Overdoing Things

Why?

Why do I do too much when I know it’s a bad idea? That I’ll suffer for it – sooner rather than later and for longer than expected. There are all sorts of reasons. Last week I did too much for two three main reasons: in support of family, because the weather was pretty good, and because I was feeling better than I had for a while. Now of course, I’m feeling worse than I have for a while.

All weekend, in fact since Friday afternoon, I’ve been feeling pretty lousy. Now this could all be self inflicted, but it could also be weather related – it went very changeable, and from warm in shorts to shivering in trousers and jumper – or it could be alternate health-related in that I was fighting off a cold – I was tired, sneezy, queasy, and grumpy. Which are not Snow White’s dwarfs, but which could be hay-fever instead of illness.

Does it matter which it was? Maybe not, because I felt (and feel) awful either way. Maybe I just needed a place to ramble/rant and this is it. Then again, maybe it does matter, because maybe this is the reason I keep falling foul of my CFS/ME: if when I get to feeling better I push a bit harder, don’t keep as close a watch on how I’m feeling, make myself vulnerable. . . boom and bust. Classic CFS/ME.

You’d think I’d know better after nearly 20 years, but apparently not always. That’s going to change though. I hope? I’ll try?

Book-View: Diagnosis and Treatment of CFS

Title: Diagnosis and Treatment of Chronic Fatigue Syndrome

Written by: Dr. Sarah Myhill

(Image from Amazon. Click here to view)

 

 

First off I need to clarify that I read the first edition of this book (shown above) however there is now a second edition which has a blue cover and includes ‘Myalgic Encephalitis’ in the title. All comments will be relating to that first edition as (astonishingly) I don’t know what changes and revisions have been made in the second.

The byline for this book is, ‘. . . It’s mitochondria, not hypochondria.’ This, with the title, pretty much tells you what the book is about: how to identify and treat cases of Chronic Fatigue Syndrome (CFS). The layout is:

  • Acknowledgements, message, introduction
  • Chapter 1: The clinical picture of CFS (symptoms and diagnosis including tests worth doing and those not)
  • Chapter 2: Mitochondria and CFS (what mitochondria are, how they work, how they go wrong and what that means)
  • Chapter 3: Treat the mitochondrial metabolic dyslexia
  • Chapter 4: Solid foundations for recovery and good health (rest and pacing, vitamins and minerals, sleep, diet, allergy, detoxification, the fermenting gut)
  • Chapter 5: Other important bits of the car to look after (avoiding viral infections, hormonal disturbances, oxygen supply, psychological aspects, exercise)
  • Chapter 6: Toxic and viral causes of CFS
  • Chapter 7: The practical details – where to start (the order of importance, possibility of getting worse, how long will recovery take)
  • Chapter 8: Catastrophe Theory and CFS
  • Resources, glossary, index

As you can see from this it seems to cover most of the issues people would be interested in: it outlines a theory for the cause of CFS, (that malfunctioning mitochondria are ultimately responsible) possible tests that will detect this, and a series of steps that will eventually result in your recovery. In other words it’s authoritative, positive, and offers definite instructions. And with a plausible sounding theory and some reasonable recommendations, it’s something I can see a lot of people wanting to read more of.

But–

These are theories, not proven methods. Plus, the tests and nutritional supplements recommended are sourced through Dr Myhill’s clinic, and I’m not sure they’re available elsewhere.

I must admit I felt uneasy before I’d finished the first chapter of this book, and that feeling grew as I read on. The trouble was that, as mentioned, none of this is proven even though there are statements like, “This test is nearly always abnormal in CFS sufferers.” (Chapter 1, pg 17) If this were true, wouldn’t someone else have noticed by now, given the number of studies underway? Researchers would surely jump on something that could give a halfway reliable test for CFS.

My conclusion: either the results aren’t so definitive or these tests are hideously expensive.

Then there’s the fact that several suggestions for treatment involve things already tested and found to have inconsistent results. Vitamin B12 injections, for example, or taking truckloads of vitamins and minerals. This book gives the impression that there’s no harm to be found in taking well over the RDA for various vitamins and doing so long term, however a documentary I watched the other day warned of the dangers of this very thing. Overdosing on some vitamins is simply wasteful, doing so with others can be potentially harmful.

Also, if you’ve already ‘laid your foundations’ by improving sleep and diet, and by implementing pacing, (all of which you can do for free using a bit of common sense) you’re probably going to start improving without the need for taking extra nutritional supplements.

Another thing about this book was how difficult I found reading it, and this wasn’t brain-fog related! It was because there’s a lot of science in there, so much so that after the first couple of doses I started skimming pages until it finished, hoping I wouldn’t miss too much. The chapters are very long too, and there is a fair amount of repetition. I also got very confused (and curious) at the mention of taking ‘hypnotics’. . . They turned out to be sleeping pills.

This may be more my personal opinion than an overview of the book – I try to be impartial but sometimes that isn’t so easy. I want to believe in a cure or at least a treatment for ME/CFS, but I’m not going to grab at vines growing golden thorns, and I feel a need to speak out when I see one.

I’m not saying that the theory is completely wrong – the idea of mitochondria malfunctioning sounds reasonable. It’s more the suggestions made for recovery that worry me. For example, apart from the vitamins and minerals already mentioned, I believe decent sleep, pacing and rest, and having a good diet are important factors in managing CFS, if not the most important. I’m just not convinced that how this book suggests achieving those things is the best way.

I don’t mean to criticise Dr Myhill, and I’m not saying she doesn’t help people. This is my opinion of this book, and maybe some of these issues have been addressed in the second edition.

Pacing

This won’t necessarily fit in with the official version of what pacing is, but it’s how I’ve come to see and understand the idea/technique.

Quick-Notes:

  1. Pacing is a technique that helps people manage their ME/CFS
  2. It’s about finding balance, and doing what you can when you can
  3. Most of the work has to be done by the sufferer, although there are ways other people can help, and there are professionals who can offer advice and assistance
  4. It’s an ongoing process to manage the condition, not a quick fix, not a cure

How to describe pacing? Pacing is (in theory) like becoming an adult: you have to accept things are different than before and that you’re not finished learning, become responsible for your own actions and decisions, be aware of yourself and what you’re doing, understand that actions have consequences, and on occasion be prepared to bargain & compromise. It’s also alike in that while guidelines and advice can be given, it’s up to the individual to work out how best to apply the concept to their own life.

Acceptance. This is sort of the first step, because if you don’t accept you have this condition – that you can’t carry on like you used to and that there will be unexpected ups and downs – then you’re not going to be able to get on with adapting and learning how to manage it. Unfortunately that’s where the advice ends: you have to work out how to come to terms with having ME/CFS for yourself.

Learning. As with any condition, there are many new things you’re going to have to learn. There are general practicalities: what the condition is, how it affects you, what potential treatments are, what your triggers, warning signs and limits are, how to deal with physical symptoms and what lifestyle changes these may necessitate. There are more personal considerations: how your character will help/hinder you, dealing with related emotional issues, telling family and friends and coping with their reactions, ditto for strangers. It doesn’t end there either, because if you have the condition for a long time your symptoms may alter, either in severity or type.

Responsibility. Although there will be people offering advice and support, you have to take responsibility for finding out what works for you, because there’s no checklist or or set of rules for ME/CFS. What works for one person may not work for another. It’s up to you to try things or not, to find out information, to implement suggestions, to keep going. It’s also only right (and means you’re a nice person) if you accept responsibility in another way – don’t blame other people when you suffer a set-back. If you went in to work, went out with friends, stayed up a bit later, that was your decision. Because everyone knows. . .

Actions have consequences.

Bargain & compromise. This can be a dicey business, but if you have a line-up of things you really want to do, you may decide (or may have to) implement these options. For example, you have a part-time job Monday, Tuesday, Friday. It’s your friend’s birthday and they want you to come out at the weekend. You always go out with your mum on Thursday. You know you’ve already been overdoing it a bit recently and there’s that bug going round the office. What do you do? Ignore your warning signs and do it all? You end up near-enough housebound for two weeks at least. Your other options? A) choose one or two activities which are the most important and excuse yourself from the rest. B) take it one day at a time, doing whatever is planned but taking it as easy as possible and being ready to call a halt if you get worse. C) decide you’ll do x even though you know you’ll probably suffer for it, leave y early, and rearrange z for another time.

Awareness. You have to become aware of how you’re feeling because no-one else can do that for you. Only you can know if you’re feeling run-down, and you have to be strong enough to follow through on that knowledge – if you think you’ve had enough say so, do something about it, stick to your decision. (Unless you really start feeling better or decide it’s worth the risk)

Honesty is also an important element of pacing. You need to be honest with yourself and others about how you’re feeling: don’t pretend nothing’s wrong if it is, because you’ll suffer in the end; but when you can do things – even little things – then do so because it will probably make you and the people around you feel better, more positive.

Google’s definition of ‘pace’ is to: walk at a steady speed, especially without a particular destination and as an expression of anxiety or annoyance. Well what you want with ME/CFS is to keep on at a steady maintainable speed, and setting goals might not be the best idea to achieve that. (Although that also depends on your personality and what the goals are I guess) The anxiety and annoyance you get for free, and will make themselves known without any say-so from you!

In the end pacing is about balance – you can’t do everything you used to, but if you take care you can shave off the major lows you have probably been suffering and establish a new ‘normal’. For the technique to be most effective it should become a way of life, almost instinctive. You sense your warning signs and heed them, and you don’t deliberately do more than you know you can handle unless you’re willing to accept the consequences. . . In other words, you do what you can when you can.

Introduction to Treatments

As previously mentioned I have no medical training and I’m not suggesting people go out and try these treatments – anything included here is done as part of my own research and to inform about possibilities.

Also, as the ME Association puts it: “there is as yet no accepted known cure, and no accepted universal treatment“. Which means that while people do get better, the professionals aren’t sure why. Sometimes it’s for no clear reason, sometimes the patient claims it’s due to some treatment plan they’re following, however there simply isn’t enough conclusive data, although there are many trials going on at present.

Note: I was told by my consultant that ME/CFS is one of those conditions doctors don’t like to say is cured, but rather that the condition is in remission. (She might have used a different word, but it’s that sort of meaning) Because once you have it it will always be there inside you, and periods of strain could potentially trigger a flare-up. I don’t know if that’s true for all people with the condition or it’s just if you get it in childhood or what, but I think it’s something to be aware of.

During my research I’ve also found that if the word ‘cured’ is used, you want to look carefully to see if you can find its exact meaning. The results of one study I read about described a portion of cases as cured, and then later I realised these people weren’t able to have a job and still spent long periods restricted to the house. That seems strange to me, and it’s something you want to watch out for.

 

Chronic Fatigue Syndrome in a Nutshell

When you meet someone new and ME/CFS comes up (which it will do sooner or later) how do you explain it?

There are leaflets now with advice for these situations, but they’re more aimed at family/friends/work situations where you’re having something of a conversation. When someone you don’t really know asks and you know you have a few sentences – if that – to explain, what do you say? How do you compress this condition into a nutshell?

Here’s how it usually happens for me:

For whatever reason, I’ve revealed I have CFS. Almost straight away I add that it’s like ME. At this point either a) understanding dawns and it turns out that their relation/friend/friend of a relation has the same thing and they mostly become sympathetic or b) they look completely blank.

On seeing b) I realise I have to explain ME/CFS to someone who has no clue and may not really be interested, and I probably have little time to accomplish this. It didn’t take me long to realise that going into symptoms or mentioning fatigue wouldn’t get me very far, but what to say instead? One of the suggestions given in the ME Association leaflet ‘Explaining ME to other People’ is to say,

It’s like having flu, only it doesn’t go away.

Short, to the point, and as long as the person has had flu and remembers accurately. . . Well, it will give them an idea anyway. I tried to come up with some different non-medical ‘in a nutshell’ descriptions and it’s pretty difficult. How about,

You know the Duracell bunny? That was me. Then, for no obvious reason, I slowed up and developed all these problems. They checked the battery, the wiring, the mechanics. . . They’ve run all these tests but they can’t pinpoint anything definite.

Which when you think about it comes down to,

I’ve got a fault no-one can quite figure out. It makes it hard to do ordinary things a lot of the time.

Or,

I call it rag-doll syndrome because I have no energy: I flop about and have to be carried places. Stick a pin in me and it hurts though.

No, I haven’t actually said the rag-doll one to anyone. To be honest, no matter what I come up with, each time I’m asked I probably say something quite different because I get flustered and my mind goes a bit blank. It happens whenever I plan what to say to someone: I plan, I rehearse, the whole thing vanishes when needed. Anyway, whether you like it or not, if the person is interested they will almost certainly ask more questions so you’ll have another chance to explain.

Side-note: Do you answer questions about ME/CFS? I usually do (as best I can) because I figure, at least they are interested, and it’s not like the information is secret. I’d rather have people curious than dismissive.

Next time you’re in a situation requiring ME/CFS in a nutshell, will you say you have something like perpetual flu? A fault in the system? Rag-doll syndrome? Or do you have a different way of explaining these things?