COPD – WHEN THINGS GET OUT OF CONTROL

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Well, things really went pear-shaped for me these past few months. It has been like four months from hell! After a horrible sore throat at the beginning of July it went on to progress to a horrible chest infection towards the end of July and I ended up in the hospital for ten days. But this was not the end of my nightmare it was just the beginning. Huddersfield Royal Infirmary has merged with Halifax. Because of this reorganization, they have now lost their best and most experienced consultant. because I heard from the staff that the changes that were coming into the department she did not agree with and she was right. There is no longer any continuity of care you see a different chest doctor every day as they work on rota sharing the workload. This gets a bit annoying because you are having to explain everything from scratch every day to different specialists. In the end, I wrote a bulleted list on a piece of paper answers to all the questions that they usually ask one of their favorite being what had brought me into the hospital this time?

changes-comingMy Treatment Regime Was Changed!

Usually, when I have a flare up I go into hospital and my consultant prescribes IV antibiotics1834751917ce3b0e284a4d564f37683e--color-blue-splash-of-color and an aminophylline drip for the asthma part of my illness and perhaps a magnesium drip. Because I have brittle asthma my consultant used to treat the asthma first. I have also got aspergillus bronchitis so that does not help the situation. It has always been a long drawn out process which involved about 2 weeks in the hospital to open the airways back up. But this did not happen I had antibiotics in the form of tablets and carried on with the prednisolone which I had already been on for over a week and the drip for two days and then when it started to flare up again because they had taken it off too quickly I was put back on it again for another two days it was a right pantomime. They said I did not have an infection because the white blood cells were higher than they should be but that was because I had been on steroids and because II did not have a temperature and I wasn’t wheezy just tight it proves no infection. I told them that I never usually have a temperature as its normal for me to have a low temperature as I have an download (1)underactive thyroid and that 37 degrees is high for me. Dr. Graham my previous consultant was very happy that we had found a method for getting me up on my feet again. But, she was no longer there and the consultants dealing with me now decided that they were not going to treat my asthma any longer just the COPD. They sent me home after about 10 days very ill and with a DNR on my record, I was distraught. For those of you who don’t know a DNR stands for ‘Do Not Resuscitate’. I can tell you that did not go down very well with me it was the worst thing they could have done. I was very upsetting for my family too. Well it was like showing a red rag to a bull, I immediately got a frame for it and intend to hang it up on the kitchen wall. “No way was I going to let this get ME down” I thought, “I am going to get a second opinion about this”.

After a week of struggling on my own at home, I went back up to the hospital and theyCWef2VOWoAE6Nri sent me home a day later with palliative care and respiratory nurses saying there was nothing more they could do. I will remind you of one thing – I am NOT on oxygen, have NEVER been in ICU and have NEVER had any kind of help with my breathing during a crisis only the normal nebulizer, antibiotics and steroids. I will never forget that feeling of hopelessness that I felt at that time, it completely overwhelmed me and totally knocked the stuffing out of me for a while. It might have been easier if I had a partner to talk it over with but I do not so the feeling of being alone with all this did not help one little bit.

All the hard work I had put into living with this illness and surviving seemed at that14613648-Education-and-learn-concept-pixelated-words-knowledge-is-power-on-digital-screen-3d-render-Stock-Photo moment a complete waste of time. I felt as if they had written me off! How was I to stay motivated? At first, I must admit I almost gave up and then all my facebook friends who have this illness messaged me, rang me and one traveled a full hour when she was ill herself to visit me. It was their words reminding me of how far I had come that made me realize I could not give up ever. I started to use all the knowledge I had under my belt to get better.

During those weeks I was having visits at home from the respiratory nurses three times a week and really struggling to manage. I also had carers in on a morning and afternoon. And with their help and my knowledge after four weeks I started to pull up a bit. However, I am still annoyed with the way they treated me because I really suffered for much longer than I should have done normally. Sending me home faster was definitely not a good thing for me and the stress of their diagnosis did not help one little bit. When I think about going into hospital again I get panic attacks the experience was so bad. Doom and gloom is not good for anyone with a chronic illness while there is a smidgen of hope that is what you have to concentrate on. Just like these beautiful ladies in this video show, you should never give up and a positive attitude is everything! Shame these consultants do not realise this.

A couple of the respiratory nurses that had known me for some years did not agree with the way the consultants treated me either and one made her opinions known to them. All they seem bothered about was keeping people out of the hospital and doing that by any way available to them. They are concentrating on getting people home to leave beds free for other patients coming in but this is no good you must send people home well enough to cope on their own. Is this what our NHS is coming to?

I was losing faith in the system and panicking now and wondering how I could find a doctor who was on the same page as me.  And just when I was thinking there was no way forward one of my COPD friends told me of a contact she had for a consultant at another hospital who she was very familiar with. My friend asked if she could have a chat about what is going on with me on my behalf.  Of course, I was grateful for any advise I could get. She is called Rachael Moses and she is a very busy lady so I was so grateful for her help. Thank God for social media, I contacted her straight away.

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NHS consultant physiotherapist Rachael Moses was chosen from thousands of entries as one of two finalists in ITV’s Good Morning Britain Hospital Health Star Awards.

I sent her an email with all the results of my recent breathing tests and the full story of what had happened and was elated when I received the reply that they did not agree with the DNA going on my file and that I should consult a specialist at Wythenshawe Hospital in Manchester. What a coincidence, I had already been in touch with Wythenshawe Hospital because Professor Denning at the hospital is at the top of his field in treating Aspergillus Bronchitis and I needed some advise. To read more on his involvement and treatments see –Aspergillus and Professor Denning.

Additionally as well as having that department, I found out through Rachael that they have also got Doctors and imagesConsultants who are at the very top of their field in treating COPD and brittle asthma. They are known for having one of the best respiratory departments in the UK and do a lot of research on the subject of brittle asthma and COPD. Why had I not known about them before. I went all the way down to London to see Dr. Kemp when this great hospital was only 30 miles from my front door and I can get transport to take me and bring me home. My GP has now referred me to their team and I really hope that now I will get a specialist who is rowing in the same direction as me! Because there is nothing worse when you are going in opposite directions. So what is our motto for this disease NEVER GIVE UP AND ALWAYS TRY TO STAY POSITIVE?

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Is it Food Addiction or Simply a Case of Emotional Eating?

Is it Food Addiction or Simply a Case of Emotional Eating?

“If hunger is not the problem, food is not the answer”

Excerpted from What, Exactly, Is Emotional Eating? | A Black Girl’s Guide To Weight Loss

This is a real problem to a lot of people and I am not ashamed to say that I am one of them. I am addicted to carbs and it is taking one hell of a lot to get it under control, together with my emotional eating this can become a perfect storm, turning into a  high calorie, high carb, high sugar blow out! So what is happening when I have one of these blow outs, am I suffering from emotional eating or just an addiction to certain food types?

Food can become a way to cope with emotional matters, and the repetition of this coping mechanism can breed an addiction. By using food as a means to deal with anxiety, stress, grief, and the like, the body becomes conditioned to crave that process to feel relief.

People often associate pleasure with foods that contain fat, sugar and salt. As innocent as it may seem, this starts at a young age when candy and soda are given as a “treat” or “reward” for good behavior, grades or a celebration. Research studies have shown the reward centers of the brain to light up and release dopamine when pleasurable foods are consumed. Could this be that we’ve conditioned our bodies to react this way? The following is a great way to explain what is happening to us when we feel compelled to eat when not hungry, its from another blog by Erika, she feels that this is what compels us to believe that emotional eating is the answer.

Once upon a time, in a land not very far from your home… lived mankind. No fast cars, no shiny structures, no skyscrapers, nothing. Just man.. rock… and animals.

See, this worked for man because his only task was to hunt wildlife, and gather his kill for his family. That was his responsibility. His purpose was to bring the salt and fat from the animal to the family. Not work, not bills… just hunt. Because life was much simpler then, this was man’s sole source of stress.

One day, man could not hunt. Every time he threw his spear, he’d miss his prey. He just couldn’t catch SQUAT! His family was to go hungry and he just… he couldn’t take it. The stress started to build up inside of him.

Because stress about the inability to eat is the only source of stress for man, his body became used to the eventual chain of events. His body knows: Lots of stress = lack of food coming in. How did his body react? His body decided to hold on to what it had – by way of diminishing the amount of energy his body could exert all at one time, by way of making sure his body took a very long time to lose weight, by way of making sure it held onto every pound and fat cell it could. This bodily reaction would only further compel man to step up his hunting skills… why? Because he didn’t want to feel that way! He didn’t want his family to feel that way! He had to get his caveman hustle on! When man was finally able to tackle that antelope or whatever-what-have-you, the fats and salts in the meat were sooooo satisfying that they would cure man of the bodily reaction to stress.

Compare this to emotional eating. The body’s reaction doesn’t change no matter what variables you swap out. Regardless if the stress comes from traffic, bad work day, or family problems… the body’s reaction to stress has not evolved as fast as society has. Now, we can get food within ten minutes if we drive or own a microwave. So presuming our body believes that stress is caused by a “famine on the way,” then it’s going to trigger feelings to make you go hunt! Our bodies just don’t know how easy it is to get food just yet. It hasn’t caught up.

Excerpted from Telling A Tale of Stress and Emotional Eating | A Black Girl’s Guide To Weight Loss

Cllick the links below to read more –

 5 Steps to Take Control of Food Addiction | MyFitnessPal

What exactly is emotional eating

Endobronchial Valves – Links and Things

I feel like I’m like a bird that has had its wings clipped, being held up at every turn! It can be very frustrating.

I have only been writing this blog now for 7 months but in that time I have learnt loads and passed this information on to my readers as often as possible. One thing that I haveimg_6765 been asked about more than anything by people from the US and UK are about the endobronchial valves. I have done a number of posts on them so I felt they deserved a chapter of their own so I will be putting all the links on this post together for them. My road to having these valves fitted has not been an easy one and in the post My 2nd Appointment to Jimmy’s  you will see why. You have to jump through a lot of hoops to finally get there and also my opinion on where and who they would be fitted by has also been under a lot of change. Hey, this is an important operation, if I am to be put under general anesthetic and have my lungs tampered with, I want the best tamperer!

THOSE HOOPS AND HURDLES!

One of the first hoops you have to get through is all the tests and because I have the worst luck in the world at always having appointments when I am suffering from a bad images (4)day, this has been a real pain to say the least. The first test I had was the full lung function test and it took quite a long time and because I was in the middle of an exacerbation this was not very pleasant but I was determined to finish it, it’s one step nearer!  I was so exhausted after the test for the first time ever, I had to get a porter to push me back to the car. Then you must have a CT Scan that is easy even if you are under par. However, since I have started exercising I am no longer having these problems, it has been hard trying to fit exercise in between flare ups during winter but it’s just a matter of how determined you are to feel a bit less breathless in the long-term.

After all these results were through, I had to wait to see my specialist at Huddersfield more time wasted! When I had chatted to her about the procedure and she asked me if I was sure that I wanted it done as I could live for years like this and I wasn’t going to die. I said, ‘exactly, this is why I want it done I don’t want to live like this for years!’. She then referred  me to Leeds, Jimmy’s in fact and my first appointment there was very good. I saw a young thoracic surgeon who was very hopeful of a good outcome and booked me in for a nuclear scan. Details of this can be read up in another section called My Appointment at Jimmy’s for Nuclear Scan . It seems that if there are any tears in between the lobes of your lungs, then it’s difficult to do the operation. A nuclear scan shows them this apparently. Its called  ‘collateral ventilation’ and there is a post about this in the link Collateral Ventilation Explained Simply!!

While this was all going on, I was waiting for my referral for the other hurdle that had to be endured before I could have the operation done and that was the Pulmonary Rehab Course. Actually, I was quite looking forward to completing this course. I had tried twice in the past and only got through the first month or so because I caught and infection and did not want to give it to everyone else so I carried on doing a bit at home. I did a full course at our local hospice but it wasn’t much in the way of exercises. It was more chat, tea and coffee and cake and education about the disease which ended with a living will lesson, which didn’t go down with me very well at all, I felt like walking out! I am definitely not ready for that yet. Anyway, I did try to start the Pulmonary Rehab Course but when I went for my assessment true to me I was having another flare up and she wouldn’t continue with the 6 min walk because my stats had dropped dramatically from walking about 6 foot to the corridor. She asked me to ring her when I had recovered.

THERE IS ALWAYS LIGHT AT THE END OF THE TUNNEL!

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I can promise you that it is not an easy road trying to improve your breathing and your situation when you have COPD. From what I have been able to discover the first person in the UK to have the valves fitted was in 2012, so it’s still early days. There are other methods also such as coils, surgery etc.  It is costing the NHS millions in support treatments at the moment and palliative care and the numbers of lung patients are rising, add-on to that the number of people with heart disease as it’s a crossover, if you get my meaning; it is costing a mint. Therefore, I feel a lot more research will be done during the next 10 years, they might even find a cure. you never know. Anyway after a terrible time at my last appointment at Jimmy’s, I actually had some good news and you can read about it in the following post NEVER LOSE FAITH – It must be Karma! and Amen to that!

Below are all the links about the valves –

MY DIET NIGHTMARE – But I’m doing it, well sort of!!

This ties in with Step 5, 6, 8 of the COPD Solution post

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Well started my diet on the 15th March and have lost 10lb up to now. Can’t believe that I have managed to stick through this. Since I stopped smoking 4 years ago I have been totally addicted to food and any attempt to diet was scuppered by myself and my need for sweet and fatty food. But no more, I have been enjoying eating healthily now and also find that I enjoy my meals better because I am not eating anything that I am not supposed to eat. However, I have decided to do a more calorie controlled diet this time so that if there is anything that I really fancy one day I can immediately count for it. Also I am going to try fasting for one day a week and try all sorts of different dieting tricks to keep me interested. I will post them on this post and this will be an evolving post so please keep coming back because it will be updated regularly.

My Shopping Basket

1915613_10204315133479086_8499442798078363292_nWell my shopping basket this week was filled with much better healthier stuff and if my son will keep his hands off it, I won’t go hungry. He annoys me because he is underweight but as soon as I start buying in healthy stuff he eats it. The bird’s eye steam fresh veg are really great when you are having a bad day and don’t want to spend much time in the kitchen. Last night I had fresh baby carrots, mashed10364063_10204315133199079_617427517448159017_n potato and chicken breast. Will a little oxo gravy, it was delicious and if I had been feeling a bit off it I would have used the microwave veg instead. My favourite frozen selection at the moment in Morrison’s is the Veg cupboards lol. I said to my daughter if you see a rabbit hopping towards you next week that will be me!

I really hope that this effort combined with exercise will help my breathing which is terrible at the moment. Lets see eh?

Exercise Too – You cant get away without this!

Link to Exercise images

Will be incorporating exercise just a little bit, with my diet, it so helps the breathing and I have never really 100% committed myself to this before so its about time. I might throw in some Yoga breathing at some point but  I will record my exercise in the above link, so lets see how we go?

Saturday 26th March – Diet News – Feeling the Benefit!

I discovered Kale! Bought some in Iceland yesterday and googled it to see the best way todownload cook it and found it is a super food, full of nutrients and anti inflammatory properties. So am going to have some every day. Need to steam it or best results, I boiled it yesterday and it was a bit chewy so let you know how I get on cooking it in different ways. Feel better this morning than I have for a long time. Was not out of breath when I came downstairs. Usually I am reaching for the inhaler! When I didn’t do this, I realised that I had managed to have bath without getting out of breath too. Its funny how you only notice the moments you are really out of breath and when something good happens like your breathing improves a little, it doesn’t register straight away. So, now I am wondering if its the weight I have lost that’s improved my breathing or the food I am eating or not eating, if you get the drift. Well whatever it is I am keeping going with this and my respiratory breathing exercises and see how far I go.

Thought I had a Heart of Gold? – Another stay in HRI

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Just when I thought I had a heart of gold, well I like to think I have, it decided to act more like a jumping jack or a runaway train, it was going at 160 beats per minute. I was so used to this happening in the past and had never complained to my doctor about it as normally it put itself right in a few hours but this time it kept going at speed for 3 days. So I thought a call to the doctor would be a good idea! I was right and I had to go straight to the surgery for an ECG. I think my Doctor was shocked, I dont think she expected it to be so high and was so surprised that I had left it for 3 days. She said it was called ‘supraventricular tachycardia’ an irregular heartbeat in layman’s terms.

8514563790_348d8d832f_oThe problem is with a chronic illness like COPD  all you do is concentrate on breathing, it becomes the most important thing in your life and a little thing like a high pulse rate doesn’t get much attention. However, it could have been quite dangerous and it also contributes to your breathlessness, something I had never thought of. Now, I realised its importance especially when my Doctor said, “I’m just going to get the defibrillator, but dont panic its just incase” and I was sent straight to Huddersfield Royal AGAIN! The ambulance took me with lights and sirens blaring and after this experience if my heartbeat wasn’t going ten to the dozen anyway it was now. Even more alarmingly I was taken straight into resus and had more pads stuck to my chest and readings taken. I was asked to do various things such as pinch my nose and blow hard called the ‘valsalva maneuver’, bear down like you need the toilet and blow into various things very hard.  They also tried the carotid maneuver, the carotid artery runs down your throat next to the vagal nerve. The Doctor gave the artery a gentle massage with his fingertips to help stimulate the neighboring nerve into slowing my heart rate down. All these procedures were done in an effort to get my pulse to jump start itself again! I can’t really remember much, I was in shock, after all, I had just had a routine visit to my doctors and now I was here! Life can be so unpredictable.

I spent four days in hospital and found out that I was in no danger, although they kept me strapped to a monitor for three days. Two days were over the weekend, so I had to wait for the consultant to come in on Monday before I found out what was really  going on. I was sooo tired too and slept a lot. No wonder I had been doing a marathon for three days! The consultant was brilliant and explained everything very easily, he put me on three different types of tablets one was a blood thinner and two different types of tablet to keep my heart rate down. He said that he hopes my heart rate will go back to normal eventually as it has done in the past and said that I will have had it for years and not known about it. Unfortunately, if it doesn’t go back into a normal rhythm itself the next lot of treatment will involve a small operation where they will shock my heart back into rhythm, OUCH!! Until my follow up appointment in outpatients, I have to take these tablets and have a angiogram in 6 weeks.

I am now wondering how much this has contributed to putting me over the edge when I have had previous flare ups, ending in a hospital admission! My breathing is improving noticeably. It wasn’t too great this morning and I took my pulse and it was high again! The consultant told me that this condition is common in people with lung problems and asthma sufferers. That it wasn’t dangerous or life threatening; (could he tell my doctor that I wonder?). So of course as soon as I was well enough I decided to do some digging to find out exactly what caused this. I found this on NHS Choices site and it explains it quite well –

Heartbeats are normally initiated by a small group of cells at the top of the heart called the sinoatrial node, which acts as the heart’s natural pacemaker. Episodes of SVT occur when a problem develops in this system. This causes faster signals to be sent around the heart, increasing the speed at which the heart beats. In most cases, the problem is temporary and lasts for a few seconds, minutes, or in some cases hours. (Unfortunately mine got stuck for days this time)

SVT is usually triggered by extra heartbeats (ectopic beats), which everyone has. It may also be triggered by:

  • some medications, including asthma medications, herbal supplements and cold remedies
  • drinking large amounts of caffeine or alcohol – (I dont drink tea or coffee or drink alcohol much)
  • tiredness, stress or emotional upset
  • smoking lots of cigarettes – (that’s not me I dont smoke)

However, in the majority of cases, there’s no identifiable trigger for SVT.

After reading this I realised that it could be tiredness, stress or emotional upset or asthma medications that have been the rout of the problem.

I found a lot of information and I have included the links below but there is mountains of stuff out there about Heart Arrhythmias and these are just a couple –

Supraventricular Tachycardia

This piece is very good, it does focus more on young people but also goes on to say that adults also with COPD can also be effected. The medication they are talking about IACs is typically SPIRIVA type meds.

Asthma Meds Linked to Heart Arrhythmias – IACs

They halt airflow obstruction by relaxing airway muscles during asthma attacks — thereby allowing the person with asthma to breath easier — but inhaled anticholinergics (IACs) may have a heart rhythm–related downside. 

But that’s not the only anticholinergic-related research out there. Some raise concern about IACs and heart risk in patients with chronic obstructive pulmonary disease (COPD).

The 10-Step Programe – does it work?

Ten Steps – Ten Weeks

I bought this book after seeing a very small review of it on another blog and it has been well worth the money I paid for it. It can be bought through Ebay for around £11.

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The author states –

The COPD Solution is a comprehensive, 10 step program for managing life with chronic lung disease. It bridges the gap between merely surviving, or just getting through each day and completely thriving. its about treating, educating and implementing life saving modifications for anyone suffering with COPD. Dawn also says, that when you hear the rest of Linda’s story you will cry tears of your own and maybe, for the first time you will feel hope for yourself or your loved one.

images (14)The first thing I will do before starting any of the program is the 6 min walk test and I will post the results in the section Exercising and COPD, it gives you a base measurement to go by. I will try to do a video as well so when I have finished the course I can compare videos with progress that I have made. I will measure a 75 feet circle or length in my room (as described in the book) and walk as far as I can do without stopping and at the end of the 6 mins measure how far I have actually managed to walk in the 6 mins taking the stops into account. Its very similar to the way I have been doing my cycling which I started at the beginning of January. I did 15 mins cycling. At first it took me about 30 mins to do 15 mins cycling I was so breathless and just before I had to stop because I was ill, I was managing 15 mins in less than 20 mins.So I was slowly improving.

The book covers food that makes it more difficult to breath, so you will be taught what and what not to eat. How to become stronger, you will learn about your oxygen and about using energy. You will learn about your muscles and how your body uses oxygen and how to properly breath, how you got this disease and what has happened inside your lungs so you can better understand what your struggle is and how to cough the right way to bring up the mucus and how to take your meds properly so they will be more effective.

Dawn Fielding explained to Linda that by carrying out her program she would expect her to dramatically improve on her present performance. Lets see if I do! I need my breath for singing. After reading this book would I recommend it? Yes I would indeed it was worth every penny, they should give it out on the NHS! The following is a run down on the books’ contents, what are you getting for your money?

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The appendix

At the rear of the book you will find a lot of trackers and organisers  that you can photocopy and fill in to help you organise certain aspects of your COPD. A good idea if you like writing things down.

Step One – Coming to Terms with COPD

Step one of the 10-week plan is Making Peace with COPD, I have mentioned this myself at length in the section Coming to Terms with Your Diagnosis. Before I could move forward and make any sense of this illness I had to come to terms with what I had, how bad it was and really look the dragon in the face. Many different emotions are felt at this point the main one is grief, the loss of something but you are not alone these feelings are common among many people with life changing illnesses. What helped me was reaching out for help, meeting people who were in the same boat as myself, joining support groups etc. The author explains this step very well and talks about fear, depression and anxiety also. Well, it looks like I have worked through this step without any help from the book already, so I can move on to the next step.

Step Two – Oxygen Therapy

Step two is oxygen therapy. In the USA a lot of people are on oxygen therapy, they use it a great deal more than we do in Great Britain, we do get given it eventually but our specialists tend to wait and see if you pick up on your own after pulmonary rehab. As long as your 02 stats are above 90 or so when resting they are happy. You can get dependent on oxygen, when I am in hospital and recovering from a bad chest infection I need some supplemental oxygen and its surprising how quickly you become dependent on it. They then wean me off it as soon as they can and usually when I go home my oxygen sats are at 94 and rise to 97 after a short time. However, when oxygen is really needed it is vital to use it because your main organs can be affected by lack of oxygen, such as your heart! It’s a very good section that she has written on oxygen and covers all the delivery methods and sleep apnea also.

Step Three – The 3p’s Patience, Pacing and Persistence your 3 Best Friends

Downward-spiralThe next step is about breathing exercises and ways to breath to help you recover quicker. Its a great chapter. She starts by explaining that your stress levels directly impact your lung disease and your ability to breath. This is called the cycle of dyspnea, referred to as the COPD Downward Spiral. When you struggle to breath, your stress levels naturally increase, which makes it more difficult to breath and repeat, repeat, if you get the jist of it. She explains controlled breathing techniques which I do at times and I have done a section on some of this already. Controlled breathing actually releases endorphins in your body, dilating blood vessels and increasing blood supply to the tissues, lowering, heart rate and blood pressure. Controlled breathing is pursed lip breathing which I use a lot, belly breathing (diaphragmatic breathing) and positioning. The belly breathing is practiced during singing so that is why singing is so good for you. Its the only way I can do the diaphragmatic breathing properly. You need to practice these things on a daily basis. These are some sections on my blog that cover breathing …. Breathing, Breathing  and Exercise, Breathing 4. I practice these different types of breathing all the time, my sons always complaining, ‘do you have to make that noise’, I just ignore him and get on with it.

Step Four – Conserve your Energyimages (11)

I have covered this already on my blog a number of times and it is important to pace yourself and it is also important to relax and meditate. The following links have all got within them ideas for conserving your energy and getting the most out of each day –

Making the most of every day
COPD, how to claw some  of your life back
If you want the rainbow you have to put up with the rain
The spoon theory

The author of the book has some great ideas and advice so it’s well worth reading this section.

Step Five – Prevent Flare-Ups: Use Your Meds Effectively

This is another useful chapter, it is very important to use your meds effectively. It is very complex and there are so many medications that I really do not cover this on my blog because I am not a medical person. I learnt a few things when I read this chapter one was the existence of another medication that I knew nothing about. However, it doesn’t come without a number of possible side effects. It is called Daliresp and this is the brand name for the prescription drug, roflumilast, which is a phosphodiesterase 4 inhibitor used in cases of severe COPD to reduce the number of exacerbations.

Dawn also explains about the importance of having peak flow readings daily. I know this is important for spotting when an exacerbation is on its way but I hate doing these peak flows. At the rear of the book you will find an appendix which contains lots of different forms for you to use especially tracking charts. These can be photocopied and used to help you plot your peak flow readings. There are a lot of forms which are referred to in this chapter such as your COPD Action Plan and I am sure that I will use a lot of these forms.

Step Six – Pulmonary Rehab

Pulmonary Rehab is described as the key to the COPD solution

The author uses inspiring quotes at the start of each chapter which I like and this is the one for this particular chapter which I find very motivating –

When I loved myself enough, I began leaving whatever wasn’t healthy. This meant people, jobs, my own beliefs, and habits – anything that kept me small. My judgment called it disloyal. Now I see it as self loving. (Kim McMillen)

This chapter is very important in the book because from experience and also from many other peoples’ experience, exercise is the key to regaining a chunk of your mobility back. I like the quote because although exercise is one of the main things you can do to improve your life it is also very hard. The author states that Pulmonary Rehab is designed to  –

“support your circle of therapies, to help slow the progression of your lung disease, improve your daily life and decrease your symptoms, ask your doctor for a referral to Pulmonary Rehab…Pulmonary rehab is designed to improve your physical, emotional and psychological health.”

The Anxiety/Dyspnea Deconditioning Cycle

In plain English this means that when you are very out of breath you can become anxious and in this situation you will refrain from carrying on with whatever you were doing when this happened.  It could be perhaps just walking to the door, going downstairs for a cup of tea on an evening or maybe just hanging the washing out. When this happens and you stop doing these things you become more breathless as you are less fit. I think this can happen particularly after an exacerbation or a stay in hospital, that is why you feel that you never quite get back to your pre exacerbation state. You are mainly just out of condition due to being sat about for a couple of weeks waiting for the exacerbation to pass. That is why pulmonary rehab is so important it gets you fitter and more able to use the oxygen that you are breathing in more efficiently. Toned muscles use less oxygen.

A pulmonary rehab course covers a few things including exercise, half of the class usually has feature speakers talking about medication, lifestyle, breathing techniques and more. Physical reconditioning is very important, did you know that a 2 week exacerbation is all it takes to wipe out loads of your physical fitness? The strength and tone it took a week to gain will be lost in 2 days!  PR is also a chance to chat with other people who have the same illness as you. I will be reading this chapter over and over again because it is something I want to do but have also found very difficult.You have to realise that it is OK to get out of breath, the more exercise you do the more you will be able to do without getting so very short of breath. You can also read quite a few posts on my blog about P and exercise –

As stated previously this chapter is very important and I shall be revisiting it regularly.

Step Seven – Quit Smoking

hqdefaultI am not altogether sure that this should be step seven because of its importance with this disease and the benefits attached to stopping this habit are very high. I would have put this step as 2 or 3. In the section of my blog called ‘my stopping smoking saga‘, I explained how difficult I found this to be, you are struggling with two things really the fact that you want to quit for your health and money of course; but also I was struggling with the fact that I was going to gain weight and that is also unhealthy. Its like the devil and the deep blue sea in a way. So, I tried to minimize the weight gain as much as possible!

The addiction of nicotine and all the other chemicals that they put in cigarettes is no joke, I found the following piece very helpful to read it really explains about the addition.

Nicotine Addiction 101 – Best piece I Have Read On Nicotine Dependency!

Step Eight – Choose Foods for better breathing

tumblr_mqi7rwm8Y71rjetaio1_500Having enough food to eat of the good kind is very important as people with COPD require more nutrients and tend to be malnourished even the fat ones, like me! She explains the cycle of malnutrition very well and to be honest its not something I have thought about until now! Like everyone else you think that if you are overweight you are ok nutrition wise NOT TRUE! I think this is a great chapter and I will enjoy reading this one and researching nutrients.Apparently not getting enough vital nutrients adds to the deconditioning (loss of your overall physical fitness). I know I do not get enough of some nutrients because of my diet, I am almost vegan. Because of this it might be a good idea to take a supplement as you need to feed your muscles to keep up their strength. This is a fascinating chapter and well worth the cost of the book for this chapter alone. Another chapter that I will be visiting again.

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One interesting thing that the author points out is the subject of  Carbon Dioxide (CO2). If you consume a lot of carbonated sugary drinks, such as coke and sugary foods you can after a short while find yourself more breathless. And this has definitely happened to me but I did not know at the time why it had happened. The point is when sugars are metabolised they break down to form excess CO2. The only place that this can be done efficiently is with your breathing, you end up breathing the CO2 back to normal levels, this is a natural response for your body in this situation. This is not good for people with COPD because it puts your respiratory rate up making it harder to breath. A much better explanation of this is on page 215 of the book. Sugary foods can have the same effect so say no to sugar!

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This section also stresses the importance of not being too overweight because unnecessary weight can make it more difficult to breath. Belly weight of which I have loads, can hinder the ability of your diaphragm to descend lessening the space your lungs have for expansion. So, I am in trouble from the top and the bottom. The top where my emphysema is and the bottom where my fat is!

Step Nine – Try Yoga

As a young woman I did a lot of Yoga and I must admit I will enjoy taking this up again on my own. There are lots of videos on YouTube that you can watch. I enjoy Yoga because it focuses more on breathing and holding various poses. It is not an aerobic type of exercise but when I first started to do Yoga when I was about 16 I can remember losing half a stone very quickly.

Step Ten – Stay Connected – Take Charge of Your Life!

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It is very easy to become out of touch when your COPD progresses, I have included a piece on this in my blog, this is the link – Loneliness and Isolation. It is so easy to become housebound and there is no need. It is all about maintaining your relationships and friendships, communicating and staying connected to others. You might say this is easier said than done! But with all the equipment we have these days, phones, laptops, tablets you don’t need to leave home to have company. Staying connected with your friends can be very difficult  because many just cannot deal with their friend having this disease. I have had to make some new friends and most of my new friends have COPD themselves.

There are many groups on facebook where you can meet hundreds of people who have COPD and are in the same boat as you are. Going to church is another method of meeting people and becoming involved with your community. At the PR group you will also meet more people and have a chat over a cup of tea and biscuits. My local hospice also has a lot of different courses that they run such as pilates and art class, give yours a call and see if there is anything that would suit you.

 

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