Resting

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.

pendulumThursdays 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.

Glorification of busy

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

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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23 Responses to Resting

  1. MakingSpace says:

    First of all, your explanation of the flow of your days and how it works with your recovery is – this sounds strange I’m sure – really lovely.

    Second, when I saw the quote, I had an actual verbal, out loud response. Though I am almost excruciatingly healthy myownself, I have found that glorifying busy makes me a madwoman. And not in a fun, Shakespearean way. I just pick at myself and turn into a huge self critic. I SOOOOO needed this post and that quote today. I thank you for sharing all of it.

    Like

    • Jet Black says:

      So glad to have hit your nail right on the head. If only I’d known that’s what you needed. LOL!
      Thank you so much for your “first of all” comment. It helps me see my days in a different way, a lovely way.

      Like

  2. Simon Hancox says:

    Great blog Jet, very open, honest and enlightening. Much love xx

    Like

  3. You are far busier than I am! I’m glad you know that being busy is not necessarily a good thing but it’s what we are brought up to believe and it’s very easy to feel ‘lazy’! Well done for looking after yourself. XX

    Like

  4. Deborah says:

    Thank you for sharing, it really does help x

    Like

    • Jet Black says:

      You’re very welcome. And thank you too. We each have different journeys, but some of the stuff is the same and so helpful to hear others’ ways of dealing with it. Keep writing yourself. x

      Like

  5. mary louise says:

    Stop the glorification of Busy I love this in today’s world it is a reflection of stamina and it can mask so many things. If i continue to learn and relearn anything it is balance in all things is the glorification of life. Thank you for this profound statement. Take good care of yourself

    Like

  6. Kelley says:

    I am exhausted just reading about all you do! My auto-transplant was in 2009 and I’m still tired. Ha. I too try to pick and choose what is important and what makes me happy. Sometimes I do feel guilty, wondering if I should be acomplishing more. But as my Dr says, are you doing what you want to do? For the most part, yes. I believe we all should be more picky w what we choose to do and rest more, mm or not. Thank you for your posts. I so look forward to them.

    Like

  7. Jet Black says:

    Thanks Suzanne. It’s really good to have your affirmation, as you say with MM or not. It’s good to hear you look forward to my posts; I look forward to writing them… and yes, it is one of the (many) things I want to do.

    Like

  8. Rachel Phillips says:

    Being compassionate to your levels of energy does not mean lazy. I have a fear of being seen as lazy so I can relate to your reaction of the word. It would be amazing if we were brought up to respond to what energy we have instead of positively encouraged to push our way through an impossible amount of tasks despite how we feel. Take care and put resting on your essential list of things to be done. x

    Like

  9. Jet Black says:

    Thanks Rachel. Beautifully put! I shall remember that. x

    Like

  10. Rhiannnon says:

    I adore this blog post. And the quote. YES, let’s abandon this obsession with productivity…it’s negative and it completely sidesteps the reality of daily life – which is about creating value in our own unique ways. I needed to read this Jet. Thank you for reminding me that I too am still recovering from a SCT and don’t need to justify my tiredness to anyone, not least myself!

    Like

    • Jet Black says:

      So glad to be of service, Rhiannon. Yes, do please take it easy. My consultant reckons that people may be back to something like normal after two years. For some the fatigue doesn’t really go away. The justifications to self are the hardest, aren’t they? x

      Like

  11. We all have these hidden agreements, although slightly different for each of us, that we have some obligation to be Something More. Perhaps someone told us as a child we should never be idle, or ‘don’t waste time’ or ‘make something of yourself.’ And we carry around guilt and shame that we aren’t somehow fulfilling some purpose – even as yet unknown as it might be – and try to keep busy… but the Truth is this: it is sufficient that You Are. There is no allotted space with a time limit that will issue you a late charge or a waste charge if you do not ‘do something’ with that space/time/life. It is enough to simply be Who you Are. I am. I am loving and living and I am not taking up space because in someone else’s opinion I should be doing something more.

    Thanks for just being, Jet.

    Like

  12. Mavis says:

    Dear Jet,

    I do so understand what you are saying, if for different reasons from you. I haven’t had a difficult SCT, for which I marvel at you, but I am four months into remission following CDT. In spite of still having back problems, I expect to be able to rush around doing what I did before MM! Thankfully, I am able to do so much more, and begin to feel like a “normal” Mavis again, BUT, I do need to remind myself that I’m not totally “normal” anymore – I do have this MM beast to carry around and it never completely goes away and it does drain energy, physically and emotionally.

    I know that you, like me, are so glad for what you can do, including new challenges, but we do need to remind ourselves of the new reality for us. Thank you for the reminder.
    Keep battling on Jet. You continue to be an inspiration.

    Love Mavis xx

    Like

    • Jet Black says:

      Thanks Mavis. I must say I don’t feel like I’m battling – far too aggressive for me, but yes, I do continue living. How flattering that you find me an inspiration… What are you inspired to be or do, Mavis?

      Like

  13. lexsborgia says:

    You seem to be spending more energy than you have in the bank. Keep an eye on the interest rate – Labour voter, eh! 1. “With a sense of time running out, I all too often see how little I’m accomplishing.” Slow down, where are you rushing to? Tortoise+the hare! Who won?
    2. The word Matinee. I live in Germany, I fight every day to keep my English alive, which is tough, because allies are few. It’s just a word, but it’s words like those(that I never see or hear) that reminds me who I am. Thank you.
    3. Post. When I post, it’s raw material(but still good). Tt takes4-7days b4 the post is fully edited and refined. I was still working on the Django post, but after your visit I I gave it a good scrub, 3days work in 4hrs. Now I am satisfied with the result, and I think you will be too.
    4. Is this(your transplant) the same one E.J is getting from her sister!
    I like your words, Jet, you’re a positive soul. I’ll be back4more. Cheers.

    Like

    • Jet Black says:

      Sorry for the delay in responding… more of that time/energy stuff.
      1. The sense of time running out is about having myeloma and WANTING to do more than I have the energy for. It’s not about rushing, but about desire.
      2. So glad to share delicious nutritious words with you. I’ll see if I can include a few more to pep up your bland vocabulary diet.
      3. I already made my comments about this on your blog.
      4. I had an auto transplant (own stem cells), like EJ is about to have. She’s not having a sibling donor transplant at this point, but when my auto transplant failed after only 5 months, I had further treatment and then an donor transplant from an unrelated donor, in May last year. It’s this that I’m currently recovering from. Please feel free to read back if you wish. Maybe I’ll have to write a brief catch-up blog for any late arrivals at my myeloma table… a taster menu, let’s say.
      Good to have you here and welcome back any time, Arlanos.

      Like

  14. lexborgia says:

    Itz all good, Jetsetter.

    Like

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