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!!

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.

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.

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!!

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.

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!