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Guest blog: How it all started

Posted on: September 29 2017

joanne-pic-small.jpgIn her second guest blog, Joanne, tells us how her multiple sclerosis (MS) started and how it is being a Mummy with MS...

It all started with eyeliner. I was trying to put some on before going to work. I thought ‘crikey I can’t see very well, maybe I have overdone it.’ So off I trotted to the opticians, who then referred me to the hospital.

My journey began. I was told I’ve got Fuch’s disease, more prominent in people who have different colour eyes like me (I still need to be monitored for this, no, I’m not related to the late David Bowie!)

I started with daily fatigue and weakness in my arms. Googling symptoms, I convinced myself of all sorts including a brain tumour. My eyesight was getting worse. My kindle was my best friend as I could zoom in and read (like all three books of 50 Shades!) I was off work and eventually the hospital told me I had optic neuritis.

The first mention of MS started. Lots of procedures including an MRI (wear socks so you feet don’t get cold is one of my tips) and my spinal fluid was taken twice. A never ending journey of hospital appointments. I didn’t want to believe it because I hadn’t been diagnosed, which came a year and a half later so I spent a lot of time in limbo land. It was frustrating. I didn’t really have a clue about MS. I’m still learning.

As you know, there are many symptoms of MS. Mine have included daily chronic fatigue, pain, weakness ( I haven’t properly written in over two years), numbness, poor balance (falling off my bike was fun, not!) rubbish walking (I now have a stick) slurred speech (no, I’m not drunk, but probably sound it!) swallowing problems, bladder issues (what joy!) smelling of smoke (apparently this is an unusual symptom) and various other things. I was on Copaxone injections before I fell pregnant. I had a really bad reaction and ended up in hospital. I was also on Tecfidera tablets for ten months but came off recently, am waiting for a neurology appointment and debating my options.

My main thing has been trying to deal with being a mummy with MS. I found there isn’t anything that addresses how you look after yourself and a little one at the same time, so I started to write. I’ve been writing for the MS Society, other MS charities like MS Trust and Shift MS and my blog, poorlyparents.wordpress.com.

You can find me at, if interested.
Poorlyparents.wordpress.com
Poorlyparents on Facebook
Mummywithmsjmhc on twitter

I’m no expert on mummy or MS stuff. The biggest thing I found helpful is gaining an understanding from others who are in the same boat. I’ve not met anybody like me. Maybe social media will help. Thank you for listening. Here’s to more blogs.

Jo

Guest blog: The Brutal Double Triathlon for MS-UK

Posted on: September 28 2017

matthew-norris-2.jpgIn this guest blog things are getting brutal! Matthew Norris took on 'The Brutal Double', which is a double Ultra-distance event, based in Llanberis, North Wales. Here is his story of fundraising for MS-UK...

23 intrepid Double Ultra Triathletes took to Llyn Padarn at the foot of Mount Snowdon earlier this month for the first of 3 events. At 7:30am, we joined other athletes racing half, full and triple distance triathlons. The swim was 8 laps around the course for a total of 4.8 miles. The lake was hovering around 11°C as we entered the water, and 3 hours later, I emerged feeling cold, but relieved to have completed the first event with a smile on my face.

Next up, the bike section. Another 8 laps, on the road around Snowdon. Total distance covered; 231 miles with over 16,000ft of climbing (That’s the same as reaching Everest South Base camp!) What followed was 20 hours in the saddle, with stops for food and drink at the end of each lap. Temperatures dropped to around 4°C during the night, and there were some desperate, dark moments as the night rolled in, including tears, nearly falling asleep on the bike, lots of very lonely times and a near-intimate bike/sheep incident.

matthew-norris.jpgAround 6am on Sunday morning, I finished the bike ride and had 30 minutes sleep. Awake (ish) and partly refreshed, I began the ascent of Snowdon with my sister and best mate.

Feeling tired and a little lacking in energy, we made it to the top, got the all-clear from the medic and descended the mountain back to race HQ. I could quite happily have stopped there after 10 miles, but the run section was yet to come.

Another change of clothing into running shorts and trainers and the 8 laps of the lake began at about 11am. Each lap being just over 5 miles on and off road with 600ft of climbing on each lap. (Totalling more than the ascent of Snowdon). The laps wore on, and my support crew continued to provide amazing morale as the darkness once again descended. The last 3 laps were in the dark and to top it off, heavy rain started on the final lap! I didn’t care by then, it was done. I had conquered the Brutal Double.

40 hours 24 minutes. 11th out of 23 starters and my last ever Triathlon.

What a finale.

I can recommend this race to anyone, but make sure you have an amazing support crew. They were priceless.

Thanks to everyone who donated to my nominated charity; MS-UK, for which we raised over £800!

Feeling inspired?

Get in touch with Jenny@ms-uk.org today to find out more about fundraising for MS-UK, call us on 01206 226500 or visit our website to fill in our online form.

Guest blog: Alex's skydive

Posted on: September 27 2017

alex3-e1505141911792.jpgIn this guest blog Angela Pedge tells us of her son Alex's skydive for MS-UK...

I have a wonderful supportive family and friends who help me with my multiple sclerosis (MS) which I have had since 2008. I attend MS-UK social events and use Joseph Court which helps with managing my symptoms of MS.

I was so pleased when my son wanted to do a skydive and raise money for MS-UK.

He contacted MS-UK to see how he could do this and spoke to Nick who helped him set up a JustGiving page and organise the skydive.

We were lucky enough to arrange the jump on his actual 21st birthday which was 19 August 2017

alex-1.jpgOn the day it was a lovely sunny day and we had to be there for 8.30 in the morning. Alex was so excited and a little apprehensive. Alex had a half an hour debriefing and then was all kitted up to make the jump, he then boarded the plane at nine and went up. His family were all there supporting him and watching him make the jump. When he came down he said it was the best thing he’s ever done and he would never forget it.

I am so proud and grateful of my son who has managed to raise £664 so far for MS-UK from friends and family who have kindly donated.

When I asked him why he wanted to do the skydive he said that he wanted to honour me and people like me who have to struggle daily with MS and it was the least he could do to help.

Angela Pedge

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Guest blog: Turn on the dial for this one!

Posted on: September 26 2017

In this guest blog, Patricia Gachagan tells us all about the new radio network for the global MS community!

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The MS & Me Radio Network is a division of The Multiple Sclerosis Global Support Network. MS & Me Radio brings you streaming radio broadcasts around the globe 24 hours a day, 7 days a week. Our goals to increase multiple sclerosis awareness, self-advocacy and aspects of living with MS from peer to peer information and health care providers.

My show:
‘Positively Different MS’ airs every Sunday @ 9.00 pm and reruns on Mondays @ 1.00 pm and 7.00 pm (UK times)

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My show is based on my MS jigsaw - which is all the pieces I have tried and tested to manage my

My show is based on my MS jigsaw – which is all the pieces I have tried and tested to manage my MS over the last decade to live as full and enriched a life as I possibly can with MS. The show interviews a weekly guest with specialist input on my MS jigsaw pieces, has ‘snippets’ of real life coping and management experiences and offers ‘POSITIPS’ on ways to try and move our lives forward. There are many pieces of the MS jigsaw on the show. It is an uplifting show trying to reach all us ordinary – or should I say extraordinary people – living life with Multiple Sclerosis. My aim and my reach is to find new ways to do old things, go on that circuitous journey to acceptance, find the positives and leave those negatives alone. Believe in ourselves and our futures and search to find ways to see MS as a new beginning now and not that life sentence and harsh ending of everything we have ever known – that we all feared so much at diagnosis.

There are many other shows hosted from around the world so take a look… https://msandme.airtime.pro/

More information @ http://www.patriciagachagan.com/radio.php 

Positive thoughts always and together wecanfindaway.com

Guest blog: The Outlaw Triathlon for MS-UK

Posted on: September 25 2017

In this guest blog Kim Mangelshot tells us why she undertook the Outlaw Triathlon for MS-UK...

kimberley-mangelshot-outlaw.jpgAs I walked around the village with a friend, our doggies, and my hubby today I noticed a gorgeous blue sky.  Two years ago, on the 17 March, we all said our formal farewells to Jeff, my brother – the bloke that added some ‘glue’ to our little family unit. Jeff would wake up every day and no matter what card was dealt to him he would see the blue skies and now his soul soars in the blue skies every day. Free as a bird; caught on the warm air that circulates above us; sending smiles into our hearts when we remember his ‘Jefferisms’, a phrase I coined on his send off and day of remembrance.

Jeff had multiple sclerosis – MS. Jeff was diagnosed in 1996, aged 24 and at the time his symptoms were fairly mild: fatigue, he dragged a leg, fell over occasionally. By the time his time to soar in the sky came he had changed his view on what was acceptable living standards, almost every day. Jeff could barely speak in the last year – the muscles allowing him to control his speech were weak. He had a peg feeding tube for all nutrition: he still loved to smell foods and drinks and it may seem as if he was being taunted but he would insist on sniffing a cup of coffee when we went out. He could not move by himself or do any of the normal functions that we take for granted. But every day he woke up and with the support of his amazing care team, he lived every day to end. A simple trip to the shops, a medical appointment, a day at the seaside watching others eat ice cream and fish n chips, his pop concert trips – all made him smile. His catch phrase became ‘whatever’ and he mouthed that with a cheeky smile right to the end.

What you may not know is that our Mum also had multiple sclerosis. She had a very different journey with her disease, via a condition called Arachnoiditis also she had breast cancer in the mid 80’s and was finally diagnosed with MS in 1993, age 53. She was told she had probably had it for 30 years. She fought to live every day – her pleasures were knitting, making pickled onions, keeping company with her pet dogs. She died in 2000, aged 60 from bronchial pneumonia associated with MS.

kimberley-mangelshot-outlaw-2.jpgOn the 23 July I participated in my second long distance triathlon – the Outlaw: a 3.8km lake swim: 180km road bike ride and 42km run – all back to back after 22 weeks of training. I hadn’t planned to set such a big goal this year as I have had 18 months where I have run very little due to a serious knee injury. I had surgery mid-December to sort out the four things inside and started rehabilitation. Then I won the space from a sponsor and the rest, as they say, is history.

This journey to Outlaw I decided to dedicate to all those living with and affected by MS. Everyone involved in the journey of MS – whether you are the patient, a family member, friend, or support network, medical teams, advise support teams – you make days easier for all. I want to honour them all by raising a little bit of money towards MS-UK who have supported our family – and families just like us. I completed the Outlaw in a new personal best time of 13 hours 19 minutes and 50 seconds.

 

Kim Mangelshot

Does acupuncture work for your MS?

Posted on: September 22 2017

acu-300.jpgHello everyone!

With the many different symptoms MS likes to throw at us on occasion, sometimes we turn to complementary therapies. There are lots out there, from reflexology, massage and herbal remedies to name a few, but which ones do you choose?

I have an aromatherapy massage once every six weeks and that helps release tension from my body, as well as giving me one hour to relax with no distractions. It’s by no means a cure for my MS, but it’s beneficial to my overall wellbeing and I’ll take that.

In the upcoming issue of New Pathways I’m going to be looking at acupuncture and I would like to speak with those of you who have tried it. Did it work for you? What were the benefits? Would you recommend it? I’d love to hear your experiences, so if you’d like to share them, email me at newpathways@ms-uk.org by the 29 September.

I look forward to hearing from you all!

Yours,

Sarah-Jane

Editor of New Pathways

Guest blog: 30 years on...

Posted on: September 21 2017

In her latest guest blog Liz talks about the past 30 years living with multiple sclerosis (MS)...

liz-murby_300.jpgOurs is certainly a tricky condition, like life itself, being unique to each and every one of us.., my first response to the thought/question of penning another blog was, honestly, why?..., but mindful of last night’s discussion with son #1, who shall remain nameless, I thought, well, if not you, who....? (a la ******), so here it is...., Following a couple of recent calls to my GP, turns out, I was diagnosed with MS, in August 1987..., 30 years (just) ago...well, I don’t remember either:

  1. This happening at all, [I was in the middle of studying for my degree at the time], put vaguely scribbled 2nd year revision notes down to stress (who wouldn’t?!)
  2. That my MS has particularly stopped me from doing anything that I have been particularly keen to do in the mean time
  3.  Giving birth to, and partially raising 2 fabulous sons
  4. Gaining my Economics degree;
  5. Having a go at ski-ing!!! not great, but I did enjoy it, though probably never again!- balance/confidence etc!

Many very helpful things (for the MS community worldwide) have certainly happened, and continue, day by day...my involvement in/membership of Twitter, the Tweeting community, being one example... Met, in person, the chap who kindly introduced me to MS publications (you know who you are C, and his fabulous wife N, they drove all the way from XXXX miles down South, but they didn’t give up, and certainly taught me a lot: my own needs, visible to others though they may, to a certain extent, are not going to stop the world from turning.) The local (and it’s tricky here, ‘my’ county has borders with 7 others...) has very recently established a new county wide MS group: thanks M, awaiting further details, patiently, as promised. I ‘heard’ from a trusted (MS) tweeter... of a very recent research breakthrough, that has also been successful in the treatment of pancreatic cancer (my best friend, and God-father to my elder son, died of this in 2007..., bye, still love you Coops!) To be honest, there is nothing like the delivery of one’s first born child...his brother, exceptionally large, (12lbs, 5oz) may have been a shock to all 3 midwives involved in his delivery, and certainly it took 3 scales to confirm..., my point{s} being that, like it or not:

  1. However large your belly is, that bump is coming out, hopefully healthy and happy!
  2. Death is a part of life’s rich circle/ tapestry...
  3. The longer we’re here, the closer to a pain/trouble-free departure for us all, we become;
  4. It’s kind of obvious...
  5. However difficult in may seem,
  6. Enjoy the NOW, and maybe think of helping others first as much as you can, you may feel good for it: I do

Now, in yesterday (late) evening’s chat, I promised son 1 I’d tackle a crossword today, brain active etc, so maybe after making sure all is safe here, I’ll give that a go...wish me luck! Cheers! Liz

The Queensferry Crossing

Posted on: September 19 2017

In this guest blog Ann Rice tells of her and her husbands walk over the Queensferry Crossing bridge in aid of MS-UK


ann-rice-3.jpgHi everyone,

On 03 September, my husband and I walked across the new Queensferry bridge over the river Forth. This was billed as ‘a lifetime opportunity’ as the bridge will carry cars and lorries and has no pedestrian walkway. There has been a huge public interest in Scotland, and a ballot was held for permission to walk the bridge. Only a quarter of the 200,000 applications was successful. We were among the lucky few.

This was very pleasing as we had walked the original Forth Road bridge when it opened in 1964. We were students in Sheffield and bet some friends (probably in the student bar) that we could hitchhike to the bridge faster than them. We won the bet, arriving at the bridge in the middle of the night. It was cold and sleeting. We then had to hitchhike back in the early hours of the morning.

ann-rice-2.jpgWalking the new bridge was an opportunity to raise a little money for one of my favourite charities. Our youngest daughter has had MS for more than 20 years. After the initial shock at the diagnosis, she scoured the web for information. Among the gloom and doom she found the MS-UK website (which had a different name then). They offered hope, encouragement and lots of helpful information. This is vital for any long term illness.

It was a great experience, people with children, buggies, wheelchairs and everyone happy to have won the lottery to take part.

Best wishes to you all,

Ann Rice

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Our Impact Report…

Posted on: September 18 2017

impact-report-cover-2016.jpgI am really pleased to say you can now read our Impact Report online at www.ms-uk.org/aboutus.

This booklet is our way to thank you to MS-UK supporters and celebrate our success in a public way.

Our mission is to provide high quality, accessible and relevant information and support to anyone affected by multiple sclerosis and in 2016 we built upon our strong foundations to do this.

In this report you can read about the MS-UK Helpline, New Pathways magazine and our Essex-based wellness centre, Josephs Court. I hope you enjoy reading about the progress we made in 2016.

I am proud of what my team has achieved in meeting needs of our clients. Throughout the year we continued to listen to real people affected by multiple sclerosis, and use their voices to shape our services.

Thank you for being part of the journey so far, and I look forward to the future and supporting even more people affected by MS.

Best wishes,

Amy

Amy Woolf, CEO

MS-UK get their wellies on!

Posted on: September 15 2017

img_1267.jpgMy name is Sarah, and I’m the General Manager here at MS-UK. Every year, I organise four team training days for all of the staff here. The team are asked to give ideas of what they would like to do which are discussed further during staff meetings.

A lot of our roles at MS-UK are part time where staff work different days and in different departments. These team days give everyone the opportunity of getting together and getting to know each other. I try to make the team days enjoyable while working with the management team to provide training necessary for our organisation, whether it be internal training or with an external trainer.

Our latest team day involved us volunteering for another charity, Wellies On, a working farm.

The day began with a talk from Wellies On Managing Director Ellie, who explained how the 40 acre farm brings together people from all walks of life who may be able to benefit from being outside in the countryside. We had a tour of the farm, followed by Ellie’s sidekick, Angus the dog!

After meeting the lovely goats and learning about the ice cream made by the farm we divided into three groups, which gave everyone a chance to catch up with members of staff in different departments.

One group took on the challenge of clearing overgrown brambles and weeds and laying a new bark pathway. They were very happy as they managed to eat a lot of blackberries during the day!

The second group made their way to the sheep pen, dismantling an old fence and digging holes for new fence posts to be erected. The sheep didn’t seem to mind us, until we cleaned the animal water troughs and they decided to come and say hello.

The third group helped out by rubbing down plaster board walls and painting the new reception area for Wellies On.

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ven though they were inside, we think they still ended up the messiest!

We had lovely weather for the day, and at about 12pm we enjoyed a pizza lunch in their fantastic yurt.

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Overall we had a really fulfilling day where both our team and Wellies On were very happy with the outcome.

All of our staff had a brilliant day and we were able to support another local charity.

Best wishes,

Sarah

You can find out more about Wellies On at www.wellieson.com.

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