A matter of Mind!!

[Bevvy]

Hi I am new to these sites, having only discovered them over the weekend. I have COPD. On the whole I have found reading them very helpful and interesting. However yesterday I ws reading about DLA - a subject I am very interested in. I receive DLA and have done for the past 4 years; which is prior to my COPD diagnosis which occured last October. Very concerned about changes to system and I will be one of the first to encounter it because my renewal is July13. I was shocked and a little upset yesterday reading the DLA blog that people view COPD as terminal. I have to be honest I had not considered it in that way. I am aware the condition is progressive but had put in my mind that it was a slow progression and to grit my teeth, take my meds and keep going. I have been searching for an answer to my breathing issues for a number of years and seen many different specialists who couldn't figure out what was wrong with me. As a result, getting the diagnosis was actually a relief - that I at last had a name to the issues I was having and not going mad!!! Particularly getting info from BLF has been helpful as SO much of what I have been telling doctors now makes sense. I just had not viewed myself as terminally ill.....

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H Bevvy welcome

COPD is progressive but we are not necessarily going to die from it. Some people newly diagnosed think its terminal and death is but a short distance away this it just not true for many of us, especially if we look after ourselves as we are advised to. PR course is the one to help you achieve a better quality of life and slow down the progressive of copd.

There are a lot of changes taking place, DLA is just one. Its just a pity we all have to endure such changes.

I'm sure others will be along to share their views also.

Glad you found us, keep enjoying life as you can.

Good wishes

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There are lots of other blogs on DLA still around Bevvy, just put DLA in the search box and you will see a lot come up.

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I think bizzy means that the person that made the comment removed their own comment Stitch.

[Bevvy]

Thanks for all your helpful comments.

Feeling a bit low today with everything. Worried about starting new job end of August with new people who do not know me. Am on annual leave at moment but not really enjoying self thinking about new job. Also very fed up with weather! I am signifcantly affected by the weather but would just like a bit of sun so can sit in the garden. Makes me feel better somehow even if crap for my breathing!!

[Bevvy]

Thanks

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gordon remove his stitch

[tanyamarie]

Hi, sorry to read that you were upset by comments made about your illness being referred to as terminal. To be honest Bevvy, I think alot is down to interpretation and getting the facts from your GP and Specialist. For most progressive illnesses there are stages and at some point it could be defined as being terminal. Take my dad for example. He has Emphysema and Pulmonary Fibrosis. Diagnosed with the latter 4 yrs ago. He was told it was a progressive illness and no more. He wasn't concerned, none of us were. We hadn't heard of it before and saw no need to find out more.

Fast forward to May this year. His breathing had got worse the previous 6 months or so and had a specialist appointment after failing to do a blow out test. Specialist took one look at him and said, people with PF usually live only 2 yrs after diagnosis and he would arrange pallative care. You cannot begin to imagine the state I was in and the bewilderment on my dads face upon hearing this.

Upon getting home, I researched for hours on PF only to read that it is a progressive illness with a 3-5 yr life expectancy. HAd a meeting with dads GP to discuss it all and get all the facts. Then finding out the date dad was diagnosed, I thought dad was living on borrowed time.

Fast forward to now. Dad had a good quality of life and uses O2 regularly and has regular steroids to help. He has deteriorated since May but only time will tell if what the specialist said about dad needing pallative care is true. The reason I have told you this Bevvy is because we feel as a family that had dad been told the severity of his illness at the time of diagnosis and been made aware then both mum and dad could have lived the past 4 yrs differently. They always dreamed of living near the sea.........they could have moved whereas now dad is too ill. They could have taken the holidays they always put off for next year.............dad could have made his dreams a reality......................now he doesn't have that choice. If you are informed you can have that choice. Dad's GP agrees that he should have been better informed and apologised for turning him down for a Blue badge as not realising herself the severity of dads illness. Dads specialist now (not the same one as before) says he has been ignored for years and given no treatment.

So just in dads case, we believe that he should have been told that whilst it is a progressive disease it would get worse and eventually prove terminal. I cannot say that should be the case for everyone because hindsight is a wonderful thing. After research I do know many PF sufferers have lived for far longer than the 3-5 yrs often mentioned and we are a glass half full family so positivity shall reign! We do not intend on letting dad go anywhere yet and he is a fighter so will do his best too.

[gillwigan]

I the best way to describe COPD is that it's not reversible it can be treated but not stopped but many live a long life with COPD , it's been said many times before excersise and take your meds and be happy that your not alone with this illness .

xx Gill

[derrylynne]

I suppose it depends on which way it is looked at. I have had copd since 1987. At the time I was 39 and of course then was it mild. I am now 64 and am in the very severe range. 25 odd years have passed and in the time I have had it, I could have died of several things along the way. Now I am severely disabled by this awful illness to have to use a mobility scooter for anything but the shortest distance. And I have no illusions that unless i die of something else respiratory failure will be the likely cause of death on my death certificate. So is is terminal. My view is if we live long enough, and as his is an illness that does not get better, but does get worse, albeit slowly, in the end it will kill the suffer. But - life is terminal.. On the plus side. It has taken 25 years to get to this stage, for me, we are all different. I am now being assessed for oxygen. And of course I know that this is just another stage that is to be reached. Only ambulatory oxygen, and yes I know what will come after. If I don't die along the way of something else, and that is O2 full time. But it could take another ten years to kill me. Or it might, if I keep going down with infections like I have had this last month, only be a year or two. Look on the bright side though. We can only fight this thing. And if you only have mild, you will have years to enjoy. For me even as bad as I am. I love my family. Do exercises that I can, even if only sitting in a chair. I am happy. And think only of happiness and what I can do. Not what I could once do, or no longer can do. And as the writer said above above. Take my meds

[Hidden in reply to derrylynne]

Hi Derek, Just wanted to add that on the plus side, there are copd'ers who have been on oxygen 24/7 for nigh on twenty years. So when they started, the meds and hospital treatments weren't even as advanced as they are now. So even if we refrain from optimism, you may easily be around until well after age 84, or in my case, already on 24/7 02 at 58, I could be around until at least 78 - in fact my dear GP keeps telling me to look to my eighties at least! The cloud on the horizon of course is those darn exacerbations - we need to avoid them if we can, and more importantly keep as fit as possible to fight them off if they catch us - but then I'm teaching grandmother to suck eggs now aren't I! Best wishes P

[derrylynne]

Many thanks Parvati. Yes it is the exacerbations that are the real stinger. Just got over one. Just cannot understand why the last two bad ones have been in the summer. Encouraging that there are users been on o2 for 20 years. I am back into my fitness regime. I am sure that the fitness, apart from my lungs and sob, is the reason that I carried through this last one without the need for hospital, even if it came a very close call. I think I will have to make a pact with the reaper. He can have me when I reach 100. laughs.