Life, the Universe, MS & Me

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.

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.

MS and the media
December 4, 2009, 6:00 pm
Filed under: MS

How things are represented in the media effects public opinion of them. That is something reasonably obvious to people who live in today’s society. They way that people think of MS is therefore fairly critical if we are to be able to live the way we need to within this society.


My alter ego is another example of how things are portrayed. Archaeologists are viewed within the frame of mind of people who have watched Indiana Jones, Lara Croft and Time Team, essentially we are pretty cool and like a bit of drink (bullwhip optional). That’s all fine apart from when people what you did at Uni and you tell them and they say ‘that’s interesting’, I have yet to find an appropriate response to that (normally go for ‘it’s like Lara Croft but with slightly fewer guns and a bit more paperwork’. Though I am tempted to give them a lecture on Langdale axes, prestige goods distribution and inferring cultural taboos from the evidence).


MS also has films and TV. Its one of those diseases where, if a famous person has had it than they make a film. Well it does tell others about our condition but, inevitably the people they have made programmes and films about tend to be in the minority bracket of MS’ers. Those that have a quickly progressing form. Ok it makes for a great story, as a representation though it reinforces the view of MS in the worst case scenario.


Is this a bad thing? What is wrong with people thinking we are all going to turn into such a state? Well it does mean that people cannot respond to us at the level we need. If they purely see the illness as an outwardly obvious physical condition how can we help people see that the vast majority of us are not and will not look like we are ill. At the same time if people are not aware of this then it will be difficult to elicit the appropriate response if we require assistance. This is particularly meaningful in the work place or amongst friends and family. The point to get across being, I may have these specific problems at the moment, but I am not going to slide downhill overnight and I would like to still be seen as a useful human being.


The worst thing I have ever seen on TV though that practically made me cry were some appeal films during Comic Relief. I know they are trying to help.  You know the ones were they show kids helping with they’re MS’ers parents (parent usually and single mother most often). Those ones that say about them using some of the money to take them on holiday. What particularly hurt was that it made me feel guilty for even thinking that one day I might want a future. It made me feel selfish for even contemplating the idea. Well next time I will close my eyes and stick my fingers in my ears, I’ll be damned if I’m letting it take any other possibility from my life, it feels like its had enough already.


Well now, I hope this won’t make me unpopular but I think its time to talk about celebrities.  I am actually mostly going to talk about Montel Williams. This may sound harsh but I hope it has a point. Now Montel as we know is an internationally know figure. He could be a force for good, for helping people around the world get to see the truth of our illness, whether he likes it or not given his profile he could be seen as somewhat of an ambassador. Montel has spoken of his illness a lot on his talk show; he was one of the first high profile MS’ers I heard about after being diagnosed. I spotted him whilst channel hopping. The thing is I think in some ways he is being a bit of a hindrance rather than a help. Partly this view could be because I saw him crying about it and it was only two weeks since my diagnosis.


Now I know he does has his foundation in the US and it probably does help people, but I can’t help but think that when he does choose to talk about it he could do so more generally rather than just in relation to what he feels. I have said before that every case of MS is different, with its different collection of symptoms. Part of me thinks that this grown man with millions in the bank could afford a bit of counselling to get over his emotional issues and really help.


What he does do though, and perhaps it is a very American response, is to tell everyone to drink copious amounts of juice, buy his fitness DVDs (I understand that Motel gets pain issues but I don’t think he has encountered fatigue yet by the sounds of it, he still goes to the gym) and his book which I believe is about defeating the illness by positive thinking. Don’t get me wrong I am all for positive thinking, it’s just that some people let that get in the way of reality. Acceptance of reality is important; you have to accept something as a problem in order to deal with it. I guess this can be linked slightly to my previous post on vulnerability,, why would you do that to one of your own.


Now I think some of my issues with those with fame and portraying there illness is that they are usually settled in their career before they get ill. I will admit to being a little jealous sometimes of people who have their life sorted out before they get ill and already have a house, a career and a family. I think it must be so much easier. I have said before that I started getting ill as soon as I left Uni. I have none of these things and they seem like they may be a struggle to get to. I don’t have the energy to work full time so maybe some of these things ill never be. Maybe that’s why I think Montel should stop crying. He had his life set up. I have a massive student loan and an overdraft on my graduate account that is no nearer being paid of than it ever has been. And I’m back in the box room. Envy is probably very bad.


We have to see how people view it. Is their view that MS’ers have no problems at all and can cope with these jobs, well again it depends on your personal MS. So that people see not just the worst case scenario, and not just these media types crying on TV and advocating alternative remedies (in some cases), they should be made aware of the reality of the normal average MS’er (for all that there can be one) to enable us to live better. And those with access to worldwide media ought to highlight issues that the rest of us deal with.

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.)

MS and Vulnerability
December 1, 2009, 11:06 am
Filed under: MS | Tags: ,

Today i have been thinking about how people with MS can become vulnerable.  Actually i have been giving it thought for sometime.

By being vulnerable i don’t mean the vulnerability that can come with some of the obvious aspects of  our condition such as the mental and physical things, but rather the vulnerability that can come from a need to make ourselves feel ‘better’ or at least more normal.  Also the continuing hope for a cure that my possibly lead us down paths that are not necessarily good for us purely on the basis of this hope. i believe it is a powerful thing.

I think that because we are incurable and are trying to manage our symptoms, particularly those otherwise unseen by others, we can be prey to those who wish to tout their latest idea and claim to help us feel ‘normal’ or in some cases cure. Does the hope we feel leave us more vulnerable to taking these things on, does it in fact make us lose our rationality. i think in some cases it might.

We know that even some of the traditional medicine we get is not tested for our condition and while it is found to work for some of us the numbers maybe small. We try everything until one works. Mind, though, that they are not prescribed unless they have worked. i know that one of my medications only works on 36% of MSers. 36% is better than nothing and i find it works for me and obviously i am grateful.

MSers, we know that every day we can hear of some new theory or treatment that claims to help. i am almost certain that if we do manage to look at these things rationally we may find that most of them do not add up. We strive for things that will make us feel better, we clutch at straws. We should i think try and lay aside the emotions we may feel and see if these straws might actually be attached to something solid.

Lately we have been offered new research from italy in the shape of CCSVI, if you haven’t heard of it yet (unlikely) it is a supposition that MS may not be immune related but in fact be caused my constriction of the veins in the neck and chest that drain blood from the brain. It is being touted by some who have got hold of it as leading to a cure the so-called liberation procedure. The links with MS, according to the society’s of the US, Canada and the UK, have not yet been proven. Some people have criticised them for saying this. I don’t. They also say that they support the research and that they do not wish to say one way or the other whether they are going to promote it.

I think that some times it is best to have the courage to say ‘you know what? i don’t know yet’ . in some cases not knowing what to think may in fact, be the correct response. i think this is one of those times. we don’t know, so lets not get over excited but support the research.

Yesterday the UK Government had a discussion on homeopathy and its labeling. this is leading to much discussion in this country. As MSers do we rely on alternative treatments too much because traditional medicine fails us? Do we fall into the ‘you can get yourself better in one easy step if you part with £s and buy this book’ trap. In desperation i think that some people may do. It’s this that makes me feel vulnerable. that i am being battered on all sides by people who claim to be able to make me better. what if one day at a low ebb i lose my rationality and succumb to something that at this time i would declare as nonsense put about by nutjobs.

But then if it does make you feel better…

Come on now, we know a nice lie down can ease our fatigue and pain a little. Wouldn’t that be a bit cheaper than aromatherapy or acupuncture?