This, I am afraid, is a long one!
It is easy to be tempted to jump at every solution or diagnosis doctors or patients throw at you when you are very ill. However, it is also just as easy to assume that whatever diagnosis or solution thrown at you is wrong.
As those who regularly read my blog know, just under a month ago I received a re-diagnosis from M.E. to Dysfunctional Breathing Syndrome with secondary Fibromyalgia. When I released this information to the world, it was met with a mix of hope without fear of potential disappointment and dire warnings of the dangers of believing a word of what the doctor had told me. Some were absolutely sure that this meant that very shortly I would be 100% well. The other side thoroughly believed that the treatment I would now receive was going to doom me to rapidly worsening ill-health if not permanent disability.
I had to find myself somewhere in the middle. Not willing to accept that this now meant there was hope of 100% recovery but equally not willing to believe that a specialist with many years of experience could be completely wrong. Over the last month, I have wafted from total belief in my recovery to total disbelief. Now, I believe I find myself in the sweet spot: determined to do what I can to improve my health but keeping a wary eye out for danger signs that might lead to the doomsday scenario suggested by some of my readers. Accepting this opens you to both hope and disappointment, often at the same time.
After my last blog, I was contacted by somebody from Phoenix Rising – a respected M.E. forum and advocator for M.E. patients’ rights. They asked me if I would continue to blog my experiences, as patients needed to know whether there were other potential treatment options out there and what might happen if they too traversed my current road. There is no question in my mind of the importance of doing this.
When I was very ill, the very lack of positive stories: the stories of those that had made significant steps towards recovery or even complete recovery, made it very hard to keep a grasp on hope. Those who blog or post on forums tend to be those who are still very ill, many of whom will have been ill for decades.
Those who recover understandably tend to move on and do not leave behind the story of how they got there. While my story may not be a story of total recovery (yet), at the very least it is now a story about how improved health can happen quickly under the right circumstances. I plan to continue blogging into what I now hope will be full health and indeed beyond. I hope I can find a way to provide just a little bit of hope to those that might need it.
My health has improved significantly over the last number of weeks. It has improved at a rate that has surprised and shocked me. The changes have been incredible.
My parents, husband and many others have told me how my voice has changed, that I’m beginning to sound like the old bubbly Karen they once knew. I can hear that in myself. I can feel that less energy is needed simply for the process of conversing with somebody.
A day tires me out but rarely does it fatigue me. Until I became ill, I would never have been able to define the difference between fatigue and tiredness. The difference is stark. Tiredness can be dealt with by sleep, fatigue remains largely unaffected by sleep, no matter how many hours you lie there.
I have discovered a new problem – although I must still pace and rest regularly, my day is now so filled with walking, yoga, swimming, driving and socialising that I struggle to find time to do the things that filled my day when I was just too ill to leave the house. Things I learnt to enjoy – writing being a primary example. While previously I would spend at least 2 hours a day writing, now I struggle to fit in more than that a week. It is regularly planned into my day but just as regularly is planned out by an unexpected request from a friend to meet for lunch or the fact that it is a sunny day and I want to do a little gardening. My life is now fuller, while not yet normal certainly on the road to normality.
So how has all this come about? In reality, I am not 100% sure. Perhaps, this would have happened anyhow without re-diagnosis. Perhaps, re-diagnosis has given me the freedom to allow myself to get better. Perhaps, it is that I actually do have a breathing issue and dealing with it is helping. I do not know. Although knowing me, I think I can be certain that it is not that I now feel free to get better.
As soon as I returned home from the Rheumatologist I started to research a) what Dysfunctional Breathing Syndrome was and b) how did I start to do something about it. Becoming aware of how a normal person breathes and how many rough breaths per minute they should take, made me more aware of how I was not breathing correctly and how I was breathing far too often a minute.
Since then I regularly stop myself, assess how I am breathing and if I am not doing it correctly – correct it. Practice again breathing properly for a minute or two then get back to my life. Even prior to my first appointment with a physio about ten days after re-diagnosis, I began to feel more energetic, more clear headed. Again, was that purely psychosomatic? Possibly, but I am beginning to reach the conclusion that it was not.
I am not a doctor or even somebody with a medical background, please forgive therefore the very layman understanding of what is going on with my health. Some of the precise details below may be somewhat inaccurate but the overall meaning should be right.
Not as often as previously but still at times, I find myself upper chest breathing. These are very shallow breaths that don’t involve the use of your intercostal-diaphramatic muscles.
Click on the link to see how I should be breathing!
This means that my lungs were rarely if ever filled correctly. In order therefore to get enough oxygen, I had to breathe more often to compensate for the low level of air I inhaled each time.
This however still meant that my body didn’t have enough time to utilise the carbon dioxide in my breath in order to transfer oxygen to my haemoglobin. This therefore carried the problem around my body in my bloodstream: messing up the chemical levels in my body and causing too little of one chemical and too much (such as lactic acid) of another. All told therefore some if not all of my symptoms may to a greater or lesser degree be affected by my shallow upper chest breathing.
The instant benefit of a re-diagnosis was that Dysfunctional Breathing Syndrome is covered by our private medical insurance while M.E. (because it is chronic) is not. This meant that referrals came fast. Where my first NHS physiotherapy appointment is scheduled for October 15th, I have already had 5 physio appointments privately. Additionally, I have also seen a chest specialist – who also diagnosed Dysfunctional Breathing Syndrome although he refused to rule out the possibility that M.E. may also be playing its own role in my ill-health. Interestingly, he used to be an M.E. specialist.
The first thing I have had to learn to do is count my breathing. Try saying Bombay Sapphire Gin (my favourite type of gin for those looking for presents for me). Inhale for Bom-bay, exhale for Sapph-i-re, rest for Gin. i.e. count two seconds for inhalation, three seconds for exhalation and briefly relax my stomach before inhaling again. I was told when I was actively practicing this technique, to lie down flat with my head supported and place one hand on my upper chest (above the breast bone) and the other just below the breast bone. I need to practice feeling my lower hand raise as my chest expands on inhalation and while there will still be movement, the upper hand should not move as much. If it moves more, than I am upper chest inhaling.
Initially, practicing this made me realise that instinctively I was moving my stomach in for inhalation and out for exhalation. Clearly, ridiculous. How can I expand my lungs if I was actively reducing their space for expansion? Equally, how could I expel enough air from my lungs if I was actively expanding my stomach and therefore not using my diaphragm? The diaphragm being the balloon like muscle under your stomach that pushes the air out of your lungs during exhalation by reducing the space your lungs can occupy.
Also, I wasn’t using my intercostal muscles (the muscles that help your chest to expand and contract. This therefore made it even harder to get enough air into my lungs and further to expel the air properly.
By concentrating on trying, in simple terms, to use the whole of my chest (especially the lower chest) to breath allowed me to inhale more air and importantly give the oxygen and carbon dioxide enough time to do what they needed to do before I expel the waste carbon dioxide.
So now, I find myself during as many TV adverts as I can, practicing my breathing. If you could hear my mind as I walk down the street, you would hear, ‘Bom-bay Sapph-i-re Gin, Bom-bay Sapph-i-re Gin’ on constant repeat.
Numerically, the consequence of being so very aware of my breathing has slowed my breathing down. As soon as you try, of course, to count how many breaths per minute you take you subconsciously breathe either faster or slower. However, bearing this in mind, the day I was diagnosed with Dysfunctional Breathing Syndrome I tested myself and found my rate about 25 breathes per minute – today 13. Pretty much normal. This is perhaps not the most accurate way of testing my breathing rate but for a home method it will have to do.
There is no question therefore in my mind, whether or not I really have this Dysfunctional Breathing Syndrome, that actively trying to breathe in a better and slower way must have improved my health. Whether it will provide a long-term cure is yet to be seen.
A friend of mine who is a long-time recovered alcoholic made this analogy for me. Stopping drinking does not solve the problems that caused you to drink in the first place. It does however provide you with the opportunity once the symptoms caused by drinking are reduced, to try and deal with the initial reasons that caused you to drink in the first place.
You won’t be able to deal with these causes all at once but step by step you can deal with the most important ones. That doesn’t mean you will ever deal with all your issues completely but it does at least alleviate the worst of them. Continuing not to drink however is one of the only ways you can stop yourself from exacerbating these symptoms again.
I see the same with me. Breathing badly whether it is an illness by itself or just a symptom was making my health worse. If breathing correctly allows me to reduce if not eliminate some of my symptoms, then it simply makes it easier to deal with the remaining now more isolated symptoms. If, however, I forget to breathe properly again, then this will inevitably bring back some if not all of my symptoms.
There may be several reasons why I experience fatigue and several reasons why I feel pain and stiffness but if breathing properly reduces or eliminates some or all of these, then that allows me to get more out of life. To do more without risking damaging my health. To begin to start to get fit and recognise that there is a difference between the ‘M.E.’ lactic acid ache of muscles and the ‘I’m using muscles I haven’t used for a long time’ lactic acid ache.
So today, I look at my achievements of the week and I’m very grateful for and proud of all I have achieved. I have learnt to know my body over the last year and I know that I have not damaged my body further by becoming more active. This week I have: swam 30 lengths of a 50 metre pool; I have driven for 1 hour and 40 minutes; I have walked 9.2 miles; I have done full body stretches everyday holding each stretch for 19 seconds; and I have done 90 minutes of yoga. In March (6 months ago) an average week consisted of walking only 2.25 miles with no yoga, no swimming, no driving and no stretching. Out of the last seven days I have socialised with friends 6 times, each time for at least 2 hours. The days back in March where I had to rest all day and go to bed immediately on return just so I could spend 40 minutes with friends seem a long time ago.
It is clear therefore that over the last month I have seen my activity and my health improve by at least 20% if not 30%. If it is coincidental then so be it; if it is psychosomatic so be it; if it is because my breathing is better so be it. I’m not sure what has caused this improvement in my health but I will continue to do what I currently am because something is working and to use the old saying, ‘if it ain’t broke, don’t fix it.’
Thank you to everyone who has read my blog. Today’s blog sees What Will Happen to M.E.? reach 10,000 views from almost 80 different countries. Amazing.