Bit of an upward turn.

After a few more negative posts, I feel it is time for a more positive note. It is almost Christmas after all!!

I was able to get an appointment with a CFS/ME specialist last Tuesday (after pushing for it with my GP) and what a difference it has made! For the first time when speaking to a health professional about my condition, I felt they knew more about it than I did! He asked relevant questions, and practical things that I had prepared to ask his opinions about (such as special exam arrangements for university) he asked me about first, demonstrating that he had a knowledge of the sorts of things I could need help with. He also suggested a number of other supplements, as well as setting up a series of vitamin B injections, which I have heard from some people to be beneficial.

I could still find fault with this system I'm sure but today I won't because of the relief I feel after finally getting some help and advice from someone who understands my condition!

In other news, my university term ended just over a week ago and I am firmly back home preparing for Christmas. I've managed to do too much shopping with Mum but it has been so nice being home that I feel it's worth it. I feel a little more optimistic about next term, having just about managed this last one but there are maybe some aspects I need to work on, such as organisation, as I have 6 deadlines next term, although I hope to have 2 of those completed before I go back in January. Maybe 2014 will hold better things than 2013.

"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.

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:

• 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.

I hope I have covered everything, if not at least enough for now. I don't mind answering any questions, however stupid they may sound, and if you've got this far, thanks for reading!!

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'?

The Fear of Stopping

Many people without CFS/ME find it difficult to get their head around the behaviour of those with CFS/ME. Sufferers can sometimes be spotted walking around, looking perfectly fine, sometimes for days on end. You may meet up with a friend for lunch who has CFS/ME and they may look as if nothing at all is wrong.

Well, it's not called an invisible illness for nothing, and may in fact be one of the most invisible due to the presence of what is known as Post-Exertional Malaise (or PEM for short).

And what's PEM when it's at home? All it means is that symptoms flare up even more than usual and dramatically out of proportion after any kind of activity. So a meal out with friends may leave a healthy person very slightly tired but nothing more and the tiredness at the end of the meal doesn't get any worse unless you do more. Whereas, a CFS/ME sufferer may go to a meal, feel very tired by the end but then feel 20 times worse the next afternoon. And this feeling worse may last a few days.

So the consequences of activity are hidden. Your friend with CFS/ME going out with you yesterday is not a good reason for being able to go out today - in fact it's the opposite!

Now I don't want people to pity me and fuss, but some little understanding of this can go a long way. Treasuring the time with people with CFS/ME is vital as socialising is something that can only be done periodically.


There is also this fear of stopping. This is because a sufferer can run for a limited amount of time on empty but it always catches up with them (i.e. PEM), just like a short-term bank loan with a high interest rate. It's when you stop that the problem occurs, and there comes a point where you have no choice but to stop.

There are two ways to deal with this fear of stopping:

1. You stop loads, like every 30mins or so. And you do very little. Makes for a boring lifestyle I know, but personally I think it's worth it to actually feel well for most of the time. Someone doing this may be constantly saying no to outings and activities and appear anti-social, but for the vast majority of people, they wish they could join in and pay a high price for their healthy feeling. This is called pacing.

2. You run on empty for as long as you possibly can so that the stops are further apart. This makes for a much more 'normal' lifestyle but only for some of the time. More time must be spent recovering and the sick feeling (understatement here) is very strong. Personally, I think this is a very unhealthy way of managing the symptoms but it can make you feel more normal. Someone doing this may appear to be perfectly normal when you see them and you may wonder how they are sick at all. I think this method is only possible for mild CFS/ME but I may be wrong.

There is also the possibility of an inbetween method where most of the time you do 1 but a special event comes up and for a short while you do 2.

I wanted to write about this because people with CFS/ME are very easily compared and seeing people who follow 2 can make people who follow 1 more weak, when in fact both methods, or even having this condition at all, makes you a very strong person.

The Pain of Diagnosis

So yesterday I went to the rheumatology department at St. Peter's Hospital in Chertsey, Surrey. The receptionist and the nurse were both friendly and helpful and everyone I had met at the hospital was eager to help. I was even ready to let the fact that they had lost my referral letter for around 3 weeks slide in the face of such helpfulness.

On my first visit I saw a doctor who told me her name was Dr. Lin. She was as good as the system could allow for, taking me seriously and ordering a multitude of tests. She understood the importance of a diagnosis for accessing support from my university and from the welfare system. I left the appointment pleased and hoping to see her in my follow-up appointment where I would hopefully get this all-important diagnosis. The wait was 8 weeks but such is the NHS.

It all went a little downhill though at my follow-up appointment. The staff were again thoroughly friendly and helpful until I reached the rheumatologist. From the off, it was obvious that the Dr. Williams I saw had no clue about CFS/ME and seemed to feel that I would be happier with a vague diagnosis that provided no cure or treatment than something that would. (You know things are bad when you would actually prefer it to be lupus).

He did give me a diagnosis, but this was a semi-diagnosis. He called it 'a chronic fatigue syndrome' with the emphases on the 'a' and the 'syndrome'. He made it clear that he had no idea what was wrong and that this was a name that was used to just bundle me in with all the other misfits of the NHS. My relief on getting a diagnosis was lessened quite a lot by this.

My list of questions that I was hoping to get at least some kind of answer to were met with a mixture of 'I don't know's and answers that came only from the rheumatologist's imagination. I even had to correct him on a couple of points. He suggested that my brain was imagining that my symptoms were worse than they actually were and yet quailed under my further questions.

I did not trust a word he had said. I left the appointment in tears upon realisation that I knew more about my illness than the 'specialist' did.

My GP had ironically sent me to someone 'more specialised' to diagnose me and I had ended up being diagnosed by someone with even less knowledge than her.

In what system is this acceptable?? I have been given a damning diagnosis without any compassion from a doctor who had no idea what he was doing. He offered no treatment or help despite Dr. Lin having promised me some. Dr. Williams had not even heard of CFS clinics. No further investigation was carried out and no referral to someone who may have more knowledge was made.


I am appalled by how things turned out yesterday and I know for a fact that my experiences are not uncommon. I think that this is partly due to the lack of proper research but also due to the lack of empathy, interest or honesty from a health 'professional' who spent most of the appointment giving me (in his own words) "politician's answers" - i.e. answers that were a load of rubbish and didn't actually mean anything.

Badly done, NHS, badly done!

The Infamous PACE Trial - Ignorance is No Excuse

So I can't be alone in my experiences of the NHS. Thankfully, other than the whole CFS/ME thing, I have always been very healthy and I've only been to A&E once and as a hospital outpatient once, both for fairly trivial things. And they have always been helpful.

It's this CFS/ME thing that seems to have them a cropper, and from what I've heard it's not the only illness that stumps them.

They have so far not found any definitive test for CFS/ME as they have no idea what causes it. From my research of the studies that I can find on this condition, there have been smaller studies which have very few participants and actually come up with something tangible, and there has been the infamous PACE trial.

Not having signed up for the Lancet (who have cheekily classified the study under 'psychiatry') I can't see the whole PACE trial paper, you can only get access to the abstract. So I'm relying on those who have read it - and these such people are generally thoroughly cheesed off.

Being a psychology student who is trained to read research papers and then tear them to pieces, I would definitely rate the flaws in the PACE trial as enough to make it a very unreliable study. For starters, it is based on the idea that CFS/ME is caused by the brain telling the body it's much more tired than it really is leading to people with the condition resting too much. I believe this to be a completely wrong assumption, and I cannot find any studies that support the PACE trial's belief other than a lack of strong evidence with one biological cause.

Also, in terms of participants, the PACE trial only included those healthy enough to travel to the trial, which is only a small percentage and only includes those least affected. Participants dropping out would mean that only those for whom the 'treatments' worked/didn't harm would continue to the end. And the diagnostic criteria are way too lenient and include people who don't even have CFS/ME!

And so, stupidly, NICE (who advise doctors as to evidence-based treatments and diagnostic tools) have been sucked into the findings from this study - which means that us poor patients are being offered CBT (a form of psychological therapy based on combatting faulty thinking) and Graded Exercise Therapy which is a form of gradually increasing your exercise levels.

CBT appears to be not un-useful, unless you are told by the therapist that the whole thing is in your head, because anyone with a chronic illness could do with some help coming to terms with it. On the other hand, GET has in a large number of cases been found to be very hard on patients and make them worse, not better.


I am appalled that such a study is the only one that has been suitably funded and that NICE have decided that such treatments are enough for the victims of CFS/ME. It does not even begin to cover what could be useful for those who are severely affected either, who are let down by those who are supposed to be caring for them.

It all comes down to this wrong belief that CFS/ME is 'all in your head'. It is insulting. Just because you have not bothered to do research that finds a biological cause, you do not have the right to blame it on psychology instead, especially without proper follow-through. Ignorance is no excuse in the medical profession.

Resting. And I mean properly resting.

"What is this life if, full of care,
We have no time to stand and stare.
No time to stand beneath the boughs
And stare as long as sheep or cows.
No time to see, when woods we pass,
Where squirrels hide their nuts in grass.
No time to see, in broad daylight,
Streams full of stars, like skies at night.
No time to turn at Beauty's glance,
And watch her feet, how they can dance.
No time to wait till her mouth can
Enrich that smile her eyes began.
A poor life this if, full of care,
We have no time to stand and stare."

The poem is called 'Leisure' and was written by William Henry Davies. It's a very famous poem but I'm sure I'm not alone when I say that I struggle to find time for this kind of leisure. Leisure is counted as going on facebook, going out with friends, maybe even something more energetic like a favourite sport. I even skim read over the poem because I was so impatient to get on with doing the next thing.

We rarely fully stop.

I knew since getting ill that the logical thing to do was to rest, but in my mind this involved signing up to Netflix and watching hours of TV because I was convinced that my mind wouldn't cope with more than 5 minutes of inactivity.

I was encouraged by a lady I met who had partly recovered from CFS/ME and I had read that a number of other people had advocated it too, that I should properly rest for at least 30 minutes a day.

I thought this was crazy - doing absolutely nothing, for 30 minutes?? No TV, no music, no book, nothing. It sounded like a waste of time. We are told constantly that we don't have enough time. Inventions are created that make everything take less time and so we can fit more into our lives and have learned to expect things instantly.

I know that this is said a lot, but since relapsing, I have found it more true than ever, because I was forced to slow down and remove the complications.

Where I felt I couldn't keep up with my friends, I now sort of see it as they can't slow down enough to keep up with me.

I tried resting for 10 minutes yesterday, feeling sceptical. It felt lovely, and I barely noticed the time go by because for once I felt so relaxed. I tried 15 minutes today and I'll keep increasing. Let's see if it actually produces some physical result!

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!

Pacing

The exam season is thankfully well over but my body is still reeling from the effort of a first year at university.

My aim, once term ended, was to spend the entire 4 month summer holiday doing my utmost to increase my health as much as possible. Doctors appointments are few and far between, and appear to be following a philosophy that my illness is all in my head, despite the rheumatologist I went to see saying she thought it was a biological illness. And so, my health is in my hands! What a challenge!

I've never been a very disciplined person and I like what is bad for me way too much so this has been a very difficult turnaround. I have been aiming to reduce my symptoms through a process called pacing. It's got quite a vague name and description and probably means different things to different people. Based on trial and error, and common sense, I have described it in my life to mean doing as much as I can without producing symptoms.

Sounds simple? No. Not only is there the frustration of 'as much as I can' meaning sitting up in a chair for a couple of hours and maybe ironing a couple of things, but there is the daily fluctuations that characterise this condition. Some days I am capable of doing more and others, less. And it is so tempting to do much more on a day that you feel you can do much more but this only leads to the next few days not being able to even sit upright. This is called a 'boom and bust cycle' and it requires a lot of self restraint to not succumb to it.

I guess the main idea is that without pacing and control, the good days and bad days become much more distinct (like the idea that the rich get richer and the poor get poorer) and the overall trend is a downward inclination. But by reducing the difference between good days and bad days (or as I prefer to call them up days and down days) meaning that life is a little more predictable and the down days are not so bad. I think this also encourages the overall trend to go up too but it's too soon to tell.

So hopefully 4 months will be enough for the pacing to make enough of a difference that going back to university in the Autumn will be possible.

The next step is to get a proper, official diagnosis from someone who is willing to pass it on to student finance and those in charge of handing out benefits but that's another battle!

Who am I? and what is CFS/ME?

Who am I? Some days I have no idea - and not because I'm confused and going through some deep life changing transition but because I can't think past a wall of fog.

I have a condition confusingly named CFS/ME which stands for Chronic Fatigue Syndrome/Myaglic Encephalomyelitis. It has a number of names but due to it's complex nature, no-one really knows exactly what it is and so CFS/ME is used to cover all possible angles in terms of symptoms and seriousness.

Because it is a very serious condition and you underestimate it at your peril. I have had CFS/ME for 4 years now and did just that until the start of this year (January 2013) where 2 weeks into my second term at university my body finally could not keep up with the demand and gave up. I have since been fighting for some kind of control over symptoms and for some kind of life at all.

I am a 19 year old student studying psychology at a university in Surrey. Before I relapsed I enjoyed trampolining, gymnastics, baking, reading and singing. Since my relapse, I have been unable to do these regularly and sometimes even reading is beyond me.

The general journey (for want of a better word) of this illness is that something occurs to trigger it (such as a viral infection, stress, multiple bereavements -or sometimes it just occurs with no apparent reason) and the body suddenly, as in literally overnight, goes from healthy to on the brink of collapse from the symptoms below. Through careful lifestyle management and other possible methods, the body gradually, slowly, gains some strength and health. From this point, it is very possible that someone with CFS/ME may relapse back into the state they were at first if something triggers it. Or they may be immensely lucky and never relapse. Or they could relapse again and again. Unfortunately the relapse is much more common. Some people never fully recover from this - the research suggests this number is very large but the research is in its early days.

Please just stop for a moment and imagine a life where your body is too weak to do basically anything (sitting up in a chair feels as tiring as running hard) and what that means for your day to day, let alone your hopes and dreams. Life becomes full of 'oh that looks great... apart from... I can't do that'.

I do not intend this blog to be a constant rant of the negatives, but rather an education and raising of awareness for those who have CFS/ME or know someone who does.

Here is a quick, brief list of symptoms that I will describe further in a future post as there a lot of them and they deserve a proper explanation.
Extreme, debilitating fatigue          Concentration and memory problems        Pain          Post-exertional malaise      Immune deficiency        Sensitivity to sensory experiences and toxins       Food allergies and intolerances         IBS       Mood swings and irritability      Muscles weakness      Sleep problems including unrefreshing sleep.
The list of symptoms goes on for longer than this list but these appear to be the most common, salient ones.


Thank you so much for reading!