We have always been honest, you and I, warts and all. And so I find myself unable to return to this blog without being straight. This blog for me is a place to order my thoughts, so I hope you will indulge me. I look over old posts and see they have dwindled, and I read of my ridiculous bravado about being so tired. As an ex-academic, it is not so much a badge of honour, but rather proof you are just pulling your weight. I have also hinted my health has not been so good, but have been vague, I’ve lost a large amount of weight, blood pressure is stupid, lots of tests followed, GP saying don’t worry, we’ll just be sure, it’ll blow over. And you believe them, as I did when at my final appointment in November they said I had the all clear, no idea about the tiredness, but my thyroid was ok. The abnormal liver tests, just a blip, the anomaly in the ultrasound, nothing to worry about.
I was glad it was all over, even when you think there is nothing wrong, just having tests makes you think there might be. As you know I delayed my fellowship plans and now I had the all clear I brushed myself down and finalised the itinerary which was long overdue for submitting to the wonderful folks at the Winston Churchill Memorial Trust. I would still have a sleep midday, if I got up at all, and was generally clock watching from teatime to see if it was too early to hit the sack, but the tiredness had to be in my head, nothing was wrong, I just needed to pull myself together. My itinerary was approved, and I was really going. But early December I came out of a meeting to find a few missed calls from my GP. It turns out some blood tests had only just been completed and were showing some antibodies – it was all out of his sphere of knowledge, he couldn’t tell me anything, but I would have to be referred to a liver specialist.
When he told me what the antibodies were though, I already knew what was going on. I am an intelligent and curious girl, as soon as there were hints there was something up with my liver, I of course did what everyone would do and went through all the possible diseases to see what my google and House trained eye could spot. I managed to convince myself I had PBC or Primary Biliary Cholongitis, an autoimmune disease that destroys the bile ducts in the liver, the backed-up bile causing cirrhosis and eventually liver failure for some. One of its main manifestations was chronic fatigue. When the GP told me I was clear for it in November, I was actually surprised. But also, obviously, relieved. The fatigue for some becomes so great, many are forced to give up work. That wasn’t going to happen to me. I’ve just found my place in the world, stopping isn’t an option now or anywhere in the near future. There is no cure for PBC, but a drug could slow the progress in some, but not all, and I didn’t like the odds. Besides I’m me, I’m not someone who has a chronic illness, this is not the future I envisaged for myself.
But those antibodies, I knew, were the diagnostic clincher for PBC. I was trapped in a period of limbo over Christmas. I knew I had this thing, there was nothing I could do about it. The appointment with the consultant was within weeks of when I wanted to leave, should I still be planning to go, should I be booking accommodation, arranging meetings, should I put it off until later in the year, what if I was too poorly then, what tests and follow ups would I need, could they wait. And it was here my brain would generally liquefy. It has not been a happy time. But I have tried to be practical, if this fatigue is here to stay, what can I do to adapt to it? It is something that will have to be managed. I investigated further other weaving techniques that are slower, less physical. I even joined some PBC support groups – quite a step for a misanthrope! It was here I was advised to see if I could get an earlier appointment with the liver consultant, especially when my appointment got cancelled to swap me from one clinic to another, delaying things further. There was a clinic the day after my birthday, so I rang, and the birthday fairies got me a cancellation appointment. The diagnosis of PBC was confirmed, but travelling was no problem, they could work round my plans. So there I was, newly diagnosed with a rare, stupid and incurable autoimmune disease that was going to do its best to relieve me of one of my organs, but I actually have to say a weight was lifted. I had already gone through the shock, and the tears, and the duvet-hiding, I could now plan, work out what to do. I can take the disease on the chin, but the uncertainty was driving me out of my mind.
I am not thinking too much about the future right now. I have accepted that is no longer something I can control, I may well be fine, I might not. No point worrying about it now, I could get hit by a bus tomorrow. I am not going to give up on weaving, that’s for sure. I’ve not hidden that I’ve had depression in the past and according to the consultant because of the fatigue I am at risk of it again and that is not a road I am going to ever travel down again, so no more bravado, if I am tired I am going to admit it. I will adapt, but I absolutely will keep buggering on, but it may not be at the pace it once was. And I have to really, really mean that.
I have to go off for an MRI just now so will stop. But it is my sincere hope that in my next post I will start the countdown to my fellowship and share some of the details of what it is I will actually be doing and how. This trip has been, I will confess, a source of some anxiety these last couple of months. But one thing I have realised this week, whatever the future holds for me, here with this fellowship is a chance for me to live, and I am not going to miss out on that.
And after all, all things are still possible, one just has to be open to change……..