CFS the Medical Orphan (Part 1)

Welcome today to my FB friend Sarah Waldock who is going to talk to me about Chronic Fatigue Syndrome.This was sparked by an article in the Guardian

I leapt on it as I have been diagnosed with CFS (thanks be that French doctors DO diagnose it) following my motorbike accident and three-week coma. I make no apologies that this may end up being a two-day marathon as it is a complex and interesting subject which I know will draw a large audience.

Welcome Sarah. Come on into the kitchen. Tea or coffee and home-made fruit cake or sponge? We have both and don’t mind the dog and cat, pet them or push them away, they are used to it.

I like a cup of tea, builder’s strength which only looks at milk and as Simon isn’t here to feel jealous, fruit cake always goes down nicely and bother the calories. I’m used to several cats trying to occupy my lap at once or up on my shoulder sucking and dribbling. Dogs I only mind if they are over 10st and try to sit on me.

Lily is only small and only sits on family. So Sarah – you also have CFS – how did you get diagnosed and when?

It took almost a year to get my diagnosis, during which time my doctor was telling me I ‘only’ had post natal depression, was a hysterical woman red pillsand should pull myself together. I was one of the fortunate few to show antibodies to the infection believed at the time to be the most likely cause [I don’t know what current theory is] when I managed to force him to send me for a blood test, and he had to actually treat me as ill instead of trying to push Mogadon (Nitrazepam) on me. This was back in 1985.

Do you also suffer from depression because I know many times it is linked? In my own case it lives with Bipolar condition.

Oh yes. I was a stranger to my husband Simon for many months, and I will never forget how kind he was to poor Jean – as we christened her – whom he loved, though he didn’t like her. He was a ruddy SAINT. He was always depressive and he got me playing the ‘glad’ game, which I had taught him, and introduced him to the ‘real’ Pollyanna, not the pi and pukable twee one on the film version. He gave me gladness back and the ability to fight with far greater skill than any ruddy doctor. I was, however, fighting against being labelled as ‘depressed’ for a long time; because the doctors wanted to treat depression with happy pills rather than coping with the idea that I was depressed because I was ill, not merely ill because I was depressed. Bunch of wankers. Am I allowed to say that in an interview?

Feel free – I have classified a lot of mental health “professionals” as worse than that when I was being shunted from one to the other over 30 years to stop being labelled depressive and finally get to “Bipolar” which got me treatment which worked rather than sending me endlessly manic or suicidal. It is the eternal conundrum – depressed because ill or ill because depressed. In my case complicated by the fact that Bipolars only go to the doctor when suicidal, not when about to climb Everest solo with no oxygen! But….What is your theory?

The theory we were given by Dr Betty Dowsett, who has since moved to the USA where I believe she heads the research facility into ME,/CFS is that it is a disease of an affluent society. In a society with far fewer infantile deaths, those who survive serious illness may be ‘predisposed’ in some way to catch ME. I had rheumatic fever when I was 5, and my husband, who caught ME when he was ill and deeply depressed over my father’s death [they were very close] was a sickly child. Dr Dowsett said that a physical or mental strain could increase the chances of the virus becoming a danger to those predisposed, such as childbirth or grief. She also said that catching it from a spouse is very likely if the conditions of predisposition are met, and she knew of several cases. Our own doctor had been unwilling to believe , saying that lightning never strikes twice in the same place’ which shows how much the ignorant fool knew about lightning.

I am fascinated because I can see elements in my own life that fit perfectly. I was a very sickly child, only survivor of twins and prone to illness a lot of my life. Losing my own father at four years old is a given as one of my Bipolar triggers and… oh yes this all sounds familiar.

I write Regency romance novels [as well as my mystery books] and grew up on the works of Georgette Heyer and came later to Jane Austen – this is relevant – and one of the tropes of the genre is the languishing lady. The lady who ‘enjoys’ ill health and spends most of her time on a day bed, often in a darkened room complaining of megrims [migraines] surrounded by patent nostrums, unable to bear loud noises or draughts, or the presence[if she has them] of her infant children for long periods. Now this rings several very loud bells for me; I wanted to spend time with my son but could not cope for long. My wonderful mother raised him for me.

Sorry, had to stop to wipe my eyes there. She died this February.

Don’t be sorry, the way we all get treated is enough to make anyone cry. I have done so myself many times and I agree – Badger has had to be a saint too. Anyone living with a partner with this is up for a halo. I am horribly sensitive to minor noise – I suffer Mysophonia which is hell for people around me.

Anyway, to return to the point I’m trying to make: the languishing ladies are, in this genre, from a higher social class than most which is almost an emulation of an affluent society. And it occurred to me that if you weren’t actually ill, is there anything more boring than lying around all day, even Vanities andfor the sake of attention seeking? Because I don’t think there is. So I cite Anne de Bourgh whose appearance in Pride and Prejudice is rather a cameo [Lizzie describes her as ill and cross-looking] whom I have postulated as having had rheumatic fever when I put her into ‘Vanities and Vexations’, a P&P sequel. Also I have wondered about Marianne Dashwood in Sense and Sensibility, though in the balance of probabilities I would say her illness is probably depression,and she was ill because she was depressed, not depressed because she’s ill. [and Fitzwilliam Darcy is plainly a high functioning Aspergic, but that’s another story]. In Heyer the re are two that stand out. First Mrs Lucretia Dauntry in ‘Frederica’, whose illness is suspect as she’s capable of putting herself together if she really wants something. This might be because she really does want to be more interesting, or might be the ability we with ME have of doing stuff on pure adrenaline and then crashing later. Secondly is Selina Wendover, from ‘Black Sheep’. Selina uses her illnesses ruthlessly as moral blackmail, making her a most unattractive character in the way she manipulates those who love her, again is able to sally out if she really wants something, but she does catch things easily, and a depressed immune system can be a symptom of ME [which is why I hate going to the doctor’s surgery aka Germ City, or on a bus.] She certainly gets depressed easily, and has the disagreeable sorts of moods that could indicate depression as well. She is easily bullied by her brother, and a low resistance to forceful personalities is a feature.

I think one of the features I pick up on is if the possible hypochondriac shoos people away because their chatter tires them. This is a fairly good indication of genuine illness. In fact chatter doesn’t just tire, it can become meaningless noise as the brain trips out and refuses to process any more information. In the same way the brain can trip out and refuse to produce meaningful words. It’s called Aphasia and it’s one of the more irritating aspects of the &@$£&***!!! disease.

Sorry, did I shock the dog? Cats are unshockable.

YES! I find background chatter (radio / TV) goes to white noise and makes me deaf). Don’t worry, Lily the small but feisty terrier lives with a retired naval officer and a grumpy witch – say no more!

I have been taking a special complex of B vitamins – I think it’s 3, 5, and 6 – for memory loss, which is the other thing that drives me up the pole, and touch wood, I am noticing a difference.

Interesting – I have recently started on Vit B complex and Maca which seem to be helping too!

Let”s stop for today and come back tomorrow to carry on. I need more tea and we can go for a gentle stroll around the village to clear our heads, I find that helps sometimes. COME BACK TOMORROW TO CONTINUE …..

LINKS:

Sarah Waldock’s books

Sarah’s Facebook Page

Website


8 thoughts on “CFS the Medical Orphan (Part 1)

  1. Thanks for this. I had every throat condition under the sun from age 14 to 17 and got physically and emotionally really low. When I began collapsing at home and work at 18 they began to look into it. Finally at 19 I was diagnosed with ME/CFS. (Before diagnosis they put me on strong antidepressants thinking I wasn’t really illl). I was shattered, for a decade, and struggled as a new wife and mother. Hubby was so good, but he had no idea he’d married an anxious, panicked, depressive and CFS sufferer. I had to give up work just after we got married due to constant collapsing and panic attacks. It was tough for many years. I was really lucky that in my mid twenties during my second pregnancy my CFS went into remission.
    Since then, I know it’s there, another thing that will never go away, but I know how to recognise even the slightest relapse and I can chase it away. For me, it’s more about knowing how to live with it, knowing your limits and acting accordingly.

    1. Absolutely, Lisa and how encouraging. We do learn to live and cope. It won’t go away completely but we can play tag with it. Getting rid of the guilt was the hardest for me, being one who likes to be “doing”.

  2. Thank you for this wonderful post. Both my wife and I suffer from CFS, Fibromyalgia and Borderline Personality Disorder which is a fancy new word for Manic Depression. I have Functional Neurological Disorder, Dyspraxia. The latter two I have had since birth, apparently. It means that my brain doesn`t send or receive the correct signals from nerves, the dyspraxia means that I can`t tell right from left, am clumsy and think in a different way from people who don`t have this condition. I see in patterns and hear in tones and chants, don`t know if that makes sense. We both had illnesses as children and my daughter had a terrible fever and illness when she was two and since she was 12 has been epileptic. Do I think they are all connected, oh, yes.

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