I seem to have entered the next phase of my journey. I had been trying to cope with my spinal pain with minimal pain relief for several years, something I can no longer do. My MRI results showed that the remaining discs are reduced to something akin to chalk-dust and my spine is riddled with arthritis, pressing on the nerves. The pain management program has ramped up, and is necessary to keep me moving. I have had a strange sense of vulnerability as a result. Some of the medication makes me tired, and I have had to have early nights. I find it hard to remember the names of people I don’t see often, and find going to large social events trying, as I am away with the pixie’s. I want to be quiet, have rest and not have too many commitments. Sitting for long periods is agonizing and I need to move around. I have to plan everything well in advance, even the weight in the lunchbox I carry when attending excursions with my daughter. I am dreading winter as I know too well the agony that grips my frame. I have to know the time it will take to get somewhere and when I can expect to leave. If I am prolonged, it can mean a day in bed afterward. A day lost. I have left items in stores as the weight would be too much to carry. I have had to pardon myself from the table so I can move around outside. There are hundreds of examples I could give you. Things people without this damage wouldn’t think about at all. My doctor said that elderly ladies’ she knows find their spinal pain excruciating when ironing. I need to dose myself up before this task, and look on with dismay as the laundry basket fills with items needing to be ironed. I have the spine of an eighty year old, and somehow it has to keep me going for the next half of my life.
My daughter and I have a synchronised routine. At the dishwasher, she deals with the lower section. She loads the front-loader in the laundry and puts the washing on the line and takes it off. We have our dance, and it works well, an unwritten love and understanding flowing back and forth. I have high hopes that within the next decade, they will be able to rebuild and strengthen backs with a simple injection. I am walking several kilometres most days, in spite of the pain. Living in a semi-rural environment helps you escape the confines of your body and focus instead on the nearby river, the kookaburra’s and cockatoos, their laughter delighting my angst-ridden mind.
I need to have some of my back teeth rebuilt, after they came loose on a sesame cracker. I would rather have spinal surgery, the truth be told! You have to laugh; I was trying to limit my intake of bread, so for lunch ate these gluten-free, rock-hard crackers, and lost my teeth! Even if I end up in a wheelchair, I honestly wont mind. I am so grateful for the years I have had being able to walk. I am grateful I got to carry this child, despite the odds. I am happy with my lot in life, even if I have to plan my itinerary of a day as if embarking on a mountain trek! It is about focusing on what you have, not what has been subtracted from your life. I will need to recalibrate my life, and my expectations of myself, but it wont be the first time I have had to do so. The headaches from the Lyrica have finally stopped, just as I have been advised to double the dose. Always a mountain to climb. As long as the backpack holds a tolerable weight, it will be okay.
RAPHAELA ANGELOU 
Reblogged this on Seachy Waffles On, Chronic Pain is a game changer and commented:
A great piece explaining some of the issues that spoonies have and highlighting how much they have to adapt their lives just to exist!
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Thank you, my friend.
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This is as if you have stolen my medical records and written my life out in words. I feel every single thing you say here. I am at the stage of that wheelchair (having pigheadedly resisted for years) the adjustments are going on in my bungalow and every second of the day is planned.
What I can tell you though is that you are not only an inspiration to others in your position but you are also an inspiration to your child. My LG keeps me going on those dark days when I all I want to do is hide away. I hate the pain meds that make me so tired and even more when my body crashes with no spoons left and I lose days out, afternoons, events I’ve been planning for months. So on and so forth, what I can tell you though is that the chair isn’t so bad, it takes some getting used to and accepting that all too often people talk to whoever is with you as opposed to you but that is their ignorance. I reply and smile.
I wish you luck and love with the next stage of your journey. Remember you are never alone 🙂
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I have used a chair many times, particularly in pregnancy and after. I reckon my daughter would enjoy pushing me around, doing wheelies! You are an inspiration to me! I know what you mean about the pain meds. I start stuttering and get forgettable when I am trying to converse with people. It is frustrating.
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I bet your LG will love it, mine does she’s so proud of herself when she pushes me about in the supermarket!
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Knowing mine she will be doing wheelies!
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Raphaela, you are an inspiration to many, especially your sweet daughter. I admire your perseverance and positive attitude in the face of these significant challenges. Sending lots of kind wishes your way! Take care! 💛 xo
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Sending you much love. xxx
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😊💛
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I know, I said this before: I admire the way you move on, Raphaela! Of course, it would not help to fall apart in frustration and self-pity but it is no easy to at all! I hope that many who are in a better condition read your posts in order to stop lamenting. You are a strong woman and it is wonderful how your daughter hangs in with you. An important lesson for life that she learns that way! Huge hugs to you, my dear friend 💖
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Oh Erika, thank you! You inspire me more than you will ever know. Xxx
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And what you just said gives me more than I could ever say. Lots of love to you, dear 💖💖
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I am sorry that you have reached this next stage in living with your injuries and conditions. You are describing my life with chronic illness – even the simplest of things needs to be planned and every activity is a management juggling act. I am hesitant to accept invitations for fear of the consequences – losing a day or more to recovery, time which is so preciously needed for ordinary day-to-day activities like meal preparation, showering and parenting, the latter of which cannot be delegated. Sure, other people could help mop the floor but no one else can be their parent. When it is time to slow down, priorities need to be re-assessed and routines change. You are already doing these things. It is lovely that your situation has strengthened the bond between you and your daughter. There are ways to manage these things so as not to burden our children but to raise their self-confidence through their achievements and capabilities.
The hardest tasks are the mental and emotional ones as we adjust to change. May you be able to come to terms with your ‘new normal’ and find a satisfactory balance between rest and activity.
Love always,
Jodie xx
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Jodie, you have the gift of eloquently putting into words exactly what is happening and what needs to happen. I have always looked on in admiration the way you handle physical challenges. X
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I understand! I also would rather have larger surgery than dental work!
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Coming from you, that is quite a statement my friend!
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