The CFS/ME mythbuster!

There comes a time when you meet someone new when you find that they need to know that you have CFS/ME. The time that this is appropriate is not one that can be standardised. However, when that time comes there are a few frequently asked questions that I have found require a quick and effective answer. Here are a few. I hope that this may help people who both find explaining it difficult and those who find understanding it difficult.


So... what is it?
M.E. or C.F.S. (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) is a neurological condition. I like to describe it in two ways.
The first is that my muscles don't behave in the normal healthy way. By this I mean that the way your body reacts usually when you exercise (such as a good feeling after exercise, the building up of stamina etc.) don't happen. Instead I feel really sick after exercise and I can't build up stamina. I can do the same gentle exercise every day and it get harder rather than easier.
The second is that my body overreacts to everything (it's a bit of a diva!). This includes exercise, but also stress, certain food, getting too hot or cold, anything really. Personally I don't eat dairy and I explain that this is the reason why - before I developed CFS/ME I could eat dairy more or less OK.
This doesn't encompass everything though, some symptoms such as dizziness, concentration problems and memory problems are not included really.


So to summarise:
- It's a neurological condition (caused by the nervous system)
- My muscles don't respond the right way to exercise of any kind or intensity
- My body overreacts to minor stressors that would normally be dealt with without you noticing.


How long have you had it?
Obviously this varies from person to person but in my case it has not been the same severity over time. I don't know if people assume it's the same all the time?


I say I have had CFS/ME for 5 1/2 years now on and off, but I was only diagnosed last year. I do have good days and bad days though and say if that particular day is good or bad.


Can you treat it?
There is no standard treatment and some treatments work well in some people and not in others.


I personally am given vitamin B12 injections to help with the dizziness, fatigue and concentration as well as antihistamines to make me drowsy at bed time.


Some people also take food supplements such as CoEnzyme Q10.


The best way to manage it is to pace myself and to balance work and social time with rest. The best form of rest is lying down in bed doing nothing so sitting in a chair is tiring.


How is it diagnosed? How do you know you have CFS/ME and not something else, or am just tired like everyone else?
Unfortunately there is no specific test that shows you have CFS/ME. Instead there are symptom criteria that you have to meet in order to get a diagnosis. It is also a diagnosis of exclusion in that doctors have to make sure you don't have another illness that has similar symptoms, such as lupus, anaemia or thyroid problems.


I know that I have CFS/ME because I fit the criteria exactly. I know this is not usual tiredness because I was healthy beforehand and I know what it is to be exhausted in the usual way! My instinct is to push through (although I may moan about it while pushing through!) but I tried that since being ill and it made things much much worse rather than better. How my body feels and reacts to things is like nothing I have ever experienced before. I do not feel tired most of the time as I can't physically do enough to get tired. That is why I try to describe it as my muscles not working as that is the closest sensation I can think of.


At worst, any muscle use hurts very much, even moving my eyes or fingers.


Are you sure this isn't something else? Maybe you have depression?
I have come to realise that maybe CFS/ME can present itself in a way that looks like depression to others but it is definitely very different.


In depression, the motivation to get up and move and to get involved in things is gone.
In CFS/ME the motivation is very much there but the body physically can't do it.


In depression things that you used to enjoy have less or no enjoyment than before.
In CFS/ME you often can't do the things you enjoyed. You would still enjoy them if you could actually do them! Although sometimes the enjoyment is reduced because of the frustration or the physical pain of doing them.


In depression you spend a lot of time alone in bed because your motivation to get up is lacking.
In CFS/ME you spend a lot of time alone in bed because you are too weak to leave or because doing so helps you manage your symptoms.


Maybe you're just unfit. Come out for a walk with me, that will make you feel better.
Apart from this being a highly annoying and frustrating thing to say to someone with CFS/ME... as previously said the muscles can't function well enough to gain stamina through exercise. However this is the view of some doctors - that patients are just unfit and so scared to exercise because of the negative results of exercising with no muscle stamina.


I can say from personal experience this is not true. When I relapsed in first year I thought that I must just be unfit and so attempted to build up my fitness through gentle walking, by pushing through when I didn't feel like exercising. All this achieved was to greatly increase my suffering. Also, I relapsed pretty much overnight (I assume I had pushed my body just that little too far and it gave up). The day before I had been running around perfectly fine.


Is it contagious?
No. It has been linked to a virus, but from what I have researched this seems to be due to the body's overreaction to the virus or something along those lines. There is no way of transmitting it from person to person. Any genetic link is yet to be investigated though.


Would energy drinks or coffee help?
Unfortunately no, I have tried. All they achieve is a massively high heart rate!


There, I hope I have busted some myths about CFS/ME!!

"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.

Balancing act

I wrote a blog post on pacing almost a year ago now but a lot has changed in that time. In my previous post I described some days where I couldn't even sit upright, which was a little shocking to me as it was long enough ago that I have forgotten exactly how bad I used to feel. So I am also rather encouraged to have it in writing that I have come so far. It would appear that the pacing, amongst other things, has made a big impact.


Pacing is individual to everyone and so giving a guide for anyone who needs some advice would be difficult. Each person has different commitments. But here are some of my rules that I have learnt to live by, and have become almost natural to me now.


Know the warning signs. Having been ill for a while now I have gotten a better idea of the order in which symptoms appear. This may sound bizarre as they often just feel like always being there in a big rush but once you have gotten to a point where you have a little energy you realise which symptoms disappear first. For me, a sore throat and dizziness are signs that I need a little more rest that day. By the time I feel nauseous and am in pain I have way overdone it. I have talked to others who say the opposite though so maybe their individual to each person.


Plan ahead. Someone suggested to me that pre-resting (i.e. resting before activity) is better than post-resting and I think I would probably say that it is true, for me at least. If you know you have a big energy expenditure coming up, rest beforehand.


Wherever possible, sit down. Sounds a bit obvious I suppose but this was something I had to train myself to do. Sit down at every opportunity. Even on the bus when it's busy and everyone's glaring at you because you look young and fit, what do they know.


It's only 3 things but they are things that do involve some self awareness and changing of your mind set. But it is possible and every little part of energy that can be spared is useful.








God tells us to look after our bodies as they house the Holy Spirit and so I felt a bit liked I'd failed in this somehow as my body felt like it had been used past it's shelf life. But after a bit of thought, I know see resting and looking after my body as following this instruction. I would love to be getting really involved with church and evangelism but instead I will have to honour God by looking after myself, which is the best I can do with what I  have been given. I have also been encouraged recently by a verse from 2 Corinthians which says


"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves."


I definitely feel like a fragile clay jar and it reassures me to know that this does not mean that I can't go out and be God's ambassador because God is so much greater than I am and yet He lives in me in the form of the Holy Spirit who shines though. Also, God says that we have great power from him and so I don't have to rely on my own very limited strength.


Also, sometimes I feel that people assume that I am giving in to the CFS/ME or giving up and moping around by resting. I feel like I should not have to justify my actions (and this feeling may not even be accurate of others' opinions) but resting is the opposite of giving up. It is me managing my symptoms myself in the absence of medicine or physiotherapy. It is me taking control of my life again and accepting facts about my life that are unpleasant. In not resting, I deny and run away from the truth and in the process my body becomes weaker. Resting is a brave thing to do.

Jupiter

I wondered slowly into the room unsure if this part of the hospital really was the place I had travelled 40 miles to be. The whole building looked as if it had been forgotten, which I suppose was appropriate considering many of the patients in it felt the same. The room was filled with chairs, half of which were filled with nervous and expectant people. Some hobble in as if they are young people trapped inside an old person's body while some walk in normally but warily. One woman wears sunglasses and some lean against the wall.
Three women stood at the front of the room and as a natural hush fell on the people in it, one of the women introduced themselves. After further introductions and housekeeping two disappear to the back of the room and the third begins to describe a complex biological system. Everyone listens with interest, some also with wariness as she talks about each section of an ever-increasing diagram. The pens run out as she scribbles in unreadable handwriting on a whiteboard. Then comes the turn of the second woman. She is a clinical psychologist and starts her section by asking those in the room what they have to deal with on a daily basis.
The people in the room, previously supressed by uncertainty suddenly come to life and symptoms and cares are flying across the room. This is the start.






So today I went to a 'First Steps Seminar for CFS' at Sutton Hospital, marking the fifth hospital visit this year. I had no idea to expect from such a seminar and was sceptical as to its usefulness for someone like me who has had CFS/ME for almost 5 years now. As it was, it proved to be very reassuring and informative. The team came across as having integrity, care and understanding. No politicians' talk from them. One of the team described their thoughts on how CFS/ME exists and is caused. This part was new to me and so was of the greatest interest (but also because I have an interest in biology, and of course psychology). It made so much sense, and to have a biological explanation for my symptoms was reassuring because CFS/ME is often supposed to be a psychological illness. Generally, it came down to how the body reacted to stress hormones and dysregulations all over the place.


Secondly we went through common symptoms and emotions that come up in CFS/ME sufferers. The patients in the room called out symptoms as they occurred and there were many nods and sounds of agreement from the rest. The symptoms of CFS/ME are so broad, varied and confusing that it is easy to be overwhelmed by them and to wonder exactly what symptom means what. Seeing each symptom and each emotion that have taken over my life appear one by one on the whiteboard was amazing as the people around me were going through exactly the same. Not one disbelieving face was present.


This was also where the patients came to life. Each were fairly outspoken and each quite obviously had some sense of frustration - at how the medical system had previously treated them, at the lack of practical help, and the everyday struggles for some kind of existence. One person sitting behind me mentioned he had been ill for 10 years and yet here he was at a 'First Steps Seminar' at this point due to his symptoms being ignored and discarded by the medical profession. Others appeared to be newly diagnosed and in a state of panic. I remember vividly being in their place this time last year and it gave me some hope that I had gone through that phase and worked some things out for myself. I still wouldn't say I'm doing well but I have come a very long way.


This post is about me discussing a more positive experience, and although the team will probably not see this post I would still like to praise their handling of the seminar and the obvious hope they have given to a handful of people just like me. My criticism here is not of the seminar or the team whatsoever, but of the system generally. You have to have symptoms for at least 4 months before a diagnosis can be given and so that it 4 months of real struggle before any help can even begin to go your way. Some people like me and the man behind me have waited years for help. Everyone in the room was dissatisfied, anxious and frustrated. The CFS/ME itself is only half the battle.






And I have named this post Jupiter as this is what was playing on the radio as well travelled home from another hospital appointment yesterday. It's a famous classical music piece by Holst, and is entitled 'Jupiter, bringer of Jollity' so I thought it was appropriate.

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.

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 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.

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!

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!