It’s official
Comments(44)
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.
Thank you for your comments. And a bit of silly bath time fun with the Frothing Sea Monster trick!
Cutting energy costs
Recipe for sausages baked with herby garlic infused beans, bacon and tomato
Tracing some of my ancestors has taken me on a long journey
Recipe for lamb shanks braised in red wine with shallots: slow cooker/crockpot
The cupboard was bare – so what was The Contessa going to eat last night?
HG
I follow your blog and love it and I’d just like to say that is really RUBBISH news about your diagnosis.
I wish you every luck with your treatment, I also know (from having a life-threatening illness myself) that your mental attitude to life and normality is REALLY important. I hope that as part of this bit of your treatment you will keep the blog going as if you didn’t I am sure that it would be sorely missed, not just by me but many other readers too.
You are so much more than a *diagnosis* sweetpea.I was in a scary place back in the summer & dealing with neurologists, I know a little how you must be feeling x I hope yours is as good as mine was.Remember that anything is managable,anything ,may not be curable as they define curable but theres a heck of alot that can be *managed* x
God bless & good luck for Tuesday.
GTM x x x x
You haven’t got any of the terrible things you were tested for – it may take some while, but you’re going to get over this. I’m so sorry though, honey – it’s a depressing thing to face.
Oh Fiona, you are such a good friend to all of us and we all feel for you. There will be many prayers said for you and so many good wishes. Be brave, love. I too wish you all the best for Tuesday. On the positive side and there always is one, you have not given in to this illness and have achieved so much in the last few months and I am sure will continue to do so. You are a very determined and brave lady.
I’ve been following your blog for some time..I’m sorry to hear you have been diagnosed with CFS. I have fibromyalgia which sits in the same family and I can completely appreciate what you might be going through. I was diagnosed last year after several years of banging my head against a wall…but finally I got a diagnosis and treatment. I’ve learned to live with Fibro and learned when to slow down…that is the hardest thing when you are used to go go go…although there is no “cure” at the moment, it can be managed. Best of luck and keep up the fighting attitude…I’m sure you will shown them!
Hello.
So sorry. Please take the time to read this artical. She is a local Mum who was also struck down with ME.
It might be worth contacting her.
Best wishes
Colette
http://www.bridportnews.co.uk/news/bridportnews/4877070.Chideock__How_mum_of_six_beat_ME/
Fiona I have been through something similar and will help you if I can – I have prepared a post to send to you if you can leave an email address for me on fluffupyourfairy@hotmail.co.uk. The post is too long for me to put on here.
With kind regards
Tricia
I would be willing to bet that there is a lot out there on the ol’ web about treating CFS. I’m pretty sure the woman who wrote the book about Seabiscuit had it while she was writing the book, from her bed, on her laptop. She did all her research from bed as well- there had been a news story on TV about it awhile ago. And recently I saw her on something else and she appears to be okay, so I think you have a good chance of kicking it.
Good luck, and now I know what to pray about for you.
I’m so sorry your tests didn’t result in a “take these pills for a fortnight and you’ll be fine” diagnosis. Try to take heart from Z’s point that the tests have ruled out some really scary life-threatening things.
I went through something similar 5-6 years ago and ended up with a diagnosis of fibromyalgia, and trying to get my head around “chronic” and “incurable”.
Fast-forward to the present day and it’s a whole different story. The fibro is mostly managed, and when it does flare up I’ve a better handle on coping with it.
I’ll be watching this space, and applauding your determination. Good luck.
I think there is something wrong with your insurance companies brain! Keep on the sunny side.
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.
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.
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.
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.
I truly believe you already are on a path of deep healing. I hope you’ll ask for any support that you need.
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.
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
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
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
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.
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!!
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
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,
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 <<>
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.
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
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!
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…
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
One of my bestest friends has had ME for years, and manages it so she can hold down a full-time job in senior social work and an extremely busy social life. She has bad days, but don;t we all. I had a Post Viral Fatigue Syndrome for over a year after a bad bout of flu, so I have an inkling of what you’re going through, in my case, by the time they diagnosed it, I was mostly over it. I get odd flare-ups from time to time, but nothing major. ME CAN be managed so you barely notice you have it, so chin up girl, and if you want any advice, let me know and I will ask my friend Kath to get in touch.
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
I just want to say a huge ‘Thank you’ to all you people for your fantastic support and really helpful and uplifting comments.
It’s an old cliché to say that it means so much to us but I cannot think of better words.
It just does. Believe me.
As the subject has been raised I would like the caring people who read Fiona’s blog to know that not everyone recovers from ME. Most do but there is a significant proportion who have lost for ever the chance to have a normal life and there are those who remain bedridden and some die from the complications. I just wish to speak for them.
Wishing you Well again, Fiona. It’s awful to get such depressing news – but at least the terminal ‘nasties’ have been ruled out.
The fact that you can still write the Blog, care for the hens & dogs, do some gardening & have such a thriving gateside stand with a wide variety of home-made goodies thereon, shows how determined you are not to let this beat you. I have every faith you’ll get your health & your life back; we are all thinking of you & rooting for you! And Danny too – you’re such a pillar of strength to Fiona, she’s a lucky gal!
Best wishes dear friend, may you soon beat this thing & prove those Insurance company eejits wrong.
I like your attitude Fiona and now you know the diagnosis you can face this head on! I know you are a strong person and through the hard times you have battled on with life and things that you love and also found new things to love. I am sure you will get through this and all of the bloggers that adore you and follow your blog are with you all the way!! As for the insurance company well you just show them!!
With Much Love, Jane xxx
Hello Fiona, let me begin by saying how much I have been enjoying your blog, which I somehow stumbled across a few weeks ago. It’s also lovely to read so many caring comments. This is the first time I have commented, I hope you don’t mind.
I am sorry you have been diagnosed with ME, I myself developed ME just over 5 years ago following a viral illness. My experience has largely been slow improvement, with a remitting/ relapsing pattern. I now am able to do a quite a lot of things, and enjoy life, but have not reached full health. I am currently coming back up from a relapse. I’m not able to work, especially as I have children who come first. May I say a few things based on my experience?
An ME diagnosis is a blow ( thankfully it’s not worse) and can take some digesting. and it can take time to really discover what it will mean for YOU – everyone is different. Give yourself some space for this and certainly don’t push yourself ( you really can make yourself worse) – do what you can as you can, little and often, and protect doing the things you enjoy if you can. Try and keep active, even if it is just a very little, and do things you enjoy but don’t push it. If you over do it and experience payback, take heart and be patient, rest up/ cut back as much as you need – managing ME is not an exact science! Be optimistic. It seems from reading your blog that you have already improved a little (- I do hope that is the case), and that you already pace yourself as you can, which can help a lot. You’ve also got the lovely Danny;) Many people have little idea about ME and what it can mean for the people who have it; I think you only really know when you have it yourself or live with someone who does – my best friend who I know really well had it for years before I did, lets just say I know a whole lot more about it now!!
For information on ME, management and treatments, research etc etc the ME Association can be a useful starting point for some people, perhaps you have this web address already? Personally I didn’t look at this or other sites initially, I needed to get used to the idea first, and that was right for me.
http://www.meassociation.org.uk/
They do have information about the (little) research into a possible viral link, but that is all it is at present, (a little) more research is being done which may in time establish a clearer link. I
With regard to treatments, I would say first find a kind of equilibrium in yourself before trying any – it always uses energy to pursue these things, and do some research as far as possible. You will get to know yourself what helps and what doesn’t. Some people find things helpful which other people don’t. Support from other people who have or understand ME is really valuable.
I hope I haven’t spoken out of turn and I’m sorry this is so long! Warm best wishes to you and Danny.
Fiona — A couple people have mentioned a viral link. It’s a retrovirus called xenotropic murine leukemia virus-related virus (XMRV), and it’s present in something like 2/3 of people diagnosed with CFS (and only a few percent of the general popoulation). So far, no causal link has been found, but the fact of a significant correlation helps take the CFS diagnosis out of the realm of the psychiatric. (There’s an article in the New York Times here: http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=1&scp=1&sq=chronic fatigue syndrome&st=nyt)
Perhaps if the diagnosis were listed as “XMRV” rather than “CFS” you could get treatment under that moniker?
Regardless, I’m wishing you all the best from across the pond. Strength, fortitude, and optimism seem to be qualities you possess in abundance, and I know they will serve you well as you battle this.
Hi Fiona
What can I say – I echo all the comments above. I know you will win through – you are so positive and have a strong “base” to fight this through with Danny and the Min Pins there to support you. Stay strong!
Wishing you a speedy recovery…
Jouals
I am sorry for the diagnosis, but there is hope. I will tell you I have two cousins who work for the NHS in England. What you are describing is typical American reaction from insurance companies. Be careful you do not turn into this! Private insurance not all it is cracked up to be; and this proves it.
Hello Fiona and Danny.
It’s been an absolute age since I last posted on here, mostly because my life has become insanely busy (got married, moved to Leeds while hubby is still in Bristol, I’m doing a PhD and teaching…) but I occassionally still pop on here when I miss your words and saw your post. I’m so sorry to hear about your diagnosis. Living with chronic illnesses is tough, but I know that you will manage. You two have something so amazing, a bond of love, friendship and support and that is what will get you through this. There will be times when it will all feel like it’s too much to cope with but together, you can surmount any obstacle. Draw strength from each other and take it all slowly. Don’t feel guilty when you set yourself a task to do and couldn’t finish it. And if you do to-do lists, remember that 99% of things do not have to be done within a strict time frame. Allow yourself some slack and try to keep your chin up love.
My thoughts are with you both. xx
Poor you.
I’ve been following the blog on and off for a few months and have been very grateful for the jam and liqueur recipes. I guess all this support you are now receiving is the readers repaying the pleasure you have given through your website.
Whilst exploring the recipes, I wondered how your health was, whether you were suffering (as I am) from any of the F conditions (female, fifty plus) that seem to revolve around a diet too high in sugars and animal fats and resulting in digestion problems: liver, gall bladder, low or high stomach acid, and also diabetes.
I live in France after spending many years in the Netherlands. Watching BBC’s Saturday Kitchen, I continue to be amazed at the rivers of pork fat, cream and butter, and avalanches of sugar that flow onto the plates served up by James Martin. But of course, it is all traditionally British and soooo delicious. I also see that most of my female Brit friends/colleagues are now obese or borderline, unlike my Dutch and French friends/colleagues.
Last year I had a liver/gall bladder crisis which turned out to be the cause of a wide range of symptoms building up over the last years. This was despite my presumption of enjoying a healthy diet. Ha! Anyhow, what I’m getting around to saying is, the dietary chickens come home to roost in your 50s! Your diet may have played a role in your condition and could most probably play a role in healing it.
What has been most helpful for me is http://whfoods.org/ (The World’s Healthiest Foods) that has reminded me how to cook so that nutrients are best preserved and which foods are best for which health conditions. I recommend that you have a look just to check that all is right on the nutritional front. The book is excellent value.
For increasing energy and supporting the immune system etc, etc., I have found Chi Kung (aka Chi Quong and other variants) exercises to be very good and much easier to learn and do alone than Tai Chi. Also good for ‘quieting the mind’.
And above all, acupuncture. At first I was very sceptical (and hate needles in me!) but the results are very convincing (and the needles are mostly painless). I particularly like the fact that an acupuncturist can diagnose and treat potential conditions before symptoms become apparent: it is preventive as well as being holistic!
Using these three ‘treatments’ represent a more holistic approach to attaining and sustaining good health than conventional Western medicine does with its reliance on invasive methods like surgery and heavy drugs: it seems to focus on fighting symptoms more than striving to treat the cause of a condition.
So if conventional medicine does not help, you might consider these. Note that acupuncture often can’t be had if you are on strong medicines. But get onto nutrition/diet right away – at least you have full control over that!
I’ll be thinking of you. Good luck!
Hope all goes well when you see the specialist.
Whatever the treatment suggested, I’m sure taking things slowly and gradually will help you get better.
Like exley, I was going to suggest Chi Kung as a form of exercise you could do as you recover. I’ve done it as the warm up for Tai Chi, even the chair bound and frail can do the exercises and they really help to boost energy and lift the spirits.
Best wishes
Celia
x
Dear Fiona,
I think you already know how much I love this blog – like all the other people above. I have no tips or advice. Just wanted to add my support. One good thing is that you now know what you are dealing with. As for insurance companies!!!!! How come they always find a loophole??? Honestly, they make me so angry.
I would have commented earlier, but I missed this post. I now subscribe by feed reader to your posts and have discovered that, not only do they arrive late, but also when I click on my link to you, there are newer posts that I haven’t seen. I think I prefer the old way, when I caught up with the news at the Cottage Smallholder with my morning tea.
With very best wishes, Sally. And, thanks again for the inspiration and information.
Hi Fiona
I’ve been away for a few days, so just read this. I’m glad that at least you now have an official diagnosis, and lots of other nasties that must have been worrying you have been ruled out. It is a blow, but you’ve already shown by your activities over the last months that you can beat this and live your life, recognising the limitations to what you can do and working around them. And I’m glad you have Danny, who is such a supportive partner. Belated Happy Valentine’s Day to both!
I’m with Suzie on insurance companies: they have their own circle of hell. How crass and insensitive that person was. As you say, the fact that it may be (currently) incurable doesn’t mean it can’t be managed and treated. So sod them — I hope you can now find a good combination of treatment and techniques that will help you manage.