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How I joined the ranks
#11
yes, dont take the shingles jab. My doctor tried to get me to take it and I resisted until he read up on it and dropped the issue.
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#12
Hi jon 1,
            Welcome to the forum, I have been a sufferer for a few more years than you have been.
I was lucky getting a machine as I am in Scotland and the NHS is controlled by the Scottish Government, (as it was back then, much more say in things now) they luckily didn't have to ask for funding policy like the English NHS.  If you needed a machine and there was one, you got it.  Sleep Apnoea (Apnea) was not even heard of by a lot of doctors when I was sent by my doctor at the time.  He needed a big push and he got it from me and the other half.  He said "No one has ever died from Sleep Apnoea".  Well that did it he got it with both barrels.  He was shown clippings out of a magazine and newspapers. 
He then sent me to Aberdeen Royal Infirmary to the Ear Nose and Throat department.  As luck would have it Aberdeen's E.N.T. was attached to the Chest Clinic.  The guy I saw just happened to be the one who was starting up a Sleep Clinic, or at least trying to diagnose everyone before transferring everyone to Edinburgh for treatment.  The first run the nurse pressed the wrong button on the computer and lost all the data.
I was on a ward with about 12 other beds in the Chest Ward, so you can imagine the coughing and wheezing there was all night!

I had to go back the next night, to my joy I was in a private room (side ward) and a male nurse called Spike was to look after me.  Well I have never seen a nurse look like Spike, spiked hair of all colours, and very feminine in everything he did.  However, he did a grand job of setting up the equipment and looking after me and in the morning he made sure he had all the data. 
He said he kept looking in during the night, but I never noticed as I was dog tired and would have slept if a band had been playing.  Anyway, I was then sent to Edinburgh after a six month wait for an appointment and a word with the Professor there, who was one of the leading consultants in the UK back then. 
By pure chance I knew his brother, but the less said about him the better. 
I was told he would do a test that night as he had someone cancel, so the rest of the day was mine.  So I went into town and had a couple of pints before I walked back to the Sleep Clinic for testing.  It was a half and half test, 1: to see if Aberdeen was correct and I did have Sleep Apnoea, 2: was to set the pressure for a C.P.A.P. machine.
I came out in the morning and then went to see the Professor.  He looked at the results and said "Wonder you are still able to function!"  He made a call and as luck would have it they were due new machines in later that day, so I was told to come back, but first I had to go see the Sleep Nurse, who would fit me up with a mask and hose and everything I needed. 
I went to see her and by the time she had fitted me up with a mask (I knew nothing back then, just accepted what she handed to me.  I know better now, what a trouble I had with masks before I got one to work for me.
Anyway, I didn't have to wait for a machine, unlike England, they had to wait as they had to apply for funding for a machine and a care package.  It usually took around six months.  Why were you told two years?  If you had been in Wales I might have understood as it must have the worst record for waiting times for Sleep Apnoea.

Anyway, just wanted to say Welcome to the Forum.

I only wish there had been a good Internet back then and the helpful sites like this one back when I went through the mill.   Rolleyes 
The phone calls and running up and down to Edinburgh I had was unreal, once a year and every time I had a problem!
Just as well I had a firms car back then Smile
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#13
EEk!  I have not had Chicken pox or Measels when I was young, I was bulletproof, very rarely had a cold!
It is all change now, I had cancer and now everything that I bump into I get   Unsure Sad Blowing-nose Shock
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#14
Hi Jon1,
WELCOME! to the forum.!
Wow, you sure have been through a lot. It’s great that you are doing so well with your CPAP therapy, keep up the good work.
I wish you good luck as you continue on your CPAP journey.
trish6hundred
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#15
Welcome to the forum Jon 1, I hope you continue to benefit from your participation. You have been on a rough road that many of us do not know. You appear to have a positive attitude which is probably giving others a boost. Keep on keeping on, out thoughts are with you.
Stan
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#16
(03-04-2017, 12:55 PM)Jon1 Wrote: LoL ! The moral of the story is to make sure your kids / grandchildren all catch chickenpox when they are young, if not find someone who has it and let them touch those blisters. Its ruined my life, but I cannot blame my parents or my child or even Japan.

You are just entirely wrong.  It's childhood chicken pox that leads to shingles later in life.  The moral is to get the vaccine against it in childhood so the infection is blocked and the virus can't live on in your nervous system to give you shingles as an adult.  If you don't get chicken pox you won't get shingles.

I was a child before the vaccine was invented and a couple of years ago I got shingles *because* I had chicken pox as a child.  Fortunately mine was a mild case, but I have friends who didn't have "mild" cases.

If you want to make certain your child is highly likely to get shingles as an adult make sure he gets the chicken pox as a child.  But what parent would want that?
Ed Seedhouse
VA7SDH

Your brain is not the boss.

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#17
Thanks for all the replies and I phope you are all enjoying life to the full. Its been a hard road, but with 15+ problems its never going to be so easy. I was also diagnosed with fibromyalgia which is another weak immunity system by product. The about of pills I take is slowly increasing and then one has to side step the side effects as well. Here in England, the NHS machine is cutting costs across the board including medications. The cheaper generics are flodding in and ofcourse when your script is sent to your pharmacy, you end up with a different generic brand which may or may not have vicious side effects. All this to cut a few pennies off the costs.

Its a mad mad world we live in master jack
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#18
jon 1,

I know exactly what you mean about the drug situation, we get it up here in Scotland as well.
Something you are used to and know works get changed (not always by the doctor) to a cheaper brand that may or may not be as effective.

Fibromyalgia: I suspect I am suffering from it since I was in hospital.  Pain in muscles most of the time from the neck down to my feet.
This has been slowly creeping in though has been in the background since I was in hospital.
The normal Oxycontin that I am on does not appear to help with the pain, though it does help with nerve pain.
The doctor has stopped hort of saying he suspects I suffer from this, but it is just something else I will have to put up with.
I get strange headaches as well and some days I just can not get any relief from the pain.

How do you cope with it day to day?
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#19
(03-04-2017, 09:15 PM)eseedhouse Wrote:
(03-04-2017, 12:55 PM)Jon1 Wrote: LoL ! The moral of the story is to make sure your kids / grandchildren all catch chickenpox when they are young, if not find someone who has it and let them touch those blisters. Its ruined my life, but I cannot blame my parents or my child or even Japan.

You are just entirely wrong.  It's childhood chicken pox that leads to shingles later in life.  The moral is to get the vaccine against it in childhood so the infection is blocked and the virus can't live on in your nervous system to give you shingles as an adult.  If you don't get chicken pox you won't get shingles.

I was a child before the vaccine was invented and a couple of years ago I got shingles *because* I had chicken pox as a child.  Fortunately mine was a mild case, but I have friends who didn't have "mild" cases.

If you want to make certain your child is highly likely to get shingles as an adult make sure he gets the chicken pox as a child.  But what parent would want that?



I feel a need to chime in. eseedhouse is correct!

If you have had chicken pox as a child, you can (1 in 3 adults) get Shingles later in life. If you have had CP as a child, the virus lays dormant when you are older, until for whatever reason (stress or a compromised immune system) then it rears its ugly head.  

Children should be vaccinated.  

As an adult, if you are concerned about Shingles, get the vaccine.  Yes, you can still get shingles even though you've been vaccinated, but it would be a mild case.

Believe me, I have two relatives that got shingles and it was horrendous for them.  It will change your life and affect your daily living.
The Shingles shot is a no brainer especially for older folk.
OpalRose
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#20
Quote:As an adult, if you are concerned about Shingles, get the vaccine.  Yes, you can still get shingles even though you've been vaccinated, but it would be a mild case. Believe me, I have two relatives that got shingles and it was horrendous for them.  It will change your life and affect your daily living.  
The Shingles shot is a no brainer especially for older folk.

Indeed. I wish I'd had the shot.

A friend is currently suffering from his second bout of shingles. This time it's affected one of the nerves to his face and now he has Bell's Palsy. Apparently his doctor has taken him off the antivirals, which I find utterly astounding. Hopefully the Bell's Palsy will clear up, and I hope he doesn't suffer from permanent damage.

Regards-
Dave
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