I’ve been busy. I’ve been very busy. Although it may not seem like it, even to me, I’m doing a lot for someone at this point in recovery. And that’s the crucial point!
It’s easy to think, over eight months on from my transplant, in remission, looking and sounding well, that I am completely back to normal. I’m not!
When people ask me how I am, I say I’m doing well and that’s true. Sometimes I say that I still get tired and my mouth is still sore. And that’s how it is. But when I say it, I often feel like I’m making a point. I suppose I am!
I think it’s difficult for people, other people and me too, to keep getting it, to keep getting that although the procedure is over, the treatment as such is over, IT isn’t over and won’t be for quite some time. When I say I’m tired, some people, understandably, ask why. This is my answer.
The recovery period for an allogeneic stem cell transplant is given as six to twelve months. So, I’m well over halfway through and could be considered to be pretty much recovered. I’m not!
I spoke to my consultant on Thursday about feeling so tired. She said that although they say six to twelve months, she frequently has patients come in around twelve months post-transplant and tell her how much better they’re feeling… then at the two year mark, they often say “you know what I said last year…? Well, I didn’t realise it, but I wasn’t really better then. NOW I feel better!”
When Dr Jenny said this, it felt so reassuring, so validating and I’m writing this update as much as anything else, to remind myself when I forget. That’s what I’ve been doing – forgetting, thinking that maybe I’m being lazy, beating myself up for not jumping out of bed at 7 or 8 or even 9 o’clock in the morning, feeling guilty, feeling anxious about all the things I’m not doing, thinking that I’m depressed. I’m not!
I’ve been busy and feeling enthused about various activities… so busy in fact that I haven’t had the time and mental energy to write up everything I want to write about. That isn’t the behaviour of a depressed person. It certainly isn’t the behaviour of a depressed Jet.
To give you an idea…
On Mondays I go to Tai Chi for just over an hour in the afternoon, pretty much every week, unless I’m really really tired or I’m busy doing something else. For example, last week I was asked, as a volunteer, to co-deliver a talk/presentation about volunteering to a group of ESOL [English as a Second or Other Language] students at Derby College. It was great fun and went really well and if you’d seen me doing it, you’d probably have thought I was energy personified. I was! But it was tiring. I could only flop on the couch when I got home. Fortunately my friend cooked dinner.
On Tuesdays, I go to Derby for another volunteering role, as a community reporter/blogger/video editor with Citizens’ Eye Derby. It’s like a proper job – I’m there most of the day and come home feeling weary. But for the last three weeks, I’ve also dashed out again for the Lo-Fi Film Club, a class in amateur film-making at my local independent cinema. You can imagine how tired I feel at the end of those days.
Generally, on Wednesdays, I have a day off, often staying in bed till around 11 o’clock, maybe going for a walk, but otherwise just taking it easy.
Thursdays has, until recently, been clinic day. The most recent good news is that now I only need to go every four weeks. So that might give me another day to be busy… or another day to rest. I wonder which way the pendulum will swing?
Friday morning is my other Tai Chi class, also for just over an hour. I frequently don’t want to get out of bed, but I almost invariably do and am always glad that I did when I leave the class feeling gently exercised, warmed up, socialised, calm and content.
I have just been trained as a presenter for Anthony Nolan’s R&Be [Register & Be a Lifesaver] programme, where I will be going into schools and colleges to raise awareness and educate young people about stem cell, organ and blood donation. I need to write up my personal version of the presentation before I can be let loose, but I need to find time “when I have the energy” to complete it.
I want to and I will, at some point, write about all the above volunteering activities, “when I have the energy”. This is my new, completely genuine, get-out clause. It’s sometimes a physical tiredness, but more often, mental tiredness. I intend to write more about this. Watch this space…
I’ve not even mentioned my social life, or the normal day-to-day tasks that most of us do to just keep our little worlds in order, like shopping, cleaning, cooking, paperwork, etc. I have to pick and choose where I expend my energy, who I want to spend time with and where to fit it in with everything. I suppose that’s not much different to anyone else, except I just have less energy to play with and need more time to rest in between.
In the acting world, there are often periods with no acting work, when actors find other work to keep them housed and fed. They call it ‘resting’. It doesn’t mean they aren’t doing anything, they just aren’t doing their real work. Yesterday, I went to see a play with a young actor friend. It was a matinee – I really can’t do much at all in the evening. It was time spent most enjoyably, in great company, relaxed, not working, but nonetheless tiring. When I came home, I was worn out. I went to bed around 9pm and didn’t wake up till almost 9am this morning. So, even when I’m officially ‘resting’, it doesn’t mean I’m not doing anything and more importantly to note, it doesn’t mean I’m not getting tired.
I am learning to pace myself, which means sometimes saying no to an activity. I am not lazy, nor idle. In fact some would say, it might be better if I allowed myself to be idle. It’s not in my nature, it feels uncomfortable. But I need to remind myself that the lethargy and inertia I feel has a genuine cause and requires respect.
With a sense of time running out, I all too often see how little I’m accomplishing, compared to what I want to do. How much of my blog gets written in my head and how little online. How many ideas I have about things I want to do, whether for myself, other people or the greater good… That ‘busy’ mentality is so well-embedded.
So, I was delighted to see and immediately recognised the truth in this reminder recently posted on Facebook… I’m re-posting it for all my myeloma, leukaemia and lymphoma buddies… Oh to hell with it, I’ll post it for everyone I know and care about.
So when people ask me how I am and I say I’m tired, this is why. I’m still recovering from a stem cell transplant. Yes, still! The procedure was over in a few minutes, the time in hospital was very brief, the post-transplant treatment (immune suppressants, nebuliser, etc.) has been over for some months, but what’s going on inside me isn’t over. It won’t be over for quite some time. This is and will continue to be my reality for the next year or more, gradually and slowly recuperating and gaining energy and strength. Please remind me when I forget and wonder why I feel so tired.
And thank you to my dear friends who already do remind me. I will endeavour to listen to you better from now on. x
