Wednesday, 25 May 2011

Deliver A Letter, The Sooner The Better.

Still waiting for that all important letter from the hospital to give me a date for my Hickman line insertion. I'm getting a bit desperate now. Last night Peter had to carry me upstairs to bed as I couldn't make the stairs even on my bottom. We had a bit of a joke that the last time he did this was when I was plastered but it was still depressing. I have to admit I getting more down and frustrated everyday, even the simplest things are so difficult now and taking my inhaled Iloprost leaves me feeling so drained I have to lie down for half an hour afterwards. It's not right and I've been having a little 'why me' moment today. I regularly rage against God, fate and anything else I think I can blame. It doesn't achieve anything but it does get things off my chest every so often and according to my counsellor that is a good and healthy thing to do. From my point of view it is better than taking everything out on my family. I think my downer must be due in part to the fact that I didn't sleep well last night. I kept waking, gasping for breath and in the end propped myself upright to make things easier. I can't usually sleep sitting up but I must have been really, really tired because I woke at about eight with a tremendous crick in my neck. I've spent the entire day bent over like the hunchback of Notre Dame, so to add to everything else I need a massage to free up my stiff neck and shoulders. Grrr..it's just one of those days.

I'm waiting for news on so many things at the moment. There's the obvious hospital appointment, the DLA claim, which seems to have got lost in the midst of time even though the website says it is still 'processing' and of course my application for Olympic tickets. I check my bank account every few days but nothing yet. Thought I was in luck when I got an e-mail from them this morning but it was only to let me know that they would let me know if I was successful.

Decided to make a better effort at doing my relaxation sessions so with one son in work, another in the kitchen studying for the exam he has tomorrow and the husband in the shed tinkering with something mechanical I wandered up to the bedroom to find bits of computer strewn all over the bed. Undeterred I decided to nip into one of my son's rooms instead, lay on the bed, made my self comfortable and gazed lovingly at my hands which I then clasped to my chest and I did begin to drift, I really did and then this little voice arrived in the back of my head saying 'what shall I cook for lunch tomorrow? Curry maybe?' Before I knew it I was lying there making a list of all the things I've got to do over the next few days. Obviously not what intense relaxation was meant for so I shut the voice up and tried again, this time I was more successful but still didn't achieve the deeply relaxed state I'd been in during my session at the hospital. I might have another go later when the bedroom no longer resembles a computer repair shop.

Bit the bullet today and have hopefully solved the problem of carrying my syringe pump around with me after I get the line. There is site called Joey pouch (the link is on the side of the page) which belongs to a young man who has had a Hickman line for ten years now. He designs bags for all sorts of different medical aids and at very reasonable prices.I've chosen a plain black bag for when I'm at work and a more colourful version for when I'm at home or out and about. I started reading his blog when I found out I was having the line and found his experiences have helped put my mind at rest. It is well worth a read even if you don't have PH as he is truly inspirational.

Car goes in for it's MOT tomorrow, always a worrying time. We always get the MOT done about a month before it is actually due to give us time to get things sorted if it fails. It has never failed yet but it is six years old now so I'm expecting something to have gone, we will just have to see how it goes. Of course, due to my health my husband is going to have to do the honours for me while I wait at home and worry. Will let you know how it goes tomorrow.