Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up.
I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.
As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way).
Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it.
Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.
Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.
Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.
From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet?
My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet.
I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff.
Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.
I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.
Issue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.
Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.
Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.
MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.
Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.
In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!
About New Pathways
New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.
To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.
Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.
Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.
We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.
So, what are our priorities for the next three years? Watch or listen to our film today to find out!
You can also read our Strategic Plan for more information.
I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,
What you might not know is that Scott has been living with multiple sclerosis (MS) for 13 years and after recently seeing a worsening in his condition applied and has been accepted for Haematopoietic stem cell transplantation (HSCT) treatment in London.
Scott has had a coveted career as an aircraft engineer in the Royal Air Force and was diagnosed with MS in 2006. With an MRI scan his neurologist identified that he has significant lesions to confirm he has MS.
He tried the disease modifying therapies approach and gave beta interferons a try, but they didn’t agree with him. So he decided to take the no-drug route for 13 years before his MS became more active in recent years.
Like many people’s HSCT stories, Scott didn’t know anything about the treatment until his wife found information online. He has since been accepted for HSCT treatment in London and wants to raise awareness and share his experience exclusively with MS-UK and its followers. This is the first of a number of vlogs Scott will be sharing with us, so please do follow his journey with us.
Scott thought it was important to express that he is no way an expert and MS affects everyone differently, but hopes that sharing his story will give everyone an idea of what’s involved in the process and what to expect. Please do share your thoughts and comments with Scott via our social media pages and his own @goggle_beard.
Caution: Please be aware that some of the language used in this video may cause offence.
I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.
This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.
We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.
Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.
Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.
Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.
Amy Woolf, CEO
Holidays are coming, so here's an update about our opening hours over the next few weeks...
The MS-UK office will be closed from 5pm on Friday 21 December until 9am on Wednesday 02 January 2019.
Josephs Court, our Wellness Centre, will be open during these times:
Josephs Court will then reopen at 9am on Wednesday 02 January 2019.
The 25th anniversary issue of New Pathways magazine is out today. As you hopefully know by now, 2018 is MS-UK’s 25th year as a charity supporting people affected by multiple sclerosis (MS).
For those of you that are more recent subscribers to New Pathways, you may not know that this magazine started out as a leaflet called Pathways written by Judy Graham for MS-UK (which at the time was MSRC). The Pathways leaflet sought to provide people with the information they needed to live well with MS, at a time when there was very little information available, and what was there, was very limited in what it would cover.
Today, life is quite different with an abundance of information available via the internet, but this just creates noise that people need to navigate their way through to get to the really useful information they need. It really is all too easy to get lost in all the research and news, and end up more confused than when you started. But what Pathways set out to do and New Pathways has continued, is to cut through the noise by speaking to people living well with MS now, collect their stories, share them with you, and create a more sophisticated understanding of life with MS. An understanding that balances the facts of life with MS against the experiences of those living with the condition.
We see each person as an individual and treat them with the respect that they deserve; that each one of us is capable of making informed decisions for ourselves about how we wish to live our lives. That we all have the ability to absorb information and people’s experiences, and decide if something is right for us. To recognise that achieving the benchmark of ‘clinically-evidenced’ is not always going to be possible or even relevant for a good number of reasons. There is a huge difference between unproven and disproven. We have always understood that difference and will continue to use this to guide us for as long as we are here and needed.
To commemorate our 25 years, inside this issue you will find an Anniversary Special including a guest feature from Judy Graham, a feature by Tom Cutts who was diagnosed last year at the age of 25 and is coming to terms with his diagnosis, and a number of nods to times gone by.
You’ll also spot references to our history and the theme of 25 throughout this issue, such as 25 ways to raise money for MS-UK and get your pin badge on page 26.
Finally, we bring you all the usual content you have come to expect from us, including three accessible holiday stories - Julie Kicks on Andalusia on page 32, Tracy Brown in Bali on page 14 and our very own Ian Cook holidaying in Benidorm on page 38.
The 25th anniversary issue has been guest edited by MS-UK CEO Amy Woolf.
I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!
Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16.
On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started.
Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility.
Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.
If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback.
Editor, New Pathways
I am delighted to say that our Annual Review 2017 is now published. This booklet is our way to thank our supporters and celebrate our success in a public way, and I hope you enjoy reading it.
Our vision is a world where anyone affected by multiple sclerosis (MS) can access the information and support they need to make their own decisions. Since 1993 we have led the way in promoting choice, tackling taboos and remaining independently funded. We are built on a foundation of listening and acting according to the needs of people affected by MS. I am thrilled to see that this is reflected in our work from last year.
We are driven by our values, guiding principles that inform every aspect of our work. In 2017 we were able to bring these values to life, and our services supported thousands of people. Every service is shaped by people affected by MS. By listening to people, we are able to offer services that are truly community led.
Thank you to every single person who has shared their voice with MS-UK or supported us so on our journey so far.
Our work would not be possible without the support of so many people.
This issue of New Pathways magazine is jam packed full of a variety of news, features and real life stories. Start your read by catching up on all the latest developments in MS on pages 4-10. Then why not discover nine anti-inflammatory foods that could benefit your diet and MS on page 34.
Next we take a look at how a condition that predominantly affects women, actually impacts men on page 12. And on pages 30 and 32 MSer and feature writer Ian Cook revisits Access to Work and gives electric wheelchairs a spin.
Stem cells research and personal stories are still dominating the news, so we thought we would produce an update on this ever popular treatment option on page 24.
Also in this issue, MSer and HR Specialist Rebecca Armstrong explains how to get the best out of occupational health on page 16, we take a look at the therapeutic benefits of horse therapy on page 18, and Rosalind Barton reveals the highlights of her surprisingly accessible trip to Singapore.
Editor, New Pathways