The sun came out in London the other week which made me slightly nervous. The sun never used to worry me, but since having MS, I am never 100% certain how my legs are going to react to the heat. Sadly, the sun always sends me running for the shade these days as MS and heat really don’t mix. Ironically, Vitamin D, which humans largely obtain from sun exposure, is essential for people with MS.
Once I had discovered the importance of Vitamin D (thanks, as always, to Professor Jelinek’s Overcoming Multiple Sclerosis programme), I hot-footed it to my GP and requested a test. In the UK, vitamin D levels are measured in nmol/L (nanomoles per litre). Mainstream medicine deems a level of 50 nmol/L ‘satisfactory’, and a level of 25 nmol/L ‘deficient’. My level was 23 nmol/L – below deficient.
The importance of vitamin D3 in people with multiple sclerosis is only just being recognised by mainstream medicine. Thankfully, this is something which has been promoted by OMS for several years. So whilst my GP was keen to give me a ‘megadose’ (a one off dose to boost my Vitamin D level), he was pleased when my results came back at 170 nmol/L.
Professor Jelinek believes that people with MS should aim to keep their levels between 150 – 200 nmol/L, a level which many Neuro’s balk at, warning of calcium overload, liver damage etc, etc. The OMS programme advises 7 minutes of sun exposure per day, ‘as close to all over as possible’. This being the UK, I risk either frostbite or being harpooned by the neighbours, so instead I supplement with Vitamin D3 capsules of 10,000iu per day, which can be bought online (no need to plead with my GP). It is also possible to buy home-testing kits online, which I did last year. Cue: a phone call from a worried nurse in Birmingham:
- Your Vitamin D level is dangerously high. 230 nmol/L.
- Oh, right.
- You’re putting yourself at risk of toxicity.
- I have multiple sclerosis.
- Are you following that Overcoming Multiple Sclerosis programme?
I was pleased as punch, firstly that I had broken the 200 nmol/L barrier, and secondly that some nurse in Birmingham had heard about OMS. To be honest, my result was taken from a dried-up blood spot that had spent several days in the UK postal system, so I guess it may not have been 100% accurate, but it certainly showed that I was in the right area. Research shows that liver toxicity is only really a danger if Vitamin D levels reach 400 nmol/L. Also, many mainstream doctors admit that, whilst they wouldn’t prescribe a patient high levels of Vitamin D, they wouldn’t hesitate to take it themselves if they thought it would help.
Research shows that cases of multiple sclerosis are more prolific the further you are from the equator, so It would make sense that lower levels of Vitamin D play some part in the on-set of MS. It looks like I have my Scottish/Yorkshire heritage to thank for my current predicament. That, and the fact that I have spent the past 20 years in the bowels of some theatre or another.
Ricketts is another result of Vitamin D deficiency. In Victorian times, Ricketts became a thing, presumably due to small children being put to work in factories or shoved up chimneys, rather than being outside enjoying the fresh air. Although now thought to have been pretty much eradicated, in 2012, the Royal College of Paediatrics and Child Health released a statement that incidences of Ricketts were on the rise – likely due to telly watching and computer gaming, rather than a resurgence of the child chimney sweep. The majority of us these days work inside, and only go out in the sun (when available in the UK) during leisure time. At the other end of the scale, sun worshipping has created problems of its own, namely skin cancer. At this time of year we are inundated with adverts for sun tan lotions, and warnings about over-exposure, which is probably why parents tend to mummify their offspring in UV protectant swimming costumes. A little bit of sun exposure is essential for Vitamin D.
Since getting my Vitamin D levels right, I have noticed that I no longer suffer with MS fatigue, a symptom that used to affect me from time to time. MS fatigue is more than just tiredness; it is like exhaustion. Mind and body feel heavy and unable to focus, even if you have just woken from an eight hour sleep.
The other weekend as the temperature reached 24 degrees, I spent the afternoon sitting in a friend’s garden enjoying a BBQ. As predicted, the heat did make my legs slower and heavier, but I have learned to intersperse sun worship with periods of indoor sofa sitting, which I did a couple of times during the afternoon. I feel that following the OMS programme, as I have over the past three years, has improved my tolerance to heat and my ‘recovery times’. Last year, the UK experienced a record-breaking 35 degree day, during which I stayed inside and melted into the sofa. I could just about haul myself into the kitchen and the bathroom, hanging on to all available surfaces. Once the heat had abated, my legs woke up, although they remained sluggish for a week or so afterwards. Happily, I suffered no lasting effects from the BBQ (although the sun’s heat wasn’t as intense).
The big issue I currently face is deciding where to go on holiday. Gone are the days where I would choose a destination based on sight-seeing opportunities. I was never a great sun worshipper, but now much of my holiday prep is focused on the average temperatures of my destination. Looking back, I would never cope with some of the temperatures I have encountered on pre-MS holidays; hiking in the Grand Canyon in the midday sun, for example, or exploring Marrakesh in 50 degree heat (mad dogs and Englishmen…). So whilst the rest of the UK is bemoaning our lack of summer sun, following last week’s little teaser, I, for one, am appreciating the warm, but not baking, weather. Fingers crossed we don’t get hit by another heatwave. I’m wondering what Iceland’s like at this time of the year…?