All posts by lostandfound

About lostandfound

Sometimes blogging about Multiple Sclerosis, but I'm frequently sidetracked.

Hot chocolate – the results are in…

Black and white photograph of a mug of hot chocolate

Cocoa helps MS patients feel full of beans again

(The Times, Tuesday 5th March 2019)

A mug of hot chocolate a day helps people with MS reduce fatigue, study finds

(Sky News, Tuesday 5 March 2019)

Earlier this year, you can imagine what an absolute joy it was to have many people telling me to ‘just have a cup of hot chocolate, because (they) read in the news that it would help my MS’.  Now look, I have a science degree. I also know that what you read in the news is not always accurate. I suspected that it wasn’t going to be quite as simple as drinking a mug of Bourneville or Green & Blacks a day  (other brands are available). In an attempt to find out for myself, from a purely pragmatic position, I thought I’d give it a go. And if it worked – great. Obviously, I wasn’t having bloods taken and monitored for this, nor was it going to be a particularly rigorous experimental procedure, but from the point of view of someone living with MS, it was worth a try. Here’s what happened –

[In case any of my former students or colleagues are reading this… I KNOW IT’S NOT LIKE A PROPER LAB REPORT OR SCIENTIFIC PAPER, STOP JUDGING ME]


  • The high flavonol concoction was very palatable. Important. Too many dietary supplements are absolutely vile. I’m looking at YOU, Fortisip and the like (other brands are available)
  • It was simple to make: a few spoonfuls of powder and hot water, and stir vigorously
  • I found the hot chocolate particularly useful when I was cold. This is, perhaps, a really obvious statement, but I can become chilled very quickly, even when it’s supposedly a warm day. My hands and feet, particularly my right foot, suffer badly (I don’t have Raynaud’s Syndrome, but I’ve always had temperature regulation issues. I’m not blaming that on the MS, but it is just one more thing which annoys me). The hot chocolate kept me nice and warm for a couple of hours.


  • It was hot chocolate – I don’t have a particularly sweet tooth, nor do I particularly like milky drinks. so it wouldn’t have been my first beverage of choice for every day. I drink a black coffee every day, sometimes two cups. If there was a mechanism by which the flavonol content could be suitably increased in coffee, or indeed any other drink, I would have found that more acceptable
  • Whilst it was easy to prepare, there were days that even that was too difficult for me. My fatigue was such that I struggled to get out of bed. On those days, I try to ensure that I’m hydrated as a minimum, because there are occasions where I’m too fatigued to even eat. I have a bottle of water by my bed, and use my limited energy to lift that to my lips. Yes, this sounds dramatised, but I can assure you that I wish I was exaggerating. Fortunately, I have come out of that particular period (if I hadn’t, I wouldn’t be able to even think about writing this blog!), but my point is that there were days that I could not have prepared this by myself, and I didn’t have anyone around to prepare it for me, thereby negating any cumulative effects the flavonols may have had
  • There was no way that I wanted hot chocolate on a hot day. Remember how hot Easter weekend was? Hot chocolate was the last thing I wanted. I didn’t even eat my Easter Egg until the following week. I can’t anticipate that I would want hot chocolate in the summer if we have a really hot and dry one like last year.  (NB: at the time of writing – mid June – we are currently in the middle of a weather warning for torrential rain and I have the heating on. Again.)

Results and Conclusions

Did it work? ie, did it alleviate my fatigue? Well… not that I could tell, unfortunately. Certainly not physically. As I said, I do have periods where I am so fatigued that all my body can do is exist. I also have periods where I am just tired, like everyone else. When I started my experiment, I didn’t realise that I was about to go into 3 weeks of such intense and unrelenting fatigue that I had to be checked for a relapse (it wasn’t). That period started and ended with my usual fluctuating and activity dependant levels of fatigue, and it was only within those shorter periods that I was able to make the drink.

When I was able to have the drink, I did notice that my ‘cog fog’ lifted slightly for a short while – for approximately an hour each time. However, this also happens after a cup of coffee. Cocoa has a certain amount of caffeine in it, and although this was controlled for in the original study, I wasn’t able to do so at home. So the cog fog might have been helped by the beverage, perhaps not.

I’m not sure what I was expecting  – did I imagine that the hot chocolate was going to act like some kind of energy drink? Did I consider the importance of a cumulative effect? The original study measured markers of fatigue/fatigability at 0, 3,  and 6 weeks. I didn’t have a chance to build up that cumulative effect, and at present, it would be difficult for me to say for certain that I would have a period of 6 consecutive weeks where I would have the energy to have the beverage every day.

Other thoughts –  is the absorption and bioavailability of  flavonols dependant on intestinal microflora? Is it genetic? (My honours dissertation was a study of soy isoflavones and LDL Cholesterol levels, and at that point in the literature (2011), it certainly seemed that both these factors played a role, and I’m aware that much more work has been done on this since then). In which case… was I starting from a disadvantage anyway given that I don’t have a complete GI system ?

I like to think that, as a former dietitian, I can make myself have the motivation to carry out a study like this. As an MS-er, I definitely have the motivation to try to drive away fatigue. But, I found it hard to maintain motivation when I considered it wasn’t working. Pragmatically, I would have found this difficult to sustain over a lifetime – if the effects are cumulative, I would need to have added the ‘hot choc’ break into my daily routine, which is fine when I’m at home, but more difficult if I’m not. Additionally, given that I couldn’t find a single product which provided sufficiently high levels of flavonols, a long term investment in this experiment would be quite expensive. Perhaps a product is out there somewhere, but given that product labelling is still minimal when it comes to exact amounts of phytonutrients, it was very difficult to identify.

Lastly, from what I now know about RRMS, everyone has a different experience. Fatigue is one of those symptoms which is caused by different factors in different people, and presents itself in many different ways. Have I overused the word ‘different’?  The paper by Coe et al (2019) gives an in depth and nuanced breakdown of the markers of fatigue used in the study, and is worth a read. The original study suggested that there is definitely potential to use flavonoid rich beverages to improve fatigue levels and fatigability in MS patients. Although it didn’t do much for me at this particular time, I’m glad I tried, and might be able to try again at some point. I’ll be keeping an eye open for further developments from this research group.

“So, how long have you had M.S.?” Part 4b.

Last part, promise. Where were we? Moved to Yorkshire, peacock, right. I actually had the energy and stamina to look for a place to live, and pack up and organise our move, mostly by myself since my husband had already started his new job and was staying in a hotel. My eyesight was still damaged – I don’t think it will ever recover, but I’ve adapted. Everything else was pretty good though, so, after a summer of visitors descending on us from Scotland and Liverpool, I started a job in a local sixth form college, in a student support role.

The job was really busy, mentally and physically: I was a personal tutor for approximately 200 students per week, with all that entailed, and my work was spread across several rooms in the building. There were a lot of stairs! By the second month in, I was in full swing of another bout of optic neuritis. And I was exhausted. My G.P. wrote to the nearest neurology department to ask if I could be seen quickly, since this seemed to be very similar to what had happened in 2015. Unfortunately, I had to hand in my notice at my job – I physically could not cope. That was a little disheartening.

25th January 2018: after another MRI, I had a neurology appointment. The neurologist showed me my scan…oh dear. There were quite a few bright white patches, indicating inflammation and potential lesions. And he said, “Well, you’ve clearly got M.S.” and then said something else. I have no idea what he said – I looked at my husband, and reached out for his hand…I think he looked as shocked as I felt. I don’t really recall what else was said during that appointment. I do know that this particular neurologist would have been very thorough, and practical, but I was completely numb. The neurologist did say that I looked like I wasn’t expecting to be told that I had MS, so I told him about my experience with the neurologist in Glasgow. He explained why that neurologist might have been more reluctant with his diagnosis ( something about being too strict with the McDonald Criteria? Forgive me if I can’t remember), but that in his view, I most definitely had MS, and from my medical history, I may have had it since my late teens. Oh. Right you are then.

The next 6 months were a bit full on. The neurologist referred me to the MS Nurse team, and gave me lots of information about Disease Modifying Drugs. At one point, I was going to be taking Tecfidera – I actually had the first box in my sweaty little hands – but that decision was scrapped when it was shown, via another MRI, that I’d had at least one more relapse since the ‘official’ diagnosis. The latest load of symptoms involved my left hand and arm going numb and unable to move. My existing symptoms had flared up massively as well: I remember sitting down one day and realising that I couldn’t get back up. My left hand side was weak, my right leg kept collapsing, and I was too fatigued to move. After much discussion, pondering, weighing up consequences etc – the MS team and I decided to try Alemtuzumab, or Lemtrada to give it a more pronouncable name.

I had my first round of Lemtrada in August 2018, and will be having my second round in August this year. That’s definitely a post for another day. I’ve linked to some information about it if you want to know more about it.

Where am I now? Well, Relapsing Remitting MS is like an ocean – I have calm days and stormy days. Sometimes I can see the waves coming and plan accordingly, and sometimes I can’t and just have to ride them out the best I can. I’m still trying to understand what is happening to me, and that has been quite difficult at times. But I have a lot of support, and it could be a lot worse. I have a diagnosis, and am receiving treatment. That’s half the battle sometimes.

The answer to the question, “So, how long have you had M.S.?” is, as you can see, complicated! Officially, since last year. Unofficially, possibly 28 years? I’m not convinced that it would have been wholly beneficial for me to have been diagnosed at 19 unless there had been treatment. As it is, I got worse at a time when there is treatment and support. It is what it is…let’s see what happens next.

Part 4a. I’ve been sidetracked by the peacock. Again.

And then we moved to Yorkshire…North Yorkshire, to be more precise. My lovely husband changed his job role and location to the North East of England, and given that I wasn’t working and the (step) kids were young adults who didn’t live with us…off we went. We live in a lovely area, complete with wandering peacock. This is where I get a little sidetracked!

Seriously, the first time I saw the peacock – or Alex as my nephew named him, because why not? – I was making a coffee, and looking out my kitchen window into the back garden. And lo! There is a magnificently plumaged peacock wandering about the lawn. We’d only been there a few days, so not aware that Alex was a regular visitor, I phoned the local petting zoo.

“Hello, have you lost a peacock?”

“No, we don’t keep peacocks” ( Yes, in retrospect, I realise that they are NOT pettable. At all), “but you’re not the first person to phone us. Why don’t you try the RSPB?”

So I did. And when the bloke on the other end of the phone had finished laughing, he kindly advised me that they could only help if the peacock was injured. Didn’t look injured to me, so I did what anyone would do in this situation: I phoned my mum.

My mother knows more about things than she lets on. Claims she doesn’t understand modern technology, but still managed to install Netflix on her mobile phone so that she can watch Call the Midwife in the car whilst she’s waiting for my nephew. That’s just one example – she does that all the time. Gives you a blank look, but secretly knows exactly what she’s doing. And I’ve just realised that I do exactly the same thing…ANYWAY. Could she solve the peacock issue? Well, reader, on this occasion…No. No, she could not. Perhaps I expected slightly too much from a youthful pensioner in the south side of Glasgow. She advised me to call the police. I did ask her how exactly she thought that conversation might go…’999 Emergency – Hello, there’s a peacock in my garden’. Perhaps not. I would have ended up in the papers as an example of a complete time waster, like those eejits who go up Ben Nevis in flipflops. Why would you even do that? Think of the blisters…!

Photograph of peacock in my back garden.
My introduction to Alex the Peacock. “Hello, is that the police? There’s a peacock in my back garden…”

I did email the local police though, as a responsible citizen. Perhaps someone had misplaced it, and was, at that very moment, crying into their cuppa about their lost pet peacock. And with that, I had done my good deed for the day, and went back to my unpacking.

This story doesn’t have an ending. 2 years later, Alex the Peacock is still a frequent visitor. Turns out that he belongs to a local farmer, and goes wandering frequently. He can even fly, because he’s not had the relevant feathers clipped. He seems to like my street – possibly because there are very few cars, but more likely because there are a few residents who feed him (I’m looking at YOU, Mrs Across-the-road-and-up-a-bit). He is often to be found on the roof of a neighbouring house, usually up at the window. Imagine opening your curtains in the morning and finding that Disco Turkey staring at you! He is incredibly beautiful – the colours are sublime – but he is incredibly noisy. Peacocks don’t chirrup sweetly, oh no. They honk like a goose. Loudly. I think they might be a bit daft or are secretly longing for the Antarctic, given the number of times I’ve seen Alex out in the snow and rain. He brings colour and a talking point to the street…and that’s just lovely.

Photographic image of peacock looking through patio doors
Nosy, isn’t he! One December day, whilst sitting beside my patio doors, I had a visitor. No, I did not let him in!

“So, how long have you had M.S.?” Part 3.

At the end of part 2… the optician had advised me to make an appointment with my G.P. ( I later found out that she wondered if I had Type 2 Diabetes. One of the symptoms of that can be a rapid deterioration in eyesight. I knew that, given that I trained as a dietitian, but I’m in constant denial about being in a high risk group. Overweight? No, I’m just storing fat for the winter months. Family history of T2DM? On both sides? Yeah yeah…Genetics doesn’t always work like that. Lack of exercise/sedentary lifestyle/likes a wee Malbec now and again? SHUT UP!) Ahem. Off I went to the G.P.

I’m going to spare you a blow by blow account of every appointment, but the bloods came back as being nice and healthy. I still had all the same symptoms, though, and at this point could barely leave the house, let alone make my way to Edinburgh. I also knew by this point that there was something more significant than just being tired. When I spoke to the G.P., she suggested that I was probably ‘just stressed’, and that I had ‘a history of depression’. That would be the ‘depression’ that was later diagnosed as M.E.

I’d like you to imagine, dear reader, what was going through my mind at that moment. Perhaps I was having a strange reaction to stress…but I was pretty stressed out by losing part of my eyesight, having very painful eyes, losing mobility, and being absolutely exhausted. I was also feeling ‘stressed’ by this woman’s’s attitude – it brought back horrible feelings of having to fight my corner when I had endometriosis, and further back when I had M.E. I would love to say that I calmly suggested that I should be referred to a specialist, but by this time there were tears rolling down my face. I’m sure this was just further evidence to her that I was ‘stressed and depressed’! Nevertheless, she did agree to refer me to neurology, although she did say that she was sure they wouldn’t find anything. Interestingly, the optician later said that if the G.P. hadn’t referred me, she would have done.

Over the next 6 months, I saw a neurologist, had an MRI, then another neurologist, and had a Visual Evoked Potential test and a Sensory Evoked Potential test.

[I mixed up the appointment dates for the 2 evoked potential tests. Imagine my surprise when I went in for what I thought was a fancy eye test, only to be asked to take my trousers off…]

I still wasn’t diagnosed with M.S. by this point (Summer 2016), although there was a recognition that something had happened – not just stress. I had a few neural lesions, including one in my right hand visual cortex. My left eye was slower to react than my right, and I did have an area of impaired peripheral vision. And there were signs of nerve damage in my lower right leg and foot. There was also a recognition that the ill health I had in the early 1990s might be linked. I have been asked more than once if any scans were taken at that point…oh, how I have laughed! Actually, were MRI scans available back then? Hmm. Might need to google that. At this point, M.S. was mooted as a possibility, but ‘probably not’.

January 2017 – I hadn’t deteriorated, but equally, wasn’t much better. I had another MRI, which showed no change. The diagnosis at this point was (and I’m quoting verbatim here), “Not not M.S., but not definitely M.S.” Answers on a postcard please! I was advised that I’d be monitored yearly, and meantime I should try not to worry about it, to lose weight, and not to sleep too much.

Hmm. I was still unwell, and was in a kind of limbo. I also felt quite guilty about being overweight and ‘lazy’. I couldn’t help sleeping, though (the neurologist’s advice was to set an alarm clock. Thanks, I had never thought of that before). And whilst I’m aware that I could still do with losing a couple of stones, I’m metabolically healthy. The weight issue is sometimes a bit of an ‘easy win’ for clinicians, I feel. Clearly, body composition has implications for health, but to advise a patient to go away and lose weight, whilst giving no further advice on how to do so is particularly unhelpful (Rant over).

And then we moved to Yorkshire…in Part 4.

I am SO SORRY that this has turned into War and Peace, or Game of Thrones, or the Narnia Chronicles. Or A Star is Born. We watched that at Easter weekend, and each one of us looked at our phones at the same time to check how long was left. Lady Gaga was very good but I couldn’t make out a word Bradley Cooper was saying. And not much happened. Anyway. I will return with Part 4!

“So, how long have you had M.S.?” Part 2.

Where were we? Ah yes, 1995. I was ‘better’. I think a quick gallop through the next 20 years will suffice ( sorry, I’m having to take a deep breath here. 1995 was more than 20 years ago. How did that happen?).

1995 to 2003 – married, divorced, BA in Educational Studies. Jobs in e learning and internet content management. Symptoms – well, I still had that right leg dragging thing when I was tired. And I was tired a lot, but I put that down to having a busy and, at times, stressful, life. It wasn’t as bad as the early 1990s though.

2003 – I was diagnosed with severe endometriosis, culminating in extensive surgery. Endometriosis is another ‘difficult to diagnose’ one: I had been going to the G.P. for what felt like years, complaining about abdominal pain. Clearly, it would not be prudent nor safe to send everyone with a uterus off for a diagnostic laparoscopy on initial complaints of pain, but I had a good few years of being told that it would settle down when I had a baby. Or that I had IBS. Well, I was never going to have that baby: my insides had been messed up for quite some time. And if I did have IBS…well, everyone’s bowels would be a bit irritated with being infiltrated in 2 places by endometrial tissue. Anyway. It was very painful. Was it anything to do with M.S.? No idea. Perhaps there’s an autoimmune link somewhere?

Let’s skip on our merry way to 2015…after obtaining a 2nd degree, this time in Human Nutrition with Dietetics, I went to work in Liverpool as a lecturer in Nutritional Science (I loved that job. Loved Liverpool, still do). I was made redundant, so I moved back to Glasgow to be with my shiny new husband (I’m still with this one. He’s very lovely. No plans to let this one go. I’ve even got adult stepchildren. See, there was no need for me to risk a prolapse by giving birth! Every cloud…) Clearly, I needed to do something, so I started a course in Edinburgh. Edinburgh is 50 miles away from Glasgow, and I don’t drive, so I was doing 14 hour days by the time you factor in public transport. I managed that for 3 weeks…

October 2015. Picture this: a frustrated, pale, ginger, angry-looking woman trekking through Edinburgh, bumping into lamp-posts, buildings, and people, limping as she goes, and swearing as quietly as she can under her breath, for this is Edinburgh and they don’t like Glaswegians at the best of times, let alone ones who appear to have been on the Buckfast at 8 o clock in the morning.

[Interjection: I’m from the West of Scotland, not actually Glasgow but close. Also, I’ve never had Buckfast. It looks horrible.]

The frustrated, pale etc woman was me. For some reason, the peripheral vision had deteriorated in my left eye. My eyesight seemed really bad anyway. My left eye was quite sore too. I was absolutely exhausted, perhaps that’s why my right leg was dragging?

I’ve always been very myopic, so off I went for an eye test. They confirmed that my prescription was much worse than it had been 2 years before, and that my peripheral vision did seem to be impaired, but my eyes were physiologically OK. Maybe I should go to the doctor?

I think we know what comes next, but I’m going to have a Part 3…

“So, how long have you had M.S.?” Part 1.

During various medical appointments, including optician and dental appointments, the question has been asked, “So, how long have you had M.S.?” The ‘official’ answer is ‘since January 2018’, but that was simply the point at which I was diagnosed. The true answer is more difficult to pinpoint. I’m not alone in having probably had M.S. for quite some time – for example, the journalist Caroline Wyatt seems to have had it since the early 1990s but remained undiagnosed until 2015. Parts of her story really resonated with me – her symptoms, the length of time to diagnosis – and I have found that it helped me to know that I wasn’t the only one who struggled. I thought that recording my own experiences might be useful to someone (or, indeed, helpful to myself next time I have to recount my medical history to a new clinician). I’ll try to keep it short…ha. Have you seen my writing? I don’t do brevity, and I do do tangents. I’ll try, honestly.

Age 19: I was a second year undergraduate, away from home. I probably didn’t look after myself particularly well, but I wasn’t the only one. So when I went to my G.P. to complain about feeling constantly tired, I was given standard blood tests (F.B.C.s, U. & E.s) and when they came back within normal range, I was advised that I was most likely depressed, given a prescription for antidepressants, and told to come back in 4 weeks. So far, so standard early 1990s student experience. The antidepressants did make me feel more…motivated? I certainly had less of a low mood, but I was still exhausted and I was experiencing overt physical symptoms that were detrimental to my studies and my life in general. My right leg started to drag behind me like it was a truculent toddler being dragged to bed; my cognition and memory were impaired: I found reading really difficult, which was not ideal for a Philosophy and English student.  Yet, my G.P. continued to insist I ‘had depression’. Eventually, I had to take a break from my studies and restart second year the following academic year.

Age 20: after a period of 6 months of rest and recovery, I restarted second year. It didn’t take that long – 6 weeks, perhaps?  – until the exhaustion began again. Once again, back to the G.P. Once again, back on antidepressants. Once again, improved mood, but still exhausted. The other physical symptoms returned too, with the addition of speech difficulties. Sometimes I was too tired to be able to form a coherent sentence.

At this point, the G.P. I saw was a locum. She decided to do more, wider ranging blood tests, and when these came back, it appeared that at some point in my life I had contracted Coxackie B virus, therefore, she concluded, I had a post viral syndrome called M.E. At last I had a label – yes, M.E. was still known as ‘Yuppie Flu’, or (as my best friend put it, ‘ Lying in bed and having a cup of tea disease’) but at least it was something properly medical. Again, I would like to remind you, the reader, that it was still the early 1990s, I was young, exhausted, and ready to accept any diagnosis that wasn’t depression (there was still a fair amount of stigma about mental health issues back then).

With hindsight, although I’m still grateful that I was being taken seriously and not dismissed as a ‘typical student’, I think the G.P. might have jumped on the alternative diagnosis a little bit too soon. Perhaps M.E. should not have been diagnosed based on one finding of an antibody. But then, I’m saying that with the perspective of a middle-aged woman who has had a lot of education, including clinical. I’m more critical. More confident. And the body of knowledge is greater, and more accessible. I digress: it was what it was, and apparently, that was M.E. I withdrew from my course of studies entirely – my mind and body could not manage anything beyond the basics.

Over the following 3 years, I got better, then worse, then better, then worse…I didn’t move home – I stayed put in the university town where my friends ( and future first husband) were. And by the mid 1990s, I was married, and ‘better’. I moved back to Glasgow, and started another university course.

This is already becoming quite a long tale… let’s skip a few years to Part 2.

Lazy besom alert

Still here! My recent gallbladder op went really well, and my recovery has been surprisingly smooth. I’ve been a little bit lazy recently ( hmm, wonder if my inherently lazy nature is why the MS was missed for so long. The medical profession possibly couldn’t tell the difference between my natural tendency towards langour and a pathological condition), so I’ve been doing nothing. It’s been lovely!

I have been drinking hot chocolate, and I have been contemplating life generally. I still like the idea of blogging, so I’ll update this properly next week.

The Preliminary Scoping Phase

That sounds quite official, doesn’t it? Day 4 of my extremely unscientific hot chocolate ‘project’. I’m calling this the preliminary scoping phase…well, it’s not a controlled experiment, is it? I’m happy that I’ve actually prepared and drank the hot choc for 4 days in a row. That’s participant engagement right there! Some observations:

Given that I really don’t have a sweet tooth, this has been less effort for me than I anticipated. Mind you, the drink I’m making is quite bitter. My husband commented that it was ‘quite messy’. No, that’s me making a mess, not the drink.

The drink is very filling. Remember, I’m making it with instant (water-based) hot chocolate and approximately 20g of high flavanol cacao (perhaps I’ll weigh it tomorrow. It’s probably slightly more than 20g, given the heapedness of my heaped tablespoon). The calorific value is approximately 171kcal per serving (that’s 107 kcal for the hot choc, 64 kcal for the cacao). Not exactly a small snack, but I’m not bothered about that, because my appetite has been quite low recently.

I’ve not been taking it at the same time every day. My primary focus has been making and drinking the drink, and I’ve managed that. Yes, it has only been 4 days, but I’m that kind of person who looks for a medal for flossing her teeth once a month ( MY DENTIST SAID THIS WAS FINE BECAUSE IT’S BETTER THAN NOTHING. Stop judging me). Good job I don’t wear a lot of make up – I’d have to chip it off every so often and my pillowcases would need bleached. I digress. 4 days in a row is a start.

Talking of which, tomorrow is my last day for a while. I’m going into hospital this week to have my gallbladder removed, because I’m middle aged, unfit, and a bit chunky. I’m such a good catch! It’s nothing to do with the MS, although the MS treatment I’m on (Lemtrada) can exacerbate already dodgy gallbladders. Ach, I wasn’t doing anything else anyway. So, now that I’ve done the preliminary scoping phase, I can start again properly when I’m on my feet again.

The lead author of the original study sent me a copy of the original research paper (Thank you very much, Dr Coe). Turns out I would not have been eligible for the original study anyway – my neurologist thinks I may have had a relapse recently (oh, but I have felt absolutely grim!), and I’ve to have an MRI and an evoked potential test to establish if this is the case. The original study – quite rightly – ruled out patients who had had a relapse within the previous 3 months.

Do I think the hot chocolate has worked at all? Well. The original study looked at fatigue and fatiguability, and I really don’t think 4 days is enough to judge. I’ve certainly felt more mentally alert and my concentration has been better in the period after consumption, allowing for about half an hour digestive transit time, but I think I’m coming out of this period of relapse/exacerbation anyway, so it’s very difficult to assess. However, I will keep going – allowing for the break later this week and next – since one of my objectives was to assess for myself how practical a single nutrient intervention might be. Nutritional interventions are, by their very nature, complex, and don’t always show an immediate effect (perhaps caffeine is a good example of an fast-acting intervention effect) Obviously, I’m not having bloods taken for this, so I have no idea whether there’s even any kind of cumulative effect on biochemistry. My only measures are of self observed Quality of Life markers, and when I’m back on my feet, I will attempt a more structured and better recorded project.

Meantime, I think I’ve done enough to be able to establish that a single mug of hot chocolate is not a miracle cure…don’t get me started on the mass media’s ‘understanding’ of health and science. That’s for another blog post 🙂

I have found my mittens!

Image of small cat wearing mittens. Caption is 'Behold! I found my mittens, now I shall have some pie'

This nursery rhyme reminds me of being a child. I didn’t ever wonder about the correlation between mittens and pie – it made perfect sense to me that you weren’t allowed to have the nice thing (I assumed it was a sweet pie, like rhubarb or blackberry) until you had found the thing that you had misplaced. I do remember wondering how the kittens were going to eat their pie wearing woolly gloves… clearly, I had a streak of pragmatism even then!

At this point, I have to tell you that I had written a paragraph about the nature of loss and foundingness.* I stopped to have some toast, re-read it, and thought, ” Well, that’s a load of navel gazing rubbish.” My actual thoughts were a bit more sweary than that, but you get the gist. I’ve always shied away from personal blogging, simply because I don’t want to be perceived as a self – obsessed show off (Oh look, there’s that West of Scotland thing again). So I deleted it…

What I did find during the process of writing was that I find writing quite therapeutic. The actions of choosing my words, crafting the structure of the piece, the editing and rewriting – I had forgotten just how much pleasure I derive from these. And right now, having that option to edit is very useful. When I’m tired, my words just…disappear. I turn into an inarticulate, idiotic numpty. But writing allows me the time and space to find these words. My words. And this makes me feel…whatever the opposite of a numpty might be.

Let’s bring this back to the blog title: I was at risk of going down that navel gazing path again, and nobody wants that! Sometimes with MS I feel like I’ve lost myself, and I base that on what I can’t do any more. It seems that I’m not lost…I’m still here. And I’ve found something that I didn’t realise was missing: my love of writing.

Last bit: I’ve not suddenly had a massive epiphany regarding my life direction. Oh no. I’m not that annoyingly cheerful. Not until I’ve had several coffees anyway. I’m having a good couple of days, and I’m learning to appreciate them for what they are. Tomorrow, I might have to hold onto the walls to stagger around my house, and that’s fine too. Those kittens found their mittens, and although they’re going to find it a bit difficult to eat their pie with gloves on, the pie is back on the agenda. Assuming they’ve eaten their vegetables first…

*foundingness: yes, I know this isn’t actually a word, but I still can’t think of the noun that comes from the verb ‘to find.’ It might come back to me.

That Twitter thread re. fatigue and hot chocolate

Note: I’ve copied and pasted this, unedited. And look, I’ve added some tags…

I have #RRMS ( Relapsing Remitting Multiple Sclerosis) One of my symptoms is fatigue. We’re not just talking about being a bit sleepy, this is full on ‘my vital signs are there but not much else/ has someone slipped me a mickey finn’ type overwhelming fatigue. It is truly horrible.It affects everything – mobility, cognition, appetite, eyesight, temperature control, muscular function etc. I need a cane if I’m outside. There are bits that I have forgotten, but that’s a ‘thing’ too. My memory is erratic! Some days are better than others. Today is ok.

I mean that I got up, had a shower, got dressed, and had a yoghurt & a coffee. That took approx 4 hours. I’m not on top form, but I don’t *think* I’ll have to have a nap. Wouldn’t rule it out though..Why am I telling you all this, Twitterpeeps? I wouldn’t normally go public like this and I don’t want to whinge, but you need context.

More context: I have a BA in Education Studies, trained as a dietitian, used to teach nutrition at @LJMUEHC , and currently don’t/can’t work.

..I clicked ‘post’ too soon. Sigh. Anyway. I AM DOING AN EXPERIMENT. N=1, ie me. Have you seen the media reports about ‘hot chocolate alleviates MS fatigue’? Those reports are based on this:

So I’m testing it out. DO you know how difficult it is to find the flavanol content of hot choc? I figured I’d have to design my own. The authors of the study used 18g of high flavanol choc powder to 200ml milk. I don’t really like milky drinks, and I don’t have a sweet tooth.

So, I bought some high flavanol cacao, and some standard water based hot choc to make the drink: see photo. Other brands are widely available. I didn’t measure the cacao, I just used a very heaped tablespoon. And stirred. And stirred.

Photograph of cacao, hot chocolate sachet, and tablespoon
I got that tablespoon from Braemar Castle, 26 years ago. They’re not having it back.

Initial observations: that’s a lot of stirring, but it did dissolve. Also, this has the potential to become v expensive. Looks ok, smells… v chocolatey!

Post drink – it tasted really nice and not too sweet. Do I feel less fatigued? I don’t know! I was having an ok day anyway. I do feel like having a little lie down, in the same way as you do after a big meal. We’ll see.

I’ll keep going for a few days – my fatigue levels fluctuate – it will be interesting to see if it makes any difference. I’m more interested in the practical side of this: will I be able to do this independently every day? My lovely husband is more of a carer than I would like.

How much would this cost in the long term? A box of 30 Wispa hot choc sachets was about £7, the cacao was about £8. I got them both from Amazon. I don’t think the cacao will last a week, never mind a month. As a personal experiment, I think it’s worth a try – if it helps, HOORAY, if not.. well: there are worse things to do. Watch this space…:-)