Thoughts, theories and things


Please remember that this is me making sense of myself. I am not qualified to speak for others and certainly not from a scientific platform.


**Wow. We bought a new car this week - an automatic! No more trying to push down with my left foot. Drove 79 miles yesterday and NO nerve storm. However - did a silly thing today spending 5 hours with a steam wallpaper stripper and a step ladder. Difficult

*** There are lots of topics and discussions on this forum, which is great, but I’m starting this one for almost selfish reasons and as a guide to myself.

I was diagnosed with remitting, relapsing MS around 10 years ago when I was 60 years old and I’ve always tried to analyse what is happening, why and most of all, how I can overcome it.

I can only ever talk about my particular MS as everyone is different and I realise that there are many here who are much worse off than me. I would have liked a category on this forum just for RRMS but Admin are reluctant to start one. So I’m sorry if what I say or if I’m over enthusiastic and positive upsets anyone. That’s the last thing I would want.

The idea is that from time to time I want to post my own progress, setbacks, thoughts, feelings and ideas for overcoming problems as I feel it will help me to record my own progress or otherwise. If anyone wants to join me that’s great but I’m not expecting it. As I say, it’s just for selfish reasons.

That’s all for now. I will start maybe tomorrow. No set pattern.

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Hi Keith, I don’t think its selfish at all in fact I think it will help others that are experiencing similar things from thinking they are the only ones going through these things. Looking forward to your posts. Maz

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Ok. My personal MS journey started around 1953 when I was 4 years old. As children do, I’ve never forgot overhearing my mother talking about her own childhood and how, when on holiday, her father would often sit on the pier rather than with the family on the beach “because of his nerves”.

A few years later I overhead something that suggested that my mother had had some kind of nervous breakdown when I was born. As she was 39 at the time I was old enough to assume, wrongly, that having me was a shock that caused some kind of nervous episode! As I grew up I was never aware of any further problems.

I never knew my grandfather, who was a successful businessman, as he died of a heart attack in 1939 just before war was declared and I was never able to discuss anything with my mother as she died, also of a heart problem, when I was 23.

Years later my son was diagnosed with MS when he was about 30 after developing some kind of glandular fever just after gaining his doctorate at university. This was some 5 years before I had my first MS attack.

I understand that MS was first identified around 1870 but was only just being known about in the 1930’s and not properly understood until the 1960’s so MS would not have been talked about in my youth.

My understanding is that MS is not hereditary but a faulty gene can be passed down in order to increase the chance of developing it.

Looking at my family connection with probable and then actual MS I can agree with that. However, the interesting point is that in all cases, including mine, it appeared at a time of perhaps quite heavy stress. In business, after mature aged childbirth, glandular fever and in my case stress caused by my wife’s health and work problems combined.

In my next post I want to explore further the link between my first MS attack and the stress I was under at that time but how I was able to control it when a few years later my wife became seriously ill and I was her full time carer.

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And today I want to explore stress and what it means for my personal MS. Remember, this is me talking mainly to myself about my own MS. I am not qualified to talk medically.

In my view stress comes under two broad categories. Physical and mental.

By physical stress I mean the outside influences that trigger my MS response and again there are two main categories being temperature and pressure. Like many of us it’s heat that is uncomfortable and that means hot weather, hot rooms as in hotels, heavy duvets, heat from exertion and thick clothes.

To my mind the stresses of temperature are telling my immune system that there is a threat to my body and therefore it must do something to alert me. But mistakenly, instead of just making me sweat it starts attacking my own nervous system with all the results of fatigue, foot drop and general irritation.

But all that is surely controllable by keeping cool. But whilst that is possible it isn’t always avoidable. So after I’ve been sensible and taken off the pullover or walked out of the hot room I may still need to take control.

I’m sure it wouldn’t work for everyone but what I mean by taking control is standing still and literally talking to my immune system. Not always out loud of course.

By talking to myself, and breathing slowly I can feel I’m calming down and by calming down I’m releasing stress. As the stress level lowers so my immune system stops attacking - or at least that’s my theory.

In practice, of course, it’s not always that simple and it takes time to relax and for the symptoms to reduce if not disappear.

I find it needs both practice and discipline but it works for me.

Next time I will describe a couple of examples and then move on to mental stress which is a different ball game altogether!

Ok. Here is an example of physical stress and how I personally deal with it.

Like many of us, I have difficulty lifting my left leg and often walk with a stick for fear of tripping. So last year I moved from my 4 bedroom two story house with hobby room in the loft and allotment down to the road to a bungalow with converted garage for hobbies and a vegetable patch with greenhouse all on one level.

So what did I do a couple of days ago? I struggled up the loft ladder to get some long term storage sorted then went outside up a step ladder to fix a leaking gutter. I had to concentrate really hard to make my leg get to the next step and coming down was equally difficult. OK, so call it silly and dangerous but I did it.

The result was not only fatigue but the usual fizzy left side and sudden leg jerks. My remedy was as follows.

For the fizzy feeling I first stand bolt upright looking at the ceiling and tell the feeling to go away. By doing that I feel that I’m taking control of my own nervous system and immediately feel my head relax.

I then slowly bend forward and try to touch my toes. Then straighten up again slowly and stretch up looking at the ceiling again. Repeating this 3 times appears to unlock or calm the nerves centred at the top of my back and neck.

Finally, I take any shoes off and go to the
open patio door. I then gently rub or scrape my instep on the metal threshold. This produces sudden leg jerks but after a few scrapes that disappears. Is as if all the nervous electrical energy is earthed in the same way that a bolt of lightening strikes a lightning conductor.

Oh - and then for the fatigue I prescribe myself a a cup of tea, a slice of chocolate cake, if there is any left, and put my feet up on the sofa for half an hour. It normally takes me about 3 minutes before the first snore.

I certainly couldn’t achieve that relaxation and first snore if I hadn’t have completed the first stages. Instead, I would have continued with what I call the ‘nerve storm’.

Next I explore my theories on the relationship between MY MS and mental stress.

Surprisingly I had a good night after the driving and wall paper stripping. That tells me that driving and paper stripping were not recognised by my immune system as being stressful dangers.

Did a bit more this morning (Sunday) then out in the garden planting out the Runner and French beans. Yes, it was warm but not hot.

Then it hit. I knew I was in trouble as I couldn’t move and my head felt like cotton wool. My legs were twitching.

So I struggled to a recliner and sat with my feet up and closed my eyes closed. It was bad.

So I tried something different. In my head I looked at the problem from my perspective, then tried to see it from my immune system point of view trying to attack stress and then from an onlookers view. I reasoned, I discussed all three views and persuaded my immune system that it really didn’t need to attack my nervous system and that it would be better employed looking for diseases like Covid. I then thought I should talk a quick nap. I couldn’t.

Then within minutes I was able to stand, walk and carry on gardening. This has never happened quite the same before but I know that I had taken control at that moment and managed the situation.

More analysis soon.

I like the prescription of a cup of tea. I love tea :smiley:

Oh yes, tea is an important part of life whether it be part of a therapy or an essential ingredient for study.

I’m interested to understand why you chose “theorising” as your name. Keith

Hi Keith, I was an academic so theorising seemed apt - my daughter made the logo for me. She read it as ‘The 0 rising’ :rofl: hence the T in the middle with the circle around it pointing upwards. I love tea. :smiley:

Hi Maz. Interesting. I’m no academic but I take a keen interest in British and European history between the wars, especially 1935 -1939, and I also dabble in philosophy when I get time between hobbies. It’s my son who is the academic of the family. A research scientist currently in Barcelona. What are your special interest subjects?

I love the logo as well. Your daughter is a talented designer. Is she following graphic design as a career?


Hi Keith, I like your interest in history and philosophy my elder daughter studied philosophy at university before becoming a solicitor, but is eager to study history now. My son is also a research scientist and is presently in Australia, but is trying to get back to Europe now. My youngest daughter started off as an actor then went on to graduate as a graphic designer. I was a biologist, but am very, very happily retired now. What are your hobbies? What philosophers hold your interest I like the critical thinking that philosophy brings forward.

I have no hobbies presently besides reading, but to offset my scientific background about 20 years ago I studied homeopathy. I kept my full time university job going until retirement (with the last 12 years in a wheelchair). I originally looked into homeopathy because I was in pain and didn’t want to continue to take pain killers and someone suggested I try homeopathy and my first reaction was stuff and nonsense. Then I thought well why not look into it (what have I got to lose), so I arranged to see a homeopath and discussed my pain and she said I’ll send you a remedy and the cynic in me thought yeah right of course you will. Anyway a few days later 1 small tablet arrived in the post. I remember being so angry that I opened the bin to throw it away and then remembered that I’d paid £50 for the consultation and remedy so decided to take it. This is no exaggeration - as the pill touched my tongue and dissolved the pain dripped downwards out of my body (shame my MS stayed though) and that pain never came back. Heck that meant I’d missed something as the scientist in me thought homeopathy couldn’t impossibly work, so to find out first hand it worked astounded me. I went on to study it for 4 years and qualified to help others (in my spare time). I just wanted to see if it could help others like it helped me and it has worked for some.

This site is good to make connections as life can get lonely during lockdown and I’ll be pleased once things get back to some sort of normality. I’m rabbiting on now so it’s sleep time for me. When you have time let me know more about your hobbies…

I look on my body as though it as a whole country such as the UK.

The UK has a head of state, being the Queen, and then there is an elected government. Behind the government is the Civil Service and a whole pool of permanent administrators and experts. Then there are the engineers who keep our roads, railways and rivers all functioning , the power and electrical engineers who look after all the circuits that give us heat, light and communications and finally the police and the armed forces that keep us safe.

So, in theory our own head of state as human beings is our conscious being whether awake or asleep. Some call it our spirit. It’s our overarching reason for being (and I have my own philosophy on that). It’s the thing we call ‘ourself’.

The government and all its resources is our brain. It’s what we reason with and put things into action. It’s our executive power. It’s the brain that tells our engineers to lift our arm, to walk, to eat and it directs our armed forces to go to war when threatened.

The Civil Service is there to provide advice and guidance based on knowledge and experience. It’s our accumulated wisdom our brain can call on.

Our roads, railways and rivers constitute our physical body. Our bones and muscles, our blood flow.

Our electrical system is, of course, our nervous system that is directed by our brain to instruct our muscles to act. It is our communication system, our intranet, our telephone network. Like the UK we are a mass of rivers and tunnels and wires all working in harmony at the direction of our governmental brain under the serene and benign leadership of our monarch.

Our armed forces, being our immune system, is always at the ready to fight infection and to repair damage. It repels germs by surrounding them and killing them but sometimes needs the help of chemical weapons in the form of paracetamol and all the other host of natural and manmade pills, potions and creams.

But like any nation there can be genuine mistakes. We can consciously or unconsciously make the wrong judgements. We can occasionally arrest people on false allegations, we can imprison people unjustly, our armed forces can even suffer from friendly fire.

And isn’t ‘false allegations’ and ‘friendly fire’ what MS is all about? A mistake by our armed forces. The surrounding and damage to our communications network? An illicit infiltration and misdirection of our armed forces.

So, as in real life, I try and act as my own sovereign power and try to talk to my prime minister at daily meetings rather than weekly. I discuss our way forward. Our plan. And my government sets up watchdogs to monitor my police and armed forces to ensure they do as my executive power demands. I stay in control.

OK. I know this is fanciful and often unattainable but it’s the way I like to look at life. The way I like to look at MS. I helps me to gain perspective.

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