Self Preservation

Yesterday I had a productive counselling session. They are always productive, but I just thought this one was particularly useful. Let all of us go to counselling. The world would be a better place.

Firstly, my counsellor has given me license to be selfish, accept I am not allowed to call it that. Apparently, if I start thinking that me not answering my phone or replying to a text message because I am too tired, depressed, to have guests or just enjoying myself, is selfish and something innately evil, I will feel guilty about it, upset myself and wind up exhausting myself. With the added hormones I am taking and the general trauma of having cancer, this is not a good thing, but it is a situation I frequently find myself in. If I have interpreted yesterday’s discussion correctly, I have too few healthy days to worry about upsetting others, although I always do. My counsellor says that now is the time to be looking after me. I have been trying to learn this now for three months and it is slowly sinking in. Of course, she is not the only person to tell me this, many people have mostly men. In my counsellor’s opinion, Housemate’s views on this particular matter are a good gauge on how I should behave. That gives him a lot of power; when I said this to her, she appeared to find it amusing.

That said, I do feel ill mannered if I do not contact people, especially when I expect them to contact me. I expect a lot of people to contact me. I need it. Welcome to the one way friendship. The fact of the matter is that sometimes, mentally or physically, I am not capable of doing it, doing the roadshow and reliving everything shit that has happened in the weeks previous. It is too exhausting and too painful. I can understand somebody being upset with me if I am not there for them to talk to me about their problems when they are sad. The key thing to remember is that I always make contact, just on my schedule. I do not understand someone being upset because I am not available for them to talk to me about my problems. I live with this everyday and somedays, I cope by trying not to remind myself that I have myeloma. The key thing to remember is that I will always make contact, just on a schedule that is not of my making. Do not begrudge me this.

Secondly, we discussed the unknown and how I should be dealing with it or not, as the case may be. Pretty much, she agreed that I am managing it as best I can at the moment, in manageable, bite size chunks. I cannot fret over what is going to happen in six months or next month, with my treatment, my hair, my pay and my life. It is out of my control. Put it another way, I am currently living within this three week cycle. At this moment in time, I do not know what is going to be happening to me past Day 21 of this cycle, meaning I cannot plan anything and manage the what ifs. I do know what is going to happen to me now. I know that I will experience the worst fatigue I have ever known in three days time and that this will last a few days accompanied by emotions heightened by my steroids, I know that my immune system will be low the week afterwards and then I will feel better. This is what I can reasonably manage and manage I will. Anything else will be dealt with later, I just need to keep reminding myself of this. No fretting Emma Jane Jones… No!

Now, to the talking next point, which I am rather fond of, be warned, it contains a metaphor of sorts. Four months ago, if somebody had said this to me, I might have laughed in their face. I certainly would have done so behind their back. Not any more apparently.. I hope that this does not make you spit your tea at your computer screen in guffaw. If it does, please try and remember it in case you ever see dark times. Right then, are you ready for softy softly? It’s coming… Deep breath.

My counsellor says that I have two cylinders. On one side, I have the fatigue and depression cylinder and on the other, I have my happiness cylinder. On Day 1 of my cycle, the former will be empty (realistically, there might me a dribble of gas leftover). The latter will be full because I have enjoyed the time off that Days 11-21 offer and lived as much as I can in those ten days. The happiness cylinder then acts as a reserve as I battle through the worst of PADIMAC and will slowly empty, ready to be refilled from Day 11 onwards. The bad cylinder works in reverse, that cheeky bugger will fill up in the next few weeks and then from Day 11 onwards, I have to make sure I am happy enough, so it cannot help but deplete. I find this beyond reassuring. I have cancer, you cannot laugh.

Lastly, I mentioned to my counsellor that I find issues and potential issues which are not myeloma related, are magnified, the importance and weight are magnified in my brain. I cannot help but worry and stress over things and because my life is My Myeloma, everything that is not the cancer, seems more important somehow. I have already mentioned above how I should manage these dark thoughts, whether I do in all cases is a different matter. A great deal of it is irrational; did I say something stupid? will people think I am stupid? should I have used ‘in’ instead of ‘for’? what is he doing? why haven’t I seen them for five weeks? is it because I am no fun now? The list goes on. As long as the lights are not out, I can manage these. I struggle over people thinking that I am rude or ungrateful. I hope that I am neither and if I appear to be, it is not intentional.

I have to remember that for now, I am number one, oh and everything should be taken and dealt with in bite size chunks. It’s the only way to live.

The counselling really is a good idea.

Head High.

EJB x

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4 thoughts on “Self Preservation

  1. Jet Black says:

    I completely concur! Going through treatment and facing a shortened life is totally all-encompassing and draining. You are entitled and in fact, have to, look after yourself. Those friends who don’t get it will probably fade away and to be honest, you’re better without them. The ones who can be there for you how you need them are the ones you’ll keep, as well as new surprising ones along the way if your journey is anything like mine.

    This is a time when you just don’t have the energy to deal with anyone else’s stuff and you don’t have to. Right now it’s time for you to take care of you and allow others to do so too. And it’s ok to say no, I don’t feel like talking about it all, please read the blog. For me, that was one of the main reasons for writing – cathartic for my own purposes, but also to let people know what was happening without having to repeat it again and again.

    So glad your counselling is helping. And your housemate sounds like a wise and supportive soul too.

    • ejbones says:

      Thanks Jet and thanks for your other comments. It’s nice to know there are other people there.

      To be honest, I am not ready yet to face up to the ‘shortened lifespan’. I am not unrealistic, and I know it is likely, but there is a part of me holding on to the fact that the statistics for myeloma are for patients in quite different circumstances to my own. The first thing I was told by my doctors on the 17 August and again on the date of my formal diagnosis three days later was to not look at the statistics. My doctors are hopeful that because of my age and general health, they can do more to keep the myeloma at bay. But like I said yesterday, manageable chunks. I doubt very much that I will see my 70s, but I sincerely hope I will see my 40s and 50s. The ten years just doesn’t work for me right now. Nobody knows what is round the corner, but I can’t accept that I have been awarded my death sentence and this is now it.

      Keep reading. I keep my glass half full whenever I can.

      Emma

  2. dear emma,

    i was so enthused about leaving a comment; but jet said it all, and much better than i would have because her myeloma is her’s, and i can only experience it through my husband’s myeloma.

    but i will say, “brilliant!!!” about the counselor helping you to think about the bad cylinder and the happy cylinder. i am always amazed at your ability to take on things like those metaphors to help you get through difficult times. not everyone is so open to thinking with a new perspective.

    warm hugs and here, cheering you on,

    karen, TC

  3. Of course it is all about you, as it should be… your challenge is that you are a whole lot younger than most MM patients who have already been through a bunch of life changes which gives them a more solid (perhaps) justification skill for allowing the “Me” switch to be turned on. And also you have younger friends who are probably more than a little self-absorbed anyhow…TS – as said above by Jet, those who are real friends will ‘get it’ and those who don’t, tah-tah baby. Those of us who have been around MM (I’m a caregiver, not a patient) for awhile know about the highs and lows and the need for self-focus.

    By the way, Life-as-lived-on-a-daily-basis even without the complications of MM is a crap shoot anyhow. Anyone who thinks they have it nailed is deluding themselves. None of us knows what tomorrow will bring, or how it will be delivered. I have spent a large part of my life trying to control people and things and guess what – it has not worked. I am learning my lesson now about taking Today and living Today and letting Tomorrow take care of itself. I hope my words are helpful… intending that your peeps are contacting you and making you smile!

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