Six and a half hours I will never get back!

One hospital visit for a routine appointment and I leave the building six and a half hours later, I like to think it is some great marketing pitch to sell the food in the hospital and boost funds, but I don’t think they are sophisticated enough to plan that far in advance.

I only entered the hospital to find out the results from my latest scan, which were stable in comparison with Last year’s results, but after a mess up with the appointment bookings my 11am appointment become a 12.15 appointment and then the consultant was running 90 minutes late as some idiot had booked all the appointments in for the morning.  The consultant and nurse were very apologetic and it is hard to get annoyed at somebody who had nothing to do with the planning, but it still meant that my whole day involved waiting around.

When I finally saw the consultant, she was concerned as I have a simple burst blood vessel in my eye, but due to the condition, this could mean something serious so I was added to another clinic list. Therefore, after I had bloods taken I then sat for another hour or so to wait to get my simple bloodshot eye checked out. It turned out to be a normal bloodshot eye, which will heal by itself.

I got home exhausted, fed up and a day behind on work. The time it takes to see doctors, visit clinics, and have all the necessary tests can be underestimated and not fully understood by employees. I took work with me to do, but it isn’t possible to get much done sitting on a small plastic chair in a drafty corridor, which doubles as a waiting room.

Having a chronic illness sometimes feels like a full-time job, getting medicines, measuring then out for the week, visiting GP’s, visiting clinics, having tests, going for the regular blood tests, remembering flu jabs and precautionary treatments… agggggggggggghhhhhhhhhhhhhh when can I have time and energy for fun!

As grateful as I am for all the monitoring and support, I would love a six-month period without visiting a hospital, GP surgery or having a needle pushed into the ‘x’ marks the spot on my arm to draw more blood.

I’m happy to lose the six and a half hours if you give me a six and a half month break from visits. 

Stress: oh no, please don’t cause a flare!

This week, we had a sad loss in the family, and it has been very emotional. However, for me there is an extra dimension to the news, how can I manage the stress levels and ensure I do not cause a flare in my disease? A flare is simply a sudden worsening of the symptoms of a disease or condition.

Selfish? Probably.

It is incredibly hard to deal with this situation without sounding very selfish and self-centred. However, I think we need to look at this from a different angle: if the stress of our loss does cause a flare and I end up bed-ridden and needing further treatment, then the added stress for the whole family will double the current levels and that will not help anybody. It is hard for people without a chronic condition to realise that you are not being selfish in this situation because you know that you have to think about how your body will react and you have to hit that realisation head-on and try to prevent it from happening. To some friends, however, you just sound like a paranoid annoying self-centred person, to friends and family who understand, they will support you in this plan, these are people you want in your life, surround yourself with these people.

So how am I trying to cope with this?

Ok, I am not a saint, so immediately I reached for a bottle of beer. Not healthy I know, but it made me feel nothing for a few hours… so it worked perfectly. But I then decided this probably wasn’t going to work (once I had woken up and decided I felt a ‘bit rough’), so this week I have tried to eat lots of veg, take a little time away from work (agreed with my boss) and gone for long walks with George my faithful but crazy Labrador. Currently, I am trying to resist raiding the crisp box, and am trying to eat the healthier Cranberry and Macadamia nuts on my desk. They don’t taste quite as good and salt and vinegar chipsticks, but I know they taste better than hospital food, and therefore at this moment they must be my snack of choice.

I even tried these seaweed things… but I wouldn’t recommend them, the whole packed is now in the dustbin.

Family ‘discussions’

It is a difficult time, and tensions are running high, arguments are natural, but also a risk to my health. I have to be honest, since getting ill 5 years ago, my ‘need’ to be right in all arguments has diminished, and I will now let things just go over my head for the sake of trying to stay calm. It doesn’t always work but sometimes it does allow me to walk away without the instant rise in blood pressure that I can feel pumping through the blood vessels. It is hard to do this, and again I am not perfect at it. However, the selfish option is to let the argument go, if it isn’t critical, walk away and discuss at another time when you are all a little calmer.

Anyway, I am now off for a deserved cup of tea followed by a long walk in the autumnal sunshine. Remember you are a little like a car, if you do not look after yourself, with maintenance and the correct fuel,   then you won’t be able to support anybody else as you will break down, so being selfish is really like being generous to everybody else around you.

Stay healthy.


(and then a day later I gave in and ate a massive bag of salt and vinegar crisps.)