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?

Avoidance

Not doing something you don’t really want to do is scarily easy. You find excuses, which may or may not also be legitimate reasons. You ‘forget’. You put it off until later and then forget. You decide something else is more important.

I have done all of the above. Probably so have you.

One of the harder things in life is to do something not because you want to, but because it needs doing. If you don’t do it it either won’t get done or it will fall to someone else, so save yourself or that other person a little time and aggravation, and just get on and do the thing already!

Thinking on Nutrition

To explain: this post is not about diets, it isn’t a set of rules or even guidelines covering what to eat or how much or when. You won’t find anything here about low fat, low salt, low carbohydrate, low sugar. . .

Good nutrition is important for everyone, and it’s one of the big things discussed when you get diagnosed with ME/CFS. Probably because poor nutrition can cause similar symptoms, loss of appetite can lead to poor nutrition, and there’s a theory that the condition is linked to deficiencies in certain vitamins or minerals.

If you eat properly you should get all the vitamins and minerals your body needs from your food, which means there shouldn’t be any need to take supplements. Moreover, taking an excess of certain vitamins can actually be harmful. Vitamins and supplements are best kept for when you think you’re not eating so well, such as if you’re ill and have lost your appetite, and then you can take a general multivitamin. (Check percentages of vitamins included – some give you ridiculous amounts like 500% of the GDA)

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I found the above image here while searching for what was called (back when I was in school) a ‘food plate’. This is not a food plate. It looks very much like some sort of propaganda poster, though what for I’m not entirely certain. . . Anyway, although it’s heavily biased toward fruit and veg (perhaps because it’s for the department of agriculture?) it does have several features I find very interesting.

  1. None of the food groups are bigger than any others. It’s suggesting you eat from these groups but isn’t placing more importance on any one.
  2. Butter is a separate group from milk products, meaning that after the fruit and veg dairy is the most represented.
  3. There’s no low fat, no red meat, only certain fruit and veg, listed. The only thing like that it says is in the bread, flour and cereals group, telling you to eat whole grain.
  4. At the bottom of the poster it tells you to go ahead and eat any other food you want.

Now I’ve changed my mind, I am going to include a few guidelines I go by. I’m not suggesting anyone else should follow them, but during my (admittedly brief) life, I haven’t had a weight problem, my blood tests show I have all the vitamins and minerals a body’s supposed to need, and I get to eat food that I like. How do I do this? Simple. Sort of.

  • Work out if you’re a grazer and try to change the habit. Eating little bits all the time isn’t so good for you, but you might need to have smaller meals more often if you really can’t eat a lot at one sitting.
  • Eat from all the food groups (meat, fish, dairy, fruit, veg, grains) because you need all the building blocks – protein, fat, carbohydrates, sugars, fibre, etc.
  • Reduce portion sizes before cutting out types of food. A simple way to do this is by using a smaller plate.
  • Eat well at set mealtimes so you can cut out snacking in between. This doesn’t mean you can’t have any sweet things – once you’ve eaten a decent meal, if you still have room then you have your pudding.
  • If possible avoid processed food and ready-meals; prepare from scratch as much as possible so you know what’s going into your food. You can always make up bigger portions then freeze some or keep it in the fridge and take out a bit at a time.
  • A little of what you like does no harm – all things in moderation.
  • Your body often knows what it needs. If you’re craving something it could be for a reason. E.g. sometimes I crave crisps, and since I know I don’t get a lot of salt elsewhere in my diet, I have them.
  • Sometimes eating something is more important than eating healthily. E.g. if you’ve been ill or have no appetite. Just make sure you get back to normal sometime.

Ok, so that’s not really ‘a few’ guidelines, but I kept thinking of more as I went so. . . Anyway, as far as I’m concerned, good nutrition and eating healthily isn’t necessarily about cutting things from your diet. It’s more about balance. Having said that, one of the healthiest people I know eats not much else but meat.

I’m afraid it’s another of those things where in the end you just have to work out what works for you, and a good place to start is by ignoring fad diets, ‘super-foods’, and other people’s recommendations.

Making Extra use of Hobbies

I come from a family who usually need to be doing things. (You can imagine how well ME/CFS goes down!) So if you want to sit down you’ll probably be doing something at the same time. Knit while watching TV, sit and put together a model, be outside and garden. . .

As I mentioned in my introduction, I enjoy most creative pursuits: arts, crafts, writing, baking, gardening. . . and which I do depends a lot on my level of fitness (what stage I’m at in my ME/CFS roller-coaster) All except for art. That I have to do when I’m in the mood for it, and then I can usually suit what I do to my energy level. When I’m properly well I cook/bake every now and again, and if the weather’s nice I’ll be in the garden, although not always doing gardening! I write all the time except when I’m seriously bad or my brain has gone, and I’ll usually have some piece of sewing/knitting/jewellery/cross-stitch around that I’m working on. All this means I end up with a lot of stuff.

IMG_5956.JPGThankfully some things are easier to make use of than others, cooking for example! Cakes and biscuits go quickly around here, as do garden-grown fruit and veg. Clothes I only make when I want something so they get worn, but if I had some reason I’d do more. But other things are harder to deal with. Paintings get hidden in a stack in the corner or a folder on the wardrobe. Stories are usually left on the computer but sometimes printed off and ‘put safely’ on a shelf to gather dust. Animals knitted with oddments of wool are squished on a different shelf. Jewellery sits in boxes. Cross-stitch pictures are framed but then what? There are only so many shelves to put things on compared to years of doing these hobbies. (On an on-and-off basis true, but it still adds up)

Monet1.jpgSo. Although hobbies should first and always be enjoyable, that doesn’t mean you can’t get a little something extra from them too, as long as you make sure the fun stays. This could involve selling items you make, but it doesn’t have to. Below are a few ideas, most of which I’ve tried at one time or another – be warned, some of them require a certain commitment and/or standard of ability. I would like to say it doesn’t hurt to try, but that would be a lie. It can hurt if you’re rejected, but if your efforts result in a purpose/outlet, mightn’t that be worth it?

Scary Tree.jpgShare. There are places online that let you share work for free, either on their site or you could make your own. As an example of each, DeviantArt “is the world’s largest online social community for artists and art enthusiasts“, while Wordpress lets you make your own site. Putting your work out in the world can be a scary thing, but it also gives the possibility of feedback, both positive and negative and both of which might help you improve. You could gain confidence, connect with people of similar interests. . . If you put yourself out there you might be surprised.

Donate. If your hobby leaves you with physical items, you could donate them to craft IMG_5471fairs/charity raffles/hospitals/etc. . . It might involve contacting several places to find out if they’re interested, but there are plenty of possibilities. You can also offer your time, knowledge or skills – offer to teach a class or do some work for free or for travel expenses.

IMG_5963Gifting. Instead of buying gifts for people, give them something you have made. It might not be perfect but they will hopefully appreciate the extra thought and effort that has gone into it. This might also encourage you to try something you haven’t before – if you do woodwork and usually make furniture, you could try making a toy for a younger family member. Enjoy baking? As a change from cakes you could attempt sweets, jams, preserves, or fruity drinks.

Use around the home. If you have a hobby that endIMG_5645.JPGs with a physical item and you’re happy to have people see your work, then make things for around the home. If you do something like sewing, knitting, or cross-stitch, then make a cushion cover. Or buy a plain cover and decorate it. Artists and photographers, hang your own work instead of buying a picture. Finished cross-stitch can be framed and hung too. In fact you can probably find a way to display the result of any hobby that ends with a physical item.

IMG_5990Enter competitions. Most of the competitions about are for art, photography, or writing. . . but there are others if you look for them, maybe associated with a shop or organisation, a special-interest magazine, or a local group for that hobby. Some competitions will have fees.

Barter. This means exchanging goods or services without the use of money. For example, if you garden and grow vegetables, you might swap an overabundance of beans for some else’s extra of plums. And it doesn’t have to be like for like. It could be a handmade piece of clothing for a triple-layer cake, a basket for a few plant seedlings. . . you get the idea!

Join a group/club. Instead of doing your hobby on your own youIMG_5133.jpg could join up with others. It gets you out of the house and socialising, you might be encouraged to stretch your skills, make new friends, and even end up involved in related outings that the group organises. The group might together hire a table at a craft fair – something you might not like or be able to do on your own.

Selling. This is pretty self-explanatory, although there are many different outlets these days. Some people sell at the front gate, go to craft fairs or car-boots, through friends or work colleagues, online. In my opinion, the best place for selling online is Etsy. (They do charge a small fee for listings and take a percentage of sales)

I wish I could do more with my hobbies. Isn’t that strange? They give me enjoyment, an amount of purpose and usefulness, encourage me to keep active and use my brain , and yet I still wish for more. The trouble with anything creative is that appreciation is subjective – everyone likes what they like so there’s always going to be someone who doesn’t like what you do. And having constant rejections can be disheartening. Or, maybe I really am just bad at things! I enjoy doing them though, and that’s the main thing. For anyone out there with a creative bug, I hope one of these suggestions might encourage you to try sending your work out into the world. Best of luck!

Taking on Anxiety

Quick-hints:

  1. Everyone gets anxious sometimes. It’s when it’s stopping you from doing things and you’re making-up excuses that you need to do something about it
  2. Suffering from anxiety is as real and problematic as having a phobia. Or a broken leg
  3. If you learn to recognise anxiety coming you can head it off using whatever technique works for you
  4. Breathe, relax, work to control what you can and let everything else go
  5. If you do suffer from anxiety then congratulate yourself for every win: you might feel silly for ‘panicking over nothing’, but if you still manage to do things then you’re working harder than other people to achieve the same result

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Anxiety is linked to adrenaline and the good old ‘fight or flight’ response, a response that is instinctive, and usually keeps creatures alive. Therefore, everyone gets anxious at one time or another because we all have this safety feature. The differences come in the level and duration of anxiety, the cause, and how well people cope.

There are plenty of techniques said to help with anxiety: meditation, yoga, dance, hot baths, aromatherapy, massage, certain sports such as running. . . If you look at any of these closely enough you’ll see they all have 3 things in common:

  1. They take your focus from things you can’t control to things you can
  2. They involve steady breathing, relaxation of muscles, control of movement
  3. Often there is an element of visualisation and/or escapism

These things are key to curbing anxiety, and they all take time, effort and practice to get the hang of. But it’s worth it because even if you don’t get rid of the feelings completely (and if you get it badly I’m sorry to say you probably won’t) you can lessen it, try to manage it so you can still function and do things you want to.

As Mia from the Princess Diaries said (as well as several other people apparently): “Courage is not the absence of fear, but rather the judgement that something else is more important.” If you can find the thing that’s more important to you, you can do all sorts of things you never would have believed.

Now, I haven’t been diagnosed as having anxiety, but I don’t remember a time when I haven’t got worried, even panicked, about all sorts of things – my mum helped to teach me (so long ago I can’t remember what she said) how to deal with these feelings so that although the physical and psychological symptoms are still there squirreling round inside me, I don’t so often let them stop me from doing what needs to be done.

For those out there who have never suffered bad anxiety, it’s horrible, and although you can know the symptoms and see them in others, I think you still won’t really know what it’s like to go through because it’s one of those things you have to experience to truly understand. But I’m going to describe it anyway. First, there’s how it affects your sleep and appetite. Then there’s the racing piranhas-123287_640.jpgstuttery pulse, the rabid squirrels (or piranhas!) running round gnawing on your insides, the wind-tunnel feeling in your head, haywire temperature control, jitters and shakes so bad you couldn’t write if your life depended on it-  If it’s really bad or goes on a while then afterwards, when the anxiety is finally gone, you just crash out completely. And it’s not a full-blown panic attack as far as I’m concerned if there’s no hyperventilating, hysterical crying, locking oneself in the bathroom, or whatever. (Panic attacks are embarrassing as all get-out, especially if you know you’re doing it but can’t stop – thankfully that’s only happened to me once or twice in recent years) No, what I first described was how I felt going back to school after a break, when I hear the phone ring, (yes, I have something of a phone phobia) going to appointments of any kind, and so on. But I’ve got so good at managing and hiding my anxiety that most people describe me as a confident person – go figure!

So I know it is possible to deal with anxiety without medication, and although it may never vanish altogether, it does get easier to deal with on the whole. The final piece of advice I’ll leave you with is: if what you’re worried about is something you can do something about then get on with it, otherwise try not to think about it. Easier said than done, I know, but applying logic to your fears can sometimes help – it’s all part of managing responses.

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.

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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.