IS COPD TERMINAL – AM I GOING TO DIE?

images (3)During one of my hospitalisations with my Asthma the news was broken to me that I could have developed COPD (this was confirmed at a much later date), I will NEVER forget the feeling, when they handed me a leaflet on Emphysema and COPD and just left me to deal with the news alone. I spent all night in the bathroom looking out of the window and crying. I just couldn’t handle it at that time. I said ‘will I die from this?’ and the nurse said, ‘we all have to die of something’, that definitely wasn’t what I wanted to hear at that time.

My Grandad had died of emphysema, I hadn’t been very close to him unfortunately so did not know what he went through with it or how he managed it but I knew it was terrible, whatever it was and I was basically frightened of the unknown.
The truth is, how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. 
 
The following piece has been written by Derek Cummings who has lived with the disease for 28 years and I really wish I could have read this when I was told I MIGHT have it.  The way you react when first told you have this illness needs to be positive, you need to know that you are not going to die and how you can make your life better, also what you can do to improve your life and slow the disease down – I so wish I had known this. I was like many people at first, I just felt that this was it the end of my life, what was the point of doing anything, I was depressed basically and scared! Below is this piece and some links have been kept in for your further reading.

knowledge_is_power_by_haleyspeers-d4nqjj7As someone who has written a journal on my journey with COPD for several years I often receive emails from frightened readers. Or notice a search engine query asking if COPD is a death sentence or how long do I have to live with COPD? “Will I live long enough to see my children grow up? Does this mean I will not see my daughter grow up, get married, start her own family? Or ever know my future grandchildren?” are often the first questions I read in emails I receive.

Many times this is followed by a Google session as the frightened patient types “how long do I have to live with COPD?”. To then receive some good, but sometimes frightening advice. One page I know informs the reader you will live five years at most from diagnosis. How wrong is that? I have suffered COPD for 28 years now. I have friends on my COPD network that have lived with this illness for longer than I. If that advice had been right, I would have been dust by 1992.

None of us will beat the reaper. We are all sadly going to die at some time in the future. But more than likely with COPD and not because of it, despite COPD being one of the major causes of death in both the USA and UK. I am not going to lie, COPD will finish some of us. But most will have managed their condition for very many years, with lots of fun-packed times put in before the inevitable happens.

The truth is how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. Just simple lifestyle changes can and will add years to your life. As your illness progresses through the stages there is no denying there will be many challenges, and if you reach stage 4, there might come a time when you need to use oxygen therapy. But the truth is you are much more likely to die of something other than COPD.

Terminal to me is having cancer and being told you have weeks or months to live. That is the time to do all the things you have been scared to do. A parachute or bungee jump for instance. Can you imagine me jumping out a plane with an 8 pounds oxygen cylinder on my back? I guess my jump will speed up a bit but have to admit to laughing when I think about it. Our job with COPD is to make sure the reaper waits as long as possible. To do that, all you need to do is manage your condition. Take your medications when you need them. Oxygen if prescribed. Do not smoke. Else you might not last five years. Quitting smoking slows the pace of COPD dramatically. Exercise as much as you are able. This will exercise the lungs and help to keep muscles toned. Muscle uses least oxygen. Try not to get stressed as stress causes lots of breathing problems. Try to stay positive and to keep positive people around you. Have ‘It’s good to laugh’, as your motto and laugh often. Ask your consultant for a COPD management plan and stick to it. Make sure you get a flu shot each year and pneumonia shot. If you become unusually breathless seek medical attention as soon as you can. If you do that, like me, you can live for very many years. In two years I have an anniversary. It will then be 30 years I will have lived with COPD – yet despite stage four I am still enjoying life.

Two years ago I learned of the death of a 66-year-old man from COPD. It was with sadness I read the reason. Despite having been prescribed oxygen, a false pride meant he would not use it. To him it was seen as a weakness to be seen using oxygen. Sadly his heart gave out under the strain of trying to give his body theoxygen he needed, and he died.

If you are prescribed oxygen it is to protect your vital organs including your heart. Oxygen when needed helps us to feel well and to breathe easier. I use oxygen for mobility and have no such false pride. Sometimes people look but everyone is polite and helpful. During the three years I have used oxygen not one has been rude. It is equally sad that many that do have mobile oxygen do not venture out their homes, in fear of what others might say. My thoughts have always been if someone has a problem with my cannula that is their problem. Not mine.

I hope this short piece has helped allay some of your fears of COPD, leaving you more able to start to feel less stressed and more able to move forward. Till I write again, keep that smile. But most of all, Breathe Easy.

I was diagnosed with mild COPD in 1987 when 39 years of age. Now at the very severe stage, I use oxygen for mobility and am disabled by my illness. Despite this I still have an extremely active life, and after more than 27 years of living with bad lungs, am living proof that we with COPD can enjoy a long life. I am often seen at events, meetings, restaurants, and publicity events though I wear a ‘nose hose’ for oxygen when mobile and a mobility scooter to get around.

See Also  How long will I live Another Wonderful Piece

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MAKING LIFE EASIER AND TAKING CONTROL – 10 simple ways to improve your life!

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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

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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.

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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………

downloadThere 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.

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THE KNOWLEDGE I HAVE GAINED

10 simple waysThe 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, flyladywhich 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 amChzgRwnWUAEEfw- 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 8078688_f260great 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
images (5) 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.images (11)

AND LAST BUT NOT LEAST I LEARNT TO SAY NO!! I familiarised myself with the Spoon Theory and I would not be without it and also Fly Lady. There are links there for both.

COPD and Human Stem Cell Treatment – Is it a dream or reality?

copdChronic obstructive pulmonary disease (COPD) is a progressive lung disease that makes it difficult to breathe. According to the American Lung Association, approximately 11 million people in the United States have been diagnosed with COPD. However, it’s estimated that 24 million people may have the disease and not know it. The two main types of COPD are chronic bronchitis and emphysema. Many people with COPD have a combination of both.COPD causes one or more the following changes in the lungs and airways:

  • The air sacs and airways lose their ability to stretch.
  • The walls of the air sacs are destroyed.
  • The walls of the airways become thickened and inflamed.
  • The airways become clogged with mucus.

These changes reduce the amount of air flowing into and out of the lungs, depriving the body of much-needed oxygen and making it increasingly harder to breathe.

There’s currently no cure for COPD. There are only treatments to improve quality of life and to slow the progression of the disease. However, there’s promising research that suggests stem cells may help treat people with this type of lung disease.

Stem Cells 101

Stem cells are essential to every organism and share three main characteristics:

  • They can renew themselves through cell division.
  • Although they’re initially indistinguishable, they can differentiate themselves and take on the properties of several different structures and tissues, as the need arises.
  • They can be transplanted into another organism, where they will continue to divide and replicate.

Stem cells may be obtained from four- to five-day-old human embryos called blastocysts. These embryos are usually available from an in vitro fertilization. Some stem cells also exist in various structures of the adult body, including the brain, blood, and skin. They’re dormant in the adult body and don’t divide unless activated by an event, such as an illness or injury. However, they are able to create tissue for other organs and body structures, so they may be used to heal or even regenerate, or regrow, damaged tissue. The stem cells can be extracted from the body and separated from other cells. They’re then returned to the body, where they can begin to promote healing in the affected area.

Stem Cells in the Lung

Until recently, it was believed that adult lungs didn’t contain any stem cells. Researchers at Brigham and Women’s Hospital in Massachusetts turned conventional wisdom on its head when they discovered the presence of stem cells in the lungs. In the 2011 study, they cited evidence of stem cells in 12 adult donor lungs and nine lungs from fetuses that had died of natural causes.

These undifferentiated cells were capable of forming different parts of the lungs, including the air sacs and the small airways. When injected into mice with surgically damaged lungs, the stem cells divided to form new lung structures. The structures that the stem cells created were able to combine with and support the mice’s own lung tissues. This discovery opened the door to the possibility of finding new and improved treatments for COPD.

COPD and Stem Cell Treatments

Since the presence of stem cells in the adult lung was confirmed only very recently, there are no stem cell treatments currently available to people with COPD. However, researchers see stem cell therapy as a promising new direction for COPD treatment research. They believe stem cells may benefit people with the disease by:

  • reducing inflammation in the airways, which may help prevent further damage
  • building new, healthy lung tissue, which can replace any damaged tissue in the lungs
  • stimulating the formation of new capillaries, which are small blood vessels, in the lungs, which may lead to improved lung function

Researchers envision that stem cells can one day be used to generate new, healthy lungs in people with chronic lung disease. It will probably take several years of research before stem cell treatment can be attempted in people with COPD. However, if this treatment comes to fruition, people with COPD may no longer have to go through painful and risky lung transplant surgeries. It may even pave the way for finding a cure for COPD.

Further information on stem cell therapy and COPD

Written by Debra Stang
Medically Reviewed by George Krucik, MD MBA on 04 March 2016

Source: COPD and Human Lung Stem Cell Treatment

THERAPIES THAT CAN HELP

Salt Caves

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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 …..

LONELINESS AND ISOLATION – A VERY REAL PROBLEM

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Great Britain is supposed to be the loneliness capital of the world, loneliness is a killer, a silent killer. Surprisingly it can affect young people as much as old, its just not synonymous with the aging population any longer. Young people find it hard to get out and meet other young people as they used to do years ago. They move away for work and college and find it difficult to connect with people in a new city. So loneliness is now ageless!

Loneliness is the Leprosy of the Modern World (Mother Teresa)

the biggest disease

LONELINESS is such a real problem in this modern world of ours. Families split up, live abroad or move miles away for work, leaving older people who don’t have the mobility they once had stranded and alone in their own homes.  Quite often they have lost a partner whom they have spent years with to illness and old friends become distant, suffering from the same problem of not being able to get about.

It is the world that we now live in and the people we have become that is causing this problem.Winston Churchill used to call depression his ‘Black Dog’, I  would like to refer to this loneliness as the ‘Blue Dog’ and there are no medications to help with this one. It is inexplicably linked to our modern and fast way of living which does not take into account some members of the population. They get left behind in the rush of others trying to live, sometimes selfishly, other times just from having too much to do, in the pursuit of wanting too much or too many possessions. Other people just get left behind in this rush of living. Life does not come to you these days you have to go out there and join in. There is of course the internet and social media but for a huge part of our population this is still lost on them, they don’t have the skills. Times like holidays such as  Christmas highlights this problem even more as a quote from the Mail online shows –

Beleaguered A&E departments face being overwhelmed at Christmas by lonely, elderly people, Britain’s most senior casualty doctor said last night.

The warning from Professor Keith Willett came as Care Minister, ‘ Norman Lamb’ urged Britons to care for isolated neighbours to prevent the UK becoming a ‘neglectful society’. (Taken from The Mail Online)

lonelinessWas Normal Lamb right? Yes, I think he is absolutely right, I know only a few people that I would call real Christians. But let’s face it, you don’t have to be a Christian to be a decent and caring individual and there is a shortage of these types of people in our society today. Even some of these die hard church goers could be termed less than caring in my experience. Just because you go to church doesn’t guarantee you a place in heaven, as my Grandmother used to say regularly. And its got nothing to do with our aging society, it is all down to people becoming too self absorbed in my opinion, but that’s just me. But lets look at another segment of our population that really suffer from friendlessness and the Blue Dog and that is people with a Chronic Illness.

In time of prosperity friends will be plenty; In time of adversity not one in twenty ~
English proverb
Where are all my Friends Now?
051677755e2d7a578874d0ac41c4ac636b3efc-wmChronic illness throws a spanner into the works where our  relationships are concerned. We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us as the friend who worked, laughed and went to the pub with them. The Mum  or Dad who had a mountain of energy and could always be relied on to help at the drop of a hat. In turn we want them to treat us just as they used to but for some reason they seem to disappear as quickly as snow on a warm day. I have spent a lot of time educating my immediate family about my illness, it is still difficult for them to accept at times. My friends have been harder to educate and I think sometimes it is preferable to just ignore me altogether than to accept this new disabled version of their old friend. But that’s not good for me it leaves me and my blue dog. As Susan Milstrey Wells states in her book –

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance. We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

But, it upsets me when I think of all the friends I used to have who now never come to see me anymore, what other reasons could there be for this. Yes, they are maybe very busy with their own lives, maybe they have replaced you in their friends network with a more active friend. However, not everyone is so brutal, the following are some reasons that your friends might have neglected to call on you –

Fear of Death – Pardon my French but hearing that a friend has been diagnosed with a serious illness can scare the crap out of people.  It forces them to confront their own mortality and acknowledge that we’re not in total control of our destiny.
Fear For Us – The irony is that some people love us so much that they are scared for us…too scared to stay.  They can’t stand seeing a loved one in pain or watching that person die if he/she doesn’t make it.
Fake Friends – Some “friends” were never true friends—many of those relationships were one-sided.   You’ve often heard the saying that, “you soon find out who your friends are in a crisis!” That being said, it’s also important not to make hasty judgments.  Judge a friendship over time—not one moment in time.
Dunbar’s Number –  According to anthropologist Robin Dunbar, our brains can only handle 148 meaningful relationships at one time.  (Having 1,500 Facebook friends ≠ 1,500 meaningful relationships.)  Have you ever had a moment when you ran into an old friend and reconnected instantly?  It made you wonder how you ever lost touch; it’s possible that your friend had his/her own dragons to slay while you were fighting illness.   This is a complication that accompanies life, changing events like becoming sick, getting married, or having a child interfere with your connections.

The following quote from an MS sufferer it is so sad –

I wish I could say that I am one of the disabled people that you see that is so outgoing and go out and enjoy life with friends. It is only a dream for me. I have ms, I am not to the point that I can not walk, but it is getting worse all the time. I do not have the strength to go out for very long periods of time so I stay home the majority of the time. I live alone, I do have my cat to keep me company, and I love him so much but I just wish I had someone to talk to.

Loneliness was acted out very well in Bridget Jones Diary –

Divided couple

People are single for longer, they don’t trust anyone as they used to do and the partner for life model has totally gone. Even internet dating has its limitations and divorce is just part of our lives now and someone always gets left behind.

A disability charity has found that a quarter of disabled people feel lonely on a typical day

“This past year has been the loneliest of my life,” says Ian Treherne from Southend in Essex. The 36-year-old has had a hearing impairment his whole life but has been losing his eyesight recently due to retinitis pigmentosa. He says he now finds it difficult to sustain friendships.

“I lost my driving licence and I’m single, so I don’t have a girlfriend who can support me,” he says. His sight loss has left him with less confidence moving around Southend by himself and he feels “reclusive” and “cut off” as a result.

Sense have released a report called We All Need Friends” (click to read this). See the following video –

It calls for a national debate around the issue of loneliness for disabled people and wants local authorities to employ more services that ensure disabled people are given accessible opportunities to make friends.

Alternatively for our elderly population, Silverline is a charity set up to help the lonely and the following video explains what they are trying to achieve –

As soon as my health is improved I will be giving a few hours to help. It will be a way of giving something back for the help I have received, cant wait to help.

The Charity Campaign to End Loneliness (click to see), state that over 1 million people are living in acute loneliness and that is very easy to believe when you have spoken to elderly people who attend the rehabilitation classes that I often attend and also the Hospice. I have a few phone numbers that I picked up from people but its very difficult trying to help when you are ill yourself.

SOMETIMES I FEEL LIKE I AM ON THE OUTSIDE LOOKING IN!

IM NOT MOANING IM JUST FED UP!

Well Xmas is around the corner and as usual I have started with26284-are-you-living-or-are-you-watching-other-people-live_325x325_width another chest infection! This is really doing my head in this time, am so sick of being ill at Xmas.

So instead of feeling sorry for myself I am taking my antibiotics on time, which took a bit of getting, as I ordered them on Friday having just used my back up. After phoning them three times today I eventually received a message that the prescription was waiting for me. Well, I wasn’t going to go in as my breathing was too compromised but the prescription delivery service just managed to get them in time, thank goodness. So mission on, lets see how good I can get in a few days.

My trip to Scarborough was quite nice, I met my son and gave him his Xmas present which he loved, I got him a smart phone and he was completely delighted with it, so that was a hit. Its horrible buying unsuitable and useless presents so that made my day.

I also met my friend whom I love but was dismayed when she started04ed7-blogg going on about the cost of funerals and the importance of having a plan and a will which upset me a bit.  Why do people think that you are going to die with this illness all the time. As I have mentioned in some of my other posts we are more likely to die with it than of it. Well as long as you stop smoking and take all the good advice that can be found out there and manage your illness well, which I hope that I am doing, I should live for a good few years yet.

“It’s time to stop counseling patients who have quit smoking that COPD is a progressive and terminal disease. Many patients are under the impression that they are steadily dying of emphysema; unless it’s obvious that they are, physicians should re-educate them in light of the new findings in this and recent papers, which create space for optimism in the prognosis of COPD. Such a positive counseling approach might improve the mood, attitude and quality of life of people living with COPD (and — dare I hope? — help them increase their activity levels).”

(A quote from the British Lung Foundation)

COPD is not always progressive as this piece of research done proves. It is a study following over 2,000 patients of varying severity for 3 years.   COPD is not always progressive!

In addition to the plethora of articles on the subject, there is the living evidence staring us in the face – many people with copd for the past 20 or 30 years are still active in their 80’s.

Its making the most of your life, being positive and managing your illness. COPD is no different from any other chronic disease such as Heart Disease, Diabetes etc its up to you how well you are!

SO HEY HO AND A MERRY XMAS TO ALL

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