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

I need help
August 21, 2011, 10:54 am
Filed under: Uncategorized

Hi. Long time no write. Technical and health difficulties.
Anyways, right now I need a car. I only drive autos. I don’t work full time so can’t get credit.
If anyone has any ideas they are gratefully accepted.

I’m just getting so tired. It’s difficult walking to work and arriving exhausted.


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.