The Cottage Smallholder


stumbling self sufficiency in a small space

It’s official

 

Photo: Chickens in the snow

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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44 Comments

  1. Fiona, I am so sorry to hear the diagnosis, and also relieved to hear of everything that has been ruled out.
    Years ago I was a home tutor and taught a teenager with ME. Some days she could manage the whole two hours we worked together, some days she needed to cancel it completely. She did get GCSE’s (taken at home, with extra time) and went on to get A levels, slowly, and eventually went to university. Not exhausting herself was really important, because that left her unable to do things for days, but doing what she could helped her feel better.
    As for medical insurance–hooray for the NHS, and what a scandal the insurance is, taking money and excluding conditions where is it most needed!
    As for the ME, everyone is different, so find your way of dealing with the balance of activity and exhaustion. There is no evidence that attitude makes illnesses worse, there is some evidence that forcing yourself to do more makes ME worse. You will feel more cheerful if you have a positive outlook, but you won’t make yourself physically worse when you don’t.
    I really enjoy your blog, and would miss it, but if you need to take time out from it, or write less often, please think of your well-being and do it.
    Thinking of you, and wishing I could do more than send a virtual hug and best wishes to you and Danny.

  2. Cookie Girl

    Hello Fiona, I’m new to your blog but just as concerned for you all the same. I hope any meds you are given will work for you, and I hope you will also be able to focus on time for yourself – to heal- to get over the pain/pleasure of diagnosis. Whilst you may now be ‘Fi with ME’ you are still a woman with a great spirit and positive energy. Nurture all of your qualities and take time for yourself and Danny just to ‘be’. x

  3. I can only echo the comments made before me and wish you well on your journey to recovery. Your blog brings much inspiration and happiness to us all and I hope you and your family know you have an army of well wishers here for you x

  4. Dear Fiona, I think it must be a relief to get a diagnosis at last and finally know what it is you have got to manage…and manage it you definitely will because you are such a positive, imaginative, creative and resourceful person. I know you will get to grips with it and perhaps, through your blog, you will be able to give encouragement to others who have ME.

    I, along with so many others, would love to be able to give you a real hug of support but all I can do is keep on appreciating your blog and wishing you and Danny all the best. It doesn’t really feel enough.

    love fromn Dee

  5. No wonder health insurance companies make so much money! I have something ‘chronic’ – osteoarthritis in the joints of my jaw – just in front of my ears. This was diagnosed by MRI nearly ten years ago, and while the attitude of the medical staff changed instantly from being convinced I was making up the terrible pain, to one of instant sympathy and advice on pain control, I have basically had to learn to live with it. Jaws are ‘not covered’ by private schemes, even if safe treatments were available.
    I can well see how, in years gone by, many people became addicted in order to block out pain. Even now, many of us have no choice but to take high doses of painkillers daily.

    The internet, and blogs like yours, are so supportive for those of us stuck in lives we never chose. You have such a fighting spirit, Fiona, and you have Danny and the Min Pins, and your lovely garden. And us, willing you on.
    All the best.

  6. I truly believe you already are on a path of deep healing. I hope you’ll ask for any support that you need.

  7. Ian had that about 8 years ago, he still gets tired from time to time and his memory is worse than it was but then again no worse than mine but he cycles for an hour at a time regularly (on rollers in winter) and was in the woods all day yesterday hauling out trees, so I would say he is much better now.

  8. Dear Fiona, I do not know exactly how you are feeling with this news as we are all individuals but I know you will both be in a state of adjustment now you have the blessing and the curse of having a label attached to your state of health.
    I was given this news in 1987 and much has changed for the better in the intervening years in the way ME is perceived. However it is still has it’s particular politics which can be difficult at times.
    Rod my husband has had his life changed as much as mine and I wish Danny to know we are thinking of him as well.
    Each of us journeys in a unique way but if you feel the inclination I am happy to share on any level you feel comfortable with.

  9. You live in a good part of the world for treatment, so I’m led to believe. And for what it’s worth I am much, much better than I was, and have seen many other people improve. Letting go of the word recovery allows you to follow a realistic path back to health. But for sure, you don’t need insensitive insurance b*****ds at this early stage, when you must be feeling so vulnerable. Join your local support group and badger your GP for a referral to your local ME clinic if you have one. Earlier you start treatment the better.

  10. Sorry to hear about your diagnosis, but dont despair! I have several good friends with ME and once they got a handle on it they have relatively normal lives – in fact one runs her own organic herb farm/business with only alittle help from her partner.

    Go fight the insurance company, they are all awful. My uncle paid into the best private healthcare money could buy, but the moment he was given a terminal diagnosis they cut him off totally. All the care for his MND was luckily paid for by his employers, otherwise they didnt even offer hospice care. Its a disgrace and they should be held to account for it.

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