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. It was 2012 before I had worked this out! Can’t believe that was 4 years ago. And yes each year I have improved a little.
I started looking for help. My first port of call was the British Lung Foundation, I spoke to a nurse there, they have a help line that you can phone during the day and you can book an appointment to speak to a trained respiratory nurse. This was no easy task for me at that time, because I just didn’t know what was going on and I felt so blinking alone, I would say it is one of the worst periods of my life and if I can help just one person avoid going through something like this by writing my blog then I will be very happy. This is a link for them The British Lung Foundation
Those three little words Knowledge is Power have never applied more with COPD or any life altering illness. A respiratory nurse rang me back talked to me and explained what was going on and to try to stop having the infections. She explained that it was the infections that caused the damage to the lungs. She suggested Manuka Honey and to have a teaspoon every day to help build up the immune system, (I have tried it but didn’t find it worked for me). Probiotics were also mentioned so I brought some of those too. She also told me about the British Lung Foundation forum and that I could have a text pal. This was the start of a great relationship with my friend Anne Henderson who also has COPD. Anne took me through a very dark time, and I have a lot to thank her for, she often mentions that period of time and says how ill I was and how much better I am now. Well, yes I am but I didn’t do it entirely on my own! Anne told me about the groups on facebook which I was not aware of at all and they were a great support to me at that time and still are.
Social Media has played a large part in my recovery from those early days, depression is so common, having someone to talk to is very important. I was on facebook only last night at 2.15 in the morning chatting with some members because I was feeling awful, there is always someone to talk to, it is brilliant and best of all they actually WANT to talk to you and understand how you feel because they have it too. I read a piece in another blog where the lady said that she didn’t like the facebook groups because some people seemed needy etc. etc., well that is her opinion, in my opinion, I have learnt a lot of valuable information that I would not have under my belt today if I had not gone on the sites and I definitely would not be in the good position I am in now without them. With this illness knowledge is the key to a more productive and long life, I cannot emphasise this enough.
MORE ABOUT FACEBOOK GROUPS………
There are a lot of facebook groups out there for you to connect with the first one I joined was Breathing Buddies but I found they were USA based and their treatments were much different from the way we are treated in the UK. The next site I joined is COPD UK, this is a fantastic group and I have made many friends through this group. It was great for education and they have loads of files to read through, you can read lots the admin who are sufferers themselves of COPD work tirelessly putting up new posts showing information and new treatments. The problem is that a lot of people who have this illness have it in different forms and also have additional problems so you can’t compare yourself to them. I am also a member of COPD Scotland, COPD – dying laughing, COPD a breath of fresh air, COPD Yorkshire and Mobility Scooter Club. My favourite at the moment is C.O.P.D, a Breath of Fresh Air AND COPD Yorkshire, the former has the most members and from all over the world so there is always someone to talk to no matter what time you need a bit of company. And, this is very real you can feel very isolated with this illness (see, Loneliness and Isolation). On one site I saw a note about the above book which I looked into and have put a review on the post – The 10-Step Program – does it work?
When I look back to 2012 I realise how much I have improved since then, I’ve stopped smoking, am on the right medication, have loads of friends to text when I am feeling low and high, and I do not feel so ALONE. That was one of the main things with this illness you can at times feel very isolated.
THE KNOWLEDGE I HAVE GAINED
The knowledge I have gained is very important and I have put it into practice in the following ways –
No 1 – I stopped smoking completely, this was essential so that I could move on and improve my life (see, My Stopping Smoking Saga).
No 2 – I looked at my nutrition and diet, obviously if I was short of any vitamins, this may cause problems and yes I was very short of Vitamin D. My doctor gave me supplements of this and it was nothing short of amazing the benefits that I received from this. I was also short of B12 and I make sure that I have my injections on time because this helps my immune system. There are lots of other vitamins that I have started to take Omega 3 (cod liver oil) all of the B vitamins are important too.
No3 – I had a thorough MOT done, I had a Heart Scan, Breathing Test and CAT Scan so that we could actually see what was going on. Something I found extremely hard to do as I prefer to stick my head in the sand sometimes.
No4 – I applied for all the benefits that I was entitled to and got a lovely new car! This really gave me a buzz and has been my saviour because I can now get around much easier and I hope to use it more as I further improve, I am hoping to visit friends that live away. It took a bit of getting but like my Dad used to say, ‘it is not worth having if it comes easy’. So I applied his saying at every wall that I came across, until eventually I had my money sorted out. This took me about a year! I have put a piece on the site about benefits (see All about benefits – Money).
No5 – I changed my environment at home. I did this by firstly admitting that I could not do all of my housework any more and realised that I did not have to sit in a tip every day, which made me even more out of breath with all the dust and depressed by the sight of it. So I employed a cleaner to help me. You don’t have to be afraid to say, I can’t do this anymore, its not a sign that you are giving in it’s a sign that you are actually accepting the hand you have been dealt and have decided to get on with it! As time as gone on I have needed my cleaner less and less and just use one mainly now for really heavy work.
No6 – I bought a Gas Stool. After reading a post on one of the sites it encouraged me to buy a bar stool. Mine goes up and down and has allowed me to do all sorts of tasks in the kitchen I was no longer able to do because I couldnt stand for long enough. When I am having a bad day, I do everything on it from washing the pots to sorting the laundry, it’s my saviour. You have to keep going!
No7 – I asked for a downstairs Loo in March 2015. This has been a very long drawn out procedure, but I am not giving up! My life would be so much better with a downstairs toilet. (see my downstairs toilet saga). It is May 2016, now and I still haven’t got it, they have allowed it but the positioning of it is causing some problems.
No8 – Exercise, I have started doing exercise, at first I could just not equate doing exercise with improving my being out of breath. How could it possibly make things any better? I mean, I am out of breath constantly every day so how could doing even more exercise AND ON PURPOSE help me! WELL IT DOES!!! As your breathing rate and depth increases, your lungs absorb more oxygen, and yes, that means more oxygen-rich blood circulating through your body. At the moment I am doing a section about this called, Making the Most of Every Day. When I have completed it I am going to post a video on it of my collective attempts at exercise and how much better it has improved my life. Sort of a before and after thing which will hopefully encourage others to take up some form of exercise. See also Exercising and COPD – Come on lets do it together?
No9 – Diet, Oh dear me this is the one thing I know that I have to get to grips with and I am finding it very difficult, theres one thing stopping smoking and exercising but quite another giving up your favourite foods but I will get there, I have no doubt about that. In the meantime I can drink more water! It’s right there in its chemical makeup. Water is made of oxygen, so increasing your water consumption can increase the amount of oxygen in your blood. Start chugging. Oxygen-rich foods can naturally increase your blood oxygen levels. Stock up on green vegetables like kale, broccoli and celery in order to boost your oxygen levels and hopefully breathe easier.
No 10 – Steroids. Its very difficult for me to explain my relationship with steroids, they are great when you need them and necessary for acute flare ups but I have been stuck with them more than once and not been able to come off them. Because of this, I have read quite a lot about prednisolone and, feel that only short courses are any good for me and I need to be very very ill before I will put one in my mouth ever again! Because of steroids, I have put loads of weight on, lost hair, obtained a buffalo hump and have the truncal obesity. I have also got cataracts which is not mentioned on the photo to the left. I have now had my cataract operated on and it is no more and I am getting my hair back and am so very happy about that and the lump on my back has gone. But I am still faced with a lot of weight to lose. This has all taken a year to achieve.
I ended up in hospital at the end of February last year, and my specialist said as soon as she saw me, ‘what have you been doing your massive, she was astounded by the way I was. I had blown up as if someone had plugged me into a bicycle pump. I explained that I had
been given prednisolone by my GP and had been on them since the beginning of December. My specialist was furious and said, ‘they can’t just keep throwing steroids at you like this! They should have sent you to see me’. So, I was back on the social groups asking for advice and I got loads of help from them. It was another lesson that I was about to learn, GPs have very limited knowledge on how to treat COPD! Its not often I visit my GP now. Through experience and knowledge learnt from other people who have COPD and classes that I have attended at our local hospice, I am now more knowledgeable than the regular doctor on call regarding my illness and that will be the way it stays, I am afraid. I now feel in control and it’s a great feeling.