that choice is basically friends vs practicality and better health. I decided on the house, feeling that having friends nearby was a useful thing but the decision wasn't an easy one.

I then realised why the decision wasn't easy - I wasn't sure about staying at university at all. I was meant to sign a contract for the house last Saturday and I couldn't even make it through the door of the estate agent before I freaked out.

Which has led me to think about acceptance. Acceptance of situations is thought of as a healthy step towards feeling positive about things and being grateful for the life you've been given. I have been told various things from well-meaning people about their opinions surrounding acceptance. Some people say I shouldn't accept that I am very unlikely to recover, and some say that too much acceptance can be a bad thing.

But how am I meant to move on with my life without understanding and accepting my state of health? Maybe I will get better, but realistically can I plan for the >5% possibility? I have to think practically, which isn't something I really like doing.

I don't feel the unbearable fatigue any more than makes me unable to move, but I think I have just gotten used to it as all the symptoms I have had in the past only when I have severely over-done things are now constant instead of rare and I have developed new symptoms. Is this acceptance? My body has acclimatised and now all these aches and pains and weaknesses and everything else are part of life. I feel so old at 19, or at least my body believes it is way beyond the teenage years.

I also am amazed to think that it has been almost 11 months since my relapse (that I haven't recovered from by the way!). And that overall I have had CFS/ME for 4 1/2 years. That's crazy.

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.

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.

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.

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 :)

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.)

My Life is More Than Tick-Boxes

Being sick/disabled produces so much paperwork! The acronyms go on and on: DSA, PIP, ESA... How else am I meant to get enough money to live off? Filling out all these forms and attending all these appointments turns into a full-time job.

My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.

Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'

As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.

So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.

I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.

And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?