It’s official
Posted by Fiona Nevile in Cottage tales | 44 comments
Photo: Chickens in the snow
Things have been hectic here at The Cottage Smallholder. I have finally been diagnosed with Chronic Fatigue Syndrome (ME), which developed from the bad kidney infection that I had in summer.
The diagnosis takes a long time as you have to be tested for the full gamut of other potential illnesses (cancer, thyroid problems, TB etc). All those tests were negative and I’ve completed the six months of prodding and poking. I’m now booked into seeing a consultant neurologist on Tuesday.
But I don’t want to dwell on being ill – rather focus on getting better. Danny has private medical insurance for us both as part of his employer’s benefits scheme. That led us to believe that we had a buffer from the long waiting lists for the few N.H.S. Chronic Fatigue Syndrome treatment centres.
When I called the health insurance company to obtain approval for my neurologist appointment, I had to hold the line for a few minutes.
“I’m sorry but Chronic Fatigue Syndrome isn’t covered by your policy.”
When I asked why I was told.
“Anything termed ‘chronic’ is incurable. We don’t cover chronic illnesses.”
“But it is treatable. That’s why there are treatment centres.”
“Treatment is not a cure.”
“Oh.”
I was deflated and enraged. Incurable – that was a kick in the belly.
When I asked to be passed on to someone higher up the chain she tried to be reassuring.
“If they discover that there is something wrong with your brain we might be able to help.”
After an hour of ranting in bed with the Min Pins I began to believe there could very well be something wrong with my brain. Then I finally calmed down.
O.K. Aviva I’m going to show you that CFS is curable. Watch this space.
If any one out there has private medical insurance, please check the small print to avoid disappointment.
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Hello Fiona,
What a lot of wise words have already been said, but I just wanted to add my support at this difficult time. Where there’s a will there’s always a way and I feel sure your strength of character and zest for all that is good in life will help to pull you through. I do hope you are able to continue with the blog and benefit from the help and support of so many people who have come to see you as a friend. Very best wishes
Hello Fiona, I always think that a diagnosis is the first step to healing as now you know what you are dealing with. And think of all the really nasty things you have been found not to have! I also believe that, especially with viral problems, nutrition is the best way forward. Having struggled with Post Viral Syndrome in the late 80s/early 90s I now seem to have escaped its grasp and have had no further problems for many years now. As other people have already said, one of the main ways of dealing with this is to pace yourself, know your limits and working within your limits, as pushing yourself doesn’t make you better! Do some research into vitamin D. I have been taking large doses (2000 iu per day) of Vit D for a few months now having read about the role it plays in strengthening our immune systems and I am convinced it makes a difference. I had a cold just after Christmas, and although I don’t get many colds – usually only 1 per year – they are usually humdingers and leave me feeling too ill to work and facing weeks of hacking cough, sinusitis etc. This cold was gone in 3 days and was so insignificant I didn’t even feel ill. I also take loads of Vit C. Your illness has changed your life but it doesn’t need to be a change for the worse. Love Pamela
Oh, I really feel for you. But your attitude is already showing that you can beat it! Good luck and lots of love to you both…
Years ago a group of students in the school where I was working contracted hepatitis and many of those suffered from ME afterwards. The difficulty in getting anyone to believe they were actually ill and not malingering was unbelievable. At least things have improved to the point where it’s now recognised and help is available to manage it. The good news is that they all went on to live ‘normal’ lives, albeit at a little slower pace than they may have imagined. Insurance companies? Don’t get me started! As you’ve already said, it has changed your life but you are being so positive about those changes that I know you will come out of this ok. Have you read Flora Thompson’s ‘Country Calendar’ – published after ‘Lark Rise’? The gypsy told Laura she would be ‘loved by a lot of folks – strangers shall become friends’. You too, Fiona!
Fiona (((((Big hug)))))) in someways it is good to have a name for it and know there is treatment.
Am routing for you and hope the head doctor gives you some great advise and a fab treatment plan!
Love Sxx
wow-what a way to start the week-end! but you certainly have some wonderful ‘readers’! my ‘chronic’ condition is (thankfully mild) multiple chemical sensitivities i picked up after working in a sick building for 11 yrs. but since i can, in theory, work, i don’t qualify as eligible for social security/disabiity. i was told that if i wanted to apply through worker’s compensation, i should lie about my allergies, get a job anywhere, make mysef as sick as possible (yes-risk longterm lung issues, etc.), & re-apply. that,btw, is the advice professionals dole out! i say, since you are dealing w/private insurance,you should get your documentation together & appeal the decision.
Hi Fiona,
Sorry, and glad to hear your news, the glad part that you actually have a starting point.
I was pushed from gyny to endocrinologist for 9 years when I was sick in my late teens early 20’s and none of them could decide what was wrong and to be honest the frustration of the feelings of no one believing you or telling your symptoms over and over to endless people in white coats to be looked at and then sent on to the next one ( usually another 3-6 months wait in between) is enough to send you round the twist.
As for the news about your private health care I can’t say I’m surprised. I once discussed this with my bosses insurance agent and he basically told me, that anything that ends in ‘syndrome’ they class as a made up disease cos the doctors aren’t really sure and just just give a collection of symtoms a fancy name. My mum has fibromyalgia and she gets the same ‘ oh yeah you whacky woman looks’ from anyone in the medical circles almost as though they are thinking ‘ oh they have just told you you’ve got that to shut you up whining and wasting money on more tests’.
I have nothing good to say at all about the NHS they caused my breakdown and aggoraphobia which has taken away such a big chunk of who I could have been in this short life, and I also had a couple of close relatives who died suddenly because of mix up’s with medications and lost notes etc and my only cousins only child is permanantly disabled ( fed thru a tube since birth will never walk talk or mentally be above aged 2) because of drugs administered twice by accident during her labour. The NHS is rubbish, I often say to people who say ‘we’re lucky to have the NHS’ well I’d hate to know what unlucky was then!
Try and stay positive fiona and although its not good news its miles miles better than finding out you have something that was going to progressively get worse.
Anyway its not so bad, like you said in a post about leaving the job you were bullied in and it got you to the place you are now, maybe your illness is just another part of the cosmic jokers great plan for you, to slow you down, diversify, and move on to a new slower phase in your life <<>
So sorry to hear of your diagnosis Fiona. Insurance companies have their own circle of Hell already reserved, put their hideous attitude out of your mind, they’re a negative energy you don’t need to concern yourself with.
Like many of the writers above, I know of people who are managing their ME. It’s taken them time, but they have figured out how live with it, they know how much they can do, and they listen to themselves and rest when they need to. Good luck to you. I know you’ll come through and find a way to live well with the ME. It won’t beat you!
Hi Fiona,
I haven’t written in a while but,thought I must reply to this post.
I have known two people with ME, both of whom have now recovered (one is expecting her second child!)
I remember my former neighbour’s was triggered by an simple operation. Her ME was very bad to begin with to the point where she had to crawl on her hands and knees to answer the door. I am glad to say though, that with plenty of rest she made a gradual, full recovery.
The other person’s was triggered after being injured in a car crash but again she too has fully recovered so try not to get down by your diagnosis and carry on doing what we are all used to you doing-remaining positive in adversity!
love Heidi xx
Really sorry to hear about the diagnosis. A close friend of mine is living with ME and according to her the latest news is the following:
1. It is an auto-immune system caused by a virus.
2. It can be passed on to your kids if you had it while pregnant.
Not all that much fun, but apparently there is some really promising research going on now that might actually find a cure for it within the next few years, so don’t dispair!!