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
Emma Britneff, a Trainee Clinical Psychologist from Royal Holloway, University of London is conducting a study to evaluate whether an online resource called ‘Valuing Goals’, which offers skills training in goal setting and action planning, can improve well-being for people with multiple sclerosis (MS). The study has been granted ethical approval by Royal Holloway Research Ethics Committee (REC Project ID: 717).
'Valuing Goals' is an online training programme that helps people to identify and work towards positive personal goals by teaching specific skills step by step. It has been designed by clinical psychologists and based on research that shows goal setting, planning skills and working towards valued goals are associated with high levels of wellbeing. Previous studies have found this programme to increase wellbeing and quality of life in the general population as well as in groups of people experiencing lowered wellbeing. Emma is now conducting a study to evaluate if the Valuing Goals programme can be as beneficial for people living with MS, and she is looking for volunteers to take part in the programme.
If you would like the opportunity to have some online training in how to work towards personal goals, and to take part in some research please go to the link below for further information by clicking it or pasting it into your internet browser before 31 August 2018.
Please note this is an external study.
In her new guest blog Chloe Metson talks of dealing with depression...
People often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.
MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.
If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.
Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.
I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.
I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.
There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.
If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.
In this guest blog, Chloe Metson reflects on Mother's Day and what that means when you have young children while living with multiple sclerosis at the same time. You can check out her blog, Tantrums and Tingles, online today for more too!
Mother’s Day is upon us, and it’s the time of year when I reflect on how lucky I am.
I’m the mother to two beautiful children, but it hasn’t always been the easiest ride.
I was diagnosed with MS when I was 18 years old, which really put a spanner in the works when it came to making future plans. Back then I didn’t have access to the information I do now, so I felt very much alone. The future seemed daunting and scary.
With that in mind, I couldn’t even imagine having a family and being strong enough to cope with everything motherhood throws at you. How would I be able to cope with labour when I was so fatigued? How could I cope with night feeding? Broken sleep? And even just physically carrying a child all the time? It seemed terrifying to say the least. So for years I resided myself to the fact that I would never be a mother.
It’s only when I reached my late twenties that me and my husband decided to take the plunge and start a family. All of the doubts were still there, but the thought of never being a mother gradually overtook any fears I had. And I’m so glad we did it.
It’s very tough at times, and my MS undoubtedly gets in the way, but in those early days I was amazed at how much my body adapted. Of course I was still fatigued, but I coped better than expected, and with help and support we found a way around it. I rested whenever I could, and though we didn’t get out much and socialise, I was content that we were doing what was best for us.
For all the tough times, motherhood is one of the most rewarding experiences I will ever have. I remember the overwhelming pride I had in myself for just getting through labour, and delivering this beautiful creature into the world safely. I knew it was going to be tougher for me as a Mum, but because of this even the smallest achievements had a greater significance for me.
I never think of Mother’s Day as being a celebration of me as a Mum though, but rather a time to thank other mothers for their help. My own mother. My mother-in-law. My friends and family members who are mothers. They help to take the strain when things become too much, and we stick together as a family. I want to thank them because they make coping with two children a joy instead of a worry. I truly couldn’t do it without them, and they make me the mother I am today. A happy mother who, despite the MS, feels confident enough to deal with the challenges motherhood brings.
Today we publish a Guest Blog article from Mary Ellen Ziliak about how she coped with the challenge of being diagnosed with multiple sclerosis.
If you would like to write an article for our blog please contact email@example.com.
You can view the guidelines for writing for us online now at www.ms-uk.org/ourblog.
No one has the luxury of living without the occasional life challenge. Challenges are diverse and rising above them demanding. But to live well and expand our territory beyond the challenge, reveals our character and can lead to unexpected joy.
1998 delivered my biggest life challenge, multiple sclerosis (MS). Being an RN did not spare me feeling my world had been turned upside down. Frequent relapses and treatment side effects made the early years difficult. Depression intertwined with losses of job, paycheck, and self-identity. A decade of asking, “What now?” was black with the overbearing shadow of MS.
Gradually, knowledge, discernment and the passage of time allowed light and hope to return. Along my stumbling journey I discovered MS could be a presence in my life but need not claim its center. A newfound philosophy emerged and I dubbed it “Open your Red Door!”
“The Red Door” is a painting I did of a large, weathered, door on a centuries old church in southwestern Indiana. Age has faded the red paint and splintered the wood. Over-sized black wrought iron hinges and placement on a corner turret lend a sense of mystery and intrigue. At first sight, the door beckoned me to take a closer look and to capture it’s essence on canvas.
The painting grew to be symbolic of my life challenge with multiple sclerosis. Like the Red Door, MS is mysterious, powerful, splintered, heavy, and no one knows what lies beyond. Opening the door may elicit angst, fear, sweat, and tears. Walking through it musters courage and guarantees adventure. Behind the door one might find a pot of gold or a pit of snakes. No one knows.
What I do know is to live life well with MS, I must choose the daunting entry. I must have courage to push the Red Door wide open, to cross the threshold of acceptance, to face my challenge head-on, to allow myself to find good on the other side of bad.
I am strong enough. I can cross bloodied and bandaged, groping my way through the doorway, as I believe healing awaits me on the other side.
Challenges are a part of living. What we do with them defines us. Opening my Red Door has empowered me to embrace change and try new things: becoming a published author, international speaker, half marathon runner, and an MS Certified Specialist. Not everyone will find my methods palatable, but I share my simple thoughts hoping they might resonate with one reader. So, whatever your life challenge, I cordially invite you to, “Open your Red Door and live life well!”
Find out more about Mary on her website at www.openyourreddoor.com.