I begin with a side thought. Apropos of very little: the most difficult thing about my day at the moment? Receiving unexpected visitors in the morning. It currently takes me about three hours to build up the energy to get dressed, and the two flights of stairs from our flat to the main door are a bit of an effort too. So when the electricity man rang on the intercom from downstairs, I had to decide whether I was going to trust that he was in fact the electricity man and just let him in remotely, or put on my dressing gown, struggle downstairs and hope that he didn’t think badly of me for still being in my pyjamas at 10am. In the end I went for the latter option. This happens most days, between the postman and other enquiries. If nothing else, I’m hugely thankful for the intercom that sometimes lets me get over this dilemma without having to see anyone. Anyone got any ideas on the problem of whether/how explain “I’m not lazy, just ill” to sporadic visitors who really don’t care either way? And so, moving on to the actual subject of my post...
Waiting. It’s difficult. I’ve been thinking about the waiting thing since Advent, the season of waiting on God. Now we’re in Lent, the season of discerning God’s will, and we’ve moved on at church to talking about decision-making. But I’m still working on how to keep waiting. I keep thinking how much I would appreciate having some difficult decisions to make, or any kind of decisions at all, at the moment.
I’m a workaholic and a highly driven person. Despite being too tired to do anything most of the time, to the point where I’m currently very pleased if I can read a book or focus on a TV programme for any length of time, I’m bored. I miss the stimulation, the people-contact and the sheer stupid fabulous hilarious fun of teaching. I miss my wonderful, exciting students who never fail to make me feel something, whether that’s making me want to laugh hysterically or making me want to throw their mobile phones out of the window. More than that, though, I honestly miss the craziness of trying to balance two voluntary roles with a sixty-hour working week and church attendance and a very occasional social life. It was great. I know I might not be able to live quite that hectic a life again, but I want some of it back.
When I first got ill, I expected it to last a few days. When it carried on, I thought it would last a few weeks, or at most a matter of months – especially when I went into remission and thought things were getting a lot better, and went straight back to my usual ‘crush in as much as you can possibly fit, and then add a few more things’ approach to life. Now... Well, I don’t know what I think now. I suppose I’m waiting for the next period of remission to come along - knowing that it might not for a while. Meanwhile, everything is taking so long, and it feels like I can’t achieve anything yet.
Of course, I’m not just waiting. I’m doing physio, aka battling against severe post-exertional fatigue in an effort to increase my mobility and stay fit. I’m taking medication, aka making myself very ill until I just can’t stand it anymore, in the hope that we’ll eventually hit on something that makes me feel better. I’m learning the art of pacing, aka reducing my activity levels to the point where I feel like I might as well not bother, given how little I can achieve in a day without making myself sicker, in the hope that I will be able to build them up again soon. I'm learning pain management techniques of various sorts, which can be quite a challenge. I'm working on accepting help and support with all kinds of things, despite the huge negative effect that has on my pride and sense of independence. That all takes time. So does waiting for my final approval for incapacity benefit, without which I can’t get approval to do voluntary work, without which I will not be able to test my ability and stamina for getting back to some level of paid work again. (Oh, and having some money to live on would help...) I’m impatient. I want things to move on, and I want to be myself and live my life again.
This month I have mostly been working on acceptance. As you can see from that rant, this comes and goes (I wouldn’t trust it). There are some things I can accept reasonably easily, from the odd looks and questions that come along when I use the wheelchair, to the semi-accusations from family who can’t understand why I haven’t visited them recently. I can accept a more limited range of activity in my life, being cared for by other people, and needing financial and other support on a temporary basis. I cannot accept a life that isn’t worth anything.
I want to get on with getting training and experience towards developing my career. I keep making enquires and getting nowhere, but then I’m probably not pushing hard enough – given how much energy it takes, and how little I have. I want to get on with volunteering, with getting work experience and with offering training to non-profit organisations. Before that can happen, I have to start feeling well enough to make it happen. I have to give medication and treatment time to work. I have to continue pacing myself and learning to cope with things as they are. I have to give the system time to catch up with me, and give me time to catch up with what I want. So… I wait. In the meantime, I want to do something... I’m going round in circles here.
Ideas welcome. In the meantime, I’m off to find some tea and some Migraleve. Then I’m going to start achieving things, even if that only involves taking my dry cleaning to the shop and making a couple of phone calls.
The Girl’s Fibromyalgia awareness walk, currently being referred to in the lovely lovely flat as the Great London Trek for FMS Awareness, is happening on May 11th – the day before International Fibromyalgia Awareness Day on the 12th. I’m going to start walking on the official blog for it soon, I am, I am. I just keep forgetting everything I need to do for it... :S