Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog


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> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
Official site for this excellent British charity. Includes extremely well populated forums - highly recommended.

> What is Cystic Fibrosis?
A pictorial guide to the key parts of CF and to living with it.

> Cystic Fibrosis Medicine
A somewhat thin internation site for CF patients and specialists.

Other blogs

> Breath of Life
Another CF blog, rather more complete than mine!

> Cystic Fibrosis and Me: A Personal Journey
(Clockwatcher sadly passed away 2006; the site seemed to follow him)

I seem to have lost my links to other CF blogs. If you want yours added, give me an email.

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Wed, Jan 19 2005

Picks-at-Flies's top ten ways of staying healthy

These are my tips and are nothing but personal. I am by nature a curious and competitive person, which influences my decisions, but the tips derive from what I have done that has done me good.

  1. Know more than your doctor.
  2. Have correct diagnosis on your current condition(s).
  3. Create a routine.
  4. Enjoy life.
  5. Listen to everyone, follow nobody blindly.
  6. Three square meals a day. Cereal is your friend.
  7. Take exercise.
  8. Find someone who you trust to look out for you, in case you miss your own symptoms.
  9. Be honest with yourself.
  10. Know your limits and when to break them of if you do something silly or extreme, plan for it.
  • Afterword

1. Know more than your doctor.

This is not a call for arrogance but an aspiration for the future. The truly great physicians have an instinct for what is wrong - everything else can be learned. As a patient you will not encounter the breadth of conditions that a clinician will, but you have one great advantage: you live with your condition day in and day out, and have done so all your life. This applies not only to CF consultants, but also to dieticians, physios, GPs and practitioners of all manner of complementary medicine.

Why do you need to know more? Why is it so important?

a) Everything else follows from knowledge. If you know why you are doing something and you believe in its importance you are more motivated to do it, and more likely to do it well. Indeed, the mere act of striving to find out more information implies a will to fight your condition.

b) Self-Knowledge. You have the potential to know your body far better than any other person can, but this information is useless without the knowledge of how to interpret it. Clinicians do their best to get the useful information out of you, but if you had their knowledge you could be in a much better position to make judgements. The hospital tends to have a lot of information about you under acute symptoms, but have little but sporadic reports on your day to day health and routine. You, the patient, on the other hand can compare your health minute to minute, day to day and build an overall picture far more complete than any chart. You also (generally) have only one CF patient to remember details about.

c) 24 hour analysis. With greater knowledge, you know which symptoms to look out for and what they mean. Indeed, some of the tests applied by CF teams are pretty trivial (although their meaning may have taken much research to isolate). This means that you have continual diagnosis happening. With experience, you can work out when a given treatment is not being effective, or indeed being too effective, and take measures to deal with it (such as 'phone for advice). Compare that to only looking at your current state of health during clinic appointments. Then depending what treatment you are on, you may be able to adjust it to deal with changes.

d) Incompetent physicians. Yes, they exist. Mostly I have found them to be SHOs who only have basic, black & white guidelines on treatment, although in their defence most do learn better judgement. However, I have had battles with dieticians because my diet does not fit their neat little tables (for example). Think also about when you visit other places: demonstrating a thorough knowledge of your condition is highly conducive when convincing other GPs or hospitals that you have a genuine need; going on holiday is much safer if you are aware of the possible problems and can plan for all contingencies.

Where does that leave doctors?

First off, there is always more to learn: ideas, policies and treatments are developing all the time, and then it is the inevitable truth of CF patients that our health will decline at some point and will need more information about, and more ways to deal with, our new condition. The second point is that you need an experienced eye to give a second opinion from time to time, to keep you honest with yourself; this also has the the advantage that you improve your self-diagnosis. Thirdly, if nothing else, patients are not allowed to sign their own prescriptions (although some of us may come close!).

2. Diagnosis.

Surely this is obvious? Why is it number 2?

The straightforward answer is that treating the wrong condition is like flogging a dead horse as the floodwaters break. Diabetes was my personal diagnosis bugbear for a while, causing me unnecessary IVs and a lot of grief. However, there is a bit more to it than that.

One of the most agonising conditions is knowing something is wrong but not knowing what. Had IVs but still feeling ill? Why? Lung infection, ABPA, dust, pollution, general bugs, heat, damp, salt deficiency, high blood-sugars - all of these and more can make you chesty, and many of the symptoms are the same or similar. Chinese medicine includes many diagnoses, depending on factors unmeasured by your consultant (including, for instance, "static chi". You will not remove dust with antibiotics, for example; a lung infection may result anyway, making IVs necessary, but they will not remove the core problem.

The ability to distinguish between these, of having a way to diagnose your current condition, solves two problems: firstly you can treat the right problem(s); secondly, and just as importantly in my experience,it removes the debilitating effects of worry. This applies not just on the large scale diagnoses ("I now have pseudomonas. Woopee.") but also on the day-to-day level problems. Find what is wrong (or right) and a great weight is lifted.

3. Create a routine.

Some of this is pretty obvious. I have found that unless I can fit my medication into a routine, I forget to take it. What this means in practice is that I have to have some kind of routine to my whole life or the medication slips through. This is nothing new to most people - ask your family. This comes to the fore when you are tired and ill, when having to think about treatment becomes very hard - at the very time you need to take and do everything.

There are some other aspects to this as well. I have found that without some sort of external structure to my life I just lapse into sitting around doing nothing very much. This is not good for your health. So even when I am unwell I go to work as much as possible, since it forces me to get up and out. Again, this applies to everyone, not just to those with CF.

I have also found I make mental checklists of medications, so when I am going away or taking IVs to work I do not forget anything.

It should also be noted that routines can be broken, with care. The very act of having a routine means you tend to be aware that you are breaking it. See also no.10.

4. Enjoy life.

I think somewhere someone proved that happier people are healthier. Certainly it is too easy to slide into depression when you can see no end to your suffering sight. Not only that, but later on I urge you to be honest with yourself, which removes the rose-coloured spectacles which you can use to disguise your condition.

My solution to counter that is to reevaluate your life. You can choose to be content with your lot and work within that, or you can be ambitious but set goals in accordance with your condition. Once you admit that you are not going to be the Prime Minister, you can adjust to goals less painful.

Incidently, my goals for the next 5-10 years are to become a subject librarian (the highest position you can achieve in an academic library and still viably be part-time) and to have a year between IVs; I also wish to go to New Zealand, but that is constrained more by time and money than by illness!

5. Listen to everybody, follow nobody blindly
or Expand your sources of information - with care.

Everybody is happier playing it safe, and with CF that means doing what the consultant says. But while I have been given some very good advice, I have also been given bad advice. If I had followed the consultants' advice I would never have gone on holiday abroad and never gone to university; in my view I would also have had more unnecessary courses of IVs.

This applies to other clinicians as well. My acupuncturist has a tendency to overestimate how much chinese herb I need or can manage. My physios know well enough that I do listen to what they tell me, but only adjust my regime or technique if I think it is worth it. Medical practitioners do not live with the conditions they treat or the treatments they prescribe, so the treatments they prescribe are theoretical. It is you the patient who has to apply them and fit them in with everything else.

So if you do not follow your consultant, who do you listen to? There are plenty of sources of information out there, some of them more reliable or trustworthy than others. The fact that you are reading this shows that you have sought other sources of information. Indeed webpages, family and friends can all help, although always remember that this kind of source is liable to be subjective. There are also wide ranges of hollistic ("whole body"), complementary (works with the NHS) medicines around, from Acupuncture to Reiki to herbalists of all varieties. Not every type of medicine suits everybody, and you may find one practitioner helps where another does not. If you go down this route, it is probably worth trying a few different people until you find what works for you.

In many ways, this is purely an extension of rule number 1: once you know about your condition and the options of treatment available to you (from the hospital or complementary) you can take your treatment into your own responsibility. You still take full advice from consultants or dieticians or herbalists etc, but the final decision rests with you. You may also suggest a different course of action again.

As was commented on the CF Trust forums, taking responsibility for your own care is difficult. The first time you take a course not recommended by your consultant you take a - possibly scary - step into the unknown, and I cannot deny that you are likely to make mistakes. I feel that it is worth it in the long run, since you should learn from your mistakes and eventually if you succeed you will have more energy and more time.

6. Three square meals a day.

I have always eaten a lot, and part of this is a good diet based around not having snacks. My parents were always tough on snacks and so I grew up not needing them. Having said that, when I got pseudomonas I did develop a habit of buying whole boxes of Jelly Babies which I used as "brain food", and no doubt this was not good for by burgeoning diabetes! I know that other people find different things helpful, but I really have only had one successful diet so I can only talk about that.

In the morning I have cereals, about 3 large bowls worth (far more than the recommended serving), of different cereals for a bit of variety. The day I go down to two bowls is the day I know I am not feeling well. Full fat milk, of course. Lunch is meat, potato and veg. What form the meat takes varies from day to day, the potato is mashed or jacket and then there is green veg. I am told that green veg is especially important for CF patients. My evening meal is bread with a variety of toppings, topped off with a single piece of heavy fruit cake.

Paragraph deleted until greater knowledge is learnt!

Also, most of this food is organic. In fact my parents grow their own veg and fruit (the market price for the raspberries we grow alone would be phenomenal), and much of it is fresh as well. The lack of chemicals in organic food really does make a difference - if you can afford it.

Notice the lack of snacking, completely against the advice I have heard from dieticians' lips. As an experiment, I once started eating snacks (mars bars etc) as the dietician wanted (she claimed I was eating 2/3 of what I should be): I could not eat as much at mealtimes and my weight dropped. Research has shown, I believe, that snacking does indeed reduce appetite. You must make up your own mind.

7. Take exercise.

Exercise provides many benefits to the CF patient: it gives you more energy, improves your lung capacity, improves circulation, makes you fitter (and therefore healthier), exercises your lungs and increases your appetite (muscle an efficient source of body weight!). I have seen no evidence that being fit stops you being ill, but I have found that you cope with illness better, both fighting it and recovering afterwards. Swimming underwater, especially, is good for building up lung strength. I cannot support much of the above beyond personal experience since I have not looked into it. Perhaps someone can provide something more concrete?

There is a good reason why this "obvious" tip is not higher up: when you are ill exercise can serve merely to drain your energy and show up how bad you are. Due to its benefits, I guess you should always try to be as active as you can though.

8. Find someone who you trust to look out for you, in case you miss your own symptoms.

I have found CF problems tend to creep up on you when you are not looking. It is very hard to spot problems that progress slowly, and for this reason alone it is worth having someone else. The problems themselves may blind you, as you become progressively more tired and less observant. And if you are a party animal or workaholic you may not be taking time out to spot your own symptoms.

Such a person needs a number of qualities. They need to understand CF, at least enough to spot that a problem exits. They to be observant. They need to care for you enough, and be reliable enough, that they do not ignore your problems. Finally they need to be tough enough to withstand the scorn of a CF patient who thinks they know better! The person may not always be right, but their job is to urge you to reevaluate your condition when necessary.

This person is also likely to server a secondary function, to comfort you when you are ill, to put your problems in perspective. At least you have running water and a computer you can use!

9. Be honest with yourself.

Following on from many of the tips above is the need to be critical of yourself. It is easy to become complacent, and as your self-knowledge improves it is easy to become overconfident in your own abilities. More important is the human desire to be more healthy than you actually are: it is easy to convince yourself that your cough is a temporary blip when your exams are looming. Don't. Be honest and you will find your condition easier to treat.

10. Know your own limits and when to break them
or when you do something silly or extreme, plan for it.

This has been the hardest section of this document to put down, and has gone through the most rewrites. How do you explain the balance between pushing yourself enough and not pushing yourself too much?

The greatest problem I have found with Cystic Fibrosis is the lack of energy that goes with it. I hold to my belief that CF does not stop you doing anything that a normal person could do, you merely require more time to prepare and recover. Your limits in this case are what you can reasonably do and still carry on as normal. So going out a couple of nights a week might be fine, but having 4 hours sleep every night for a week might put you in hospital.

Which way you should interpret this tip depends on the individual. To the extroverts out there who wish to drink and party every night, this should be a call to reign in the exuberance and think about the consequences. To the introverts who spend their time worrying about their health and to those who feel to tired (or lazy) to stretch themselves, this is a call to live a little, to put some energy back in your life.

How do you know what you can do if you don't try? The essence of this is to keep trying to do more or different things, because you want to or simply because you can. The other side of the coin is to find out how much everything takes out of you, and how much of it all you can do. Always doing nothing is a sure way of getting more ill, so always try to do as much as you sensibly can.

The final part of this equation is to let go occasionally. Nobody wants to be a caged bird, everybody wants to enjoy themselves (or go to a special event or, more seriously, visit a relative in trouble). You are always going to want to do something that is medically stupid from time to time and in my view you should go for it - but you have to realise that it is silly and make plans accordingly. Take an extra day off work, do your homework ahead of time and, for the diabetics, take spare insulin and chocolate. Doing the occasional wild fling is a good way to fulfil number 4 and be happy.


I hope this list has been of use to you. I apologise for any generalisations, bias and subjectivity present, and hope you take it in the spirit is meant. One serious omission is complementary medicine: this is because no one system works best for everybody, not because I do not believe it is important. I welcome comments and suggestions, and will display any marked "For publication". Please send comments to picks-at-flies@werepenguin.co.uk.