Guest blog: Christmas and MS

In her latest guest blog Joanne writes about Christmas and multiple sclerosis (MS)…


Joanna christmas blog smallSorry 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!

Joanne

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Posted in blogging, Charity, Christmas, christmas cards, Chronic illness, disability, Disabled living, family and MS, Fatigue, Guest blog, MS, MS symptoms, MS-UK, Multiple Sclerosis, neurology, parenting, Uncategorized, wellbeing, Winter | Tagged , , , , , , , | 1 Comment

Martin, James and Stirling: A Christmas tale of running

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…


First off my name is Martin Hughes.

FOTM image.jpg

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

Visit Martin’s fundraising page

Visit James’ fundraising page

Visit Stirling’s fundraising page

Posted in Charity, family and MS, Fundraiser of the month, Fundraising, London, MS, MS-UK, Multiple Sclerosis, Running, Santa Run, Uncategorized, Winter | Tagged , , , , , , , , , , , , , | Leave a comment

Guest blog: Sophie’s marathon tuck shop!

In 2018, Sophie Bury is running the Virgin Money London Marathon. In this guest blog, Sophie tells us all about running a tuck shop at work as part of her fundraising!


To raise money for MS-UK is something that I am really proud to do as we lost a very close friend of my dad’s to multiple sclerosis (MS) in 2013.Tuck shop1.jpg

On 17 November I ran my first fundraising event at work and I decided to run a tuck shop, reminiscent of the ones you used to get a school, because who doesn’t love sweeties on a Friday! I’d had a few ideas for my first event but I wanted to run something that was easy to organise, fun and would include everyone.

I enlisted the help of some very supportive colleagues and started selling at 11am, within 20 minutes the sweets had nearly sold out so we had to make a quick dash to Tesco to restock. It was really nice to see such a positive response so early on and I wanted to make a success of my first event. On our return with lots more sweets we carried on selling throughout the afternoon, with some really generous donations and comments about MS-UK. By 3pm it was a complete sell out, I was amazed at the response my tuck shop received and the kindness given from everyone in the office!

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I decided to go for the old fashioned pick’n’mix type sweets and along with that I bought some pink pinstriped paper bags to sell them in. I spoke to our internal communication team about featuring my event in our weekly Huddle, made a poster to advertise the stand and got to work.

Running events can be daunting especially when it’s the first one and you’re doing it on your own. But the support received from my colleagues, friends and family has been so valuable and I’m really keen to make the tuck shop a regular event whilst I’m fundraising. My next event will be a Christmas themed bake sale on 15 December and I’m really excited to continue my fundraising for MS-UK.

Thank you,

Sophie 

Posted in Charity, Do your own thing, family and MS, Fundraising, London, Marathon, MS, MS-UK, Multiple Sclerosis, Running, Uncategorized, Virgin Money London Marathon | Tagged , , , , , , , , , , | Leave a comment

Guest blog: Feeling the cold

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 smallSometimes 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

 

Posted in blogging, Chronic illness, Guest blog, MS, MS community, MS symptoms, MS-UK, Multiple Sclerosis, neurology, Uncategorized, wellbeing, Wellness, Winter | Tagged , , , , , , , , , , , | Leave a comment

Guest blog: Overcoming MS, a personal journey

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…


Jamie_before_after_smnew

Jamie before and after

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.

Six 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?’

Rainbow4How 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.

Posted in Carers, Caring, Chronic illness, Diagnosis, disability, Fatigue, Guest blog, health, Low Dose Naltrexone, MS, MS symptoms, MS-UK, Multiple Sclerosis, neurology, New Pathways, Overcoming MS, Uncategorized, wellbeing, Wellness | Tagged , , , , , , , , , , , , , | Leave a comment

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

Want 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 emptIMG_1712.JPGy 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!

Posted in cake, Carol Concert, Charity, Christmas, Crafting, disability, Festive Frolics, Fundraising, MS, MS-UK, Multiple Sclerosis, Music, Uncategorized, Winter | Tagged , , , , , , , , , , , , , | Leave a comment

3 top tips for dealing with disability at work

Rebecca Armstrong.jpgHR Specialist and MSer, Rebecca Armstrong offers her advice…

Rebecca Armstrong has a background in HR and Leadership Development at a Senior Level. She was diagnosed with multiple sclerosis (MS) in 2013 and she now focuses on helping organisations embrace Equality and Diversity in their management practice. She established the Facebook group MS & Work in order to use her knowledge to support people with MS facing challenges in the workplace. Here are her top tips for those who are feeling discriminated against.

  • If you think you are being treated unfairly keep a log of everything. Keep copies of emails and log all conversations. Ensure you keep this factual; record specifically what was said and what happened. Try to minimise emotion as much as you can – tribunals work mainly on the facts.
  • Be open to helping your employer understand. If they get it wrong assess whether it was through naivety or discrimination. Think about how much you knew about MS before you were diagnosed and help educate. Use resources such as leaflets and booklets from MS-UK to help.
  • If you are being discriminated against act in a timely manner, it is easier to ‘nip things in the bud’ than let them escalate and become stressful. Remember stress is a major factor in MS relapses and progression, often a simple conversation can remove it quickly. Put your concerns (with specifics) in writing under your company grievance process. In a tribunal a judge will consider what opportunity the company has had to do the right thing or to put right what’s wrong.

You can read more advice from Rebecca regarding disability and work in issue 106 of New Pathways magazine. Subscribe today and get your copy.

Contact the MS-UK Helpline for further support or join Rebecca’s MS & Work Facebook group to continue the conversation.

Posted in Charity, Diagnosis, disability, Disability Rights, Disabled living, Equality and Diversity, FaceBook, Helpline, Helpline Live Web Chat Service, Jobs, MS, MS-UK, Multiple Sclerosis, neurology, New Pathways, Uncategorized | Tagged , , , , , , , , | Leave a comment