So, I thought I’d should give a progress report. I am better, but life is still challenging and unfortunately for me it’s painful the majority of the time.
I thought the best way to show you a glimpse into my life would be to write about a typical day. I wake up at 7.30, have breakfast and then get onto dialysis just before 8. When its not painful I can be off dialysis and clearing up at about 8.30. When its painful, its a very slow drain and takes me up to an hour. The pain is due to endometriosis in my peritoneum, which is where the dialysis fluid cleans my blood. When I drain I feel like it starts to rip at my insides. The only way I can get through it is to burn myself with a hot water bottle. I think my stomach is now permanently scarred.
After the first dialysis is finished I go and have a shower. I have a dressing where the tube comes out of my stomach. If this gets wet at any time you have to take down the dressing, clean the area and then redress it. Changing the dressing takes me about another 20 minutes or so. So, by the time I am dressed its about 9.30. I have three hours now before the next dialysis. If I’m well I get on the computer and so some photoshop work, After the lunch time dialysis, I make a kidney friendly lunch and then pretty much have to sit down, I normally have a nap at this point, as I just can’t stay awake.
I do some more work (if I’m well enough) or a couple of times a week my Mum and Dad come and get me just to get me out. At 5 I get back on dialysis. Once that is finished I have my evening and I try and get out for a walk with Darren. I’ve found that some walking each day helps me with the pain. At about 10 I do my last dialysis of the day and then fall into bed.
If the dialysis isn’t painful its a gruelling part of my life, but its manageable. But if its painful my days are awful and some days I don’t know if I’ve got the strength to do it. Invariably though I somehow keep finding that strength, and I move through it. In a months time I would have been waiting for a transplant for three years. To not be tethered to dialysis just to keep me alive, well as you can see that would just be life changing.
On a photography note, I am still practising with my camera and my nieces are guinea pigs, luckily for me. Here are a couple of pictures I’ve taken recently, next mini shoot is with Kara… not that she knows it yet.