I spoke too soon yesterday, it turns out that Stoat and Mal are off visiting Nan this weekend so we’re at home today. Which is good because I’ve had a bit of a down swing. Woke up with my lungs feeling very strange, very tired too. I coughed a bit, rested a lot and had some morphine [only 10mls in two days - awesome!] and felt better. I am still taking 120mg morphine tablets though so it isn’t like I’m without painkillers altogether. I see GP again on the 25th so we’ll see if the tablets are reduced too.

Weasel and I decided to head to the grocery store and I rode my bike for the first time since October. I felt very wobbly and vulnerable, but there are cycle paths the entire way, it is flat and I went very slow. I miss riding my bike. There was rarely a day that went by that I didn’t touch it. I used it to go to work, to the gym, to the city centre, the rail station, shops… everywhere. Cycling is the closest you can get to flying without leaving the ground.

I’m on a mailing list with other WG people and two points have been nibbling at me so I’m a bit off mentally.

Point One
When I first joined they were talking about sleep. People said they needed a good 10 hours and I remember thinking that I was lucky, I didn’t need that much. I go to bed around 11 and get up around 8. However, as time went by it slowly changed. I try to go to bed earlier but I rarely mange it, I don’t know why but going to bed always triggers a coughing fit. It takes me ages to get settled. Once I’m asleep though I sleep well [knock on wood]. The thing is, my alarm has slowly moved back, it now goes at 9:10… but I have a very hard time waking up and I usually stay in bed until 9:30 – or 10 as I did today. I need to get up in the morning, I have drugs to take and ear drops to do.

So I cannot be so smug, I apparently need 10 hours and I’d like more. So now that I’ve realised this, I’m going put an extra push into getting to bed earlier. Sleep is the ultimate way to help me feel better anyway.

Point Two
One guy asked what about remission – the term that had been used to describe when the Wegener’s is quiet. He said he thought the term was inaccurate and a number of people replied that it is and they now refer it it as ‘quiet time’ and ‘flares’. So part of me is sort of realising [again] that this is a permanent thing. This is my life from now on. Not things as they currently stand [I hope!!] but dealing with this illness, the pain, watching every cold that shows up… this is my life now. It made me sad. I really loved my life before. I loved the exercise, the freedom, the relationships I had. I’m not ready to say goodbye to all of it yet. What if I never have a good long quiet time? What if I get six months then I’m back here again? Thank god for Weasel and her job, I couldn’t afford to be this ill on my own.

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