I forgot to renew my repeat prescription and have managed to find myself without medication for my neurological disease. It is very difficult. My body has been thrashing and writhing. I managed to get three hours of sleep by weighting my cover in bed. It soothes the nervous system and brings relief enough to sleep.
When I awoke, I found myself oddly still with hot pings around my body which must be to do with my damaged nervous system, but I was able to rest a short while longer.
I have been over to a lady with whom I am friendly. My attempts to text her had failed as I had put her phone number in my phone incorrectly. So now I know I am being prayed for. This comforts me. I know that Nick Archer is praying.
I wonder why my spirit is so strong when there has been so much suffering in my life? Why can’t I just give up the will to live? And yet I enjoy my life, apart from the disease.
I used to love waking in the morning because I would be pain free and relaxed.
It seems that is over now. I wake with painful spasms. My neurological disease is progressing fast.
My appointment in Southampton is on 1 September, so that seems far off and also suggests the end of summer, and reminds me that winter is not a good time for me.
A friend came over yesterday. We had a good chat and watered the garden together. I have more beautiful flowers opening. My garden is a pleasure to be in, despite all the weeds left by Benn Jackson.
The title of this post harks back to the beginning of my blog when I decided to share my journey with a new diagnosis, on top of the one I already had. I have used it today because I am dealing with symptoms. (I used to blog once every 4-6 weeks, because I found the honesty so hard. It took me three years to engage with other bloggers, and write more frequently. And to share some overviews of topics on which I have knowledge.
Recently, I shared the real reason someone’s father won’t speak to them. I didn’t want to give away that I had been told. This person said he didn’t fully agree, but that I had given the something to think about. Later, they had the cheek to tell me they don’t think I am a psychologist.
I am still suffering pain and muscular spasms due to the onslaught of a young girl whose sense of self-importance is higher than it should be. I think she thought it was ok to do so because I wouldn’t see her again. This is never an excuse to be rude or intimidating . You don’t know what battles a person is facing. Or the nature of any disease they may have.
As far as I have researched, my disease acts on my sympathetic nervous system. This is what causes one to blush, hiccup, and react to noises that cause flight or fight, releases breast milk, and tells one what their baby needs. Sometimes the sympathetic nervous system can cause an M.I during sleep – a friend of mine had two.
So, all that adrenalin that flooded my system on Sunday evening is still affecting my sympathetic nervous system. My left arm and leg, and the left of my back, have been spasming. It is intensely painful. The good news is that I slept well last night, so was better able to cope with it. I have notified my doctor but have the means to cope with it medicinally.
I am now considerably better, after taking medicine. I did not want to take it earlier in case I got very drowsy and slept at the wrong time.
Ideally, I would have been given morphine. That would have been a great solution but with costly events to me personally. I would have had to be taken to the Emergency Department, which causes my disease to worsen, and the journey home would be difficult.
I heard this morning that research on Motor Neurone disease has progressed. There has been no research on the disease I have. I have it in it’s worst strain, the strain that only Ashkenazy Jews get. Other caucasions get it in a localised area, black men get it in their calves and black women never get it. I don’t know about other races.
I don’t feel angry at the girl who intimidated me. I have feelings toward the company she works for. Fortunately, I have changed the help I get at home. It gives me more freedom, independence and saves a lot of money.
It is now over a year since Mr Ebsworth appeared in my bedroom at 3 am. He molested me once I got him downstairs, although I was offended I did not clock it as sexual assault until later. It seems so long ago, I was so vulnerable after two bereavements. It also seems recent as I still get harassment from the person with whom he shares an address.
I omitted to say, yesterday, that my poem was published by Poetry Bar. It was written in August.
Yesterday, a girl who was giving me help was incredibly rude to me. It came out of nowhere, and shocked me to the core. My mood flipped into negativity and adrenalin flooded my nervous system.
I managed to counter the negativity. Adrenalin, however, is my worst nightmare. It provokes muscles spasms that are part of the disease that struck me down.
I spent the whole night writhing with agonising muscle tension. It made me very aware of the bruise on the back of my pelvis. My shoulders were tortured, my arms, my legs, and especially my spine. Every muscle was fighting with my body. It was the worst night of my life in years and years.
I am very tired, I ache, and I plan to sleep. I cannot allow this to destroy my well-being any further. I feel so isolated though, as I seem to be the only person in the country living with this disease. This is what scares me. There is no research going on. There is no medicine that helps me.
I put my trust in God. Darkness lasts for a night, but joy comes in the morning.
Writer and psychologist. My health, a journey with two life shortening diseases 
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