Stuck in the middle – and I’m wondering what the hell I should do

This week we have another excellent post by guest blogger Martha – you can read her previous post here

Yesterday I had a really good clinic appointment, my team are fantastic but I would never normally describe a hospital visit as great. I am in and out, nothing ever really changes because I am not really that ill. Yesterday was different, I’m going through a tough time and they spent hours with me. My doctor explained things that have never been explained to me before. We looked at my chest x-ray together, he pointed out patches of damage (all I could really concentrate on was the outline of my lopsided breasts).

‘If you were to see these lungs out of context would you be able to tell they were ill?’ I asked. I am of course aware that he is a specialist but he humoured me.

‘Yes and no. I would be able to see there was something not right. But in context [he meant compared to other people in his clinic] they are not bad.’ (Lungs not lopsided boobs, I presumed.)

That’s me summed up really. I live a life of comparison, I am properly sick compared to some and not at all sick compared to others.

I have Cystic Fibrosis. My story with it is strange as I was diagnosed in adulthood while most cases are picked up in very early childhood – I’m talking three weeks old – nowadays. CF is the most common rare disease in the UK. So inside an already rare condition I also have a rare gene mutation, one that is bizarrely more common in Albania (but it is still rare there). Are you getting the gist? I am pretty damn unique.

I nearly started this post with statistics, Cystic Fibrosis is a disease of statistics. One in 25 carry a recessive faulty gene and there are more than 1,700 variations of this faulty gene. I had a whole list of other facts and figures but it was getting beyond complicated, and as I said above some of this is stuff I have only known for 24 hours and I have the fucking thing.

Fact is I am one of the nearly 11,000 people in the UK who live with the disease that causes a build up of mucus on the lungs and pancreas, causing chronic infections and a faulty digestive system. Put basically, there is no basically. No one person is affected the same way as another. At its worst someone will need to spend hours every day doing physiotherapy and take 20 tablets with each meal to aid digestion. At its worst people die.

I was diagnosed with CF just after I finished university, I was in my grubby flat cooking pasta when I got the call. Obviously I had always had the disease. It’s in my DNA and always has been. How did it take them so long to figure out I had this life threatening illness? Well it wasn’t their fault. I have such a rare gene combination that the disease presents itself in an odd way. I was a big kid who was in sports teams; I wasn’t obviously suffering from a chronic lung disease and was far from malnourished. I was actually quite pleased when I got the diagnosis as I finally had a label. I had vague memories of a Blue Peter appeal when I was in primary school where a VT showed children being strapped to tables and essentially beaten up so they could breathe. I couldn’t remember whether they needed stamps or milk bottle tops for that one though.

My partner sees me as ill, but he’s a worrier. My doctor sees me as ill, but he’s paid to. My sister doesn’t see me as ill, unless I am in hospital. Our childhood together wasn’t affected by long stints apart while I was hooked up to IV drips or entering clinical trials. I’m not sure what I see myself as. I think most of the time I forget or go into denial and push myself to do too much then am surprised when I feel rubbish.

My life with the illness at the moment is 6 or 7 tablets daily, as much physio and exercise as I can muster, regular check ups at the hospital, and coughing up about 2 egg cups of gak (not the medical term) a day. My future holds more drugs in store but they aren’t needed yet. They will either be the kind I inhale to make the mucous (the medical term) less sticky, so easier to clear. Or they will be the kind that are currently only in trials – the kind that try and fix the faulty gene in the first place.

I know this is a blog for women’s health and my illness is non-discriminatory when it comes to gender but I do sometimes wonder if it might be harder for girls to deal with, especially younger women. We grow up being told that we are made of sugar and spice and all things nice so how are we expected to cope when all manner of phlegm, shit, and blood start bubbling out of us? No disease is particularly sexy but CF is particularly disgusting, and the only people you might feel comfortable sharing your stories with is another sufferer – only we aren’t allowed to mix for risk of cross contamination. It is an isolating disease.

For me I am isolated from feeling like I can really moan about it because I know compared to 10,000 other sufferers I can’t moan. Only 7 tablets? Pah! Strong enough to go through a pregnancy? Pah! Your lungs have actually improved this year? Pah! Will live to a ripe old age? Fuck off! Who am I to say I have an illness? The NHS roll out red carpets for me and I am treated with the same care as anyone on the lung transplant list while I feel I really should be giving this emergency appointment to the guy who needs last night’s Brown pumped from his stomach.

But speak to a person sans chronic condition… 7 tablets? A day? Poor you! You coughed up blood during pregnancy? How awful! Your lungs were worse than they are now? God have mercy on you! You’ll live to a ripe old age? Well that’s my plan too!

Being in the middle isn’t so bad it is just I am very marmite about everything. Why dislike it when you can hate it? Why like it when there is love in the world? Why be apathetic when you can shout loudly? I don’t sit on the fence for anything (maybe apart from my views on series three of The Affair – I’m just not loving it!) so it feels strange to be caught up in a sort of no man’s land. It’s better than it could be and a whole lot worse than it might have been. How much clearer can I be than that?

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