Me, My MS and I

Category Archive

The following is a list of all entries from the Random category.

Carers Week 2011

This week (13th – 19th June) marks Carers Week 2011. Carers are in many ways unsung heroes, and should be lauded. If you’re a carer, or know someone who is, get involved! : )

There are events on round the country in support of carers week, and you can find out more here.

The MS Society has joined forces with 9 other charities to support Carers Week. Have your say on life as a carer on their annual Carers Week online survey. The theme of this year’s Carers Week is ‘The True Face of Carers’, which aims to recognise the 6 million carers across the UK.

MS Week 2011

Time flies, and MS Awareness Week has rolled round again! This week sees many things going on in support of MS Week. MS is in many ways a silent disease with hidden symptoms that aren’t always outwardly apparent, such as pain and fatigue. As a result, many people who aren’t affected by MS in one way or another don’t know terribly much about it. MS Week and World MS Day are our chances to raise awareness of MS and spread information.

World MS Day falls in the middle of MS Week, on Wednesday 25 May. You can sign the 2011 campaign for access to appropriate work petition here.

What’s happening during MS Week?

Putting MS On The Map

The MS Society UK has launched the MS Register – “This globally unique research tool is the world’s first, for any condition, to combine anonymous and confidential information from patients, with clinical data and routine NHS information. The MS Register could have a profound effect, and transform the delivery of care and services for people with MS.” You can find out more about the MS Register and join online, helping to put MS on the map.

There are also Map MS roadshows planned, and it’s not too late to get involved in a Cake Break and raise money in a yum way! Get involved

Be Bold In Blue

The MS Trust has lots planned for MS Week – you can find out more here. Their Be Bold In Blue fundraising event on the 27th May is a great way to get involved and raise money in a fun way, such as a cake sale, or a blue themed quiz night.

Go Green

Go Green for the MSRC and let people know what you live for, and that life is for living! There are also scheduled chat room sessions being held on the MSRC website.

It’s great to know that so much is being done to raise awareness of MS, especially as it’s the most common disabling neurological condition affecting young adults in the UK – a stat that’s very close to my heart as I’m only 24 and often meet with exclamations of surprise that I have MS at my age (and have had for several years). The more people that know about MS and understand it, the better it is for everyone as it removes the mystery and fear factor.

Many of the activities are fun and easy to get involved in. You don’t have to have MS to participate, either. Go ahead and get involved! : )

Martyrdom Ain’t For Me, No Siree!

I’ve come across many instances of describing people with MS as ‘MS sufferers’ recently. Everyone prefers their own terms, as it were, or none at all. It thoroughly annoys me that others take it upon themselves to decide I’m a ‘sufferer’ and to describe me as such. I’m not planning on being up for martyrdom, so no ‘suffering’ with quiet dignity for me, thanks! I plan to grow old disgracefully and have a whale of a time doing it!! I’m a person that happens to have MS (and it’s *my* MS thank you very much, so hands off with the descriptions and names!!), not MS that just happens to have a person attached. We’re people, not a condition. Consider the mental health campaign slogan: see me, not a label.

I prefer to have a riotous time during the good times and enjoy them thoroughly, and although the bad times aren’t great, I decided to kick my MS in the arse and fight it every step of the way (even if it means throwing sand in its eyes!), as opposed to ‘suffering’. Suffering implies a passivity that no MSers whom I know subscribe to. We’re all fab, super folk who are determined and stubborn and fight our MS every step of the way. These are our bodies, it’s our MS, and we decide how we describe ourselves.

Perhaps some people with MS don’t mind at all being described as a ‘sufferer’, and that’s their choice which they make and are happy with. Everyone is entitled to their own opinion, but before the next time you decide to call someone with MS a ‘sufferer’, consider if you have the right to – are we really ‘sufferers’, and what gives you the right to decide if we are?

Jewellery Clasp Aids

I came across this handy device which aids in fastening and unfastening bracelets and necklaces, from Scotts of Stow: It looks like it could really be of benefit to any of us who have trouble with dexterity and manipulating fiddly jewellery clasps. I’m sure there are others available too if you search with Google.

They also sell necklace buddy magnetic clasps, which are attached to each end of a necklace, and close the necklace magnetically, rather than having to fiddle with the clasp:

Dee Dee, Johnny, Joey et al…..

After a conversation with some of my fellow #msposse mates on Twitter about what we name our MS lesions, I revealed I’ve named mine after The Ramones, so I thought I’d share it on here too. Some people also name the floaters in their vision. One lady has named her two biggest lesions Ed and Brian.

It may sound flippant or childish, but I think it’s a fun way to personalise them and they are, after all, part of my body, and I’d rather embrace them and ‘make peace’ with them than bemoan their existence – they aren’t going anywhere any time soon!

I’m not entirely sure why I chose The Ramones, but the number of band members and the number of my lesions tally, and I love the band, and so it became! Although if the number of my lesions increases, I’ll have to add some more names and they’ll perhaps become ‘honourary’ members of my Ramones. Somehow I don’t think Roger or Nigel would fit in with the theme, so this may take some serious thinking!

As people living with MS, it never ceases to amaze me how much we rock! Faced with adversity at times, we never lose our sense of humour and carry on regardless. As the hashtag we use on Twitter says, #MSersRock : )

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