So much has happened in my life in the past few weeks that I had wanted to write about, but I struggled to find the motivation. Today I realised that part of the reason why writing has suddenly become onerous is, sometimes I find myself reading back the sentence I had just written, only to realise it is simply a string of words with no meaning. Ever since I learned to write in English at the age of 8, reading back what I had written to see if it makes sense was how I decided if everything was grammatical or not. I am starting to realise that my brain might not be able to cope with a task as simple as that anymore, especially when tired.
From the 26th of January, I spent 8 days in hospital. My vascular condition, the result of a congential abnormality which had become symptomatic about 4 years ago had largely settled down with my retirement from work and the accompanying lifestyle change. The last two years, especially, I had almost forgotten why I no longer worked. Then, 5 weeks ago, I started feeling patches of pain on my chest, just under the collar bones. It felt like someone was standing on my shoulders and pushing me down. The pain was bad enough, that I drove myself to an Afterhours A & E (it was a public holiday) and was sent by Ambulance to Hospital. They did a MRI of my chest area with the abnormality, but couldn’t find any changes from the one done two years ago and I was sent home. 3 days later I was back in Hospital, this time with head, neck, shoulder and chest pain as well as numbness down my left side and patches of iciness/tingling on my left leg. The doctors hypothesised I might have a pinched nerve in my neck. I said, I thought the symptoms were neurological, but due to a lack of blood supply to the brain rather than a pinched nerve. Of course they didn’t listen to me and did another MRI of my neck and chest area and sent me home again.
I have been home for just over 3 weeks now and the symptoms are still very bad. Anything I do around the house which involves my left arm being raised more than chest high brings some or all of the symptoms back. I am also struggling with remembering certain words and saying hot when I meant cold and vice versa. I feel overwhelmed when trying to do the simplest task. I believe I have Vertebrobasilar Insufficiency or VBI which basically means the posterior brain or mainly the brainstem is not getting enough blood. It usually occurs in people who have atherosclerosis or hardening of the arteries. In my case it is being caused by the abnormality in my system. When the left subclavian artery is not getting enough blood to supply (i.e. when using the left arm), it is stealing blood from my left vertebral artery, causing it to flow in reverse. The vertebral arteries are major blood vessels supplying the back of the brain.
Last week, I saw my Vascular Surgeon and finally convinced him to refer me for a brain MRI, which I had on Friday. I am scheduled to see a Neurologist on the 10th of March and am hopeful of finding out whether or not my theory is correct. The dilemma however is, even if they find I do have VBI, they will not operate for fear of causing spinal paralysis. Talk about being caught between a rock and a hard place. In the meantime, I exist in limbo, not knowing if these symptoms are permanent or not.
The first few weeks, my mother and father came to stay at my house and help with Jacob. They are way past the age when they should be taking care of children and I could see what a strain it was for them physically. They are also very set in their ways. They ate a different brand/type of rice, coconut milk, tea, sugar to what I normally bought. They found it hard to live around a cat as neither of them are really animal people. But they did what they could to help. A week ago, I sent them back to my sister’s saying I would try to manage on my own and find more permanent ways of managing both my household and looking after Jacob. We made it through the week and the weekend. Everything from washing my hair, to hanging up laundry, making the bed, driving and cleaning brings the symptoms on. The worst is the painful vacuum like pressure in my ears caused by the lack of sufficient blood to the part of the brain associated with maintaining balance in the inner ear. When I have this symptoms, I can’t function and if it is going to be ongoing, life doesn’t seem worth living. It is that bad.
The only driving I do is to drop Jacob off at school, a distance of less than a kilometer and the occasional trip into town, 5 minutes away. Most of my groceries are ordered online and delivered to my kitchen table. In the days since I came out of hospital, several friends have brought meals, others drove me to and from appointments. Many have come to visit and those overseas have written or called. My neighbour who does my gardening is happy to help me with the heavy jobs and Jacob has been an absolute treasure, helping me with carrying shopping and laundry and putting out the rubbish. He is a lot less trouble to look after now that he realises I am unwell. I think seeing me being taken away by Ambulance for the second admission to hospital really scared him.
My quality of life is a fraction of what it was at the start of the year. Yet, I have so much to be grateful for and I try to keep that in mind and not let despair overtake me. Losing my cognitive functions is one of my biggest fears, losing my independence a close second. I can’t control what is happening to me healthwise; all I can do is accept that it is happening and deal with it as it comes.