I’ll be honest here: this blog post doesn’t feature beads all that much! Beads are my work, one of my hobbies and my passion, so it’s pretty hard to write a blog that doesn’t feature them in some capacity, but this blog is much more personal (and pretty long, so you have been warned!).
A lot of you will know that I have Chronic Fatigue Syndrome, or ME (CFS/ME). In fact this illness is what I have to thank for introducing me to beads and beading. It has changed the course of my life in ways that are both positive and negative. I have never made any secret of having the illness and I’m more than happy to talk about it if anyone is interested in listening. However, I actually don’t talk about it that much and I’ve never really blogged about how it affects my life. It has had the odd casual mention in these blog pages, but no more than that really. Given the huge impact that it has on my life, this may seem a little strange.
If I’m not trying to hide it and I’m not ashamed of it, then why do I not talk about it more? Lots of reasons: firstly, I don’t want to be ‘one of those people’ who is always going on about their health. Secondly, I am never quite sure what reaction I will get when I start to talk about it. CFS/ME has a ‘bad’ reputation in that it has not been taken seriously as an illness and that is really only just beginning to change. So if you admit to having CFS/ME you run the risk of being labelled as a hypochondriac or an attention-seeker or a lazy person or a weak person. I have to say here that I have been lucky to have had many people already in my life and many who have entered it since I became ill, who have never attached any of these labels to me, but have shown huge sympathy and understanding. However, there have been many critical instances in my life when this has not been the case, times when I have been judged and when those judgments have had serious consequences for my life.
Lastly, I don’t want to be defined by this illness. Regrettably it
is an inescapable fact that it does now define how my life looks and what I am able to do. However, it doesn’t define who I am and there is some part of me that, even after almost fourteen years, is still in denial about all of this. There is a bit of me that thinks if I focus on all the ‘normal’ stuff that I can do, all the achievements for which I have worked hard, then just maybe I can pretend that this isn’t happening to me.
So, what has changed? Why do I feel the need to write about CFS/ME now? Firstly, in the context of the beads, it is time to admit that my health has been worsening gradually for a couple of years now. I’ve been trying to push on through and ignore this fact, but back in February I started getting some new symptoms which were very worrying. I have been undergoing tests and the doctors can find nothing new wrong, so this is just a new facet to this old illness. This means it is a wake-up call, a time to stop burying my head in the sand and start facing up to the fact that I need to take stock and take some sensible action. I thought it was worth trying to give a flavour of what CFS/ME is and how it impacts me so that hopefully the decisions I’m having to take at the moment make a little bit more sense to anyone looking at them from the outside.
The Science of CFS/ME
The headline here is that the science of this illness is still a really big question mark. There is research being carried out, but it is nothing like on the scale of some of the ‘big’ illnesses. The fact that CFS/ME hasn’t been taken seriously means that there is little funding available for research studies, although there are a lot of charitable groups who are doing a great job of campaigning to raise money and raise understanding. Statistics indicate that at least a quarter of a million people have this illness in the UK alone, so that’s a pretty big quantity of people to ignore.
Those scientists who are carrying out research cannot agree on what causes the illness. There have been theories that it is caused by a virus, but no concrete evidence to prove which virus: several labs have thought they have discovered the virus, only to have their findings challenged by other researchers. There is a theory that the illness is stress-related and that its onset occurs when someone with the right genetic propensity for CFS/ME goes through a very stressful event or series of events. There are theories that focus on hormones or on the immune system. There seems to be agreement that the central nervous system is affected. I have seen studies very recently that have found and highlighted changes in certain parts of the brain in ME/CFS sufferers. I have also read about studies that think they are coming close to being able to isolate a change in part of the immune system. There are a lot of unresolved theories out there, but we do finally seem to be getting agreement that this is a physical illness and not a psychological problem, which is a huge step forward.
The fact remains that the cause is unknown. There is no test to diagnose the illness, so diagnosis is carried out by ruling out everything else and then if the patient has been suffering symptoms without any let-up for at least six months and if the symptoms match up with the majority of the recognised symptoms, the diagnosis of CFS/ME is made (you can find a comprehensive list of the ‘recognised symptoms’ here). There is also no effective treatment. There are treatments out there, but none that have a proven track record of managing or eradicating symptoms for the majority of patients. As far as I can work out, genuine CFS/ME specialist doctors are a rarity. I was referred to a rheumatologist who had a passing interest in CFS/ME, but who freely admitted to me that I probably knew more about the illness than he did.
This leaves the patient very much on their own and the extent of their recovery may be down to luck or possibly to their own ability to look into the research findings, try some of the treatments on offer and just hope they can find a combination that helps them to manage their symptoms. I read statistics that 20% of people recover from CFS/ME, but then read a further scientific paper that had looked at a proportion of these people and found that ‘recovery’ entailed still experiencing symptoms, but on a minor scale. Basically these people have learned to manage the symptoms and adapt their lifestyle in order to be able to achieve some sort of normality, albeit not the life they had before becoming ill.
If you are interested in delving more deeply into the research that has been and is being carried out, then this website has a huge amount of information. There are also several ME groups and associations around the world, including the ME Association here in the UK and I have found that the explanations and resources available on the Optimum Health Clinic’s website are helpful in creating a framework for understanding the illness and some practical advice for things that may help. There are a huge number of other groups out there if you are reading this and thinking that you may need some help with CFS/ME, so it’s worth also doing a google search!
My Personal Understanding of Some of the Science
We do seem to know some concrete things about what is happening to the body, so understanding these may help to manage the illness. However, it is a pretty complex range of things to understand. One ‘big’ pattern is the body’s stress response. You may have heard of this as the ‘fight or flight’ response. We are all programmed to react to a perceived threat to our safety in a particular manner. The brain detects the threat, then orders the body to temporarily suspend all ‘normal’ activities while the adrenal glands are ordered to flood the body with adrenaline. This means that every bit of energy is channelled into either finding the strength to fight the threat or to run away from it. This response is designed to be a short-term solution to get you out of immediate danger, then ‘normal service’ is resumed.
One theory is that with CFS/ME, the body has somehow become stuck in this ‘fight or flight’ response, so that means that long-term all the body’s critical functions (immune system, digestive system, central nervous system etc) are functioning at a really, really low level, so they’re not doing their job properly. In practise if the immune system isn’t functioning at its optimum, you will be catching a huge number of bacterial infections and viruses and also having trouble in fighting them effectively. If the digestive system stops functioning at optimal level, then your body stops extracting all the nutrients from the food you eat, so even on the best diet imaginable, you will still be lacking in essential vitamins and minerals.
So, some of the CFS/ME treatments work on this basis and look at trying to find ways to ease the body out of this permanent stress state. Stress on the body can be the emotional things that we typically think of as ‘stress’ (eg bereavement, bullying, relationship breakup, job loss etc), but it also includes physical stresses like not getting enough sleep or eating a poor diet, exposure to toxins or chemicals, or facing a severe injury or even an operation. Put simply, these treatments look at which of these stresses are factors in the patient’s current life, or were factors in the run-up to the onset of CFS/ME, and tries to eradicate or deal with them. Often this means a two-pronged approach of changing the diet to replace any lost nutrients and some sort of psychological therapy to look at how the patient deals with life or comes to terms with some past trauma. This helps some people, but not others and the degree to which it helps varies from patient to patient. It may cause a short term relief in symptoms, but not a permanent ‘cure’.
The second big area of which I am aware is mitochondrial function. In essence, this is the way in which each cell in your body creates the energy it requires in order to function. In a normal, healthy person, every cell constantly manufactures enough energy to carry out normal tasks, plus a bit extra in case it’s needed. The energy is constantly being recharged, so even if you do need to dip into your ‘spare’ supply you should never actually run out. It looks likely that in a CFS/ME sufferer, the rate at which the energy supply is manufactured is slowed down. So this means that this person is constantly dipping into their emergency supply and even then the body can’t keep up the rate of replacement, so eventually the energy literally runs out.
I understand that the cycle required to replace the energy takes 3 days. This means when my energy runs out, I am literally unable to function and the quickest way to get better is to spend 3 days lying in bed sleeping so that my body can focus solely on creating energy. After that time my levels will still be really low, but they are sufficient to begin to do some activities, so I then have to spend several more days doing tiny amounts of activity interspersed with rest while my body continues to generate more energy slowly. Long-term, I am looking to find that magical balance where the amount I’m doing and the amount I’m resting add up to the speed at which my mitochondria are doing their job. Since there is no way of measuring this (as far as I know), this proves to be an interesting and continuous experiment that frequently goes wrong. I suspect that the more time my body spends in the stress-state outlined above (assuming that theory is correct), the more my mitochondria are unable to function, so the less energy I produce. Therefore, it comes back to finding a way to keep myself out of the stress-state, but as you can imagine, that is easier said than done. I have done a lot of research into nutrition and into understanding how I deal with life. This has proved an interesting journey and it leaves me with some ‘tools’ that allow me to imagine I can do something to control the impact of this illness on my daily life. However, there are times when I wonder if this idea of me having some sort of control is really nothing more than a hopeful illusion.
A Little Bit of Fun
If this science seems a bit confusing (it is!), then how about a little analogy? I will just start this by saying I know nothing about cars, but somehow this analogy seemed to work in my head! Imagine you have a lovely big, shiny car – let’s say it’s a red stretch limo. It holds 100 litres of fuel and it runs at 50 miles to the litre (so you can drive 5,000 miles on your tank of fuel). Every night the fuel automatically fills up to maximum, regardless of where you’ve driven during the day. You don’t see this happening and the car doesn’t have a fuel gauge so you don’t have to worry about how this all works. The car is comfortable: you use it all the time and you take it for granted. So much so, in fact, that when you do think about it, you probably think only of the things that aren’t quite so brilliant: the fact that it’s a bit of a pain to park and maybe you’re thinking that red isn’t an ideal colour – it would look a bit classier in black. You don’t really focus much on the fact that it pretty much never breaks down and it gives you everything you need from a car.
My car is a little car and, although it’s not as flash as the limo, it looks pretty nice. What you can’t see is that the fuel tank only holds 50 litres and it runs at 20 miles to the litre (so I can drive 1000 miles on my tank). It sometimes forgets to fill up over night, or sometimes something goes wrong with the automatic filling mechanism and it decides to stop filling when it’s only got halfway. The trouble is, because my car doesn’t have a fuel gauge either, I can’t tell when this happens. I also don’t understand anything about the fuelling mechanism, so I’m not too sure why it’s erratic. I use my car all the time as well, but a lot of the time it lets me down. Sometimes it just gives up altogether when I’m out and a long way from home, some days it won’t start at all, some days it slows down while I’m out, so I know I need to be careful with it and get home as fast as possible. Some days it’s really good, as long as I don’t ask it to drive too far.
The thing about this silly little story is that it only illustrates what I can see happening. It doesn’t tell me why you have a lovely reliable limo and I have an unreliable little car. Was it because I got unlucky with the car dealer who sold it to me? Or did I make some stupid decisions when I bought the car? Maybe my car originally had the same fuel system as yours, but I did something to change it. Why don’t I trade it in for a better model? Well, if someone could point me in the direction of a reliable car dealer, I most certainly would do this, but nobody seems able to recommend anyone. One person says this dealer is really good, another says that one is better, the dealers are all competing with one another to say they’re the best and have all the answers. Or maybe I don’t need a new car at all, just a good garage that can fit a fuel gauge so I can understand my car better. Perhaps it’s not about understanding: maybe there’s a garage out there who can give me a new fuelling mechanism so I don’t have the problem any more. I don’t have the answer and neither does anyone else, so I just have to make the best of my little car.
Why is CFS/ME so Misunderstood?
I can absolutely understand why CFS/ME has been so misunderstood for such a long time. I am experiencing it and I can’t understand it myself, so how can I expect others to do so?
Firstly, there are no obvious signs of the illness in the sufferer’s appearance. When people see me out and about I look perfectly normal. In fact, at the moment I probably look better than that – I look incredibly healthy. What people don’t realise is what happens on the days that I’m not out and about. The only people who see me on those days are the people who actually live with me (my immediate family) and they will see me looking very pale, my eyes lose their sparkle and I don’t actually look well. Some people who know me well can hear a change in my voice: if you phone me when I’m not having a great day, I will probably sound tired. If you are very perceptive and you are with me on a day when I’m out, you might notice some signs of tiredness as some of my symptoms worsen during the outing. Sometimes I can go out and have no problem at all, but other times I feel fine when I leave the house, then experience the onset of one or more symptoms during the time that I am out. I almost never tell anyone that I’m feeling this, but my Mum and some close friends have become perceptive at spotting when it happens.
CFS/ME is not the only illness where the sufferer doesn’t look ill, but we all tend to make a lot of judgments based on what we see. So I can understand why I end up having conversations that go something like this: ‘I have CFS’…’Really? But you look so well.’ I may at that point in time be feeling a little nauseous, having trouble concentrating and mentally looking around to see where the nearest seat is so that I can go and sit down, but none of that is apparent from my appearance, so if I start trying to explain it, I do sound as though I’m attention-seeking. So, it’s best to politely smile, end the conversation as fast as possible and find that seat so I can have a rest.
Secondly, it’s hard to comprehend an illness that has no consistent pattern. Usually illnesses get steadily better, or steadily worse – this may be over a long or a short period of time. Or possibly they may be affected by certain known triggers. CFS/ME is just so unpredictable. I may wake up one day feeling good, start upon my planned activities, then suddenly feel terrible. If I push through the activities I sometimes pick up again, or sometimes feel worse. If I stop and rest, I may recover within a couple of hours, or I may find myself in a severe energy dip for a few days. If I try and analyse the pattern around the symptoms or the activities in the days leading up to the onset of symptoms, there is no pattern. I cannot say, ‘ah yes, I did x, y and z’ yesterday so that’s why I’m feeling rubbish today. I may have done exactly the same ‘x, y and z’ last week and been absolutely fine and I may be able to do ‘x, y and z’ again quite happily tomorrow, or I may not. For me, the really difficult thing is working around that. I am quite willing to make lifestyle changes in order to get better, but neither I nor anyone else can seem to work out what those changes are. Sometimes something seems to work for a while and I think I may have hit upon a solution, then it stops working. Of course this is incredibly difficult for me to deal with, but how on earth do I even begin to explain it to somebody else without sounding like I’m either insane, making it all up or just a hypochondriac? I am none of those things and, believe me, I don’t want to be living a life in which my body’s consistent failure to function as it should is taking centre stage.
It is also very difficult to explain to people why I’m having to cancel planned events, why they saw me a couple of days ago and I was fine, but I’m now saying that I’m not. I feel I am asking for a lot of trust from the people around me: trust that I’m not just pulling out of something because I can’t be bothered or because a better offer came along, or because I don’t want to see them. All of this because the medical profession can’t understand the illness, so for years it has been labelled as ‘fake’. It seems to me that instead of saying ‘ok, so although our knowledge of the human body has come on in leaps and bounds, there is still a huge amount that we don’t know and this is one of those things,’ they have preferred to say, ‘we don’t know what you’re talking about, so you must be making it up.’
CFS/ME seems to challenge everything we think we know about illness. Scientists have been trying to apply the ‘usual’ rules to this set of symptoms, so look for a malfunctioning organ or a bacterial or viral infection, but those ‘rules’ don’t seem to be applying. Yet, we want them to apply because they fit our model of medicine: find the part that’s broken, or the thing that’s invading the body, then take a pill or have an operation to fix it. It could be that we just don’t understand a particular virus or organ well enough to understand how it’s attacking or broken in this case, or it could be that getting to understand CFS/ME turns out to have much wider implications for the whole way in which we view and deal with illness.
My Personal Experience of CFS/ME
Before I became ill and started beading, I worked as a management consultant. I would be part of a team called into a company (often huge internationally-known companies) to solve a problem. The problem could be anything from creating a strategy to market a new product, to writing a business plan, to working out how to cut costs in a department and so on. I would carry out a huge amount of research to understand the issues faced by the company, the market in which they operated and all of this information had to be analysed and turned into a solution to answer the company’s question. That solution would often be presented in a series of charts, pictures and bullet points backed up with an appendix full of data. This was a relatively simple way to answer a very complex problem. So, a while back, I thought it would be interesting to look at my CFS/ME in a similar way, to find out whether I could step back and see the big picture of the past 14 years.
Firstly, CFS/ME is perceived by a lot of people as about ‘being tired’. It doesn’t feel that way. This isn’t the same as the way you feel if you’ve had a long and busy day, or if you haven’t slept very well for a couple of nights. This is a complete lack of energy that affects the body physically and mentally. It’s hard to explain if you haven’t experienced it, but I can think of a couple of analogies that help. If you’ve ever had really severe ‘flu where you were totally knocked out for a few days, with a high fever, the feeling you get as you are beginning to recover, where you think you’ll try to do some activity, then find you just can’t and you need to go back to bed: that’s a bit similar. Or, have you ever done such a huge amount of exercise, maybe a really, really strenuous class at the gym which was well beyond your fitness level: it’s a bit like the temporary collapse you will feel after that.
This lack of energy is consistently there, but it has changed, so I have gradually gained more energy over the years, although never back to the point of ‘normality’. I hit a ‘high point’ in 2012-13 and I have been experiencing a worsening of energy since then. The chart to the left shows the ‘normal’ line, the bars show my average energy each year and you can see the upwards trend.
However, it can be hard to feel that linear pattern as each day my energy is different, so you can see from the chart on the right how it might look if I took the average energy per day over a period of a couple of months: it’s all over the place and it’s hard to see any pattern or to appreciate that I’m making any progress.
I think sometimes people don’t realise that CFS/ME isn’t just about having no energy or feeling tired. Frustrating as that is, it might not be so bad once you’ve accepted that you just can’t do all the activities you would like to do. After all, life is about making choices and compromises for all of us, it’s just that the choices with CFS/ME may be different to the choices we make without the illness. On top of that, there are a range of other symptoms which mean you also ‘feel ill’. Like the energy, these symptoms change over time, they’re unpredictable and hard to manage. They may also differ from person to person, which is another reason the researchers are having such a hard time zoning in on where to look for answers to this illness. So I thought I would look back at the ‘biggest’ symptoms that I have experienced alongside the energy loss since 2002. In the chart I’ve taken each symptom as an average across a year, so when you see the symptom at 100%, that means I experienced it every single day for that year. When it’s 50%, it means I probably felt it about half the days in the year, but that might have been for a solid six month period, or it might have been a couple of days here, a couple of days there, but totally about six months if you added it up. You can also see that some symptoms have disappeared altogether for the moment and some have now come in new, some have come and gone sporadically, some I haven’t included on the chart at all.
None of this can convey what the illness means or how it makes me feel, so that is another reason I haven’t talked about it. This is a ridiculously long blog (and if you believe the media’s claims about society’s reduced attention span, half the people who started reading this will have got bored and given up long before this point, so if you are still with me – thank you) and it has taken me several days to write. Part of me thinks I could have put my energy to better use: after all, who wants to know what has been happening to me for the past 14 years? Another part of me thinks that I am lucky to have recovered enough energy to be able to write this and to be able to bead: some people are stuck in bed or only able to get about with the aid of a wheelchair, so if I have the energy to write this, then I should. I should be letting people know what it means to have CFS/ME so that there is more incentive to research the illness, to understand it and to help those who need it.
CFS/ME and my beading
Having tried to give you some idea of what I have been and continue to deal with every day, I just want to end by saying a bit about what this means for my beading life at the moment. Taking some sensible action in practise means taking a step back and spending some time focusing on my health so that I can get that into a more stable position. In order to do that, I have had to take some tough decisions about the amount of work that I’m currently undertaking. I need to go back to the place I was in a few years ago where I was having to factor a lot more rest periods into each day. I have also had to take a look at what my beading commitments entail in terms of travelling, length of time working and how they all fit together. By this, I mean that the activities that require me to travel a long way are going to require a lot more energy and at the moment it’s energy that I don’t really have. Similarly, a six-hour workshop requires more energy than a half-day workshop. Whatever task I undertake I know will take a toll on my energy, but that doesn’t mean I’m going to avoid or cancel the task, just that I need to plan around it carefully to make sure that I have rested well to maximise my energy before the event, then allowed a few days to rest and recover afterwards.
It sounds very simple and very sensible, but I actually find it a lot harder to put into practise. I love beading. I love teaching. I love the magazine editing. I love the TV work. I love designing for the Beadsmith Inspiration Squad. I also feel honoured to be doing all of these things and, on a purely practical level, I need to do all these things in order to pay my basic bills. When I am presented with an opportunity, my natural reaction is to say ‘yes’ and think that I can find a way to work around it and mostly I can. At the moment, I just need to take a little step back. So I feel really bad about the fact that I have just had to let down two beading groups for whom I was supposed to be teaching workshops (I’m really sorry to Yateley Beaders and Burnham Beaders). They have been really lovely and understanding, but that doesn’t stop me from feeling bad at letting people down and sorry not to have the fun of a workshop with these ladies. I am feeling guilty that I’m not managing to get a lot of designing done for the Beadsmith either. I now have this exciting new opportunity with Jewellery Maker TV and I want to jump at that, but I’m going to have to be really careful. The first show taught me that this takes a huge toll on my energy: I can manage this toll, but it is surprisingly hard to plan. In effect I’m looking at my diary to see where I have a day with nothing planned for a couple of days before or three days afterwards and it is so tempting to say, ‘oh but it’s only x I need to do the day after – that will be fine’, when in reality it probably won’t be and I will end up with the choice of cancelling ‘x’ or making myself so much worse that the recovery period becomes a couple of weeks instead of a couple of days.
It’s actually pretty hard writing this in public. Firstly, I don’t want to admit some of this for fear that people will start thinking of me as unreliable and stop offering the opportunities. Secondly, it feels very self-indulgent to be saying this. True, when I step out of myself and look in, this is the reality with which I am dealing, but I know that many people with this illness and with many other illnesses are in a much worse position and would love to have this reality. So, I don’t want this to sound as though I’m complaining or making a fuss: that’s not how I feel. I am looking at this as a temporary blip. I need to look at the big picture and recognise that if I make a few sacrifices now, I will hopefully put myself into a stronger position for the future. This is going to sound very clichéd, but this is about me being grown up and taking responsibility for the situation: I don’t like admitting my limitations to myself or to anyone else, but it is more responsible to be realistic about what I can achieve and to take on projects accordingly than to try to take on everything and then let people down at the last minute. I know I’m not alone in finding it hard to learn to say ‘no’ at the right time and in the right way. This is a new challenge to try and find a way through this illness and juggle that with continuing to do the things I love…and luckily I like a challenge! So I want to end up by saying a huge thank you to all the people that are kind and supportive and understanding – I can’t put into words how much I appreciate that.