I have had to get a stick and it sucks. My left leg is just not playing ball at the moment and my foot drop has got bad so rather than risk a fall I have got a stick. It is not where I wanted to be at 43. Things have been tough and I have felt on the edge a bit of late physically and emotionally. My chronic headache is part of the furniture after 5 months and really takes the edge off life. I did try and fix the headache through a private neurologist who suggested amitriptyline (anti-depressants) that are supposed to help chronic headaches. They just made me feel more crap and on edge so I scratched those. I feel stiffer than I have ever been which all together results in a constant low level of pain. To compound things on the bike I seem to have lost some power and it is that bit harder. My normal 30 lengths of breaststroke at Crystal Palace 50 metre pool is a ground out 20 now.
I can still walk unaided but steps and slopes are more of a struggle. I am always comparing myself to my worst place when I got diagnosed. I feel I have slipped below that base line and like dear Moen Ali being a confidence cricketer how I am doing physically reflects how I feel.
My experience of the support network from the NHS has been rubbish. I see my Neurologist once a year and my appointment was supposed to be in May. The clinic got cancelled and they rearranged it for the next week, which I couldn’t make so the next appointment I could get was September. I did in the meantime take it upon myself to get my annual MRI sorted. A few months later I got a short two sentence letter with spelling mistakes saying I had a new lesion on my brain and they would follow up in due course! It adds a sense of hopelessness to proceedings.
I do have to have hope and keep believing I can overcome this. I continue with my daily meditation and have started doing transformational breathing again with the lovely Emma and Alison at Herne Hill. Oxygen Therapy still seems to help but getting out to Swanley seems that bit harder at the moment. I have felt the need to get back into my MS Gym stretching and have been enjoying the odd vape of CBD oil but not at the same time!
My real hope lays with American Dr Will Cole whose care I am under now. After an exhaustive set of tests he has some results to work from. The highlights (or lowlights!) are I have arsenic, uranium, nickel and silver heavy metal toxicity and low iron. My gut as I suspected is all over the show with parasites, leaky gut and small intestine bacterial overgrowth (SIBO) and high hydrogen and methane (poof!). Low testosterone is another key one and some other markers including some relevant elements of my genetic profile from my 23 and me test. The key thing for me is that Will has put in writing that he can help me which I have never had before. His summation is that all these things are interrelated no one is truly separate from the other. So the list of my main symptoms being limited mobility/standing, constipation, gas, bloating, chronic headache, numb hands and feet, eye ache and general stiffness. These are things that require a process of healing the body and regulation of the dysfunction to address one you have to address the root cause of all. We are confident that we can correct and set a right course to resolve your issues. Key to that is healing my gut as 75% of your immune system lies there. He said give it 6 months and I will be feeling better so let’s see if I am rocking around the Christmas tree. I have ordered a lot of supplements to mainly fix my SIBO and support my healing and will start those in earnest with his diet protocol in September.
End of the school year is always a special time I greatly enjoy sports day although no chance of me entering the dads race this year. The playground proms were wonderful with Diddy’s reception class doing a memorable version of George Ezra’s shotgun. We had a fun school camping trip at Wowo and Martina our Italian au pair who has been brilliant is coming back in September. Those of you on tooth watch will be pleased that Paul has put in a rather nice ceramic bridge so I can flash a smile again. The summer foreign holiday couldn’t have come soon enough in Turkey for some much needed family time, relax, swimming and Vit D.