painful.........

Hi Blogsphere,

Well what a week it's been full of snow. I really don't cope well with snow, it makes breathing really hard when I'm outside and I spent the week when I was outside shuffling along like a little old lady.

It was really pretty though, I just wish i'd been able to get out and about with my camera.

It's rather quiet in the Pegram household today, Mr P is suffering after a night out with the boys...... 3am he staggered in this morning.

As the title of todays blog suggests today is a painful day, and i'm feeling a little fragileafter taking coedine to get rid of the pain. For those of you who don't the cause of my pain is this:

 

 



This is my pump which is attached to me 24/7. the round plastic bit attaches to a clip on my skin on my stomach. Getting used to this little machine takes a while as you would imagine. I usually carry the pump in my pocket as the tubing is long enough. But if I want to wear a dress or skirt then I wear my Joey pouch. Joey pouch was the invention of a fellow PH sufferer, it's a pouch that attaches to an elastic wasteband. It is an invention that has made wearing the pump so much better. Living with my pump day to day has made life interesting. You get in to a rountine of where you put it when you're in the shower, where to put it in the bed when asleep. I often wake up with the pump twisted around me where i've tossed and turned in the night. I've had a fair few incidents of dropping the pump, or pulling the line out of my stomach (yes it is an ouch moment!!!). I often wonder if people really appreciate what it's like having a machine attached to you all the time. It's like having an extra limb which doesn't move on it's own. Some days it always seems to be in the way.

Anyway about once a month I have to change where the site goes into my stomach. This causes a great deal of pain for a couple of days. It sort of feels like someones stabbed you (not that i've ever been stabbed) and the knifes still in moving about, and then to add to the joy someone is pooring acid into the knife wound.......... yes it is that bad. Most of the time I out on a brave face and try and deal with it, but sometimes it breaks me, and I just end up feeling sorry for myself. I'm a lucky one though as my pain only lasts a few days, some people who've had this type of pump and medication get constant pain. Due to licensing issues they no longer offer this medication to new PH patients, and now everyone who needs constant medication have to have a hickman line, which is a line which goes straight into the heart, and the medication needs to be mixed every 12 hours. My medication only needs replacing every 48 hours.

At a later date i'll do a post of how the pump works when I have to put new medication in.

You are all probably thinking I must hate my pump, but I don't, it's like any relationship we have our ups and downs, but at the end of the day I love it........ and the reason for this is without it quite simply I wouldn't be alive.

Have a good week blogsphere, thank you for reading xxxx

And to my lovely husband, Sister, parents & friends, you're love and support gets me through the painful days xxx