Skip to main content

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

#ms #multiplesclerosis #spoonie #chronicillness #fatigue #msfatigue #energy #disabled #mobility #balance #energy #flare #relapse #parenting #mummy #mum #mom #children #badweather #snow #ice #slip #fall #beastfromtheeast #writing #blog #hygge #mind #emotions #netflix #peppapig #cbeebies #energy #flare #parenting #mummy #daddy #mum #mommy #mom

Read more/follow:

poorlyparents.wordpress.com

poorlyparents on Facebook

@Mummywithmsjmhc on Twitter

Baby its cold outside – 5 top tips

Posted on: February 28 2018

img_0412.jpgWith most of the country feeling the big freeze, here’s our top tips for travelling safe and keeping warm…

  • Obviously and first on the list – don’t go out unless you really have to. Even if it looks like fresh snow, chances are if it’s been snowing for a few days there will be ice underneath. If you’re really in need of something from the shops, call your friends and family and see if they can pick some milk up for you
  • If you need to go out, wear a pair of shoes that have a thick tread. This will give you as much grip as possible when trudging through snow, ice and sludge
  • Layer up – even if heat is not your friend and upsets your MS if you wear layers you can take them off or put them on as and when you need to
  • If you have to take the car, check and plan your route. If you plan your route using Google maps, you can zoom in and it will show you where the traffic issues are
  • Also, take some supplies – You could get stuck in traffic for a long time and at worst stranded in your car overnight so make sure you take a supply of medication, water, food, blankets, de-icer, and a shovel

Find out more about our services to support people affected by multiple sclerosis (MS) on our website.

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!

Martin, James and Stirling: A Christmas tale of running

Posted on: December 14 2017

In this guest blog, we celebrate our Fundraisers of the Month for December. Martin, James and Stirling all took on the Santa Run on 03 December to raise vital funds for MS-UK, so we can continue our work supporting people affected by multiple sclerosis. Here is their Christmas tale of running...

fotm-image.jpgFirst off my name is Martin Hughes.

I first decided to throw myself into fundraising for multiple sclerosis after my partner Dominique was diagnosed earlier on in the year after having our first baby. This is something that had been hanging over us for about three years but up until then she didn’t have enough symptoms to be diagnosed. Even so with us always knowing there would be a chance it was still a massive shock for all of us.

I didn’t know how to help her or how to get my head around it, so I decided to put my energy into helping other people with MS. This way I felt like I was making a difference. I hope to raise money to help the people already affected but I’d also like to raise money to help find a cure also. That would be my ultimate goal, to help find a cure for Dominique.

I first decided to do the Santa Run as a starting point for me to see how I got on with raising money and to see how well I would do. It also seemed fitting to have a bit of fun also, I think everyone needed that. Mine and Dominique’s friend James Paskins heard about my plans and jumped at the chance to join in and help with the fundraising and to also run with me. Following that our friend Stirling Woodside also wanted to help raise some money to do the Santa Run because of the ties he also has to MS. His girlfriend’s Mum also has the condition. So for our own personal reasons we put all of our efforts into doing the cause proud by fundraising and spreading awareness.

James and I decided to put on a family and friends fundraising event at Dominique’s parents’. This also being a starting point for more ideas in the future but it was a huge success and we were extremely chuffed.

We cooked big pots of stew, casserole and chilli the night before. Dominique and myself organised the pub quiz and a raffle, which went down so well. All we asked for was a donation of their choice to participate in the evening. It was good fun and everybody enjoyed themselves. We are still now being asked when the next one is going to be. Just in that one night alone we raised £385 with roughly 18 people.

We are hoping to do more of these with friends and family who couldn’t attend this one, and then to hopefully branch out with more public fundraisers.

On the build up to the Santa Run, I had good intentions of preparing for the run. I’m usually athletic in playing football every week but I had been injured so hadn’t played for a little while. I’d torn my hamstring, but this wasn’t going to stop me participating in what I’d planned to do for so long. So I got there on the day with no training and hardly any fitness behind me. It was hard, but not only did I do it but I finished it in under an hour and that was what I was always aiming for. Would I do it again? Yes! It was good fun and I’m hoping to get a few more people involved in doing it next year.

In total we have all raised just over £1,500 and we are still going. Never did we expect the support we’ve been given but we do appreciate it so much. If you would like to donate to MS-UK our links are underneath, it really is a great cause and helps the lives of so many that are affected by multiple sclerosis.

We thank everybody that has donated and that has helped us with the first of many fundraisers we hope to do in the future.

Martin, James and Stirling

 

Guest blog: Feeling the cold

Posted on: December 11 2017

In her latest blog Jo explores the effect of the cold on multiple sclerosis (MS), a very topical subject with temperatures dropping and the 'threat' of a white Christmas...

jo-small.jpgSometimes I feel a bit like Goldilocks when it comes to finding the right temperature. I easily get too hot and I easily get too cold, in fact it can be rather tricky getting it just right!

It is well documented that heat can make MS symptoms worse. Usually only temporarily, but worse all the same. In fact in times gone by, before MRI scans and the like, the test for MS was to put the patient in a hot bath and see if the symptoms got worse. If they did you had MS and if not you didn’t. A bit like how they ‘identified’ witches! Except without the risk of drowning as hopefully they pulled people out if it made their symptoms too bad!

But a lesser known fact is the effect of the cold on MS symptoms. For some MSers that can be a real problem too. As the autumn starts to change into full on winter this is becoming rather difficult. I live in fear of snow and ice. It’s hard enough to walk with MS and a stick on level, dry ground, but to negotiate icy pavements or walk in the snow is a whole new level of challenge! And just generally trying to keep warm in winter is tricky. It’s ok if I’m at home with access to jumpers, thick socks and the central heating thermostat, but dressing to keep warm outside…especially watching football (either my son’s team or the mighty York City) is something I haven’t quite mastered yet. I’ve experimented with different types of thermals, socks, layers, gloves and hats, but to no avail. I’m seriously contemplating some heated gloves and I’ve seen a fabulous jacket with a rechargeable battery pack that powers heat in different sections…it’s a bit pricey though!

When I get cold it’s not just the usual unpleasant feeling of being cold, it actually makes my symptoms worse. My legs stiffen up, the tremors start, the pain gets worse and the fatigue hits me and because my internal thermostat is faulty due to the MS it takes a long time to get warm again. I usually dive under the duvet, fully clothed with a hot water bottle and wait for the thaw to set in…

I have recently found some hand and feet warmers (called Hothands) that are activated by the air once opened and last up to 10 hours. I tried them last weekend at a very cold football match and they helped a lot. I’ve just found that M&S do two different thicknesses of thermals too so I’ve ordered a thicker top to try. I’ve also bought some new thermal socks that have a Tog rating! Like duvets! Now surely they will do the trick!

So, I will continue to hunt for things to keep me warm, pray for another mild winter and look forward to warmer, but not too warm, summer days.

Jo

It's your last chance to order a collection box before Christmas!

Posted on: December 05 2017

img_1712.jpgWant to support MS-UK this Christmas? Grab a festive collection box today! Just email Jenny or call 01206 226500! Here are 5 festive fundraising ideas to help you fill it up...

  1. Host a Christmas jumble sale at your local village hall! Do you like to de-clutter in the approach to a new year? Ask your local village hall for permission to host a jumble sale, gather together some friends and family and take part in some festive flogging to raise money for MS-UK
  2. Are you gifted in the gift-wrapping department? Offer up your gift-wrapping services this Christmas and wrap gifts in exchange for a donation. You could even ask your local department store to let you set up a giftwrapping stall, if you provide paper and gift tags. Some happy shoppers will be elated to avoid their last-minute Christmas eve elf imitations!
  3. Water or Wine? Wrap up lots of empty wine bottles filled with water and a few still full of wine in Christmas wrapping paper. Take them to your work Christmas party and charge punters £1 per pinot-shaped parcel. This liquor lottery should raise a few pounds for MS-UK whilst making some party-goers very happy!
  4. Are you part of a musical ensemble or choir? Raise vital funds for MS-UK this Christmas by staging a small carol concert or musical performance at your local Church, pub or shopping precinct. We're even hosting our own concert this year in Essex! You can order tickets online today for the MS-UK carol concert!
  5. Host a bauble-fuelled bake sale. Bake some Christmas cakes and cookies with a group of friends and host a bake sale from your own home. Invite friends and family for some tea and cake and true to festive spirit you'll be helping others in your efforts. You may even have some left to leave out for Santa on Christmas Eve :)

To receive your own fundraising pack and collection box in time for the Christmas period email Jenny or call 01206 226500!

12 days of Christmas fundraising!

Posted on: November 10 2017

12-days-image.jpgThe MS-UK fundraising team are being busy little Christmas elves organising all the fun events for the festive season! Here are our ‘12 Days of Christmas’ fun ideas to support MS-UK in the run up to Christmas…

  1. Guess the candy canes in a jar. Charge £1 per go. You could use any seasonal treat or to make it harder by using dried fruit!
  2. Festive hat day! Why not get your colleagues involved and get them to have a wear a festive hat day at your place of work for a contribution to MS-UK? Other Christmas clothing could be an alternative.
  3. Name the Christmas toy. £1 a go. Choose a name from a list (we can provide one). When all the names have been chosen put the names in a (Santa) hat and film the person picking out the winning name!
  4. Give a gift online. Why not donate to MS-UK instead of sending Christmas cards this year?
  5. Christmas swear jars. Ban a particular Christmas word and if a colleague/family member is heard saying it they have to put a ‘fine’ into the jar.
  6. Christmas craft party. Charge an entry fee, and lead them to create a design. Supply some nibbles and a drink, and you’ll have a fab night.
  7. Christmas beard competition. Challenge your male friends to grow a Santa beards in return for donations.
  8. Card creations. Make your own festive Christmas cards this year and sell them to your friends in aid of MS-UK.
  9. Host a Christmas dinner party! Rather than having your annual Christmas get together with your friends at a bar or restaurant, get your pals to follow a ‘pay as you feel’ policy and cook them a festive feast at home! Donate the proceeds (if there are any, depending on your culinary abilities) to MS-UK!
  10. Get quizzing! Approach your local pub and see if they would be interested in hosting a Christmas quiz night for you. Charge per participant or by team to enter. You could even see if they will donate a prize to the winning team like a case of wine.
  11. Bake. Everybody likes cake, and now is the perfect excuse to have a slice. Why not take some festive cakes into your place of work, hold a stall at your childrens school Christmas bazaar or take along to a social group you attend. Get friends and family to join in too, the more the merrier!
  12. Sing, sing, sing! Love to sing? Why not create your own festive jukebox? Get friends and family to donate for you to sing their favourite Christmas song. You could even charge for extras such as wearing fancy dress or doing a duet. Film yourself doing them and share on social media with a link to your online fundraising page!

Order a fundraising pack today and you'll get a free Christmas collection box! Email Jenny or call 01206 226500. Remember... Every penny you raise helps MS-UK support even more people affected by multiple sclerosis (MS). We wouldn't be here without you - thank you!  

Christmas is coming!

Posted on: November 07 2017

Ho-ho-hello!

We have made a short film to let you know how you can support MS-UK this Christmas so please take a look  today on YouTube!

If you’d like to order a free Christmas collection box, just email Jenny or call us on 01206 226500. Every penny you raise helps us support people affected by multiple sclerosis, so thank you!

Best seasons wishes!

The MS-UK fundraising team

Santa suits at the ready!

Posted on: October 24 2017

Hi,

Not to panic or anything, but Christmas is fast approaching – and we have a fantastic event that is for anyone who loves the festive time of year!

On 03 December we will be cheering on our amazing MS-UK runners as they join 4,000 Santas for a great day out in Victoria Park, London at the Santa Run.

You can choose between a 5k or a 10k route, and you can wheel, walk, jog or run the race. You’ll get a free Santa outfit to make sure you look the part (although fancy dress is positively encouraged too, and there is a costume competition on the day!)

Need some inspiration? Check out the video!

Anyone over the age of eight can take part, and four-pawed friends are welcome. There is even a free children’s fun run at the start for the little ones. The event and course is wheelchair accessible. There is a £25 registration fee when you sign up for this event. For children, the registration fee is £10.

We would love you to be part of team MS-UK for the event! Visit the website today to register and help us make a difference this Christmas!

We ho-ho-hope to see you there!
Jenny

Jenny Poulter, Events Fundraiser

5 ways to stave off colds this winter - flu vaccination

Posted on: October 18 2017

51.pngOur fifth and final blog this week in our series of how to stave off colds this winter is all about the flu vaccination...

It’s a controversial subject – should you or shouldn’t you have it? Flu vaccination is estimated to be effective in 17-53% of older adults compared to 70-90% of younger people.

But if you do decide to have the flu vaccination, a recent study conducted by Nottingham University has found that being in a good mood when you have your flu jab boosts its efficiency.

The team of scientists measured negative mood, positive mood, physical activity, diet and sleep three times a week over a six week period in a group of 138 older people due to have their flu jab. Then they examined how well the jab was working by measuring the amount of influenza antibody in the blood at four weeks and 16 weeks after the vaccination.

The results showed that of all of the factors measured, only positive mood over the six week observational period predicted how well the jab worked – with good mood associated with higher levels of antibody. In fact, when the researchers looked at influences on the day of vaccination itself, they found an even greater effect on how well it worked, accounting for between 8 and 14% of the variability in antibody levels.

If you would like information and support about anything we have covered this week, or would just like to chat, the MS-UK Helpline is here to help. Call us on 0800 783 0518, email us info@ms-uk.org or chat with us online at www.ms-uk.org/livewebchat.

Pages

Live Chat Software by Click4Assistance UK