Thanks to a message left by someone following my post about my visit to the hospital, I spent part of yesterday, doing some research. I have to admit, that I hadn’t given the slightest thought into acquiring a home oxygen system from anywhere else other than the NHS. I am not sure where I had come up with the idea, that they were the only source of the required equipment. I think, it was from a site I turned to for information on COPD, or, it might have been a blog I read a couple of years ago. Either way, I hadn’t thought any further than that. I guess it also had something to do with the old fashioned systems I had seen, where you needed to have bottled oxygen in the house. Clearly, these days there are concentrators, they work exactly as they say, compressing oxygen from the air in the room, with no need for dangerous bottled gasses. My research also confirmed exactly what I suspected about that rule of the NHS, if you’re a smoker, you can die, we won’t give you oxygen. Yes, it is that cruel and that blunt.
There is no more danger from cigarettes, than there is if your home, is heated by gas, or if you have a gas cooker. The safety advice is identical, don’t use it near any open flame, or, in fact, even an e-cig due to the battery inside it, yes, even battery operated items can be a problem. If the NHS supply your system, they also give you a cylinder of oxygen, just in case, there is a power cut, or your machine breaks down, but this too, can be bought without a prescription. You don’t have to get any of it from the NHS and you don’t have to just sit and die. To be fair to the NHS, I doubt if there are a group of evil people sitting there rubbing their hands as the find another way to make people suffer. I am sure it is down to an obsessive view of safety, as should their equipment destroy a home and kill people, well the press response would be devastating. There is probably also a dash of health in there as well, an arm twister to get people to stop smoking, somewhat stupid as the damage is clearly already done. I did in the back of my mind, sort of have an idea, that there would be a way around it, it was just finding it.
Clearly, I still have a lot of research to do. The prices vary, from as little as a couple of hundred pounds, right up to three thousand pounds. I know without even looking, that the price stands for nothing. The most expensive isn’t always the most reliable, safest or most efficient, but as I don’t need it at this second, we have time to work on this one. I have to admit that when I found that they were available to buy off Ebay, it sort of put the whole arm twisting status of the NHS into the position of just looking incredibly silly. Finding them there, though, has provided one thing that I am so looking forwards to saying, should I find myself, in front of they same doctor, as the one I saw this week. I will take great pleasure when he says again, “but of course, you can’t have one because you smoke” my answer will just be, “it’s OK, I’ll just buy one off Ebay when I need it”. I suspect, that it will produce the second moment of dumbfounded silence, I wonder what I can find to produce the third.
It really is far too easy to just take your doctors words as those of god. This isn’t, and I am sure won’t be, the last time that I have taken them and thrown them back at them. If the truth is told, I am sure that it is for that reason, that doctors hate their patients going online, far more than just because some self-diagnose. We now have such a huge reservoir of information, a lot of it written by their peers, that we really can check everything and look for other options, if that is what we choose to do with our time. To me, I prefer to use it this way. Not as a medical research tool to find what they don’t know, but more as one to check what they do. I chose a long time ago, to trust conventional medicine, as in, I want nothing to do with alternative medicine. This doesn’t mean that my trust is blind or even blinkered.
When my Neuro suggested, that I might be suitable for a form of treatment, not usually used in the UK, but he couldn’t guarantee, that it would be successful for treating PRMS, I didn’t take his word alone for it. I immediately came home and checked out as much as I could about what this form of Chemo would mean for me. Mitoxantrone is still not licensed for the treatment of MS in the UK, at the time, the information was really hard to find. I landed up, plowing through medical trials from the USA and decided to go ahead with it. What he had told me, matched just what I had read. His knowledge matched and I, therefore, had no doubt about having the treatment, For me, it was a miracle drug. It really did stop my MS dead and my body recovered wonderfully over the 3 years I was on it. When stopped, it started to progress again. If, I had found holes in what he had told me, I would have taken a lot more convincing, before I went ahead, or possibly not.
The internet has removed the pedestal, that doctors use to stand on. They are no longer, the only source of knowledge, and that has in turn removed some of their once perceived power. It must be hard for any profession to have themselves reduced in this way, and it is something that is only going to get worse for them. It won’t be in my lifetime, but their purpose and usefulness will diminish as computers and robotics improve. Right now, though, we are all in the position where making decisions about our treatment, isn’t any longer about blind faith, or educated guesses. Whether they like it or not, the power is moving into our hands, and we are mad if we don’t use it. I choose to still let them make the diagnosis and to suggest the course of treatment. I don’t have the energy, or the inclination to spend my time, doing their job, for them, but if I can wrong foot them, or have a little fun that makes them wonder, well why not. The relationships that we have with our GP’s is totally different to those we have with consultants. With our GP’s we have years of getting to know each other. They know our intelligence level, our sense of humor and our attitude, to so much more than just our health. Our relationships with our consultants are very different. They are far more fleeting. Unless we spend some time as an inpatient, we generally see them for a few minutes, once or twice a year, or less, as you often don’t see the same one. If we are to get the best out of them, we have to be prepared, not just with medical information, but with ways of showing them who we are as people.
When I wrong footed that consultant on Monday, I know, that his opinion of me changed. If I see him in four months time, I am now prepared to do it again. I expect, that from that point on, he will look at trying to treat me, rather than trying to scare me.
Please read my blog from 2 years ago today – 12/11/2013 – Searching for facts
Two Rooms Plus Utilities 
YOU GO GIRL !!! ANY CHILD WHO CAN READ, WILL KNOW THAT AN OXYGEN MACHINE IS DANGEROUS. HAVING SAID THAT; WHY DO DOCTORS TREAT US LIKE IDIOTS.MY 2 BEDROOM APARTMENT (FLAT); HAS OXYGEN IN ONE SMALL ROOM,WITH A COUCH AND SOMETHING TO READ.I SMOKE, MOSTLY IN MY ROOM, UNLESS WE HAVE COMPANY. IT’S NOT BRAIN SURGERY. KEEP ALL HAZARDS AWAY FROM THE OXYGEN MACHINE AND YOUR LIFE WILL BE A LITTLE MORE COMFORTABLE.LET ME KNOW HOW IT FEELS WHEN YOU “PUT THAT DOCTOR IN HIS PLACE”. I HOPE YOU GET TO WATCH HIM SQUIRM. WASTING YOUR PRECIOUS TIME..
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If you haven’t looked at liquid oxygen, try that. It’s more stable. There’s less refills required. They work if the electricity fails (there’s a battery backup unit), and they don’t make the Darth Vader sounds that a concentrator does. Good luck.
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THERE ARE MANY OPTIONS AVAILABLE; YOU JUST HAVE TO LOOK LIFESTYLE,BUDGET AND AGE, MAKE NO DIFFERENCE. THERE IS A SOLUTION TO PART OF YOUR NEEDS.
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1980 I was a three pack a day smoker and did athletics. My performance dropped, so I went in for a physical and breathing test. I had small capillary damage and was told if I continued to smoke I would be dead by 45. I was 26 at that time.
In a followup visit to the same doctor, I met a man in his fifties and his daughter. He was smoking a cigarette while hooked up to oxygen, his daughter explaining he wouldn’t give it up, didn’t believe he was at risk, although he had advanced emphysema.
When this man exhaled cigarette smoke, it didn’t funnel away from his head typical of a younger smoker. He exhaled without enough force to push the smoke away from his face, the cigarette smoke thus just lingering in a heavy could around his head. This was before Kaiser banned smoking in it’s hospitals.
Seeing this man’s ignorance at play in a highly rationalized state of mind and my potential for being where he was in another 25 years, I quit cold turkey and never went back. I have never had a craving to return to this unhealthy habit, thank God.
Smoking is one of the stupidest things a person can do, and Oxygen and smoking is pure idiocy, my opinion. I have no idea what the internal mechanism is for rationalization, but when I see people doing this, I just figure humanity is a dead end in that person’s existence, that for some reason s/he clicked off reality and forgot where the light switch is.
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I would partially agree with you, if it wasn’t for the fact, that the damage to my lungs, isn’t that bad. My problem is that my PRMS, is closing my lungs down. Even the consultant agrees, stopping smoking isn’t going to extend my life. I could die tomorrow, as it could literally squeeze the air out of me and stop me taking another breath.
The oxygen, would make life more comfortable, during the smaller, almost hourly attacks. Clearly, you haven’t read the lead up posts to this one, but there is a lot more to my situation, than just an oxygen machine, and smoking.
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Smoking does effect MS and can precipitate complications. It’s in the MYo Clinic literature.
Something sent me to the hospital two weeks ago which I thought was a heart attack, but looking over MS I had these symptoms.
I was there two days and left uncomfortable with the idea they were looking for something medical that was stopping my breathing and spiking my BP while asleep. BP would jump from 136 to 170.
I didn’t tell them about the other symptoms: numbness in my thighs, eyes hurt, problems walking normally, which may be early onset MS.
Fatigue overwhelms me and I pass out, but I’ve always been healthy. I’m going to have Dr evaluate me for MS and cut to the quick.
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You are missing one important factor, the degree of damage and the phase of the condition. I am living on a downwards ticking alarm clock, all set with it’s time to go off. If I stopped smoking today, the amount of time it would give me would be days. To me, that isn’t worth it. I would far rather to continue, every cigarette that I smoke. Quality of life, is far more important than longevity. What is the point living, if your going to be miserable. Living is supposed to be about enjoyment, which thanks to my health, is limited. I quite honestly, don’t care what damage it is doing to my PRMS, Fibro, COPD, Chronic Vasovagal, IBS, Osteoarthritis, Oedema, Asthma, Chronic Bronchitis, Macular degeneration, Eczema, Optical Migraine, Carpal Tunnel Syndrome, HMS or gallstones. Oh, and you missed one thing, my doctor agreed, stopping smoking won’t help me live longer. It would just allow him to prescribe oxygen that would make me more comfortable.
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MY LIGHT SWITCH IS ON.!!! UNFORTUNATELY, GOD DECIDED THAT THE REST OF ME WAS NOT WORTH THE TROUBLE.MY SPINE,LEGS,HIPS,ONE BREAST,MY STOMACH,MY MUSCLES SWITCH ON AND OFF WHENEVER THE HELL THEY WANT TO. ADD IN , THE FACT THAT I’M AGING AND ALL THE WONDERS THAT COME WITH THAT; OH AND I WAS BLESSED WITH A GENETIC DISORDER THAT IS MAKING MY TEETH USELESS, WELL, LET’S JUST SAY THAT SOME DAYS I WISH MY SWITCH WOULD TURN OFF PERMANENTLY.!! JUST FOR GOOD MEASURE,I’M IN AN INCREASINGLY ABUSIVE RELATIONSHIP, SINCE MY BODY IS “SWITCHING OFF””MORE AND MORE.SO I HAVE LONELINESS TO LOOK FORWARD TO. EXCUSE ME, IF SOMETIMES THE 5 MINUTES I GET FROM A CIGARETTE,IS THE ONLY STRESS FREE THING IN MY LIFE. DON’T JUDGE; YOU ARE NO BETTER THAN ANY OF US..
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By all means, indulge the addiction and blame it on the Divine, or you could take personal responsibility for this and research and learn about your disability so you can improve yourself. You aren’t awake at all. You’re living in a dream world the theme of which is “pity me” laced with addiction typical of a person with a stressful lifestyle. Get over it. Get a grip. get going… NOW!
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IGNORANCE, MUST BE BLISS. YOU ARE STUPID AS THE DAY IS LONG.LET ME INTRODUCE MYSELF: DR. NEVI JOVI. WHAT PLANET DID YOU HATCH FROM?/
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By all means, indulge the addiction and blame it on the Divine, or you could take personal responsibility for this and research and learn about your disability so you can improve yourself. You aren’t awake at all. You’re living in a dream world the theme of which is “pity me” laced with addiction typical of a person with a stressful lifestyle. Get over it. Get a grip. get going… NOW!
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You are so far off the mark, you simply don’t get it do you! I am so far down the line to dying, that it makes no difference whether I smoke or not. I don’t live a stress full life style, in fact, I don’t think I have ever been calmer or more relaxed. Not everyone on this planet, has the possibility of being cured, I am incurable, fact and the last thing on this earth, that I could ask for is pity. I am not in a dream world, I am the one in the real world. I used to live in one, believing that once I had a diagnosis that everything would be fine, that they would have the cure and life would go on. That was the dream world, where I am now, is the reality. There is nothing anyone one can do, including giving up smoking, that will change it. All we can do, is accept, be happy, and live as well as we can, until our time comes. I intend, to enjoy the final time I have in this world. Granted, being housebound, wheelchair bound, constantly in pain, with a body that doesn’t do what it’s told, enjoyment is limited, but I will enjoy it.
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YOUR WORDS MAKE ME SICK.YOU ARE AN IDIOT.YOU DON’T KNOW WHAT YOU ARE EVEN COMMENTING ABOUT.DOCTORS HAVE NO IDEA HOW TO TREAT PAMELA. WHO THE HELL DO YOU THINK YOU ARE TO TALK TO A DYING WOMAN THAT WAY.YOU NEED TO GET A CLUE AND THEN GET OFF THIS SITE…….NOW
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Feminist.
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PAMELA, HOW DO YOU HANDLE SUCH NARROW MINDED IGNORANCE??????????????
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