I’m fine, how are you?

Tonight is census night in Ireland when an estimated 2 million census forms – one for every household in the country – will be filled in. Two new questions have been added to this year’s form from the previous census carried out in 2006. One of the new questions deals with how healthy you feel you are. Most of the questions are multiple choice and in the section on health, you are asked “How is your health in general?” with an option of five boxes to tick, ranging from… very good to very bad. This question poses a dilemma for me…

I was out to dinner with a group of friends last night and during the evening, the topic of the census form came up. When I mentioned that we would all be faced with a new question about our health, one of my closest friends leaned over and said, “Steph, I hope you tell them how bad your health really is”. I was quite taken aback by this remark as despite living with a chronic illness and being an ‘expert by experience’ patient, I’ve never really thought of myself as having bad health. I’ve always regarded episodes of illness/injury simply as obstacles to be overcome so that ‘normal’ life can be resumed. Admittedly, I’ve had rather a lot of so-called “episodes” but even so, it’s still come as a bit of a shock to realize that others may regard my health as being bad.

Over the years, whenever someone has asked me how I am, I much prefer to reply that “I’m fine” rather than have to watch their eyes glaze over with boredom while I detail my latest woe. Those who want to hear more, will usually dig a bit deeper for it and then I’m perfectly happy to oblige. After last night’s conversation, I’m now wondering… am I right to be so positive about my health or am I actually in denial?

I came across this rhyme recently and loved it so much, I want to share it with you today…

There’s nothing the matter with me,
I’m just as healthy as can be.
I have arthritis in both knees,
And when I talk, I talk with a wheeze.
My pulse is weak, my blood is thin,
But I’m awfully well for the shape I’m in.

All my teeth have had to come out,
And my diet I hate to think about.
I’m overweight and I can’t get thin,
But I’m awfully well for the shape I’m in.

Sleep is denied me night after night,
But every morning I find I’m all right.
My memory’s failing, my head’s in a spin,
But I’m awfully well for the shape I’m in.

Old age is golden I’ve heard it said,
But sometimes I wonder, as I go to bed.
With my ears in a drawer, my teeth in a cup,
And my glasses on a shelf, until I get up.
And when sleep dims my eyes, I say to myself,
Is there anything else I should lay on the shelf?

The reason I know my youth has been spent,
Is my ‘get-up and go’ has got-up and went!
But really I don’t mind when I think with a grin,
Of all the grand places my get-up has been.

I get up each morning and dust off my wits,
Pick up the paper and read the ‘obits’.
If my name is missing, I know I’m not dead,
So I eat a good breakfast and go back to bed.

The moral of this as the tale unfolds,
Is that for you and me, who are growing old.
It is better to say “I’m fine” with a grin,
Than to let people know the shape we are in.

(Source unknown)

Moving the goalposts

As we await the mother-of-all budgets to be announced in early December, I had hoped to be able to bring you a good news story this week but sadly, that’s not to be. Having enjoyed a summer free of infection in my head, it seems that the holiday is now well and truly over. I’m back on the treadmill of chronic infection once again.

Within 2 days of finishing the antibiotic after the recent acute infection, the congestion in my nasopharynx began to recur and a foul discharge seeped into the back of my throat. I requested an urgent appointment with my surgeon and was seen in his hospital clinic last week. Following a nasal endoscopic examination, the surgeon was able to identify the cause of my symptoms. While my forehead remains completely free of infection, pus could be seen dripping from my sphenoid sinuses. A swab was taken for analysis (culture and sensitivity) and an air of despondency descended on the room.

My surgeon confirmed what I already knew which is that the donor site (one side of nasal septum) used for the graft procedure last February, has still not fully healed. This failure to heal is more of a nuisance than a cause for concern. The infection in my sphenoid sinuses is a new development and is definitely a cause for concern as these sinuses are near the middle of the skull and are the most inaccessible of all the paranasal sinuses. They are also bordered by more vital structures than any other sinus.

While recovering from the surgery in Nottingham earlier this year, I developed severe headaches which were different to anything I’d experienced before. The pain was deep behind my right eye and radiated into the top of my skull and to behind my right ear. I was sent for a precautionary MRI brain scan which came back as normal so a ‘wait and see’ approach was adopted. The headaches gradually petered out over the summer months only to return with a vengeance when I developed the recent acute infection. In hindsight, I now realise that those headaches were classic symptoms of sphenoid sinusitis which subsequently developed into an acute bacterial infection.

The surgeon is now of the opinion that the radically altered internal anatomy of my head, has left my sphenoid sinuses more prone to infection. As the normal drainage channels in my head have been surgically removed, the ostium (opening) of the sphenoid sinuses is now exposed to a greater risk of bacterial infection. I could hardly believe what I was hearing.

I left the consultation armed with a prescription for further antibiotics for when needed. My normal ‘glass half-full’ self seems to have deserted me while I try to digest this bombshell news. All I can tell you is that if feels like the goalposts have just been moved again.

Marching On

Some people go off food when they’re unwell, others take to their beds. I think I’ve discovered a new phenomenon which has yet to be documented in any medical journal. Whenever I succumb to an infection in my head, I lose all appetite for blogging. To understand this, you have to realise that the blogsphere represents the outside world, a world which crumples at my feet each time illness strikes. The battle of the bugs continues…

St. Valentine’s Day marked the beginning of this particular episode. I woke with a severe headache and as the day wore on, pain and pressure started to build behind my right eye. My GP prescribed a tetracycline antibiotic, Doxycycline which has been the stalwart of my treatment in recent years. My symptoms subsided but a week later, my right eye began to close over with swelling and the pain and pressure returned in my head. On account of my previous history, I was seen urgently by a specialist. A swab ruled out MRSA but this new resistance to Doxycycline, was a definite cause for concern. I was started on a cephalosporin antibiotic, Keftid which seemed to work well so after two weeks the dose was reduced with the plan that I would continue on it long term to break the cycle of chronic infection. That plan fell apart when another bacterial superinfection took hold last week. The headaches gradually returned and my life ground to a halt once more. This time my GP prescribed a different cephalosporin antibiotic, Suprax which I’m happy to report, appears to be taking hold. The headaches have eased and so has the sense of despondency which accompanied them. Where to from here?  Who knows but for today anyhow,  I’m happy to have had my world open up again. On I march.

While on the subject of  nasty bugs, one of my regular readers kindly sent me details of a worrying outbreak of the Norovirus (Winter Vominting Bug) in Limerick. This highly infectious virus is usually found in our hospitals and can be potentially dangerous in the very young or old. The outbreak occurred on a college campus which has been temporarily closed while infection control measures are implemented by the HSE. See press release.

It seems that healthcare associated infections (HCAIs) are no longer confined to hospitals. The bugs are marching on.

Exceptional Qualities

Chronic illnesses usually are viewed negatively, particularly in relation to employment. Society makes a sharp distinction between being sick and not being sick. The general image of health and sickness has resulted in sick people being negatively labelled. It’s important for employers to realise that people with chronic health problems have unique qualities and additional talents to offer. This inner strength can be a great asset to society if only it could be properly recognised.

I recently came across a report on the exceptional qualities of people with chronic illnesses produced by a patient’s organisation in the Netherlands. It describes people with chronic illness as:

* being good at crisis intervention

* having stamina and persistence

* being good organisers

* being good at personal energy policy and setting priorities

* being good at time management

* having the strength and willingness to shift boundaries

* being more patient and tolerant

* having a strong sense of responsibility toward society.

Most employers would jump at the chance to recruit someone with the above qualities, however they may be worried that people with chronic conditions will always be “off sick”. The reverse is often the case. Chronically ill people know their responsibilities and can set clear boundaries for themselves. People who face adversity on an on-going basis become remarkably adept at finding solutions. They have the potential to become valuable employees whereby the advantages outweigh, if not surpass, the disadvantages. The biggest difficulty faced by many people however is finding a way to convince potential employers to consider employing someone who represents a risk.

Are you an employer who’s willing to take risks? If so, I can be contacted at biopsyreport@gmail.com

I’m ready when you are! 🙂