Coming to terms with Pernicious Anaemia

Coming to terms with Pernicious Anaemia

Health problems, when we are young, are temporary states for most of us if we are lucky enough to avoid anything truly serious. But, as we get older, there is always the nagging feeling that we might never get better; what might previously have been thought of as a difficult interlude suddenly becomes a life-threatening and permanent condition. Even if one’s disease is a very gradual process, the realisation that it will never go away can be shocking.

I have had several such realisations: the first was when multiple spontaneous pneumothoraces were diagnosed after decades of semi-collapsed lung problems; the second was being diagnosed with short-cycle bi-polar disorder; the third was the onset of emphysema after 40 years of roll-up tobacco; the fourth was becoming prone to anaphylactic shock requiring me to carry an EpiPen full of adrenaline and now, to make life even more interesting, I have Pernicious Anaemia.

When first diagnosed a few months ago, I was somewhat relieved. At least with a name to the disease there was an explanation for the years of poor sleep, itchy skin, tiredness and depression; perhaps I was not bi-polar at all? It is possible that my (fairly mild) version of manic depression was partly due to fluctuating levels of B12, intrinsic factor, folic acid and iron? It would also explain my more recent inability to concentrate (though giving up smoking will have contributed to that too), severe pains in my knees and shoulders and additional shortness of breath. But, in the last few days, my relief is turning to anger.

I know it is not the fault of any particular doctor, especially when their time is short and their case-loads huge, yet my anger is somehow directed at the medical establishment. It feels as if successive GP’s surgeries have been unhappy with my multiplicity of complaints. I had complained of chest pains for years before the Pneumothoraces were discovered after a severe lung collapse and, after an operation, the surgeon told me he had seen old scars on my lungs indicative of the problem stretching back to my childhood. My depression too was often dismissed as making a fuss about nothing and even in group therapy my accounts of my unusual childhood were simply not believed. And now, when I telephone my GP surgery, I feel I’m detecting some kind of resistance to my requests – I needed to know the results of my x-rays of knees and neck, I requested the schedule for my B12 jabs, I wanted to know when my referral to a dermatologist would be actioned (to check out some lumps that may or may not be B12 or allergy related).

Apparently my x-rays were all negative but it was no-one’s job to tell me (so I was worrying needlessly for weeks); no B12 schedule had been drawn up because I missed a blood test and my previous request to re-schedule was forgotten, the referral from the allergy clinic for a dermatologist was not found and, because I’d also missed (so I’m told) an allergy appointment I have been unregistered from the allergy clinic. Of course, I should not have missed any appointments but, when one is not well, these things happen. I was not signalling a lack of interest in my own health but struggling to keep my business going while being very, very tired some of the time and often in pain.

Luckily I am not naturally a person who stays angry so I tend to shrug my painful shoulders and carry on. My work is physical and can be strenuous. When things get bad (the last few days my knees and neck have kept me lying in bed for most of the time) I can take time off. I usually charge my customers for about 60% of the hours spent on any particular job to ensure they are not paying for my sometimes slower pace and I often wonder if they know that I am re-decorating their house or remodelling their garden on a diet of Ibuprofen, Cetirizine-hydrochloride, Dicloflex and, sometimes, steroids.  

The DHSS doctors say I shouldn’t be working currently but, frankly, I really don’t feel ready to throw in the towel. Paradoxically, when I have been unable to work at all for longish periods of time in the past, it has taken specialist advocates to persuade the powers-that-be that not being able to get out of bed is a disability.

The other factor that I think is often missed by GP’s receptionists is that when fully loaded with pharmaceuticals, strong coffee, bacon sandwiches, Miles Davis (and previously nicotine), one’s general demeanour when arriving at the surgery can be far more buoyant than one’s condition might suggest. And, as all depressives know, getting out and about for an hour or two might require a day or two recovery time. I expect many P.A. sufferers know that too.

So, getting over the anger; at one’s situation as much as at the over-stretched medicos, is for me one the challenges of my new situation. Nevertheless I am eternally grateful to the fabulous NHS staff and doctors who have saved my life on several occasions. So let’s not get these things out of proportion; we might be reliant on drugs for the rest of our lives but, without evidence-based medicine most of us would be dead before our 40th birthdays.  That we are here to grumble and share our woes is a triumph of science and technology and I for one am pleased to be alive. P.A.? Don’t knock it, it’s better than death by far.   

Best wishes all

Nick Nakorn

    

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About Nick Nakorn

This is the blog of a concerned citizen.
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