Weekly professional treatment sessions focussed on head, spine and lymphatic system.
Relaxing & exhausting at the same time, these sessions were also important to validate progress and tweak the home treatment.
Multiple daily exercises and self-massage of the head and neck 'down' and the chest and spine 'up' to manually move the toxins in the lymphatic system to the drainage point in the upper chest area.
Initially alternating hot & cold compresses between your shoulder blades to promote blood flow, reduce inflamation and encourage flow into the lymphatic system from the spine.
Promote and regulate the relevant key systems for cognitive and digestive function. Omega-3 EPA, vitamin B, milk thistle & ginger are some of the components. See links & resources.
Detox regime, taking chlorella tablets with psyllium husk and coconut oil. Lots of water and limiting or cutting out coffee and alcohol. Ridding your body of the toxins is a long process as they embed in soft tissue around your organs.
Old fashioned convalesence is key. Doing too much and running low on energy has a major impact and can put you back in treatment. ‘Pacing’ is about balancing activity and rest to help manage M.E. and work towards recovery. Doing a maximum of 'half' of what you feel you are capable of is a key rule.
At first, the worry is centred around what the illness is. I knew it was something serious, quietly I expected to be diagnosed with cancer. The next worry was financial - the financial insurance policies had an exculsion for M.E. - how long would sick pay last, what would we do if I couldn't work again? Finding someone you can talk to is key.
When I started the treatment I was warned you get worse before you get better. YOU DO. Its really important to keep going, even though you get spots, your energy disappears and your brain stops functioning! One of the ME support websites suggested a diary to help with motivation and allowing others some understanding. Because the symptoms were so varied both in nature and severity, I came up with a scoring mechanism and tracked how I felt hour-by-hour and recorded any relevant information about the day. This has really helped me.
I am lucky enough to have a small 'attic' room - my man den. This was critical in managing my symptoms and keeping me positive. I could control the light, noise and temperature and maintain solitude when I needed it. I have to credit the computer game 'Elite Dangerous' for hundreds of hours of space exploration, that kept my brain active and my spirits up.
Having a strict schedule even during my worst days allowed me to maintain the treatment. I used a couple of phone apps. One to keep a regular to-do list with reminders and a timer, to ensure the exercises where completed correctly.
I remember in the early days searching the internet for "running with M.E." - virtually no results! At that time I thought I could 'work myself out of it'. I later understood why this was not possible. Running is my safety valve for stress, worries etc. I've have had to learn to adapt but can't wait to get back.
M.E. can be unpredicatable and its ok to have a good day. You aren't a fraud. There are many ups & downs and its important to stay focused on the long term treatment and not be distracted by short term changes. I had a family holiday (thinking it might be my last) and instead of aggravating the symptoms, I had a 'good' week with only 3 incidents.