Thanks for coming by!

Living with multiple sclerosis is ‘interesting’! Anyone who has this condition knows that only one thing is certain; their experience is unique to them. It’s a ‘snowflake condition’ – everyone with MS experiences it differently. It’s one of the reasons why it’s so difficult to diagnose and to manage. Hence the ‘interesting’!

At the moment, every day is a snowflake day – I just don’t know what MS has in store for me when I wake in the morning. Some days are great, when I feel like my old self, packed full of energy and verve, ready to take on the world. Then there are days when the grey fug of fatigue envelopes my whole being – just getting through the day can seem like an impossible challenge. Sometimes my hands are so weak I can’t hold things properly, or my arms burn, like they’re on fire. Or my legs are so restless and twitchy that it’s hard to hear the TV. Or my foot is numb, my leg shoots pain, my ears ring, my eyes go blurry, my head is in a clamp…… I could go on, but then it will turn into a list of complaints.

Complaining is not what I want to achieve in this blog. I want readers to understand more about this crazy condition, about what it is going on inside us snowflakes. And to maybe have a bit of a laugh as well, as a giggle always help!

Incredible athletes

olympic stadiumI went to my first live athletics event on Saturday at the Olympic Stadium in London. It was very exciting! We had a long jump competition in front of where we were sitting, and there was high jump, javelin and shot put going on elsewhere whilst a whole assortment of track qualifiers and finals were taking place. A large and vocal crowd enthusiastically cheered the winners and supported the losers with applause and waves of admiration and appreciation.Super-fit, talented athletes participated in hard fought competitions as gold medals were won, world records set and a whole raft of seasonal and life-time bests were logged. It was an amazing sporting spectacle,

The athletes themselves seemed to really enjoy the competition, in particular the support they received from the crowd. Of course we were biased, with the Brits (and Irish) receiving the biggest cheers, but no-one was ignored or shouted down; being close to the long jump, we joined in with the supportive rhythmic clapping for whichever athlete asked for it, even though at one point it seemed to help push our guy into 4th place and therefore out of medal contention. He’s still young, competing in his first world championships; I predict big success for him in the future!

Athetics picAt the end of each final race, the winners took their lap of honour, many coming close to the crowd. Being a Saturday, there were lots of families there; as the victors came near by, lots of the kids ran down to the front to get a chance to give their new heroes a high five, or grab a selfie, and they were rarely disappointed. Some athletes seemed to take an age to complete their circuit!

All this excitement and interest is an amazing legacy of the 2012 Olympics. For this was the World Para Athletics we were attending, the top of disability sport. The incredible long-jumpers in front of us were partially-sighted, the javelin throwers had major co-ordination issues and as for the one-legged high jumpers, well that was one of the most inspiring things I have seen! Wheelchair athletes and runners competed on the track (not at the same time of course!); the times recorded were stunning. Nothing was going to hold them back.

20292861_10155576614256057_1734794730651732546_nI was thrilled to see Kadeena Cox race in 100 metres. I find this young woman so inspiring. Already an athlete, she was suddenly diagnosed with multiple sclerosis when she was 22 and it looked like her sports career was over. But she fought back and has fulfilled her potential with so many achievements. How she puts her body through the rigours of training and competing is beyond me; she won the 400m sprint on Friday to then compete again on Saturday, despite being up half the night with muscle spasms. That is dedication!

Some are quick to criticise her, but I’m not sure why. She is, after-all, only continuing with her chosen career (athletics). She is quite open and honest about how she is making the most of it whilst she can, as she just doesn’t know if she will be able to do it tomorrow. It’s easy to criticise, harder to do what she does! If she inspires others with MS not to give up and make the most of their situation, whatever that may be, then that’s to be applauded.

I am so glad to have experienced this incredible day of sport; we have tickets to see the World Athletics Championships also at The Olympic Stadium next month so it will be interesting to compare the two events. I’m sure there won’t be quite as many families there though, as the price of tickets is incomparable! Lets hope everyone who is there enjoys it as much as we all did on Saturday.

Just keep moving

It’s ages since my last post! There’s been lots going on, but also I’ve been feeling really rough for weeks and didn’t feel inspired to write. My aim for this blog is not as a tool for complaining!

I still feel rough, not sure why as all my test results are coming back clear (horray!), but I’m finally inspired to write again, mainly because I put my running shoes on and went for a jog/stagger this morning. It was slow, it was short and it showed me how unfit I am but I am feeling very pleased with myself because:running shoes

  1. I didn’t fall over!
  2. I didn’t have to walk as much as I thought
  3. I did it!

Running (although I’m not sure my efforts can be classified as that!) may seem like an odd thing to do with a condition like multiple sclerosis, but if you can, why not? Research shows that exercising and staying as active as possible is really important for people with MS – just as it’s important for everyone, really. Humans are designed to move, and when we stop, it creates a whole mixture of problems. Muscles break down surprisingly quickly, so it really is a case of if you don’t use it, you lose it.

There is some research that suggests exercise releases two proteins that can help stimulate neurone repair which can only be good. It is also supposed to help with cognitive function – anything that helps with brain fog is good – and help to reduce fatigue, even though that seems counter-intuitive. And exercise releases endorphins, the happy chemicals, so helping with depression and also pain.

So what finally got me to get my butt in gear and get out there? Inspiration, from both the para-athletics currently on in London and a chap I met on Thursday.  Despite having primary progressive MS which has led to muscle wastage and reduced movement on one side, he’s discovered the power of exercise and is managing to regain some use on his affected side as well as increased energy and positivity. Awesome!

paIf you haven’t seen any of the para-athletics yet, it’s on channel 4 all week and really worth a look. Some amazing athletes of all ages, shapes and size competing at such a high level, it really does inspire me. Not that I want to compete with anyone other than my own negativity – I’ve never been one for competitive sports! We have tickets to the final day of competition next Saturday which I’m really looking forward to – we bought them after watching the Paraolympics in Rio. There’s still some for sale (and they’re really not expensive), so if you feel like being inspired too, or just want to go and give your support and admiration to an amazing bunch of people, get on-line and grab some before they all go. Check out this link https://www.paraathleticschampionships.com/tickets

I’m sure I’m going to ache a bit tomorrow, but this time it will be a good ache! And I’ll be getting my trainers on again in the week – I have a very slow time to beat!

 

Group awareness

Logo_Stacked_colour_2017ENIt’s World MS Day today. Not exactly a celebration, but an opportunity to raise awareness and understanding about this baffling condition, as well as raise some much needed funds for the various national organisations. There’s approximately 2.3 million people around the world with MS; looking at the World MS Day website, it’s amazing how many organisations are involved.

There are a number of fabulous MS organisations in the UK offering a whole range of information, raise funds for medical research and provide social support. For the UK, World MS Day is supported by the MS Society. I recently volunteered with my local group, and just happen to have attended a volunteer forum today for an update about what is happening locally and nationally, plus learn more about the role I’ve undertaken.

HELPING HANDS PICWhen I was first diagnosed with MS last year, I was torn between wanting to meet some other MS’ers and never meet anyone else. Eventually, I met up with a lovely friend’s husband who lives with MS. I realised that it actually helped to talk to someone else who has direct experience and knows immediately what you’re dealing with. Friends and family are amazingly supportive (and I am so grateful for their love) but ultimately don’t really ‘get it’ (and thank goodness for that!). Then in September last year, filled with great trepidation, my hubby and I went along to MS Life, a big exhibition held by the MS Society at the Excel Centre in London. Neither of us were sure about it, but actually it was really worth the trip. Not only did we get lots of useful information, and some freebies, I left with a desire to join my local group.

But it turned out my timing was seriously off! After some hunting, it came to light the local group had folded and there was nothing going on. In my quest, I ended up meeting up with the area volunteer co-ordinator, and, of course, because I can’t help myself, ended up agreeing to be the local person to provide support and information (exactly what I’d been looking for in the first place!). I’ve always found that in helping someone else, I help myself.

Meeting up with volunteers from the other groups today made me realise how much grass-roots help is out there. With a dedicated team, and no doubt a lot of time, there’s a whole rangejoining-770559_1920 of activities from traditional coffee mornings to pub visits, seasonal socials and monthly activities, exercise classes and fundraising and a whole host more. But not just for people with MS but the people who have to live with them. It also made me realise how little I know about what’s available through the national organisation too, but there’s plenty of time to learn that!

So, on World MS Day, I feel truly grateful for all the local, national and international organisations that help raise funds and awareness, lobby governments, fight for rights and just offer a helping hand and some friendly support and advice for 2.3 million MS snowflakes like me. We may all be different, but we don’t need to be alone.

 

Stop nibbling my lagging

Donald Rumsfeld, previous US Defence Secretary, is infamous for his quote about ‘known knowns’ and ‘unknown unknowns’. Poor man – how one statement can haunt you for the rest of your life! It’s odd, but this quote keeps on popping into my head at the moment. The more I find Donald Rumsfeld quoteout about multiple sclerosis, the more I realise I don’t know, plus how little the scientists know – and don’t know! There are many ‘unknown unknowns’!

During my many years working as a nurse, I have looked after a number of patients with MS. A few were hospitalised because of their condition, but most were in for unrelated reasons. I thought I knew what MS was and how it affected people, but now I’m on the other side, it amazes me how little I really knew. I must have really annoyed some of my patients. It’s not surprising, therefore, that people who have never been exposed to this crazy condition lack understanding and are prone to making assumptions about the condition, and you as a person. This is one of the top frustrations and irritants discussed on the various MS message boards and Facebook groups I’ve subscribed to.

One of the things that mystifies a lot of people is that there is often no outward sign of what is going on inside a person with MS. You may look perfectly fit and healthy, but feel terrible and find it hard to even get out of bed. People know it’s a condition that affects your nerves and tend to associate it with being unable to walk – if your legs work, you must be fine. As I’ve said previously, MS affects everyone differently (hence it’s known as a snowflake condition) and there’s a whole multitude of things that can be going on behind ‘closed doors’.

When someone asks me about MS, I try to explain it as simply as possible. To start to understand it, we need to know about magical myelin and it’s role in nerve conduction.

The nervous system is a constant communication network, sending and receiving messages around the body, Cylinder_Jacketcontrolling more information than any super computer could (I think!). These messages have to move fast; time really is of the essence when it comes to many bodily functions. So to maximise the messaging speed, nerves are covered with a special fatty insulation called myelin. I picture it like the lagging on a pipe or the cover on a hot water tank – a thick coating with regular indentations (where the lagging is tied in place). This special fatty lagging on a nerve enables an impulse to jump from indentation to indentation rather than travel down the whole nerve. This means information can get where it’s going super fast.

The nervous system is split into two parts – central and peripheral. The central nervous system (CNS) is made up of the brain and spinal cord and includes 12 key special nerves which includes the optic nerve. The peripheral nervous system (PNS) includes all the other nerves in your body. The CNS is the main system that has control over the rest of the body, translating messages coming in and sending out actions that need to be done, all performed in a tiny moment. Both the CNS and PNS contain myelin (the fatty lagging), but in MS it’s only the CNS myelin that is attacked.

For some reason, something triggers the immune system to see the CNS myelin as a demyelinating-disorderforeign body that needs to be destroyed (one of the known unknowns) and starts to break it down, like a mouse nibbling away at a pipe’s lagging. This is ‘demyelination’. Once myelin is removed, it seriously slows down the speed nerve impulses can travel at; it can even block messages getting through. This happens in the brain and/or the spinal cord and consequently causes chaos in the body, effectively having an impact on any sensory or motor function. On an MRI scan, areas that have been nibbled show up as white patches, or lesions; these are places where myelin has been destroyed. Some people with MS have loads, others have only a few. The effect they have on the body can, but not always, depend on number and location, hence the variety and intensity of symptoms.

Up to this point, it’s been thought that once destroyed, myelin cannot be replaced. Fortunately we live in exciting times and there’s lots of research going on, not only to work out the immune system decides to attack myelin, but also how to try and regrow it. In the meantime, it’s up to me to do everything I can to stop any more of my myelin being nibbled away. I can also deal with the known knowns, try not to worry too much about the unknown knowns, and keep an open mind about the unknown knowns. Myelin is precious stuff, and it can get on, and stay on, my nerves as much as it wants to!

 

 

Don’t follow the seagull

When my children were small and beginning to learn about the world around them, they would drive me beyond distraction with the perpetual ‘but why’? But why is the sky blue, but why do rainbows appear sometimes, but why does the rabbit keep jumping on the guinea pig…..? I always tried to answer each question with a good explanation, but sometimes I either didn’t really want to explain or I just ran out of answers. Some things are just because!

I got a bit stuck on the ‘but why’ roundabout when first diagnosed with multiple sclerosis. Like my children, I do like to fully understand what’s going on around (and in) me so I can rationally process information and make informed choices. Having a background as an intensive care nurse, I know a lot about the body and how it works, how it breaks down and, to some end, how to mend it. So when I received my diagnosis, apart from a selection of choice swear words, my first question was ‘but why’?

One of the many problems with MS is the cause is unknown. Autoimmune diseases are an anomaly. Nobody knows (yet) what triggers the immune system to start attacking it’s own body. There’s lots of theories, some amazing research, but as yet no definitive answer. There’s possibly some genetic defect that makes someone prone to MS. Or environmental toxins may be to blame. Possibly food allergies, or a virus, or some other infectious disease that turns the immune system on itself. It could be any of these, or all. Or possibly none. Nobody knows.

I learnt that continually asking ‘but why’ really didn’t help me come to terms with being diagnosed with an incurable and potential debilitating condition. It actually made it worse. I couldn’t move on, I needed to know. I’m sure I’m not alone in feeling guilty and to blame – what did I do wrong, why did this happen to me?

All these questions did was increase my anxiety. Stress and anxiety are not healthy companions for anyone. They use up a lot of energy, so are even worse for those of us with MS – we really don’t have any to spare! The ‘but why’ cycle needed to be broken. Fortunately, I talked to someone with some sage advice which really helped.

She told me to imagine I was walking on a cliff edge watching a seagull fly up in the sky. I’m so busy watching the bird, not looking where I’m going, and fall off the cliff (very dramatic!). Luckily, my fall is broken by a stubby tree growing out of the side of the cliff just down from the top.  If I carry on watching the seagull, the thing that made me fall in the first place, it’s not going to help me get back up. I need to find other solutions to get back up on the cliff path and carry on (although I think a stiff gin might be needed first!). Focusing on the bird is not going to help.

It’s all to easy too focus on the ‘but why’ rather than just acknowledge it’s ‘just because’. I had to decide to forget about that pesky seagull called why, pull myself back up and carry on the best I could. So that’s what I did. I know there’s many things that could have triggered my MS, but I’ll never really know why. It’s part of me now – just because.

 

Meerkat musings

We had a Sunday evening tradition when the children were small – sitting down in front of the TV for tea. Crumpets, a freshly baked cake or scones and steaming cups of tea. How very British!

meerkat-658504_1920Trying to be the perfect mother (how times have changed!) I usually insisted we ate at the table, so Sunday tea was a novel treat. Trying to find a TV programme that we could all enjoy was a challenge, though – thank goodness for Meerkat Manor. If you’ve never seen an episode, this easy-going wildlife programme follows a family of meerkats through the ups and downs of living in the Kalahari Desert. Personalising each meerkat with a character and a name, we were drawn into this furry soap opera, the children fascinated by each story, although there was trauma and tears when danger and death reared its ugly head. Life lessons!

These funny little animals rise at dawn, then bathe themselves in sunlight after a chilly night in the desert. Stretching up, exposing their bodies to the sun, their faces radiated furry joy as they absorbed the warming rays of a sun bath. Suddenly, they darted off, fully energised, grubbing for a scorpion or sniffing out some other tasty bug for breakfast.

I may be slightly less furry, and not keen on eating bugs, but I do recognise the enjoyment of absorbing warming rays of sun. It seems to have been a long and dull winter, but now spring is here, I love getting outside, feeling energy-giving rays radiating through my skin deep into my cells, filling me with light. Even sitting at the station this morning, I sub-consciously stretched up meerkat-style, sheltered from the wind, basking in the warmth. Ever since our time living in India, I yearn for sunshine and feel great joy when I open the blinds in the morning and see blue sky, and an irrational sadness if clouds build up and steal it away.

The sun gives us so many things, vitamin D being one of them. This is an essential nutrient that humans mostly gain by exposure to sunlight. For those of us in the northern hemisphere, sunshine can be a rarity, or is not accompanied by enough heat to expose much skin! In the past, vitamin D has mainly been associated with bone health; rickets seen as the main problem if sun exposure is low or non-existant.

With our modern, mainly urban life we now tend to spend more time indoors than out. Research has revealed that vitamin D is needed for more than just healthy bones. Low levels are associated with a number of different health problems, including multiple sclerosis. Why is not clear, but there does seem to be a correlation with more cases of MS in the Northern and extreme Southern hemisphere than nearer the equator. And often people with MS turn out to be low in vitamin D.

If a blood test discover low levels, it’s easy to supplement. It’s been suggested that people with MS should aim for higher than normal levels too, because of the positive effect vitamin D has on the immune system. There doesn’t seem to be any major problems if you have high levels, so why not?

Anyone diagnosed with a chronic health problem is looking to find out why something has happened; if MS was definitely caused by low vitamin D levels, it would be easy to eradicate, but of course it’s not as simple as that. The root cause of MS is still unproven. And not everyone with MS automatically has low levels – me included. Due to my time overseas, I have pretty good vitamin D levels, so a deficiency is not the route of my autoimmunity.

sun-382744_1920Vitamin D is thought to help lessen some of the symptoms of MS, which is good news. And getting out in the sunshine is also good for mood; low mood and depression are common amongst people with MS, and although a bit of sunbathing is not going to suddenly cure this baffling and complex condition, sometimes the simple things can make a lot of difference.

So even though my levels are good, I still supplement vitamin D to keep them high, just in case. And I take every chance to tap into my inner meerkat and absorb those warming rays when they appear.

I can’t wait for the summer, when hopefully we will have many days of lovely vitamin D giving sun – although not a really hot one, as heat and MS don’t mix either, but that’s a post for another day!

Waiting – who has time for that?

I hate waiting for things. It’s not that I’m inherently impatient (although my husband will say otherwise!), but once something has been decided, or planned, I just want to do it, good or bad. I’m a ‘come on lets get going’ kind of person. My pleasure, or relief, comes from taking action, not from the anticipatory build up.

hourglass-1875812_1920When you have a long term health problem like multiple sclerosis, the waiting can sometimes be as tortuous as the condition itself! And I seem to have done a lot of waiting over the last couple of years – waiting for bits of my body to start working again, for test results to make decisions, or for action to be taken on the decisions that have been made. What’s most frustrating is that having worked in intensive care for a number of years, I know most these results can be rapidly produced, it’s the system and work load that makes it all so slow.

I’m in limbo again at the moment, waiting to hear about my latest MRI. There is a slow but undeniably real assault on my nervous system that impacts on my every day life, physically and emotionally.  When the time comes, I want to be a hands-on granny  (I love to play!) and that time is a fair way off yet – hopefully – as my teens have a lot of living to do first. I’ve realised to achieve this aim, I need to be open to all treatment options, beside all the more natural things I do to manage this condition. No-one will let me hold the baby or leave me in charge of a toddler if my arms don’t work!

The problem with waiting is it’s so hard to plan. The waiting doesn’t just affect me, but my husband and family too. Making plans is difficult. Disease modifying treatments (DMTs) can be hard on the body, both from the direct effect on the immune system as well as side effects on other systems of the body. As with MS itself, everyone seems to respond differently to treatments too. I have tried one (tecfidera) but it made me too poorly, but not with the most common side effect, but then I always like to be different (guess I’ve always been a snowflake!)!  I had to stop. The side effects were worse than the MS!

Until you start a treatment, there’s no way of knowing how you’re going to react – some medications have more serious effects than others. So we can’t book a holiday, as travel might be limited. My work plans are pulled back, as will I be able to host events? Invitations come through far in advance – can I go? For someone who likes structure and control, it’s another stress to add to an already over-stressed body!

feng-shui-1927584_1920But then the longer I go without knowing what’s going on, the more I can pretend that all is well! This waiting is teaching me to be patient. To enjoy the things I can do. To make the most of each good day I have, whilst taking each bad day easier. Doing things spontaneously makes a change, not having the next few months mapped out is refreshing and new (but not comfortable). It’s all part of my learning to accept that things have changed and so must I. MS is a new feature in the family, and as much as we don’t like it, it’s best to embrace the suck and move on, even if it’s more slowly than I’d like it to be!

 

 

Fictional reality

We have a new TV game in our house – spot the character with MS. The rules are simple; guess whether the person introduced into an episode carries the subplot of a multiple sclerosis diagnosis.

It’s easier than you think. Spot a young person (usually an attractive girl) with a stick – bingo! Because of course every young lady with MS uses a stick (not!). A young person (still attractive, of course) presenting with a complex array of symptoms, some seemingly life threatening and of great concern? Or young relative of a main character with a long term disabling condition that’s suddenly going to kill them? It seems MS does all sorts of things! Dramatic, but rarely factually correct.

It’s not always so easy. And sometimes it upsets me. It’s not a game anymore, there’s no points to win. Just a slap of harsh reality and an air of tension in the room. The return of the elephant that no-one wants to mention, especially if one of my teens is watching.

ELE-castpair202iTake an episode of Elementary we recently watched. Love that show, the twists and turns, the nuances and relationships. Plus Jonny Lee Miller! The episode in question introduced a love interest for Captain Gregson. Drawn into the story line, we wanted them to be happy, but suddenly she was holding back, trying to put him off. But why? She was middle aged, looked perfectly healthy (and of course attractive!) so it couldn’t be anything health wise. Wrong!  She’d just received a diagnosis of multiple sclerosis and didn’t think it was fair to start a new relationship, trap the good old captain into caring for her as her body started failing her, forcing her into a world of paralysis and pain.

The way it was portrayed hit me hard. The reality of a middle aged woman receiving a diagnosis is different to a younger person, some good, other not so. Statistically being categorised as ‘old’ when diagnosed (i.e.: over 40) does not go in your favour. Mine came aged 47. Suddenly this story line was relevant to me, and I didn’t like what was being said. I could feel my husband sitting next to me shift uncomfortably; it’s not a reality he wants to be faced with either!

Of course what’s on TV has to be dramatic, otherwise people don’t want to watch. But it’s hard to watch, these reminder of the potential outcomes. And it is only potential – not everyone with MS will end up in a never-ending decline so dramatically portrayed on the screen. Not everyone with MS uses a stick (mobility problems are the least common but most obvious symptom). But then again, having a character who is permanently tired, occasionally can’t see clearly and is oversensitive to loud noises doesn’t really create much dramatic tension! And what these story lines create is the start of a conversation, particularly those difficult ones about what the future might hold.

In reality, no-one knows what the future holds, MS diagnosis or otherwise. The real drama is in our everyday life, and how we choose to live, right now. I write my own script. That is what I choose to remember when fiction tries to be fact.

I didn’t want to watch Elementary for a while after that, but the show is too good, so we’re back downloading episodes to enjoy. And I’m wondering what did happen to good Captain Gregson and his new lady friend…..? I’ll be prepared for when we find out.