Life, the Universe, MS & Me

My great grandad and Derren Brown
October 20, 2011, 6:45 pm
Filed under: life

Here’s an odd title to get you going, just what does my great grandad have in common with Derren Brown. Well, let me tell you a story that is based in the kind of Devon logic as used by my great grandad.

He once said to me “tourists are a bit dim. They think coz we live down ere in the country that we are in some ways closer to nature. By proximity we is o’course but we don’t know the mind of it. But, they will quite often ask you what tomorrow weather will be.”

He continued, “what you should do is look at the sky and cast your eyes round it, making seem you be taking it in. Then tell them you think it’ll rain.”

The reason he explained “if it don’t and it’s sunny they’ll be out on their frawsy and think no more of you. If it do they’ll remember it exactly as you said and be a wonderment that people can tell it by looking at the sky”

Now, I’ll leave you to draw your own conclusions as to how this relates to Mister Brown.

Now I do quite like the mans programmes, he really is unfairly clever. But it’s exciting that he has a new series. I like clever tv.

The MS Trust Secret Art Show
October 3, 2011, 1:32 pm
Filed under: life, MS

Secret Art Show

I have been asked by the MS Trust to write something about the Secret Art Show. The last ones I believe were quite successful.

I feel the best way to start is to say a little about the MS Trust. It is a cause that I particularly like. They are a charity that is involved with education and research. I don’t think that anyone with MS in the UK has not at sometime been aquatinted with one of their publications.

When I was diagnosed in 2008 and I first saw my MS nurse it was publications of theirs that she gave me. At a time when everything seems up in the air such things are great boons.

The MS Trust remains to me as one of my primary sources of information. Its balanced views of new medications and treatments are the best to turn to when a new “miracle cure” is announced in the papers. Open Door, their quarterly publication, with important news on campaigns issues and treatments, is very good, along with the personal stories that show us that others are in the same position is an invaluable resource.

The publications of the trust are not just important to the MSer (could we please not say sufferer, I refuse to let it make me suffer). When I had problems at work they helped me to make my manager understand what I was trying to say. It was enormously helpful because to some extent they expected me to be an instant expert on the subject. I am though, like everyone, learning as I go along.

And all this, before we get on to the helpline and the wonderful website, which is always up-to-date with new developments.

As you can tell I cannot sing their praises highly enough. They even find answers to your queries via twitter if they possibly can, as they did for a pharmacist follower of mine just lately who needed information for a patient,

As stated above, I consider the work the MS Trust do as highly important and valuable, to MSers and all those connected to them, as well as wider society.

So, money needs to be raised. The trust always thing of fun ways of raising money and I think this is a fab idea; The Secret Art Show.

All pieces of art the same size and all the same price, except that some are by famous artists or celebrities and so are probably worth more than you pay, others are by non-famous artists and so are valuable in their aesthetic merit. So buy something you like the look of, that you want on your wall. You never know, it might be by someone famous, or possibly by someone who is yet to be.

helen x

Petition and govt response
August 14, 2010, 9:21 am
Filed under: life, MS | Tags: ,

Earlier this year a petition was posted on the number 10 website. It was this:

We the undersigned petition the Prime Minister to deliver on the rights of every person with multiple sclerosis to world-class healthcare, to independence and to support to lead a full life.

The detail of the petition was as follows:

More details from petition creator

We call upon the UK Government to take immediate action to improve the lives of the UK’s 100,000 people living with MS by committing to delivering on their rights to:
– Quality and specialist health care throughout life, including fair access to the right drugs and treatments.
– Personalised care and support, wheelchairs and enabling equipment to live independently.
– Support in and out of work, and support for carers.

MS is a complex, unpredictable condition with no known cure. MS can have a serious and progressive impact on a person’s physical, emotional and mental wellbeing, and can lead to severe and permanent disability. Across the UK, serious inequalities in access to drugs, treatments, enabling equipment and support services mean that people with MS are being denied their entitlements every day. We believe that the Government has a duty to ensure that every person with MS in the UK gets the quality care and support they need in order to live their lives to the full.

This was the response as posted by HM Government, unfortuately it has to be a link because it is not posted in such a way that it can be copied and pasted. Like it’s a secret or something. Bad govt.

found here

Now, I’m not really going to discuss this too much because I’m not sure what to make of it. Is it adequate or is it just a bunch of words?

I will note this though. There was not element in the response relating to support in work. We do want to work. At least whilst we can. And also need the transition to being a non worker to be smooth and as stressless as possible. My workplace gives me so much trouble. I realise it’s technically covered by existing legislation but the nature of the illness being what it is….

MS and Social Media
August 12, 2010, 10:18 am
Filed under: life, MS, Thanks | Tags: , ,

MS posse

I thought I would write to my fellow MSers on Twitter. Sure we are a disparate band but the support is amazing.

When ever a problem arises or you get a new symptom or drug the combined experiences of the group are a boon. There is always an idea or suggestion or just the support that’s required. There is so much difference talking to people with experience of MS. An innate understanding of what you mean and how you are feeling in a way that those without could not comprehend.

Also they are all a bunch of funny people. I guess your humour and appreciation of life must grow and deepen when faced with such things. Either that or MS cruelly targets good and lovely people. Full of awesome as my American friends would no doubt have it.

Well you are all fabby, if you ever need a virtual hug i’m here for you. You make life more livable.

I Have Other Facets
August 11, 2010, 7:21 pm
Filed under: life

Star Carr

I would once have called myself an archaeologist. So I thought I would write something towards that and Star Carr is on the news today. So I thought I would tell you about it. I’m not necessarily going to talk much about the current dig as it’s still ongoing and much of the most interesting scientific evidence has yet to have been collated.

Star Carr is in the vale of Pickering, East Yorkshire, it is a significant Mesolithic site that has always when investigated served to add greatly to our knowledge of that time.

The original excavations were carried out in the 1950’s by Grahame Clark and led to his seminal work Excavations at Star Carr. This work in the main concentrated on the faunal evidence available at the site. As in the Mesolithic era it was swamp and lake (now basically marsh land) the level of preservation of organic material is remarkable. This is what has made it such a fascinating resource.

The evidence in the form of faunal remains, including bones and antler, many of which show working, helps to identify the way the settlement was used and aspects of how they lived. Also because of the preservation conditions wood exists, particularly striking in the original excavation was a wooden walkway leading to a platform in the lake. There are curiosities to the remains. Whilst there is the standard use of deer and large mammals as a food source and the use of bones and antlers for tools and such, despite the fact that the settlement is on the edge of a freshwater lake and not far from the sea there is a curious lack of fish of molluscan remains. There is evidence though of the use of beaver as a food source.

Whilst it has been widely debated in archaeological circles about the nature of the settlement it is now generally thought that the site was mainly for seasonal use. It is speculated that whilst the majority of those who lived there would move on to other settlements there would have been a small core of people who remained year round for industrial purposes. This is because of evidence of skin working where the natural enzymes in the swamp edge would be used to help with the tanning process. In fact a roll of skin was found within an area penned in by wooden poles. This can only take place in summer as enzymes need to be of a certain temperature to work.

Now to return to the matter of the wooden platform out into the lake and the fact that there is no evidence of the use of fish. Now on first glance it ma appear that the platform would make a good place to land fish but as they are not used we have to look for another use for it. Yes there is the possibility of a boat landing stage and no doubt they would have used it for that, there is other evidence though. Past the end of the platform, on what would have been the lake bed, was a scatter of stone, bone and antler tools, the majority of which unused. These would have been votive offerings in a practice that started 11,000 years ago and is still prevalent in human societies. In fact, it is still common amongst people of even so-called ‘civilised’ societies although those that do it may not realise the origin of such a ritual (if you don’t believe me, consider that archaeologists, quite often amongst themselves, call it wishing well syndrome). This sort of ritual my also be, in half remembered medieval way, be where Excalibur and the lady of the lake comes from. Perhaps truth nuggets in old legends are for another time.

Now for the explanation of a lack of fish, both fresh and sea water, and of shellfish despite being surrounded by it. Sites of a similar age show the use of these fauna as a food source some quite spectacularly so. This does give a small window into the mind of this particular Mesolithic group, because if technology was not an issue and other ate it and knew it was safe what possible reason could there be. It seems then that a possible explanation would have to be that of a cultural taboo. There are plenty of perfectly nutritional things that are not eaten that are perfectly abundant that we don’t eat when you think about it. What makes this more curious is the eating of beaver, though to be honest beaver does spend some of its time on land. Whilst we can say that this does appear to be a taboo it is of course impossible to work out precisely why.

This is a bit of background and it is all from far ago memories from uni days so it’s a little bitty I’m afraid. the news from the latest dig can be found below but, bear in mind it is preliminary.

The latest release from the University of Manchester can be found in the link

and an article from The Independent

Such a long time
August 10, 2010, 8:02 pm
Filed under: life, MS | Tags:

I haven’t written on my blog for far to long. So here’s an update.

Around Christmas time I had a bit of a down and went on anti depressants. I guess my coping mechanisms failed and it finally all got to me. The fatigue got worse too. Anyways. By the beginning of January I was feeling a little better.

To be honest from that point I hadn’t even really felt ‘right’. Really I’ve just been floating along.

So zip forward to more recent times.

Well it seems I’ve had a relapse. It’s not been pleasant. About a month or so ago I became almost continually dizzy. It was hateful. So I rang my MS nurse. She’s very good, she told me to go to the GP and ask for bloods and such. My normal GP didn’t have space that day so I had to see another. He didn’t seem to think I needed tests and gave me some prochlorperazine.

It didn’t work so well. Any way the dizziness continued and i got some cinnarizine. It developed this dizziness into an unbalanced feeling in my legs and needing to pee about two minutes after drinking anything. So I booked my tests and they were negative. This basically left a relapse as the most likely cause.

So I was given a course of steroid tablets. 4 days on 500mg. This is a big dose. I will warn you now they taste disgusting. If they even so much as touch your lip on the way in it will stay there all day. I couldn’t even remove it with a polo mint!

More to the point though I did feel like my skin was on fire and my joints ached so much. Thank goodness it was only for a short time. That was last weekend.

This week I have not spent quite so much time in the loo. Which is always nice. It has felt like I have been trying to walk through treacle though. Just so tiring and getting nowhere fast. It’s gradually getting a bit better each day. I don’t feel like I did before yet.

The GP said no promises but I hope I’m not left with too much residual nastiness.

Now this is the point I guess where I say I will be a bit more regular on the blog. Because I did intend that when I started. I just hit a bad patch where I was functioning on auto pilot. I am so fed up with this being ill malarkey I can’t tell you.

A poem that I wrote back on my 1st MSiversary.
December 3, 2009, 6:59 pm
Filed under: life, MS

My Invisible Friend

Seeking concentration in the fog
Lingering in space
In depth of nothing
A place to exist
An unknowable place
Am i neither in one state nor the other?
Between life and oblivion
I am defined by
Tethered by
Held by
Feeling my way with my new friend
Finding the path
Aching so as to feel the bones in shape and form
Pain shooting to numbing fingertips
No wish to be sufferer or victim, fighter or survivor
Fear – a certain uncertianty
A new road in the mist
Difficult to comprehend
Propelling force
Snaps and gone
Why should i complain?
Others have passed this way
Invisable friend leading them blindfold
Such a rocky land
The way becomes harder
But there are others in the distance
Heading towards the cliff face
My friend or enemy
Constant attendant
Constant battle

About MS for those of you who don’t know
December 2, 2009, 7:05 pm
Filed under: life, MS

I realise that some of you reading this blog are non MS’ers who don’t really know much about the condition. I will now endeavour to explain something about it, but bear in mind that some of this is from my point of view. Everybody’s MS is different. Also if you are an MS’er please feel free to add things in the comments, I am relatively new to it so I don’t mind if you want to point out anything I have missed or said in error.


When you get diagnosed you tell your family and friends what it is, well they ask you, but at that point you don’t necessarily know yourself. It can be difficult when most people’s perception of the disease is the worst case scenario.


I am also going to steal some of my information from the MS Trust website to help me phrase what to say slightly, they do a marvellous job and you should give them money →  



So, where to start, well I suppose I ought to tell you that MS affects young people. Generally its early twenties to late forties but it is known for teenagers and older people to be diagnosed too. I think in the case of older people it may be that the diagnostic tools were just not there when they were young; it is much easier now, what with MRIs and such.


I was diagnosed at the age of 24, at the end of May 2008; I have said in previous posts that diagnosis did take a while. MS as a possibility was first mentioned to me in January of 2007 when I was 22, having gone to the hospital when I had an episode of optic neuritis.


MS is, according to current theories (there is another in the pipeline), an auto immune disease affecting the central nervous system (CNS). So what happens, well it is thought that there is a group of genes that predispose people towards MS and that these can be activated by environmental factors such as a virus, which can make the immune system attack the nerves.


Nerves are covered in a fatty substance called myelin which protects them and has been likened to the covering on electric cables. This is the part of the nerve attacked by the immune system causing de-myelination. This means that the way messages are carried to and from the brain may be disrupted. Where this damage occurs and scarring takes place, relates to which symptoms occur. Above I said that I had had optic neuritis, in that case the optic nerve was the one affected. In relapsing remitting MS, which is the most common kind, the myelin can repair, partly repair or messages can be re-routed around the scarred area (this is the remission).


That was the science bit. Now for real life. My personal MS and the symptoms I have experienced will be different to what other MS’ers have experience, the brain is actually a big place so where the scars are will be different in mine that other peoples.


I have had optic neuritis a few times twice in the left and once in the right. They are what I would describe as almost entirely better, there is a little residual affect and sensitivity to bright light. I also have a residual affect of when I feel a pain in my eye I wonder if it’s coming back again but luckily it hasn’t for a year or so.


My main issue is with fatigue. It’s hateful in both its physical and mental guises. Unfortunately like many other symptoms it is invisible. It is an overwhelming sense of tiredness that goes beyond what most people who say ‘god I’m knackered’ will have experienced. Really you don’t know the half of it. To be physically exhausted is one thing, but I found the cognitive issues associated with the mental side of fatigue slightly worse. I have sat at the till at work on several occasions and people have handed over their money and I have looked at it and thought, ‘what’s this I know it means something’. Ok, so it may have only lasted a few seconds before I sorted myself out, but it was damn scary that I couldn’t work out something so ingrained in our lives. At Uni I read a book called ‘The Meaning of Things’ I understand the intrinsic value that objects have, its frustrating.


Still it wasn’t as bad as the conversation I had where I didn’t realised until afterwards that every time I had intended to say yesterday I had said tomorrow. Shame I was being told off at work at the time because some numpty forgot to write down that I had a hospital appointment.


Ok so I have tablets that help stave that off now. And to say I loved them for existing would be an understatement.


My other issue is with pain. Until quite recently MS was considered a painless condition. How, I don’t know. I get pain in my hands often this is called I believe neuropathy; I have also had it in other areas. I have pills for that too, I am only on a low dose so I do get a bit of break through pain occasionally during the day. Its manageable but can take me by surprise. I have lately had to increase it though because of a burning sensation around my ulna nerve. Still it’s good I have somewhere to go with them if I need more.


Other than this I can get cramp and stiffness and have a few twitches. These are my day to day problems. I have had other things in the past too. I do the best I can.


Please feel free to ask me questions, leave comments or tell me I have it all wrong.

How Derren Brown Saved My Mind (or how I met a group of lovely people on the internet and regained my thought process)
December 1, 2009, 12:27 pm
Filed under: life, MS, Thanks

OK, so the title is not strictly true so before you think I am very mad let me explain….

When I left university with my shiny new BSc (hons) Archaeology I had a plan. It was a good one too. Two weeks until jury service, two weeks of jury service then, go digging. Have tent and trowel, can travel. Beautiful. Actually in the summer of 2006 there was a gas pipeline being laid through south Wales, there were many companies involved in the rescue digs as they are called. Investigating and retrieving evidence before it is destroyed, to enable preservation by record. I was going to get myself in on it.

Then in the intervening two weeks before jury service, I was sat watching TV and noticed that I had pins and needles in my left big toe, very odd. Anyway over the next few days it ended up on both sides and extending to the bottom of my ribcage. It all went numb. The GP told me I was fat. Nice.

This lasted until the end of November, I didn’t apply for a job, my hands were numb too, and having a stumbly person with a tendency to drop things on a site is not really welcome. So I started looking for a job when it went away. And I found one, they ere still doing the pipeline but the portion was not starting until the end of January and was not taking applications till after crimbo. Well that was fine with me.

At the beginning of January I went into my old work and asked about getting a reference. They said they would and also said I could go back for a month until the new job started, well I didn’t know if I would get it yet, so a back up plan is a back up plan and I was back in the shop. Then my eye went funny.

I could not see lights or red. And it had gone misty, the GP referred my to the eye unit. The ophthalmologist said I had a chance of MS and I needed to see a neurologist. This was January 2007. I realised that I would not be able to get away for my digging job. I realised I was stuck in a small town where everyone had small town ideas. I didn’t think like them anymore. Uni had been truly mind freeing. I didn’t tell anyone what they thought I had I just went for tests. I was getting more and more run down and tired. I was taking on to many hours in the shop and being made to feel guilty if I didn’t.

Over the next 18 months I had two MRIs and a lumber puncture before they diagnosed me. I was very low. I felt like I couldn’t talk to anyone properly. I was essentially wallowing in my own melancholy. It was the end of may/beginning of June 2008 when I got the diagnosis. Work was particularly unsympathetic. And it got even lower. This year my patches of confusion (related to my mental fatigue) had got worse and I had had to ask the neurologist if he could help me. So it all came about at once I guess. I started taking modafinil, which helps enormously (well I haven’t forgotten what money means in the middle of the day lately and i manage to stay awake past 4PM), and Derren’s events programmes. So I looked him up on twitter. I had had twitter a little while so that I could get research updates from the trust and the society but I had also found some MS’ers to talk to and they did help to some extent with what I was feeling, because some of them are more advanced than me though, I do find some of what they say a little harrowing sometimes.

So then obviously I found the blog. A little seam of loveliness in the blogosphere, I said in my first post that I felt like I had lately crawled out of an abyss. Well I think this was my lifeline. I managed to settle back into myself and slowly find my ability to think again. I had regained my rationality and found some sensible people to comment amongst (well I do think some of you are a bit weird but that’s ok).  I am so glad that I played that ARG with some of them. You don’t realise it but you nutty, funny, intelligent, random, lovely weirdos helped me find my mind again, in my head at least I very nearly feel my own self. I am out of the abyss and my mind is awake again.

Thanks xx

(Sorry Derren you didn’t save my mind, it was the Brownian Army, and you should feel lucky to have such amazing followers.)