Tuesday, 15 April 2014

The Difficulty in Asking for Help

Woke up to brilliant sunshine this morning. The trouble with waking to such a bright day is, at this time of year, you think sun equals hot. Being completely fooled I threw open my bedroom window and took a deep breath of crisp freezing air and my lungs immediately puckered and shrank and I had to take my inhaler to sort things out. You'd have thought I'd have learned by now but no, I still get fooled every spring. However instead of feeling down about it I thought next spring I'll be able to do that and my lungs will expand and I'll be able to take another big breath, then another.

My garden at the moment
Yesterday was very much a do nothing day. However I did take an experimental trip into Aldi, they had something on sale that Peter wanted to buy.  I figured that as I was returning to work on Wednesday it was time to really test the waters to work out how much extra help I'm likely to need. I actually managed quite well. It was more or less a walk in and walk out exercise but I managed on my own two feet and without oxygen. It was extremely slow going though and back at the car my heart pounded fit to bust until my breathing calmed down. So, although I can manage a short distance without oxygen, it looks like I'm going to need oxygen for much shorter distances that previously. That's going to make going to the canteen fun. Of course we didn't come out with just what Peter wanted. Along the way we'd acquired a pot of pate, a bag of apples, a bag of mini chocolate eggs and a huge bag of fruit chews. Well I am still trying to gain weight.

Today Peter has to go to Watford so I'm going along for the ride, well I really cannot stay indoors on such a beautiful day, but I will be taking oxygen and my scooter. I can't risk making myself ill for the sake of 'can't be bothered'.

Again this increased reliance on oxygen depressed me a bit but at least I am up and about on my two feet again. Seven days ago I was confined to bed.

This poses a bit of a problem though. I'm going to have to ask my work colleagues to help me a lot more than I've had to previously. I'm not going to be able to push chairs around to set up my work space for instance. I will also have to use the lift going down stairs as well as up as I can't risk a faint. I'll have to ask for help carrying things. And this is the problem, I am very, very bad at asking for extra help at work. I like to think I'm no different to anyone else there, nonsense I know, but it makes me feel better. Now I'm going to have to be different. I know my colleagues will not mind in the slightest. In fact I'm pretty sure most will be glad that I'm finally caving in and letting them look after me but it still feels awkward.

To be fair I am just as bad at asking for help at home. I will struggle with something until either discovered or beaten and then ask for help. If beaten I sit until I'm back to normal and then seek help. If discovered I get shouted at. Of course my deception is known but they've given up trying to stop me trying to do things for myself. They know how frustrated I get so tend to opt for the quieter life and only argue with me if they actually catch me in the act. The worst thing about PH? The loss of independence, at least it is for me.

There is still no word from the Brompton about when I'm likely to be called in for my new meds. First off it was going to be early January. Then Feb/March, then definitely the first two weeks in April and now nothing. To say I'm right royally p***** off with it all now would be an understatement in the extreme. Apart from being very disappointing it is also extremely stressful. I'd hoped to be going back to work with my new meds and my increased dose and feeling so much better. Instead I'm going back in a worse state than when I left and knowing that at some point I'm going to have to take even more time off, either to have the new meds or because I've become too ill to work. It's all so frustrating because non of this is my fault and if I'd been given the meds in January as promised I probably would not have spent the last three weeks at home. That's another thing I hate about PH, the reliance on others to pull their fingers out.

However I have to really look at the positives. I know that one way or another I won't be feeling this bad for much longer. I also know that I now have a better chance of ending my relationship with PH than anytime during the last sixteen months. If things work out perfectly for me I'll bypass the new meds and go straight to getting rid of the PH altogether. What more can a girl want? I think I'm due a little bit of good luck now and maybe 2014 will be the year to deliver after all.

Next blog Friday.