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

24601

I can't believe it's been 2 weeks since i've written my blog..... sorry blogsphere. But to be honest not much has happened. New Year came and went and now we're back to work work work, and what seems to be recovering from working. My cold seems to be hanging on in there, and i've been very generous in sharing it around with Mum & Joss now having it.

I did make some New Years resloutions, need to lose a bit of weight, and want to increase the amount of exercise I do. It's hard with PH because my exercise ability is severly impaired. But I think a bit of Wii fit in the winter & a few light walks in the summer should help my health. My other New Years resolution is to do loads of fun things this year. Not sure what but thinking more theatre / films & music.

Granny is still unable to go home due to flood waters, but they are going down.

This times blog is going to be a bit of a film review I feel. I have watched quite a few films over the last couple of weeks as it's the one thing this disease has given me, guilt free film watching time!

Films recently watched have included Tinker, Tailer, soilder, spy which I think I lost somewhere but Joss enjoyed it. Horrible bosses which I enjoyed and was quite a good black comedy, and has Kevin Spacey & Colin Farrel in it so how could it go wrong. Moneyball was good too, Brad Pitt gave a good performance I was quite suprised how much I enjoyed it as it's quite sports oriantated.

The suprise film that I enjoyed this week was Rise of the planet of the apes, I thought it was going to be all fighting apes and action, but it was suprisingly good and it was easy to see where the Ape revolution that leads to the Planet of the Apes came from.

Now did someone mention revolution??? I've just  got back from seeing the best film i've seen in a long time, Les Miserable. It was incredible and had both Mum & Natalie in tears (oh ok maybe I shed a few little tears!!). It was such a powerful film and totally did justice to the theatre version which I saw 18 months ago (and was slightly spoilt in seeing Alfie Boe play Jean Valjean). Ok the singing isn't the same as the powerful singing you get in the theatre but Hugh Jackman was great. I felt all the female singers were compltley blown out of the water as soon as Samantha Barks as Eponine started singing, Eponine is my favourite character in the show. Not sure the character of Thenardier was quite right, but then when we saw it in the west end Matt Lucas played the part to perfection. It was really good to see Colm Wilkinson in the film too, boy can that man sing. For those of you who don't know Les Mis history Colm played Jean Valjean in the original West End production. I'm so glad Cameron Makintosh produced the film, just don't think it would have done any justice to Les Mis without him. I can't recomend going to see Les Mis enough. Although I do think eveyone should also see the West End version.

It did make me think though what do we do when we're unhappy? we moan. Maybe we should be we need to take a leaf out of the books of the french revolutionaries and do more. So in that vein I feel the first revolution should be a move towards an opt-out system for organ donation. I believe everyone should have the right to chose not to be a donor if they feel strongly about. However I feel many people aren't on the organ donor register just because they never get round to it. It's also important you tell your loved ones what your wishes are. And before anyone asks yes I am on the organ donor register and was before I was diagnosed with PH, although not sure which parts of me would be any good. http://epetitions.direct.gov.uk/petitions/38220   is the link to the e-petition if you want to add your name to the list.

I've got Evita to watch this week sometime. I promised a friend i'd watch it so I really must get round to watching it. Not sure why I can't seem to get motivated to watch it as I like a good musical.

Well must go Blogsphere, I have another darts final to watch, it's the BDO final between Tony O'Shea & Scottie 2 hottie waites. Although BDO just isn't PDC........ oh no i've become a darts snob..... xxx