Diet & Nutrition: take 2

When I went to the CFS/ME clinic to see the occupational therapist, one of the things I asked about was food supplements and alternative therapies. While rather evasive on the whole subject – I guess they don’t like to promote or dismiss outright anymore, and they need to save something for the other sessions – I was recommended to visit The UK Association of Dietitians (BDA) website for more information and their guidelines, which are the ones used by the NHS.

The BDA website is immense, and nothing helpful came up when I searched for Chronic Fatigue Syndrome. After a while of ferreting around though, I ended up on the Food Facts Home and found success. A list of medical conditions sounded hopeful. . . and indeed, there I found a fact sheet for CFS. (CFS Food Fact Sheet)

Looking over this short fact sheet, I found that the rough ideas I’d been following were more or less what was advised. Yay for me! Of course, I probably eat more chocolate than they’d recommend, and crisps for that matter. . . but I have to get my salt from somewhere, and nobody’s perfect!

For your convenience here’s a quick summary of their advice for a good diet for those with CFS:

  • Eat a balanced diet including food from all the food groups. These are starchy foods, fruit and veg, meat fish and alternatives, milk and dairy.
  • Many people with CFS find eating little and often is beneficial, so try three main meals with a snack in between to keep your energy levels up. Avoid biscuits, sweets, fizzy drinks, etc as snacks because. . .
  • High sugar food and drinks can make your blood sugar levels go haywire. You want to try and avoid this.
  • There is no evidence to support the effectiveness of different diets. Restrictive diets are only recommended if there’s a food allergy and then only under supervision of a dietitian or healthcare professional.
  • Concerning nutritional supplements: “There is not enough consistent evidence to support the use of vitamin and mineral supplements to manage CFS/ME symptoms.” Plus, many supplements are expensive and contain huge doses of the active ingredients, which can be harmful. If you do take a multivitamin or other such, make sure there isn’t more than 100% of the RDA for any of the ingredients.

How’s that for sensible sounding advice?

Book-view: Fighting Fatigue

Title: Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME

Edited by: Sue Pemberton & Catherine Berry

(Image from Amazon. Click here to view)

 

 

The authors of this book are various, their occupations including occupational therapist, physiotherapist, and nurse. The introduction reveals that the information is based on ME/CFS booklets developed over many years at the Leeds and West Yorkshire CFS/ME Service, and includes stories by sufferers. There is little to no information in this book about the medical side of the condition: it doesn’t go into the potential causes or treatments, and no symptoms are discussed beyond that of fatigue.

In the introduction it states that,

“. . . This book is designed to be a useful tool in your recovery. It gives straightforward and specific advice on managing different aspects of everyday life. . .”

There are eleven chapters:

  1. Managing your daily activity and energy
  2. Rest
  3. Sleep
  4. Diet
  5. Stress and relaxation
  6. Thoughts and feelings
  7. Memory and concentration
  8. Dealing with others
  9. Physical activity and exercise
  10. Relapse and setbacks
  11. Carers

Each chapter includes an introduction, information broken into manageable chunks, worksheets and activities to help implement their advice, and a ‘story’.

The advice given seems sensible and practical, and they way it’s given makes it reasonable to implement. The difficulty comes when you try to make the changes and stick to to them, because some of them involve a fair amount of commitment and– I want to say hard work. It’s hard work as in you have to be truthful with yourself, prepared to keep trying even if you get it a bit wrong at first, and committed enough to keep it up beyond the first weeks, months, years. . .

I think one of the best points about this book is that it encourages you to try, to not be too hard on yourself and to set achievable goals, while also reminding that a step back isn’t the end of the world. In other words it’s motivational without being too ‘everything’s sunshine and rainbows’ or giving false hope. It even mentions at one point that staying as you are would probably be easier, because making an improvement will involve commitment and hard work, and will at times be frustrating.

Although I have come across many of the ideas in one form or another over the years, (so it wasn’t especially useful for me) I can see it being extremely useful for others: it seems a good book for strategies that help you cope with fatigue, and may not only manage your symptoms but help you work to improve them.

Finally, I didn’t get a feeling of being preached at as you do in some medical/self-help books, and there was no jargon or complicated diagrams. Instead the general tone is of calm, easy friendliness – someone who’s had more experience than you offering a bit of advice. Many of the techniques are of the ‘simple in theory, hard in practice’ kind, but surely worth giving a go.

ME/CFS Clinic – I got there!

Yesterday was my appointment at the ME/CFS Clinic. The news is. . .

  1. I really do have ME/CFS. I have been diagnosed twice, so there’s no arguing with it.
  2. There’s no miracle treatment but they think there are things I could try that might help.
  3. I have to wait for a phone call to make an appointment to go back.
  4. I am to start thinking about my future

So I have fallen from one wait to another, and likely there will be another wait after that, and another after that. . .!

Immediate advice I was given was to try using something called ‘First Defence’, which is a thing meant to help prevent you getting colds, and the other thing was to get zinc lozenges, which does the same thing. Anyone heard of those, or tried them?

I’m also to start thinking about what I want to do with my life (I think I might be slightly insulted) which feels like the ‘what do you want to be when you grow up’ question all over again. Being a bit before themselves aren’t they? I mean, there’s positive thinking and then there’s arrogance: just because I’ve been dealing with this without medical supervision doesn’t mean as soon as they get involved I’m going to improve. Maybe I will, but I’m not going to go sky-high with plans just yet.

Think I should tell them something outrageous just to see what they say?!

The other things that I have to go back to learn are ‘tools to help me manage my condition’. From my previous phone call I would guess it’s going to be Graded Exercise Therapy and mindfulness.

  • Graded Exercise Therapy (GET) is when you gradually increases the amount of exercise you can do over a period time. The NHS supports the use of GET as a treatment for ME/CFS. The ME Association does not.
  • Mindfulness is a technique used to reduce stress, anxiety and depression by increasing awareness and ‘living in the moment’.

I’ll probably do a post on of these in the near future – there seems to be a bit of controversy over both methods and it’ll be research for what I might be in for!

I guess this first consultation was mostly just to confirm I have ME/CFS, because I wasn’t really asked anything much about how I cope or the emotional side of things. Which makes sense. The consultant/doctor diagnoses then the occupational therapist takes it from there. I’ll probably have to do another round of questions when I go again. . .

That’s where I’m at at the moment then. Which is pretty much where I was before as far as I can see, except I have appointments and talking and whatnot to (ahem) look forward to. Oh, and when my Gran found out I’d been to see someone she asked, “did they say when you’d be over it?”

By the way, if you haven’t been inundated with the mindfulness craze please let me know. I want to know where you’ve been living so I can go there – it will reduce my stress levels! (No insult intended to those who practice mindfulness, I understand it is a legitimate technique that has had a positive influence on many people.)

Book-view: ‘Living with M.E.’

Title: Living with M.E.: the chronic/post-viral fatigue syndromeProduct Details

Author: Dr Charles Shepherd

(Image from Amazon. Click here to view)

 

‘Living with ME’, as you might guess from the title, is all about ME/CFS. There are four parts to this book:

  1. What is ME/CFS (definition, history, causes, symptoms, quality of life and recovery, current research)
  2. Practical steps toward coping (dealing with doctors, drug treatments, self-help, mind and body, alternative and complementary approaches)
  3. Learning to live with ME (3 case histories, relationships, jobs, your home, increasing mobility, help and benefits available in Britain)
  4. Appendices (useful names and addresses, further sources of information)

In the blurb on Amazon it is described as ‘A well-researched, comprehensive guide, LIVING WITH M.E. is THE book to buy for any M.E. sufferer who wants information not speculation‘. Certainly as I read it I was going – that is so true. I have that! I never realised that might be connected to having ME/CFS. I wish I’d read this years ago. . . There were also bits that I skimmed or missed out entirely either because they weren’t so relevant to me or I wanted to read other bits more.

What’s almost as interesting as what’s inside the book is the divided opinions it seems to stir up. (Check out the reviews on Amazon!)

A lot of the condemnation levelled seems to relate to 4 points:

  1. Information is out of date. The publication date may be 1999, but the book can be found on the MEA website so presumably has their approval. If that’s not good enough for you then (to put it bluntly) don’t buy it. Also, from what I’ve read, although lots of studies are ongoing there hasn’t been any great change between the majority of what’s in this book and current provable information. Admittedly I did only skim-read some chapters.
  2. Conflicting/confusing advice. Consider: no-one knows what causes this condition, there are a huge range of symptoms, and there are no definite cures or treatments for ME/CFS precisely because what works for some people doesn’t work for others. Is it surprising then that Dr Shepherd doesn’t say ‘do this and you’ll improve’? He gives you information and lets you make up your own mind.
  3. Information is wrong. A serious statement if true and since this book matches information I’ve seen from other sources. . .
  4. It’s discouraging and depressing. I’d say realistic and honest personally. The book does not dispute that people get better. It encourages you to have hope, keep trying, and have a positive attitude toward getting well. What it doesn’t do is give false hope and declare that because one person (even several people) got better this way it means that everyone can.

I got a second hand copy of this book and must admit I was somewhat daunted when I saw the size of it. (512 pages) But, because the information is so clearly divided into sections as well as chapters, and there’s a decent index at the back, you can find what you’re looking for quickly and easily, and you don’t have to read the bits you’re not interested in. If you want to go straight to treatments then do so. If the science of the condition hurts your head (it does go a bit technical in places) skim it, or skip it altogether. Simple.

Because no definite ‘this is so, do this’ advice is given, this may be more of a challenging read than other books on the topic. But surely that proves the information given is thorough, reasonably balanced and genuine? For example, when dealing with alternative and complementary therapies (a large section I feel I should point out) both what the therapy is to treat and potential side-affects are given, then sometimes the author’s opinion on whether this treatment is worth trying.

The book makes you think – here’s the positive, here’s the negative, and have you thought about this?

It’s true, if you want inspirational stories then this probably isn’t the book for you, but if you want facts and useful advice, then this is a decent place to look.

Note: Dr Shepherd is medical adviser to the ME Association, and suffers from ME/CFS himself.

 

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.

Warning Signs

Quick-notes:

  1. Be self-aware but not self-obsessed. Know your warning signs.
  2. Don’t panic – they’re an opportunity not a sentence
  3. Do something. Other than ignoring them.

road-sign-798175_640.jpg

I have found that before I suffer a full-blown ME/CFS episode, there are certain warning signs. You want to learn what these are if you can. Because once you can recognise your warning signs it offers a measure of control: you have the knowledge that you’re heading toward an episode, you can make an effort to ease the severity of it, or if you spot the signs early enough, possibly prevent it altogether.

This is (I think) part of a coping technique called pacing.

Although I now know my main warning signs, (gradual withdrawal into myself, start doing less, posture and way of moving alters) I don’t always spot them, or at least, I don’t spot them as quickly as other people do! And those other people can help you (again) in finding out what your warning signs are – you can ask them if they’ve noticed any changes right before you feel worse, or if they’ve ever suspected you’re getting ill before you actually do. They might not even realise they’re noticing these things until you mention it.

The difficulty is, if you’re anything like me you don’t want to be constantly thinking about how you’re feeling when you’re well. You want to forget about all that as much as possible and just get on with things. Tough tootsies. With this condition you have to become more aware of your body and what messages it’s sending, or you’re only going to run yourself into the ground over and over again.sign-1358288_640

I’m not saying record every change or evaluate how you’re feeling as soon as you wake up every day, just every once in a while (the timing depending on your own condition) take a moment to check for those warning signs, and if you notice them don’t freak out! Don’t stop everything and take to your bed. Just maybe take things a little easier for a couple of days.

Think of this a chance to change the future, not a set-in-stone prophecy of what’s coming.

So what do you need look out for? How do you work out what your own warning signs are? Here’s a few ideas:

  • Physical activity – how much are you doing, do activities tire you more, has the speed of your movements slowed at all, have you done something recently that might trigger an episode, are you moving as smoothly as usual
  • Sociability – are you joining in as much as is usual for you, talking, going out
  • Sleep – has it changed, are you sleeping more, less, feeling tired earlier in the evening
  • Attitude and emotions – do you suddenly not feel like doing things, are your emotions veering toward the negative
  • Posture – are you tending to slump in a chair when normally you sit more upright
  • Eating – how much are you eating, are you craving certain foods more, have you stopped snacking between meals (if you usually do)
  • Mental activity – have your thoughts slowed, how’s your concentration, has your speech changed
  • Pain – are you getting aches, an uncomfortable feeling in the joints, headaches

road-sign-663368_640.jpgLikely your warning signs will be as individual and unique as your condition, so you’ll have to work that part out for yourself. Maybe with some help from your friends! As previously mentioned, spotting these things in yourself doesn’t guarantee you’re going into an ME/CFS episode. If you do something about you might avoid it or – look on the bright side – you might be adapting to the changing season or be coming down with a mere cold! (Not that colds are anything to joke about when you have ME/CFS, but they don’t always turn into more)

So that’s warning signs. The idea isn’t to bury yourself with them or to fixate all your attention on yourself, but to use the technique as a tool to monitor your condition and maybe give you back a bit of control. And if it doesn’t work for you, don’t use it. Keep looking until you find something that does.

 

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?