THE SPOON THEORY – A wonderful piece on measuring your day!

images (12)

As anyone will know who has a chronic illness, tiredness is one of your biggest hurdles. As soon as I do too much my breathing becomes worse! Its like a catch 22 because it’s important to stay active with this disease. However, with careful management you can get a lot more out of your day/week. I manage quite well, but I really pay for it if I overdo things, a duvet day will be on the list for the following day. I have tried to ignore this to my peril because if you don’t look after yourself with COPD you can end up very ill. I have done this more than once and now I will never take on more than I know I can handle just because I dont want to let people down. In the end you cause them more trouble than it’s worth by being in hospital or needing more help around the house than usual. The magic word NO has to come into to your vocabulary a lot more and I have found this word very very difficult to say for some reason. This COPD sufferer explains it very well –

The Spoon Theory by Christine Miserandino really helps you measure out your energy, trying to avoid overdoing things. Or getting into that circle of doing too much ending up ill then doing too much and ending up ill again etc etc etc.

It might also help your friends and family understand how you feel most days and why ‘you are like you are’, especially when they think you are suddenly neglecting them and not calling anymore. Even having the energy to pick up the phone and have a natter can be beyond you some days.


h3>The Spoon Theory by Christine Miserandino

images (14)My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

spoon-theoryI started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to images (11)make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. Youimages (13) have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her downloadright away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t evenimages (18) get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. Iimages (17) summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I wasimages (19) getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

images (15)After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Advertisements

THERAPIES THAT CAN HELP

Salt Caves

salt-cave-423396

Quite a lot of people swear by these and one of the members of a Facebook COPD site was featured in the following video, explaining how it had helped him. When I can find one nearby I am going to have a go.

The following site has quite a lot of information if you are wondering if you might start going to one as part of your new year healthy promise.

About Salt Caves (click to find more info)

Below is the video explaining how the salt caves had helped this members COPD

But My Favorite Therapy at The Moment is Reiki – You cannot beat it for destressing

Reiki – This Really Helps Me

Reiki is – a healing technique based on the principle that the therapist can channel energy into the patient by means of touch to activate the natural healing process of the patients body and restore physical and emotional well-being and I loved it!  

I didn’t know what to expect at first as I didn’t quite understand what this was all about. And, you don’t until you actually experience it. I laid on the bed in this dimly lit room and my – don’t exactly know what to call the young lady that did it, I can refer to her for the purpose of this post as my Therapist – put warm towels on my feet and placed a favourite sent of mine (lemon) on my chest, put on some background music which sounded strangely oriental and started the procedure by placing her hands on my neck. And no she didn’t try to strangle me as some people would like to!  It was a very odd experience she just placed her hands one on either side of my neck and left them there for quite a long time. It was very relaxing, after a while her hands changed to another position (on my head), then back to the neck.

Finally after about 30 mins she moved down my legs to my feet. At the end of the session I felt very, very relaxed. I also felt tired and came home and went straight to sleep for about 3 hours. I don’t know if you are supposed to do that but that was the effect it had on me.I have booked another appointment for next week and am really looking forward to my next session. I am also researching it to find out exactly what it can do and if I can help myself I found a good site – Hand Positions this site explains the process very well and the following video gives you the initial skills to make a start yourself –

Today was a very successful day I  totally enjoyed my Reiki and I also found out that the British Lung Foundation had agreed to start a Breathe Easy group in Huddersfield. This will be a great help to all my fellow sufferers as knowledge about this illness and exercise are both vital elements to living a longer more fuller life. I asked about the British Lung Foundation having a group in the area some months ago. They informed me that a venue would have to be provided  ‘free’ and there would have to be access to clients to make the group a success of course. I mentioned my ideas to the Kirklees Hospice and very kindly they offered a room and their client list! Just can’t wait to get this group off the ground.

To be continued …..

MY APPOINTMENTS AT JIMMY’S

THE FIRST APPOINTMENT

THE BEXLEY WING

12373341_10203818922234115_5517838369694266039_n

The day before the appointment I went on Google Earth to familiarise myself of its location in Leeds and I am glad I did, it is a massive hospital. I did a few print outs and went through what I wanted to ask the specialist surgeon when I saw him. And said all my prayers for help that it would be a good outcome.

I had a poor nights sleep wondering and worrying what they were going to say to me at Jimmys. My own specialist is always talking doom and gloom and so is my GP, telling me how bad my X Rays are and breathing tests etc. However, I am wondering now if my specialist at Huddersfield saw a better picture when she saw my scan recently, because, after pulling me in for an extra appointment last month, she said that she wanted a chat in general about going ahead with the valves and that I really didn’t need to have the operation done. She said, ‘people live for years and years like you are’, (exactly I thought, I don’t want to live like this for years and years), this was a bit of an about turn to how she had been talking to me before! (sorry if I have previously mentioned this in another post). Well back to Leeds.

The journey to the hospital was very easy for me as my Daughter drove, bless her it was only the 2nd time she had driven on theimages (10) motorway and the first time she had driven in Leeds. Anyone who has driven in Leeds knows that the ring road is a nightmare and the first time I went to Leeds years ago I managed to do a few circuits of that before I reached my destination. I am not good with directions. But, now we have our built in Sat Nav I thought it would be easier for her. But noooo it wasn’t! Poor lass she only got stuck on the ring once on our way home and got really cross with the Sat Nav. When we arrived at the Hospital I was so glad that I have familiarised myself with its lay out because we would never have found our department as it was right around the back of the building. It was great because my daughter dropped me off outside the doors so that I didn’t have a lot of walking to do and she then parked the car up in the multistory, it saved me so much hassle.

The department that I was seen in was Surgical Outpatients and was located on the ground floor so it was very easy to find and they were running quite late so we had to wait for about an  hour to be seen.`1

When I saw the consultant surgeon at Jimmys he drew a picture of my lungs and showed me the bits that were not working and it wasn’t as much as I had previously been told! You can’t believe the relief that I felt I could have cried. It is actually just the very top parts of both sides the right side being worse than the left. He explained that the parts not working had developed multiple  bullae, which is –

an air pocket in the lung that is greater than one centimeter in diameter (across). Bullae tend to occur as a result of lung tissue destruction and diseases such as emphysema. Their presence in the lung takes up space, causes pressure and blocks your breathing.

I told the consultant surgeon that it felt as though I had a blockage in the top of my lungs when I tried to breath. I said it’s not like I am out of breath, I just can’t catch my breath and its a horrible feeling you panic. Its like being water boarded. He showed me the back of my lungs on the scan and said they were in fairly good condition. SO what is happening I would like to know and he then explained what was going on!

He listened to my lungs and said that a lot of good air was being taken in but very little pushed out. my lungs were running out of space because of these two top bits blowing up like a balloon and there is another couple of bits lower down but not that bad. So if everything goes to plan the situation can be corrected. I won’t get better overnight it will take time but there is a solution! He gave me two alternatives –

  1. Surgery – they can cut the top bits off my lungs so the other larger part can function correctly (don’t know about this)
  2. Insert valves that will empty the air out and not let any back in, in time these deflated balloons with shrink allowing my good lung to function, no surgery would be involved with this. However, it all relies on funding for this as its a very expensive process. It sounds better though, I don’t fancy being put under the knife but I would be open to suggestions from anyone who reads this post.

Before any decisions are taken I have to have a nuclear scan to test the actual function of my lungs they are not relying on my lung function test I had at Huddersfield, and I don’t blame them I am terrible at blowing into those things. To get a more accurate picture of my lung function the surgeon said the best way is with a nuclear scan and I will have it done within the next few weeks.

He said that they  tend not to operate until the good weather comes in so I shall be having my operation in the summer months, I would imagine some time after March!

I know a lot of people who will read this will think why is she so happy about having all this, bullae, operations and everything, what makes a person so happy to know all this!  Well the reason is, I thought I might be so bad that I wouldn’t be able to have any help and I would finish my life off like this, which is not a great quality of life, being out of breath every day. Its like you have to run a marathon every day of the week it makes you so tired.

Anyone who has severe COPD will understand how I am feeling, I have stopped smoking, done everything you are supposed to do, changed my diet (could do better with that) but, I have done as much as I can to help myself and had run out of options. I didn’t understand what was happening to me why was I getting worse when I had done all I had. Well it was them pesky bullae blowing up and stealing my breath, now I understand what is happening! He more or less finished the interview by saying that I had found them through my own volition  and they would do what they could to help me.

The Nuclear Scan (link to piece on the scan)

I will be having my scan during the next few weeks and I think the above video is quite good. It explains the process quite well and I will be glad when its over. Another Hurdle will then be over. What was it like?

CLICK HERE FOR SECOND APPOINTMENT

Diagrammatic Breathing

How to Activate Your Diaphragm to Improve Breathing

The diaphragm is a huge, dome-shaped muscle at the bottom of the rib cage. Althoughlunganddiaphragm (1) it is used 24/7, it goes largely unnoticed (unless you get hiccoughs). When the diaphragm contracts, in conjunction with the intercostal muscles, it lowers the pressure in the thoracic cavity. This enables air to enter the lungs. When breathing out, the diaphragm relaxes along with the intercostal muscles, allowing air to leave. Air may be forced out faster by increasing abdominal pressure using the transverse abdominis muscle.

The diaphragm also has an important role in stabilizing the core. It forms the top of the core ‘box,’ working with the internal and external obliques, quadratus lumborum, pelvic floor, and transverse abdominis. The diaphragm has multiple origins from the inner surfaces of the seventh through twelfth ribs, medial parts of the L1 to L3 vertebral bodies, the anterior longitudinal ligament, posterior surface of the xiphoid process, and the arcuate ligament, connecting to the aorta, psoas, and QL to insert in the central tendon.

To put it simply, a strong box needs a secure lid and hence the importance of the diaphragm in core stabilization.

diaphragm, diaphragmatic breathing, proper breathing, athletes breathingIn spite of the diaphragm’s importance in respiratory effectiveness and stabilization of the core, I would estimate that in my experience approximately half of the adult population does not recruit this muscle properly at the beginning.

When we breathe, this dome-shaped muscle contracts allowing a reduced pressure in the upper body so that air may enter the lungs and provides tension across the top of the abdominal area. As we breathe in, we should see the stomach rise slightly as the dome contracts and compresses the abdominal space. As we breathe out, both the chest and the stomach fall. If you look at young children, this is what you usually see.

I often see exactly the opposite in adults. Their chest rises as the intercostal muscles contract. Yet, the stomach is drawn in by activation of the tranverse abdominis muscle and the diaphragm is not engaged. Whilst this might present a more pleasing profile in a mirror, it reduces the volume of oxygen available by only partially expanding the lungs. This also results in weaker core stabilization.

Over time, breathing in this way will cause the diaphragm to weaken through poor recruitment and performance will suffer. And when I say performance, I mean this both from a respiratory and functional perspective.

IT BEGINS 2009 ish – And coming to terms with your diagnosis

14613648-Education-and-learn-concept-pixelated-words-knowledge-is-power-on-digital-screen-3d-render-Stock-PhotoMORE THAN THREE MILLION people in England are living with COPD. This lung disease kills about 23,000 people a year in the UK. The major cause of COPD is smoking, even after you have stopped you are still at risk. People who have perhaps stopped smoking for 20+ years previously think they are safe but can and do develop it. About 20% of cases are work-related, triggered by exposure to fumes, chemicals and dusts at work. COPD can also develop in long term asthmatics. Annoyingly, some people who suffer from COPD have no obvious reason for the onset, see COPD story of a never smoker! Premature deaths from COPD in the UK was almost twice as high as the European average in 2008 and premature mortality for asthma was more than 1.5 times higher, AND its increasing even though smokers are decreasing.

There is a real need for further education of the general public about this disease because if it is caught too late it can be difficult to control. The key to living a good quality life with this disease at the moment is to catch it early before too much permanent damage has been done. However, even if a lot of damage has been done there are ways of slowing progression and living a better quality of life. But people need to have the knowledge in order to carry this out!

Every Journey has a Story and Mine Starts Here ……

It was 2010 at Halifax Hospital and I shall never forget that day, the Doctor said, ‘you have COPD (Chronic Obstructive Pulmonary Disease) and you are in the very severe category!’. I knew I had asthma but this was a different kettle of fish. ‘You have emphysema, which has caused you to have a very low lung capacity’, he said ‘and this cannot be reversed’, the rest he said just blurred and went over my head as I was in shock.  I was stunned as I left his office, I started to cry and said to the nurse, ‘I want my life back!’ Of course I knew something was wrong and already had been told that it might be COPD but not emphysema and not as bad as he said it was.

This is a typical situation for Doctors to throw this life altering kind of information at patients, then, leave them to fumble about not knowing what to do, and I did a load of fumbling about after that because no one told me what to do. I was just left to my own devices for a long time. And when knowledge is the key to slowing or even halting the progress of this disease it’s unforgivable.

I was on my own and had to drive home on my own and I was to find out that this journey would pretty much be on my own for the next few years.

ribbon_separater(3)

It was me that pursued a diagnosis. I was scared to find out but I paid £300 for the privilege of being given the worst news l have ever had in my life. Initially  I paid privately to go to a BUPA clinic to see a chest specialist.

I had one spirometry test previously and it had been very poor,  my GP said that it couldn’t possibly be correct and I had the worst technique he had ever seen, it was 33% and I wonder now if it was right! I was a non smoker at the time and hadn’t smoked for about 18 months when I had that test done. I was working and it was 2007.

Now it was 2010 and I needed to know what was wrong, I didn’t think for a minute that it was anything serious but I wanted to get to the bottom of it. Talk about pandora’s box but I did need to know! I went on my own to the clinic and showed myself right up! I walked into the specialists office sat down on the chair and was told to blow into the spirometry machine which I just couldn’t do. It was terrible, I found it so very difficult I almost wet myself with the effort,  during the test I went very dizzy and thought I was going to pass out. At this point he said he wanted to see me in his clinic in Halifax through the NHS and we could pursue it in more detail but he didn’t really say how bad things were just the fact that I had COPD and that was as much as I could handle at that time.

My first reaction to this news was yes shock, then I was upset and then Iacceptance-6 went into denial. They have got it wrong! I did smoke but not much, in fact I hardly smoked anymore. Oh yes, they must be wrong I’m just unfit and overweight! And this state of mind carried on for a few not months but years!

I started smoking full time when I was 26, before that it was just now and again. Now I am aware that for some people smoking is toxic and it’s like playing a game of Russian Roulette you just don’t know who it will effect until you are crippled from it.

Very few people actually know what COPD is and how to handle this horrible, potentially life destroying disease, its causes, management, outcomes and what you can do to help yourself and stop or slow down its progress. It is one of the modern world’s most common killer diseases and it is today the third leading cause of death after Heart Disease and Stroke. So why don’t we know more about it?

Excerpt from W.H.O

“leading causes of death in the world, 2000 and 2012. Ischaemic heart disease, stroke, lower respiratory infections and chronic obstructive lung disease have remained the top major killers during the past decade”

 

This is what my blog is all about educating anyone who would like to know about this subject and showing my progress as I work through remedies. both exercise, nutrition wise and surgical. Over recent years many new forms of medication have been found and a lot more is understood about this illness, its not the killer it once was if handled right.

WIN_20150816_12_25_43_Pro

This is me, I am 59 and have got very severe lung disease and a 21% lung capacity. I have gained 4 stone from stopping smoking and found out this week that I have managed to loose a whole stone which is great for me! Within the next 12 months I hope I am going to have some Zephyr Valves inserted to help me breath better. Follow me on my journey to improve myself, if you do you will be very welcome!

COMING TO TERMS WITH THIS ILLNESS

GRIEFOne of the worst parts of being given a diagnosis of COPD or any of the related lung diseases that come under this heading is the feeling of loss, it’s like a bereavement. And you seem to go through all of the stages of bereavement until acceptance comes and then you can get on with your new life.

You feel as if your life will never be the same again. I can remember crying, ‘I want my life back’, but it was too late. It wasn’t until I faced my demons and accepted what I had left that I could face the future and try to make the most of what I had left, which was considerably more than some people and less than many others. This illness relies very much on educating yourself and trying to stay as well as possible, trying to avoid lung infections being the top of the list. Also COPD can be very very scarey and causes anxiety problems. Try running around the room breathing through a straw – yes, I mean that – anyone who is reading this and has not got any lung damage please go ahead. Grab a straw and start walking about the house breathing in and out through that tiny straw. That is what it is like for us –

When my lung function dropped in 2010 I knew there was something not quite right. I had been in hospital in 2009 with Pneumonia but I did not have a diagnosis of COPD at that time, although I was very breathless. I was working then but finding it increasingly hard to do stairs and hills as previously mentioned but I was walking very long distances. I don’t know what my lung function was at this time.

In order to measure your lung function the hospital and most doctors have a machine called a spirometer (click for a video about ‘spirometry’) . The problem with these tests is relying on your performance on a particular hour of a certain day and also on your technique.. This can be confusing because if you have just had a chest infection your reading may be unreliable, your technique could be poor and in turn you will receive another unreliable result. However, they are the best indicators of your lung function and could catch many early cases if they were used more often. If I had had as many spirometry tests as I had peak flows with my asthma perhaps I wouldn’t be in the fix I am in now. But that’s another story!

SUPPORT AND EDUCATION ARE KEY TO A GOOD OUTCOME

inform-and-educateLack of support and education back then was huge, in the early days, you seemed to get left to your own devices and this is the time when you need this input, I didn’t understand the biology of this illness how to stop it in its tracks and how to make my life much easier. You often hear people say if I knew what I knew then – well this is one of those moments. I suppose in the back of my mind I was aware that my breathlessness was something to be worried about but you try to kid yourself and make excuses for being out of breath, such as age, weight and fitness levels.

Award Winning Life Coach, Gail Blanke, Wants People with COPD to know ‘Better Breathing is Possible’. A new online video series on YouTube features Gail and a COPD expert discussing the following:

  • Thinking Again About COPD shows COPD patients why they should take action to help manage their disease.
  • 5 Steps to Creating a COPD Action Plan outlines steps viewers can use today.
  • Expert Advice on Working Towards Better Breathing discusses specific lifestyle changes to help patients breathe better.  

Once I accepted that I did actually have this disease and it wasn’t going to go away, I decided that I had better find out more about it and if I could improve my life and improve my symptoms, this was 2012.

See all my other sections on the web site which cover breathing, exercise, weight, diet and new research for treating COPD.

Living with COPD

Endobronchial valves

Living with COPD