I have recorded this post on my podcast (available on Apple Podcast too) and also reflected on what I wrote.
What a strange name for a blog. It is strange, and initially, hard to understand, but I will try to explain. I have a few medical issues in my life. They are:
- Multiple Sclerosis
- Sarcoidosis
- Asthma
- Chronic Headaches
Multiple Sclerosis has been part of my life for 25 years. At the start of my illness I had numb heels. I noticed this when I returned to Ireland from London for my graduation from University. When I returned to London I went to the doctor. I was very fortunate that the doctor I went to had MS too. She referred me to a Neurologist in Queen’s Square, London, and within 4 months of getting my first symptoms I was diagnosed with relapsing remitting MS. That could be a world record for diagnosis of MS, as it can sometimes take years.
At that time there was no treatment for MS. The only recommendation was for me to get on with my life, and to take Evening Primrose Oil, which I am still taking today. My illness did progress, and after a year I had to quit me job. I didn’t have the energy to do it. Fatigue was bad, and my mobility had become worse. Particularly my right leg. It was heavy. Like walking in water. My left leg was perfect, with no issues. It reminds me of the Peter Cook and Dudley Moore sketch about the one legged actor who wanted to play Tarzan. (Tarzan Sketch)
On returning to Ireland, and my parents, I took a few months to rest, and then I started a small shop selling giftware to tourists visiting Connemara. Family, friends and acquaintances helped me, and gradually I carved out a new life for myself.
Now
Fast forward 21 years to July 2014. I had been living MS symptom free for nearly 10 years. I had been told about an amazing drug, Low Dose Naltrexone (Listen to an interview I did with Mary Bradley about my journey). This drug managed to stop my MS, and I had no more symptoms. Amazing. On the 18 July 2014 I was in a minor car accident. I was stopped in traffic, and someone crashed into the back of my car. I heard a loud crack in my neck. I was a little dazed at the time, and shook my head. I got out of the car, and inspected the damage. Exchanged detail with the person who crashed into me and headed home. I was again living with my parents, helping my Dad look after my Mom, who was ill. The next day I started with a headache, pains down my arms, amongst other things. since that day I have not had a single day without a headache. Not one. Not even for a minute.
My headache starts the day at a 5/10. Never less than that. Depending on the level of my activity it can sometimes get to an 8/10. I have regular spikes in my headache that cause me to flinch away from the pain, which is usually on the right side of my head. My symptoms describe a migraine headache. I have tried many medicines, and the only ones that do reduce the pain a little, also cause me to be sedated.
I have made a choice to stay with pain, and avoid sedation. I have had to find ways to control my reaction to this pain, and this blog will be describing what I have tried, and what I am still doing.
A 30 Minute Life
This headache has had the impact that I cannot concentrate on something for longer that 30 minutes. Sometimes it is 20, and other times it is 40 minutes. The average is 30 minutes. After this time the pain reaches a level that I lose focus, and have to rest, distract myself, or meditate to reduce the pain. When it reduces sufficiently I can return to what I was doing. My goal is to find something that I can do in my life that gives me personal satisfaction, and that I can earn a good living. At the moment I am doing market research. I am one of those people that knocks on your door and asks for 15 minutes of your time. This suits me perfectly at the moment. I usually get a break between surveys, which helps prevent my headache getting to bad.
The whiplash injury has caused some inflammation in my body, and this has caused my MS symptoms to return. I have not had a relapse, but the scarring in my nervous system have become active again. As a result I now have a heavy right leg, and my fatigue has returned. This has meant that I am using a walking stick again, as my right foot has a tendency to drag. This could cause me to trip, which would not be nice.
It takes courage to share such personal and sensitive details of your life with a wider audience. Thank you for being so open and transparent about your struggles and success stories! I look forward to your future updates!