SUMMER IS ON ITS WAY – Have positive thoughts, be glad about the things you can do instead of focusing on the things you can’t! – And a note on Aspergillus
Trying to be positive with this disease as it progresses is hard but there are many things we can do to improve our lives and also many new things we can learn. Before I had this disease I was working, now I have time to spend doing things that I enjoy doing and spending time with my Grandchildren when I can. I can improve my quality of life in various ways, losing weight and doing as much exercise as possible and also by stopping smoking. Being proactive helps with COPD and if you stop smoking it slows the progression down to a snails pace!
On many social pages that I read time and time again I hear people moaning about stage 4 COPD and that it is terrible etc etc. Life is too short to be moaning about what we can’t do anymore or over things we just cannot change. Many other illnesses and diseases have limitations too, you just have to focus on what you can do instead of the things you cannot do any longer. I am just grateful that I am still alive to enjoy life and am constantly trying to improve my situation. If you look in the menu to the left of this page you will find lots of posts that tell you how to improve your situation and they definitely work. I am too busy to moan come on lets get up off our easy chairs and shout out –
“NEVER GIVE UP KEEP FIGHTING”
Keep fighting there is no other way with this illness. Don’t just sit back and think things will get better. The following is a link to a two part post which I have edited from My COPD Team which gives you ideas how to do this.
See – How to Manage Your COPD Like a Respiratory Therapist – Part 1 and Part 2.
NO MATTER HOW PAINFUL DO YOUR PULMONARY REHAB
What is Aspergillus
I have done a few posts on this fungus infection and the following web page explains a lot All About Aspergillus. However, I have recently found out that I have got this in the allergic type which has caused me to have a constant wheeze since 2015 they tried to settle it with steroids and antibiotics but its not worked and I have ended up being on steroids too much which is in itself not very good. Therefore, they have now decided to treat it with antifungal medication so lets see how much better I get after this. I am only on my 2nd day on the meds so too soon to say anything as yet. The following links have also some good information on this fungal infection –
MY WEIGHT LOSS BATTLE FOCUS FOCUS FOCUS –
‘As Oliver Emberton says monomaniacal focus on a single goal is perhaps the ultimate success stratagem. It’s a pattern found in everyone from Edison to Einstein. When you’re able to focus on a single goal, constantly, your achievements reach their theoretical limit.’ This is absolutely true and now I am focusing on this weight problem I am losing weight steadily. My weight loss for last week was over 1/2 a stone. Tomorrow is my weigh in for this week! My breathing IS improving and yes I have lost another 2lb this week YAY!!!
My song for this month is Ed Sheeran, Castle on the Hill just love this song and anything that makes me happy and relaxed is great
AND WHAT ABOUT THIS DIABETES TYPE 2?
The diet that you have to follow for this condition is totally different from any diet I have previously done and will take some getting used to. There are many conflicting opinions about what you should eat on a diabetic diet. See the following link conflicting opinions about diabetes diet
Some say that if you eat carbohydrate you should eat it with protein and it slows the metabolism of the food down or helps with the sugar absorption. Other people recommend a very low carb, low sugar, high fat and moderate protein diet and that it is the only way to do it. I have decided to go with the low carb and low sugar alternative because I have 4 stone to lose in weight I will look at this again once I have lost all the weight I need to lose. I have had to record my meals and sugar readings as I go on. I started recording this information last last Sunday on a spreadsheet and am seeing a steady drop in my sugar levels. I am going to carry on with this diet permanently because I don’t want my sugar levels to rise again its very bad for your health. Once I have got my fasting test down to around 4 then I will start introducing a few different types of food one at a time and then test one hour after consuming to see if I am safe to eat it. I love fruit and you can’t eat much on a diabetic diet. This will be one of my first tries once I have stabalised.
IS YOUR HOUSE POISONING YOU?
Well another week and another infection, or is it the same one? People with COPD as well as asthma have a very difficult time as it is absolutely impossible to remove everything from your home that can trigger an attack. Because your airways are smaller now and after years of using your bronchodilators are not quite as effective as they used to be. Things can get a bit impossible at times and a hospital stay is required to settle the inflammation.
Sometimes your trigger can be a plain old virus that you have picked up from your child or grandkids, what would be a inconvenience to them could mean a hospital stay for you or at least a week in bed taking a load of meds that you dont want to take. So what can we do? I have found this situation almost impossible. I have got rid of my gas appliances except of course the central heating. I have got a brand new electric cooker and it is so much better for me cleaning wise. Because I think I might have given myself a cold from not using the Gas fire, tomorrow I have a lovely new dimplex real flame fire arriving as I have had my gas fire cut off. These things I can have control of. There are many that we cannot control such as pets, dust (it always seems to be there) and our Grandchildren. I often say to my daughter dont bring them down if they are ill but then I just cant resist seeing them they are so lovely and they raise my spirits no end. So all we can do is do our best and be sensible.
If anyone has any further ideas on how to cleanse your home please leave a comment and I will include it in my next post.
FEATURED POSTS – SEE LEFT SIDE PANEL FOR OTHER POSTS
How to Manage Your COPD Like a Respiratory Therapist – Part 1 and Part 2 this is a great piece by My COPD Team which is a social network for those living with COPD.
My trip to see the Wigan Warblers and the COPD Athlete – Includes reversing the downward spiral
Falling off the precipice – and my appointment at the Royal Brompton.
MY PIP EXPERIENCE – A complete fiasco!
Lung Reduction Surgery, Valves, Coils and Further New Developments
The 10-Step Program – does it work? – GREAT BOOK
A Short Walk a Day Helps COPD Patients Stay Out of the Hospital
TVs Nadia Sawalha Highlights the Struggle COPD Sufferers Have Every Day
ROYAL BROMPTON HOSPITAL – RUNS TRIALS IN ALTERNATIVE WAYS TO IMPROVE COPD QUALITY OF LIFE
Jay Nash of Pulmonx with Annette Eiben and Dr Samuel Kemp
A hospital employee has become the latest emphysema sufferer to undergo a new procedure that is offering a lifeline to people with serious respiratory conditions. Former King’s Mill Hospital worker, Annette Eiben from Mansfield, is the latest person to receive endobronchial lung volume reduction (ELVR) treatment using the Pulmonx Zephyr Endobronchial Valve. The procedure was carried out by Dr Samuel Kemp, a consultant physician at the Mansfield hospital, and Eiben has described the difference to her quality of life as ‘nothing short of amazing’.
The 58 year old has been living with emphysema for several years and prior to having her procedure the simplest of tasks such as drying herself after a bath or reaching for a plug would leave her breathless, not to mention the daily struggle of walking up and down stairs.
Since the operation I have not had one attack and the feelings of independence and confidence I now have really are life changing. She told BBH: “When Dr Kemp suggested the valves I said ‘yes’ immediately. After all, I had nothing to lose and everything to gain.”
THE DOWNWARD SPIRAL – Something I need to keep reminding myself of!
EXERCISE – VERY IMPORTANT FOR REVERSING THE DOWNWARD SPIRAL
What you have to remember is the lungs are like any muscle they require exercising and also all the muscles that you use require oxygen. The fitter those muscles are the less oxygen they need. Therefore it makes sense that the fitter you are the better your overall breathing and day to day performance will be. Sounds simple? Not at all. Getting fit when you have a lung disease is very difficult but definitely not impossible.
WITHIN MY BLOG I have done loads of posts on exercise and its benefits when you have COPD. You can find these posts in the archive. This is far more important than I first thought and through continued mobilisation I am definitely feeling the benefits. Before you start out on any exercise program you need to be passed as fit for the type of exercise you plan on doing by your Doctor. As previously mentioned I am trying to get a singing group together in Huddersfield because that is great exercise for the lungs too and very pleasurable, well for me anyway. Most people with COPD will be aware of the Pulmonary Rehabilitation courses that are available through your local NHS. They are great but in most cases only run for a short period of time and in Huddersfield there is a massive waiting list, it can take up to a year to get on a course. Appointments are in such short supply! Because of this I have been trying to set up a BLF Breath Easy Group for ages and after speaking to Marie Anderson from the BLF I am happy to announce that there should be enough funding for one next year. The Breath Easy groups are great because they are all year round not just for 8 weeks at a time. Regular exercise is essential for undoing the downward spiral. See ‘Undoing The Downward Spiral’ for more information.
WHAT MOTIVATES YOU ON A BAD DAY? – Some of my biggest motivators!
MUSIC – THIS IS SO GOOD FOR THE LUNGS
What keeps me going with this illness on my bad days when I am stuck in is MUSIC and my taste is very diverse. From the tacky to the classics. I discovered YouTube and all the free entertainment, just a click away. I have always loved singing even when I am told I can’t sing by my family (so cruel). Music has always been a big motivator for me, it has also been proven to be great exercise for the lungs. Hey Google it, and see what you find!
CHILDREN AND GRANDCHILDREN
My children and my Grandchildren are my greatest motivators. They enrich my life so very much you just can’t feel sorry for yourself when those little faces are about. Its awesome when you think you have created all these people!
She has really given me some perspective over this illness she has pulled me up and yes at times ground me down However if it hadn’t been for her perseverance I don’t think I would have been able to give up the Cigs and stick to my diet and exercise. She showed me I could do it and I couldn’t let her down now could I?
I discovered that there was no need to sit in a mess when I was ill. The house looked as if a burglar had been and my asthma was so bad with the dust it was really not helping the situation. So I ASKED FOR HELP which is a very difficult thing to do when you have been so used to helping everyone else and have been super efficient yourself. In the past I did all my own decorating, baking, parties, cleaning and worked part-time and full-time over the years AND brought up 4 children.
People find COPD difficult to understand and think if you stop smoking and take exercise you will be fine. But unfortunately that’s not quite right. Taking exercise safely is very important and of course stopping smoking is important too. However, a great number of people actually suffer from one form or another of COPD who have been fit in the past and have never smoked. For those of you who like statistics the following page is quite interesting just click the link British Lung Foundation statistics . These statistics can be quite depressing but what we have to consider is that people who have more knowledge of this illness will fare much better than those who do not understand its progression and how to help themselves. There are many things you can do to improve your life and I am going to share these things with you in the section Coming to terms with your diagnosis this took me a lot of doing you have to accept it first, become friends with it, if you get my meaning then you can enrich your life and make it much better.