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What barriers do you face to feeling happier and healthier in your life with MS?

Posted on: July 09 2018

Take our survey today imageThis year, MS-UK will be coming to the end of our current Strategy, and right now we're exploring what we should focus on in the next three years. But we need your help to get it right, and make sure that the wider MS community is included every step of the way!

Please take our short survey today and let us know what barriers you face to feeling happier and healthier in your life with MS. Perhaps you feel there is a vital MS service missing? Maybe you believe MS-UK could raise awareness of multiple sclerosis among the general public? We'd like to know your opinions, and use your voice to shape our work in the next three years. 

Your voice matters. Thank you for sharing it with MS-UK!

 

Guest blog: Beast from the East

Posted on: March 05 2018

In her latest guest blog Joanne discusses the weather and multiple sclerosis (MS) and coping with the Beast from the East…


jo-pic.jpgThe Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.

I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.

The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.

Prepare

You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.

When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.

Be safe

My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.

Don’t put pressure on yourself 

It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale.  I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!

Protect your mind

Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).

Be more hygge

In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.

Stay safe everyone! I’d love to know your tips?

Joanne

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Guest blog: It’s all about attitude…not age!

Posted on: February 19 2018

In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…

joanne-pic-small.jpgLittle man has another development milestone coming up, going to nursery.

It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.

Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.

He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.

To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).

I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:

  • Spare clothes
  • Bag with his name (my friend is kindly making one)
  • Stick on name badges
  • Waterproofs for wet, muddy days (puddle suits are good, apparently)
  • Wellies
  • Slippers
  • Tell the nursery manager about me
  • Understand parking
  • Understand security
  • Understand any policies
  • Don’t stress!

I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.

I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)

Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!

I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.

I’d love to hear how you tackle development milestones (no chronic illness required).

Joanne

Guest blog: Christmas and MS

Posted on: December 14 2017

joanna-christmas-blog-small.jpgIn her latest guest blog Joanne writes about Christmas and multiple sclerosis (MS)...

Sorry it’s taken me so long to write. I’ve been battling bugs and the MonSter has come out with vengeance.

With Christmas only around the corner, I put my best foot forward (left if you’re asking!), grab my stick (I’ve realised it doesn’t work well in winter) put some lippy on and carry on Christmas starts in full swing. I may look like I’m in the Christmas spirit, but on the inside, my MS is bubbling away.

I’m secretly wanting peace and quiet.

I probably sound all bah hum bug as on the one hand, it is the most wonderful time of the year but it also feels like an assault course. Twinkly lights, the smell of evergreen, secret eating of cheap chocolate coins, knowing the big FC is coming soon and everyone running around like headless chickens.

Little man is still too young to fully understand but he does love Christmas like his mummy.

Christmas and MS don’t mix. MS is holding me back. I’ve had to scale back. What am I doing to make Christmas run as smoothly as possible:

Keep calm and carry on

Don’t stress out. With pressure to have this perfect Christmas, whatever perfect is, I try to ease the pressure by focusing on what’s important and remembering I live with MS, that’s pressure enough. Remember it’s only one day. Don’t over commit yourself. Do what’s right for you.

Rest

Tiring for all, but exhausting for you. There’s more travelling whether it’s seeing folks or going out and about. Food and drink topped with long days have their toll. Don’t ignore any vegging opportunities but plan rest. Like Christmas presents, MSers need our batteries charged too!

Cold

Blooming heck it is cold! It’s snowed recently, dark days and the heating is on full whack, so I’m feeling more tired, the cold is making my MS worse, getting out of a warm shower is my cryptonite and if someone sneezes, I’ll probably get the germs. Many things to contend with, so the girl guide in me is being even more prepared. I’ve bought supplements, wear lots of layers and my wheat toy monkey is on standby for placing on my MS mad hands or warming me up. Plus little man thinks it’s funny seeing him spin round in the microwave.

Focus 

I can’t write, so no card writing. Annoying but probably a blessing. I try to focus on what’s important, rather than what I can’t do. Charities get my card money instead of the card manufacturers. I insist on hubby having time to help, whether it is present wrapping or shopping. Instead of list writing, I use the internet to save all my gift ideas and finally shop. It also helps with requests for buying for little man.

Magic

Christmas is about many things, for me, it’s also about random acts of kindness.

When little man saw the big man, the kind staff made it easier for me. Obviously you’d like it to be magical (and value for money) but I was also thinking about me. Not judging my mobility, was the cherry on the cake.

Recently I emailed ahead to get a table at a local bar. The bar reserved the table, so I could sit and enjoy drinks with ease. My friends have cooked meals and brought as a surprise. Many acts of random kindness. Before I wanted handbags or shoes, now I dream of kindness ( I still have the bag and shoes, although make them lovely flat ones!) So as the saying goes, I hope this isn’t just for Christmas.

So whatever your Christmas brings, let’s hope it’s happy, merry and kind. Remember kindness costs nothing (not like a drone at £500!)

Health and happiness to all.

Happy Christmas!

Guest blog: Overcoming MS, a personal journey

Posted on: December 08 2017

jamie_before_after_smnew.jpg
Jamie before and after

In this guest blog, Jamie Macpherson gives a personal account of how the ‘Overcoming Multiple Sclerosis’ program has helped with his multiple sclerosis (MS) and his life...

 

My story is an interesting one as both I and my Mother have MS, six years and twenty nine years respectively. My mother is now considered secondary progressive and confined to a wheelchair currently. I, despite been diagnosed with the label MS, consider myself the healthiest I've ever been and intend to be for the rest of my life.

Before the introduction of internet and more recently the findings and practice of George Jelinek there wouldn’t have been much help for my mother as there wasn’t even many options for disease modifying drugs. So this will have led my mother to only be able to try methods such as the oxygen chamber therapy or the will of God.

So as my Mother, Jeanette, slowly declined in health, I for a period of time became her run-around whilst my father Peter worked to keep a roof over our heads. All this time I’m doing this I am smoking, eating poor food, no exercise and unknowingly to me becoming ill with each day of this poor lifestyle whilst thinking ‘I’m wonderful because I’m helping my Mum!’

When I had my first episode of MS the pain was very hard to describe and something I would not like to go through again. Obviously I had all the tests MRI etc. and the confirmation by the neurologist was MS and his words were ‘go away and see how it progresses’ (lovely thank you very much)!

The state of my body at that time, other than having MS, included weighing 22 stone, a BMI of 38, waist size 42 and more importantly really low self-esteem and depressive thoughts daily.

What did I do? Well despite having a loving caring family of partner and two young children 13 and 9, I lost the plot and left home and sat for a time feeling very sorry for myself and my position in life.

Then one day I visited my Mum and she had a magazine delivered called New Pathways, which had a reference to a guy called George Jelinek, who had written a book called ‘Overcoming Multiple Sclerosis’, so I ordered the book and couldn’t believe the similarities that both he and I had had, Mothers with MS, and then sadly for George his mother passed away. Well this book gave me hope, a chance and an opportunity to maybe, just maybe, get out of this position and make something of my life.

I attended the seminar that George and his team held in Brighton in 2013 and was completely amazed at all the people that had been following the seven step program and how well they were doing.

rainbow4_0.jpgSix years later my life is the best it has been ever. I now weigh 15 stone, my waist size 34, BMI around 18 my thoughts are of ‘what can I do today to help people like me?’How have I got here? Obviously the OMS program is a must and I follow as best I can daily. Other things I have implemented include, acupuncture once every two weeks with a fantastic lady, Gisela Conclaves, in Heywood Rainbow clinic, I only eat foods to my blood group, I take high doses of Vitamin D3 and daily flaxseed oil with Herbalife breakfast nutritional shake. More recently I have been trying the virtually no side-effects drug Low Dose Naltrexone which has been a real help in fighting the dreaded fatigue which I no longer suffer from.

 

Above all these I tell myself ‘Every day in every way I get fitter and stronger.’

Jamie

Find out about the Overcoming Multiple Sclerosis program on their website.

Last chance to take our Choices survey...

Posted on: November 02 2017

 

choices-survey-1.pngHi everyone,

Tomorrow we’ll be closing our latest Choices leaflet survey!

If you have a diagnosis of multiple sclerosis (MS) it would be great if you could take our quick survey. The questions are about adult social care, exercise and fatigue.

Thank you for your help!

Best wishes,

Diana

Diana Crowe, Head of Services

Guest blog: Asking for help

Posted on: October 27 2017

chloe_new_300.jpgIn her latest guest blog Chloe deliberates over 'over-doing it' with multiple sclerosis (MS) and how she has learned she has to ask for help...

Ah, the havoc kid’s parties can create. Not only is the house a tip afterwards, but they shake me right to the core. Lib was 6 the other day, and we had not one, but two parties for her – a family one, and a friend’s one. I remember last year saying I would never do two again, but low and behold I did not heed my own words this year.

I love them, I really do, but the planning, executing and aftermath takes it toll. I did a hell of a lot of baking (which again, I love) but that ultimately means a lot of standing in one place. Not good for the MS! Or in other words – strike 1. Then there’s the running around at the actual parties – strike 2 for the MS.

Strike 3 comes from the bipolar. Running on adrenaline and manically planning things means I tend to become too high because my body can’t regulate things properly. And what comes up, must come down, so after everything was done, I crashed on an epic scale and ended up in bed for nearly 3 days. I became tingly and fatigued, and was suffering from exhaustion and depression. So yeah, another example of how everything takes it’s toll.

It wasn’t a serious relapse, so I didn’t get in touch with the MS team and I knew what it all stemmed from, but in my mind it was what I like to think of as a minor-relapse. One that will ultimately get better after a few days of rest. And it did, so everything is fine. But it did get me thinking about how fragile life with MS can be. Just a simple thing like organising a birthday can derail things on an epic scale.

But how am I meant to cope with life as a Mum of two kids and still maintain an even keel on my MS?

Life with kids is hectic, and not exactly predictable. I guess the answer is help. Asking for it, which I confess I’m really bad at doing, and accepting it when it’s offered. Plus, and perhaps more importantly, I need to accept that perhaps I can’t do what ‘normal’ Mums can do.

Working around this is going to be tricky for me, mainly because it means that at 6, Lib is now old enough to take on board things that are explained to her. So is it finally time to have a ‘conversation’ with her, or do I just carry on casually mentioning my MS in passing in the hope that it sinks in? It’s a tricky one for sure.

Chloe

You can follow Chloe’s blog at https://tantrumsandtingles.blogspot.com/

Download our ‘Am I having a relapse?’ form from our MS symptoms page.

Can you help shape our leaflets?

Posted on: October 19 2017

survey-graphic-1.pngHello,

We are refreshing our Choices leaflets for people affected by multiple sclerosis (MS) and we need your real life experience to help shape them!

If you have a diagnosis of MS it would be great if you could take our quick survey. The questions are about adult social care, exercise and fatigue.

We want to always provide people with the fullest range of choices available to them; not only drugs but all types of treatments and lifestyle changes. We hope that by including your experiences, our leaflets will truly resonate with people who turn to us for help.

Please be assured that any comments you give us will remain anonymous when published in our Choices leaflets.

Thank you for your help!

Best wishes,

The MS-UK Helpline team

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