More On This Odyssey

Das ist mein Streit:


durch alle Tage schweifen.

Dann, stark und briet,

mit tausend Wurzelstriefen

tief in das Leben greifen –

und durch das Leid

weit aus dem Leben reifen,

weit aus der Zeit!

~ Rainer Maria Rilke





As I write this, I have a stonking headache. I had to cancel meeting up with a good friend earlier, which felt worse for me than any pain in my head. My trips out of the house are precious, especially those of a social nature. The people in my life are gifts of great value.

I don’t think the headache is to do with my dystonia or heart failure. It could be a side effect of my medication, or perhaps something I ate last night that had a few too chemicals. Who can tell? I find these ‘incidental’ aches, pains etc hard, as every day living is not easy in the first place now.

With the passing of time, I am no longer feeling reduced and frustrated as I was in my last post. I have been contacted by Together Against Genocide and am waiting for a follow-up phone call. I also had a rejection from a publisher who asked me to send more poetry. Now, a rejection like that is not so bad.

My right leg remains twice the size of my left, I don’t know if that will change. I also discovered that my right butt cheek is twice the size of the other. That will be very funny when I start to wear jeans again. I am looking forward to an Indian summer with less intense heat. The garden needs attention desperately, so I need to find a gardener quickly and this overwhelms me. Really, apart from my conditions, feeling overwhelmed is my most frequent problem.

Having had to buy a new washing machine, I was overwhelmed by the delivery of it. I got a parking ticket (erroneously) and I felt overwhelmed.  I want to change my mobile phone company, but want a sim only and to keep my number. This overwhelms me. I have admin to do and I’m overwhelmed.

So, the skin on my fat leg at times bothers me. I can’t describe it. Sometimes it’s like pins are being pushed in, other times it feels as though it’s not entirely mine. My doctor gave me an analgesic cream but in this heat the ‘wearing’ of it is not pleasant, even when thoroughly rubbed in. So occasionally I take a pain killer by mouth.

I found out that analgesics do ‘find’ the pain! Certain proteins, chemicals anyway, are released by the hurting cells, and painkillers contain something that locks on to that chemical. It was much more scientific when I read it, I’m not good at retaining facts unless I’m studying the subject.





My Odessey…a weariness

We make decisions in life, but we have no handbook to advise us except that which our parents taught us or allowed us to learn in our mistakes.

My mother and my Dad were polar opposites. My mother took extreme measures to control me and once even abducted me after I had left home and lived abroad. My Dad represented reason, a calm voice who gave me freedom and love, and so I always returned to him except when my mother made it impossible. A year before my mother passed away very suddenly and unexpectedly, she suffered a significant stroke. I arrived at the stroke unit an hour or so after she had been admitted, early in the morning. I brushed her teeth, washed her face, fixed her hair. I never imagined such a thing occurring. But I had always been kind to my mother when she was unwell, which was hard to discern as she was a hypochondriac.

I have decided to be happy in my journey of terminal illness, pain and severe limitations on what I can do.In the last several weeks I have felt an ennui, a weariness of being limited, fatigued in minutes of standing or walking, feeling helpless when my sheets become adrift and cause me discomfort. I don’t have the energy to remake my bed, and I often forget to ask my daughter until she has left my room. I have learnt to not call her back. She is still young and has not learnt empathy, but, even so, I am very proud of her personality and talents. I taught her to forgive, to express anger appropriately, but she is at the age of rejecting family values, thinking she knows everything. As I once did.

My ex is my carer. He comes twice a week. At first, it was great but now he arrives without announcing himself, does what he wants to do and has an expectation that I can do what he wants me to do, like hang washing. This said he broke our washing machine the first time he used it and so that is a financial worry for me, and my daughter is upset as she needs clean clothes for her job. I feel for her. That which we rely on, when it is gone, no matter how temporarily, can cause so much worry and distress.

So I feel stuck, frustrated, helpless and at times I fall into the trap of feeling like a victim. I am not, even though my life has been very hard I will not be a victim. I am dependent, though, and this is very hard. I have lived overseas, driven hundreds of miles alone and with passengers, brought up my daughter alone, made a home alone twice. I put myself through education twice.

I feel reduced. Incomplete. Caged. I can still be happy despite this, or have serenity. That is a much better term. I can have serenity. Despite everything, I can choose serenity. Patrick O’Neil can relate to this in a different way. Many can, in other situations. I can only change what I can, and should accept what I cannot.

I am sad that I can’t get on a plane, drive more than say, twenty miles. I can’t change people, though some close to me appear to want to change me. My restriction in ability triggers my post-traumatic stress syndrome. I can get very vocally loud for a short time, panic, but then it is gone.