Me, My MS and I


The Spoon Theory

It’s often difficult to explain the impact of MS related pain and fatigue etc on your daily life. The Spoon Theory was created by Christine Miserandino to explain to a friend how lupus affects her day to day life. It’s a fantastic, simple and visual way of explaining to friends and family the limits that are sometimes placed on the amount you can do in a day. From personal experience, I’ve found that people can sometimes find it difficult to understand that you have to prioritise what you wish to accomplish in a day, and accept that some of it may not be possible.

Although this isn’t always the case and there are days we can do whatever we like, The Spoon Theory is especially helpful as an explanation when limited days are an uncommon occurrence and it may be even more difficult for people to understand when these do happen as they are so rare. Even if you don’t need to explain to anyone, it’s a great read very insightful, and well worth the time to read.


5 Top Tips For Those Newly Diagnosed With MS

I wrote this short blog post for Wego Health’s September blog post competition, and it’s been warmly received, so thought I’d post it here too.

I wanted to write these tips with those newly diagnosed with MS as part of the September Health Activist Blog Carnival. I was diagnosed with MS over a year ago, and fortunately took it all in my stride, but everyone’s different, and I felt these tips would help anyone newly diagnosed with MS.

Stay positive! : ) – often, a diagnosis of MS can be upsetting, and seem awful at first, but life is still fab with MS. The negative points are often thought of first, and can swim through your head, but MS can be well managed and there are many medications and treatments such as physiotherapy which help a lot. Your life continues; just along a slightly different path, and you learn to adjust to achieving the same result through different methods. There are also some amazing MSers out in the world of the internet who’re a great support, lovely people and very positive and informative.

Tackle your feelings regarding your diagnosis – a diagnosis of MS can sometimes come as a shock, out of the blue, and there are a range of emotions to be tackled. Don’t ignore them: tackle them head on and acknowledge them. The only way to deal with these emotions and move through them is to recognise them and give them their place. Talk to people about them; your family and friends, and as they say, ‘a problem shared is a problem halved’! Vocalising your feelings also helps.

Research – the more you know about your MS and the options avilable for management or treatment, the better placed you are to understand your MS and what treatment and medication may be available to you. There’s a huge amount of information on MS available, and it can be overwhelming at first. Stay calm and work your way through it, approach the information clinically to decide what is relevant to you and what is not. It’s empowering to know what’s happening to your body, and what’s causing it. You feel more in control, and this helps a great deal when living with MS.

Keep in close contact with your healthcare team – your healthcare team is an incredibly valuable resource, and they can help you with many things. Apart from the obvious prescribing of medication and providing treatments, they’re also a great source of information and advice, and can be very beneficial to you, especially during the early days post diagnosis. They’re also very supportive, and can often point you in the right direction of resources, support, or fun things to do. Decide with your healthcare team how you want to manage your MS it’s your body and your choice to choose from the appropriate options provided to you.

Start a blog – writing down your feelings, what’s happening, charting your progress, or anything you want to talk about can help you to organise your feelings and thoughts into a neat bundle for you to process. It’s cathartic to write what you’re feeling and thinking, and what you’re experiencing, and providing information for others not only helps them, but it helps you too. I found a sense of purpose from writing an informative blog, and learned a lot myself in the process. Blogs can be kept private, so nobody in the world can read them except you. If you don’t want to share your thoughts and feelings with the world, it’s a very handy option to keep your blog private but still reap the benefits of writing it.


Jewellery Clasp Aids

I came across this handy device which aids in fastening and unfastening bracelets and necklaces, from Scotts of Stow: http://www.scottsofstow.co.uk/Bracelet-and-Necklace-Buddy-Range/Product1_22051_-1_17054_10551 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: http://www.scottsofstow.co.uk/Necklace-Buddy-Magnetic-Clasps-4/Product1_22051_-1_17766_10551


Medication In Profusion

Image: Paul / FreeDigitalPhotos.net

A multitude of medications often goes hand in hand with living with MS. It’s important to know the purpose of each of your medications and when and how to take them (such as with or after a meal, or with a glass of water). It can be difficult to remember all of the medications you take as it quickly becomes habit to take the tablets as routine.

The situation may arise where all members of your healthcare team may not be aware of all of the medications you are prescribed if they’ve been prescribed by different people, such as your GP, neurologist, etc.

There are a few tools available to keep track of your medication and to have your medication list on hand in case of emergency. It’s also helpful for you, and anyone who cares for you, to know all of the medications you take and their purpose.

What’s available?

A medication chart to list: name of medication; dosage; and what it’s for. There’s also a one-sided version which you may prefer. It may also be benificial to fold this to credit card size and keep a copy in your wallet / purse. Taking this chart with you to all appointments with your healthcare team, and keeping it up to date, can ensure all members of your healthcare team are kept up to date with all of the medication you are currently prescribed.

The Lions Message In a Bottle scheme is a simple idea designed to encourage people to keep their personal and medical details on a standard form and in a common location – the fridge. Message in a bottle to store in the fridge a list of the medication you take. This is especially handy if you live alone. In the (hopefully never occurring) event that you require paramedic assistance at home, the paramedics are trained to look in the fridge for medication lists, and a sticker provided with the Message In A Bottle stuck on the front of the fridge alerts the paramedics that medication information is located inside. The bottles are free of charge and should be available from your local pharmacy. Further information is avaiable via the above link.

I also find it very useful to keep my repeat prescription list in my purse in the event that I have an accident and paramedics require a list of my medication (especially as I’m often passenger on a motorbike!). The repeat prescription list is very useful as it lists all medications, dose, and frequency. I always have a note attached to it stating I’m also on opioids (stating medication name, dosage and frequency) as they’re not available on repeat prescription so do not appear on the repeat prescription list.

A MedicAlert bracelet or piece of jewellery indicating your illness and prescription medication may also be useful in case of emergency, especially if you’re taking vital medication or medication which reacts with others.

A medication review may be of benefit as you can ask your doctor or pharmacist what each of your medications is for, when and how to take them, if there’s anything else which would benefit you, and afford you the opportunity to discuss any issues you may be having with your medication and how these could be solved. This may be especially beneficial if you are experiencing unwanted side effects, or are unsure of the purpose of the medications you take.

It is also important to report side effects experienced which aren’t reported in the patient information leaflet which accompanies your medications. You can do this via your doctor, pharmacy, or via the Yellow Card Scheme.

By discussing any difficult or troublesome side effects of your medications with your doctor, you take your healthcare into your own hands and have the potential to improve your quality of life by reducing, where possible,  side effects which impact on your life. Your doctor may be able to prescribe you a similar medication with fewer side effects, or advise you on ways to reduce the side effects you’re experiencing.

Paul’s photo portfolio: http://www.freedigitalphotos.net/images/view_photog.php?photogid=1526

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 : )


The Usual Suspects – Pain

As found in the study by Archibald CJ, et al. Pain, prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain 1994; 58 (1): 89 – 93, “more than half of people with multiple sclerosis will experience pain at some stage.”

Pain only shows in tension on the face, occasional winces, snapping at people and difficulty performing tasks or moving. To look at me, you wouldn’t know I suffer from chronic pain. Many people with MS suffer from pain; whether it be neuropathic (caused by demyelination of the nerves) or musculoskeletal, and suffer in silence. It’s debilitating and tiring, and can disturb sleep; all of which can make life difficult. A proportion of those who suffer chronic pain also describe it as demoralising.

Severity and frequency of pain differ from mild to acute and from short term to chronic, but pain has the same effect regardless – it saps energy, reduces concentration and can be distressing and affect mood. Snapping or being short with family and friends, and being quiet are outward signs, but with no visible reason behind this behaviour, it can often cause difficulty in relationships unless it’s known by others that the cause is pain.

MS related pain can be split into two categories: neuropathic pain, and musculoskeletal (or nociceptive) pain.

Neuropathic Pain

Also known as nerve pain. It is thought that this arises as a direct result of the damage to the covering of nerves interfering with the normal transition of information to the brain. However, the origin of most nerve pain is not fully understood. 1

Nociceptive Pain

Nociceptors are pain receptors found throughout the body that respond to injury and information. They send messages to the brain that are perceived as pain, usually in the joints or muscles. This type of pain is not directly related to MS, but may be exacerbated by it; for example, musculoskeletal pain can arise as the result of spasms or abnormal pressure on the muscles and joints due to changes in posture, typically in the back or hips. 2

Commonly we think of pain as a headache, or as the result of an injury. However, many MS symptoms are classified as pain. “Dysaesthesia or paraesthesia, is a medical term for uncomfortable, abnormal sensations, such as pins and needles, burning or crawling feelings, numbness or tightness for which there is no external cause. Although these are often experienced as affecting the skin, the sensation is is caused by interrupted nerve messages in the central nervous system. These feelings are classed as pain symptoms.” 3 Dysaesthesia covers a wide range of MS symptoms, including: the MS ‘hug’ or ‘band’; tingling; loss of sensation (numbness); pins and needles; changes in sensation on the skin; pain (both chronic and sudden, acute); skin feeling wet in patches; and burning sensation. This list is not exhaustive, but gives an idea of the array of symptoms classified as pain.

Neuropathic Pain

Myelin covers the the nerves of the central nervous system and allows for the smooth and speedy communication of messages between the brain and body.

Image courtesy of the MS Society Website

MS is classed as an autoimmune disorder, and as such, the body’s immune system ‘attacks’ the body as it confuses healthy tissue within the body (in this case Myelin) for an infection or bacteria. Myelin is attacked by MS and this damages the covering of the nerves, stripping the myelin and affecting the flow of messages throughout the central nervous system. Left behind by this damage to the myelin and nerve fibres are plaques, or lesions, from which multiple sclerosis derives its name – ‘many plaques’. The damage to the myelin can result in miscommunication of messages between brain and body, or cut them off completely, causing the symptoms of MS, including neuropathic pain.

In addition to the loss of and damage to myelin, the actual nerve fibres themselves can also be damaged. This damage to nerves is what causes the accumulation and progression of disability over a longer period of time.

Demyelination

Image courtesy of MS Society Website

Nociceptive Pain

Muscle spasms, spasticity and stiffness associated with MS can also cause pain. I’ve written a separate blog post on these symptoms as they’re a large part of life for many people with MS and deserve a full post. I’ll post it at a later date. “20% of people with MS will be affected by muscle spasms, stiffness and spasticity at some point.” National Institute for Clinical Excellence (NICE) Clinical Guideline 8. Multiple Sclerosis: management of multiple sclerosis in primary and secondary care. London, NICE.

Pain is a very individual symptom, and subjective: each person with MS will experience pain differently. It is also incredibly difficult to explain the sensations experienced and what form the pain felt adopts. Many people  with MS find it difficult and frustrating to put the symptoms into words to explain to others what they are experiencing. This requires an amount of understanding on the part of friends, family and healthcare teams.

Contributing Factors

There are many factors which contribute towards increased pain levels in MS, including: heat; tiredness; infection (as it increases immune system activity and raises temperature); illness (increases temperature and immune system activity); and stress and emotional stress can also cause increased pain levels.

Pain management in MS is a wide and complex topic, so a separate pain management blog post will follow.

USEFUL LINKS

Pain InformationMSRC:

Pain- http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=752

MSRC: Spasticity:

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1658&CFID=1938348&CFTOKEN=99797465

MS Society: Pain and Sensory Symptoms:

http://www.mssociety.org.uk/about_ms/symptoms/pain_and_sensory_symptoms/index.html

MS Society: Muscle Spasms and Stiffness:

http://www.mssociety.org.uk/about_ms/symptoms/muscle_spasms_and_stiffness/index.html

MS Trust: Pain:

http://www.mstrust.co.uk/information/publications/factsheets/pain.jsp

MS Trust: Spasticity and Spasms:

http://www.mstrust.co.uk/shop/product.jsp?prodid=282

Pain Concern:

A charity offering information and support for people who experience pain by people who experience pain. Provides a ‘listening ear’ helpline: 01620 822572        www.painconcern.org.uk

MS Society: Free Publications:

http://www.mssociety.org.uk/support_and_services/free_publications/index.html

MS Trust: Tips for Living With MS:

http://www.mstrust.co.uk/information/publications/tips/

Open Door – A free quarterly newsletter from MS Trust:

http://www.mstrust.co.uk/information/opendoor/

References

1  – 3: MS Trust

Archibald CJ, et al. Pain, prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain 1994; 58 (1): 89 – 93

National Institute for Clinical Excellence (NICE) Clinical Guideline 8. Multiple Sclerosis: management of multiple sclerosis in primary and secondary care. London, NICE.

MS Society



The Usual Suspects

The symptoms of MS vary, but there are some ‘classic’ symptoms which I like to call The Usual Suspects. They also happen to be ‘silent’ symptoms, which aren’t outwardly apparent. This leads to MS having a relatively low profile and makes it more difficult to understand as it’s a ‘silent’ condition for the most part.

I’ve been working on this series of blog posts over the past few months and will post them in the coming weeks and months to hopefully raise awareness and remove some of the taboo associated with discussing certain MS symptoms.

There are also some resultant issues, such as motivation, which I’ve tried to cover.

I don’t suffer from all of these symptoms so have researched as much as possible into the ones that I don’t have any experience of.

The planned blog posts cover a range of topics:

  • Pain in MS
  • Pain management
  • Spasticity, muscle spasms and stiffness
  • Fatigue and fatigue management
  • Bladder and bowel problems
  • Cognitive function
  • Drop foot
  • Sexual dysfunction
  • Balance
  • Visual problems
  • Self confidence
  • Motivation
  • Mobility
  • Dexterity
  • Dealing with the unknown (progression etc)
  • Accepting diagnosis
  • The diagnosis process
  • Symptoms to look out for

If there are any I’ve missed, please feel free to add a topic in the comments and I’ll do a post on it.


Barts and The London MS Research Day 2010

Many thanks to Dr Lindsay A Keith (@OpheliaBottom) for bringing this series of fabulous videos to my attention on Twitter. I’ve spent some time watching the videos and felt it was only right that I shamelessly spread the word on my blog and Twitter! Please feel free to do the same, as the wider the audience this information reaches, the better.

The Neurology Department at Barts and the Royal London Hospital presented their research findings to clinicians, scientists, researchers, MSers and their families on 31st January 2010 and the presentations are shown on Dr Keith’s YouTube channel: http://www.youtube.com/user/linzkeith#g/c/C5BBC29967E2E7E9 The clips are succinct and packed full of information useful to both newly diagnosed MSers and those of us who have been diagnosed for some time, and are well worth watching.

To many MSers, it feels as though MS is very much a ‘forgotten’ disease. Having watched this series of videos from the Barts and London MS Research Day 2010, it has reaffirmed my view that many gifted, intelligent and passionate people are attempting to understand and fight MS. Knowledge is empowerment, and without it we cannot begin to understand or fight MS. To know your MonSter is to fight it. The people behind the research and knowledge presented at the Barts and London MS Research Day 2010 deserve a huge thank you.

I found Rachel Farrell’s presentations on Neutralising Antibodies and Interferon, and how the research is being used to benefit patients in the clinic, of particular interest.

There are also a couple of videos on CCSVI, showing a presentation by Klaus Schmierer, which are extremely interesting and more than worth a look, regardless of your position on CCSVI.

Also of note is a presentation by Alison Thomson detailing how she aims to engage MSers with MS research through the medium of art: http://www.youtube.com/watch?v=7nNGBseO_zE I’m extremely passionate about all MSers being able to access and understand MS research at all levels, and I feel Alison’s method and ideas are extremely exciting and conducive to engaging MSers with MS research.


Shifting MS

One of my Twitter friends, and fellow MSer, Gav (@thehappycovv), has helped to create  the fab documentary below called “Shifting MS” alongside Gloria Morris, who worked tirelessly producing the film. It’s absolutely brilliant and I couldn’t agree more with the sentiment – I may have MS and it may be rubbish at times, but I won’t let it get in my way.

I’m all for inspiring people to fight MS and live their life to the full. The young people in this documentary inspire me to do more, and it’s very uplifting. If you enjoy “Shifting MS”, please pass on the link to Gloria’s YouTube page!

Shifting MS – “We follow a group of young MSers and their families as they share their stories and experiences of being diagnosed with MS at such a young age and how they don’t intend to let it stop them achieveing their goals in life. Featuring interviews with consultand neurologists Dr Simon Shaw and Dr Martin Lee as well as MS specialist Physiotherapist Kate Goddard.”

You can also find the documentary on YouTube at this link: http://www.youtube.com/watch?v=59HQ6v_5_EM&feature=player_embedded


MS Society Cake Break

After ordering my cupcake cases and piping bag online today for the Cake Break I’m holding at work on 30th April to raise money for the MS Society, I thought I’d better get blogging and spread the word!

What Is A Cake Break?

It’s a fun and easy way to raise money for the MS Society and show your support for people affected by MS. You can host a cake break at home, work, or anywhere you please, the idea is simple: invite some friends / family / workmates to your chosen venue on your chosen date and eat cakes (baked or bought); drink tea, coffee, or anything you wish (!); enjoy a good natter and raise some awareness; ask them to make a donation, and watch your contribution to the MS Society grow!

How Do I Get Involved?

Visit the MS Society’s Cake Break home page for information and loads of tips: http://beatms.mssociety.org.uk/NetCommunity/Page.aspx?pid=422 and request a Cake Break pack full of useful tips and some goodies to help you on the day. Choose a date to hold your Cake Break and where you’re going to hold it, and send out invites (the MS Society has some fabulous pre-made ones you can download here: http://beatms.mssociety.org.uk/NetCommunity/Document.Doc?id=543 and some posters to put up: http://beatms.mssociety.org.uk/NetCommunity/Document.Doc?id=544 ).

How The Money You Raise Will Make A Difference:

£76 could fund the MS Society helpline for one hour

£200 could pay for a day’s respite care, providing a vital break for a carer

£500 could fund an MS specialist nurse for four days

These may seem like large amounts of money, but small donations from each Cake Break held quickly add up and translate to a huge amount of help for the MS Society, MSers, carers, and people affected my MS.

A Little Recipe To Help You Get Started:

Marshmallow Cupcakes

Ingredients:

120g plain flour

140g caster sugar

1 1/2 tsp baking powder

a pinch of salt

45g unsalted butter, at room temperature

120ml whole milk

1 egg

1/4 tsp vanilla extract

12 medium pink marshmallows

200g mini marshmallows, for the frosting

Vanilla frosting (recipe below)

edible glitter to decorate

Method:

Preheat the oven to 170°C (325°F) Gas Mark 3 (adjust temperature according to manufacturer’s instructions for fan ovens)

Put the flour, sugar, baking powder, salt and butter in a freestanding electric mixer with a paddle attachment (or use a handheld electric whisk) and beat on slow speed until you get a sandy consistency and everything is combined. Gradually pour in half the milk and beat until the milk is just incorporated.

Whisk the egg, vanilla extract and remaining milk together in a separate bowl for a few seconds, then pour into the flour mixture and continue beating until just incorporated (scrape any unmixed ingredients from the side of the bowl with a rubber spatula). Continue mixing for a couple more minutes until the mixture is smooth. Do not overmix.

Spoon the mixture into the paper cases until two-thirds full and bake in the preheated oven for 20 – 25 minutes, or until light golden and the sponge bounces back when touched. A skewer inserted in the centre should come out clean. Leave the cupcakes to coool slightly in the tray before turning out onto a wire cooling rack to cool completely.

Put the medium marshmallows in a heatproof bowl over a pan of simmering water. Leave until melted and smooth. When the cupcakes are cold, hollow out a small section in the centre of each one and fill with a dollop of melted marshmallow. Leave to cool.

Frosting:

250g icing sugar, sifted

80g unsalted butter, at room temperature

25ml whole milk

a couple of drops of vanilla extract 

Beat the icing sugar and butter together in a freestanding electric mixer with a paddle attachment (or use a handheld electric whisk) on medium-slow speed until the mixture comes together and is well mixed. Turn the mixer down to slow speed. Combine the milk and vanilla extract in a separate bowl, then add to the butter mixture a couple of tablespoons at a time.

Once all the milk has been incorporated, turn the mixer up to high speed. Continue beating until the frosting is light and fluffy, at leats 5 minutes. The longer the frosting is beaten, the fluffier and lighter it becomes.

Stir the mini marshmallows into the frosting by hand until evenly dispersed.

Spoon the frosting onto the cupcakes and decorate with edible glitter.

This recipe is from The Hummingbird Bakery Cookbook  http://hummingbirdbakery.com/flash.html#home_in

 


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