When I was given the topic of ‘Living a Regular Life at 22 with MS’ I initially thought it wasn’t something I was qualified to write about. Besides, my life isn’t very regular now a days- I pretty much stay at home all the time, I’m a uni drop out (x3) and I medically retired this year. Despite all of this, plus a very long talk with a good friend, I took on the amazing offer once I decided there genuinely isn’t such a thing of a regular life.
My name is Regan, I’m 22 and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) at the age of 16- ouch. Since my diagnosis I’ve been so determined to live this ‘normal’ life and the one I had pictured living while growing up, that I neglect the fact I actually achieve quite a lot, just in a roundabout way. I stayed in school and left with decent grades, I got a job I loved and I’ve had the teenage heart breaks and wardrobe disasters the same as everyone else. My health didn’t strip me of an awful sense of humour, it just created a more resilient version of me.
Trying to live the same as everyone else for anybody, chronically ill or not just won’t work out- I’m sorry, but it’s true. I look at my beautiful friends and other than a few similarities such as uni, they haven’t experienced the same things, so why did I put pressure on myself to? Chronic illness isn’t a death sentence, but I personally feel it would be naive and in someways a disrespect to say it isn’t exhausting, emotional and restrictive.
My life is perhaps regular in the sense of me loving all things clothes, baking, makeup and Sims 4. It’s regular in the sense of worrying about the future, just with a twist and it’s regular in the sense of me not having control over everything that goes on, and in some ways that’s a beautiful thing. Just recently, I tried a treatment to get my MS to calm down and it didn’t work. A night spent crying and eating chocolate was all I was willing to give that situation before I looked into my next venture. Life with MS is all about adapting and sometimes it’s more painful than others.
Overall, I don’t think I can fully write about living a regular life. I have the bladder of an 80 year old, my mum or boyfriend help me shower, to cook and to clean. However, I live with the ideology that my best will always be the best and that’s enough for me. To me, that is something that should be a regular thing in life. I am sorry that some people want to see a young girl fighting fit and overcoming all these things, but the reality is it’s just not that easy, especially with MS like mine that is proving difficult to get under control. My life is beautiful- difficult but beautiful and there’s still times I grieve over not living out the life younger me imagined but that’s okay. It’s normal.
My name's Regan, I’m living with MS and I am plain, simple and down right regular.
“We were delighted to be asked to donate to MS-UK’s first virtual auction and are thrilled to continue our support of the charity, in order to help raise money to fund the vital work that they do”, says Dan Farrell-Wright, director at Wickhams.
Dan continues, “The 'World’s Favourite Wine Selection' case includes six bottles, which are regularly updated, one from each of the big beasts of the wine world including Pinot Grigio, Rioja, Sauvignon Blanc, Merlot, Chardonnay and Malbec. All of the wines in the case are great examples of their type and have been carefully selected by us. The case includes...
Cinco Fincas, Malbec, Mendoza 2020
Peculiar Mr Pat Merlot, South Eastern Australia 2019
de Alto Tradicional, Rioja 2020
Whale Point Sauvignon Blanc, 2020
One Chain ‘The Googly’ Chardonnay, Australia, 2019
Calusari Pinot Grigio 2019, Viile Timisului, Romania
Sourcing the finest Estate bottled wines, here at Wickhams online wine and spirit merchant we curate collections from the everyday to the classics while ensuring there's something to suit all tastes. We passionately believe in stocking wines, spirits and gift sets at a range of price points, to ensure our products are accessible to all and were shortlisted in this year’s Decanter Retailer Awards.”
Make new friends, gain extra support, and, sometimes, just have a good laugh – our Peer Support Service offers so many opportunities, says MS-UK’s Vicky Timmins
Hello, I’m Vicky, MS-UK’s Peer Support Co-Ordinator. I have worked at MS-UK for over seven years now. Early this year, we started to develop our new service and I recruited a wonderful team of volunteers that have helped me to create individual ‘Peer Pods’. Each Pod holds regular online sessions over Zoom that are open to anyone living with MS. We help each other by staying connected, socialising, and offering support.
I’d love for you to join in if you’d like to. Please allow me to introduce some of our Peer Support volunteers, who will tell you more about their Pods…
The Media Peer Pod
Hosted by Amanda
The Media Peer Pod started during lockdown, at a time when we were all at home and many of us were spending a lot of time watching TV and films and listening to podcasts.
It occurred to me that we could talk about what we were watching and listening to and share recommendations with each other. The Peer Pod started out being exactly that – a fun chat and an exchange of tips. However, as we started to get to know each other, we started to talk about how we were. We all welcomed the opportunity to get to know and talk with people who know what we are going through and who listen, encourage, empathise and share information to improve each other's lives. It has become so much more than a chat about TV, it has become a safe space where we can talk, share, listen, support and ask advice of each other. We have become friends and we care genuinely care about each other's welfare.
"It is a safe space where we can talk, share, listen, support and ask advice of each other"
I would encourage anyone to come along and join our sessions every Monday at 3pm. We will give you a warm welcome and you will see our smiling faces – we love it when new people join us, and we would love to hear your story – if you want to share it of course! There is no obligation to talk – you may prefer to simply listen. You don't even need to be a TV, film or book enthusiast. The key thing that brings us together is that we are all people with MS, who are all trying to live the best lives we can and enjoying feeling part of a group of like-minded people, who are there to cheer us on and support us when we need it.
Men’s Peer Pod
Hosted by Steve and Chris
Steve – Our Men's Pod is about the experience of being a man dealing with MS. Chris and I try and create a safe and friendly environment where we can explore what it means to be male and have MS. People are heard, not judged, and sometimes have the balls to laugh at ourselves (if you excuse the pun).
At times we look at subjects that are difficult to talk about with others, and we also talk about our experiences and journeys. We know that we share the condition, but have different stories and journeys. Finally, like Vegas, what is said in the Pod stays in the Pod!
Chris – Our Pod has no fixed agenda. We have had many conversations on topics that we would not feel comfortable discussing with women present – I'm sure it's the same for the women. We meet once a week to chat properly, on a Monday at 2pm, but we can discuss anything any time on our Pod’s WhatsApp group.
Women’s Peer Pod
Hosted by Helen and Christina
Our Pod is about anything to do with MS and life in general. As we are mature ladies, we both have a lot of MS and life experience.
I was a counsellor and Christina a nurse who also worked on the MS Society helpline, so between us we have accumulated a lot of insight into the emotional impact of MS, plus the physical, financial, and environmental effects.
As a group we encourage support among our members. However, we also discuss how we do things differently, as our MS challenges us with new symptoms. We always respect each other’s opinions, giving each other time to speak, and answer questions. We do have a lot of laughter, too, I think MSers often develop a dark humour, enabling them to laugh at some of the weird symptoms, when at times we may feel like crying into our glass of wine! However a person is feeling, they can safely discuss it in our Pod. We have boundaries, meaning we keep things within our pod or WhatsApp group. So out of the Pod, you can chat on What’s App with the same ladies, and it isn’t led like the Pod.
"However a person is feeling, they can safely discuss it in our Pod"
All participants have a safe place to speak freely about themselves. Sometimes we have topics or themes – popular discussions have been the impact of MS on relationships, sex, bladder and bowel issues – nothing is off limits with us girls. Other times we just chat about our how we are feeling, or what we’ve been doing. We might talk about our pets, children, grandchildren, and art. Sometimes people want to listen and not participate, this is just fine too. We’re are also doing a six-weekly book club within the women’s pod, and looking at other ideas, possibly around healthy eating, and ways to exercise with MS,
If you are thinking of joining our pod, you will be made very welcome. You don’t have to come every week, and it’s fine to leave early if you’re tired or the subject doesn’t interest you. We’ve all been new to a group, so we understand how it is to be the new person in. I’m sure you will leave feeling like you have a new support network at your fingertips.
So please give us a visit on Thursdays, alternate times of 6.45pm and 4.30pm.
Keeping Connected Peer Pod
Hosted by Sarah
Our Keeping Connected Pod is all about having a good old chat, sharing experiences, asking questions or just listening and getting to know everyone.
There’s been nearly 30 people dropping in from time to time. Mostly there are about six to eight of us, some regulars, some new, and we chat about all sorts of things. Last time we chatted about horse-riding for the disabled, the Great British Bake-off and Masterchef, experiences with disease modifying therapies and problems with pets. We’ve even had someone demonstrate his banjo playing which was great fun!
"I would say to anyone interested in taking part but feeling nervous to just treat it as an opportunity to drop in and see how it goes"
It’s fantastic to meet MSers from all over the country now – such is the power of online technology! I think we all benefit from getting to know new people and forming new friendships. We’ve also got a WhatssApp group for keeping in touch.
I would say to anyone interested in taking part but feeling nervous to just treat it as an opportunity to drop in and see how it goes. I like to keep it pretty casual and would never put you on the spot unless you indicate you want to say something. I do hope you’ll grab a tea, coffee or your favourite drink and join us anytime between 3pm and 4pm on alternate Tuesdays. Hope to see you there!
Newly Diagnosed Peer Pod
Emma and Lisa
Hey, I’m Emma and I run the Newly Diagnosed (or, as we like to call it ‘Ready to Talk’, because you may have been diagnosed for a while but just not been ready to talk before) Peer Pod with Lisa.
We meet every Monday from 7-8pm on Zoom. There’s is no commitment to join us for the whole hour or even every week. The discussions are led totally by you and anything you would like to ask or find out about. Think of it as your one-stop-shop for friendly chat and advice. Whether it be discussions about medication choices and lifestyle options, issues that only those who have MS would understand (usually bladder and bowel related) or just what you have been up to that week, for that hour we laugh and try to forget about the reality of living with a chronic illness.
Come and join in!
We’d love to welcome you. To find out more about Peer Pods, email email@example.com
After seeing lots of adverts for doing a 100-mile walking challenge in October for some charities, I decided that I would like to take part in such a challenge.
I chose MS-UK because my brother, Matthew, was diagnosed with a progressive form of multiple sclerosis (MS) two years ago, and has now had to stop doing the marathon running and walking he loves. He now has to walk with poles and a leg splint. He is also dealing with many other aspects of the condition that are changing his way of life, and I spoke to him to ask about any help he had received. After diagnosis, MS-UK were able to offer counselling sessions to help him and his family come to terms with his diagnosis and help him cope. Matthew says he can’t speak highly enough of this service and would I fundraise for them. I love walking my dog Merlin, and to have a special reason to do more walking was an easy decision to make.
One hundred miles in 31 days doesn’t sound that much, but if you miss a day, that’s 6.5 miles the next day! I decided to try and 'bank' miles when I could, by doing longer walks so that I didn’t have to play catch up. The weather was really kind to us and thankfully we only got wet once. I completed my 100 miles on the beach at Ryde, Isle of Wight, on 27th October with Merlin and my husband. Many friends and family joined me on walks which was great. The most special walk was when Matthew asked to join me on one of my walks. We managed three miles along the River Thames at Marlow. He is an inspiration and I am so happy to have supported him and the charity that has helped him so much.
Julie Gould documents her journey with restless leg syndrome and medical cannabis
I was diagnosed with relapsing remitting multiple sclerosis (MS) in 1994. I was working as a corporate lawyer but had to be medically retired. There were no treatments back then and no one really had the internet or a mobile phone. The early days were very bleak.
I had highly active MS with two or three relapses every year. I always refused steroids as I was put in touch with several people who followed the Roger MacDougall diet and they told me that steroids didn't change the long-term outcome of MS, but that they could have serious long-term consequences.
In 2009 I asked my doctor to put me on Tysabri because my sister had done so brilliantly on it. It stopped all attacks instantly and I'm still on it as I'm John Cunningham virus negative (Tysabri can increase the risk of the John Cunningham virus infecting the brain).
I have had every possible MS symptom, but in particular, nerve pain has always been severe during my relapses. Trigeminal and occipital neuralgia are both excruciating. Desperate for relief, I sourced illegal cannabis and it helped enormously with nerve pain, so I’ve was always been aware of its power to help with pain.
I had been following medical cannabis news, so as soon as it was legalised in 2019, I would watch and search the internet for updates and information. I came across Project-twenty21 run by Professor David Nutt of Imperial College London and applied as soon as it started prescribing in 2020.
Restless leg syndrome
I wanted to try it for my worst MS symptom – severe, refractory restless leg syndrome (RLS). This is a serious neurological disease - people who have it have a three times higher risk of suicide. It's thought to possibly be caused by spinal lesions. Despite how debilitating it is, it's not taught at medical school or during GP training and so most GPs know nothing, or very little, about it. They prescribe dopamine agonists which work brilliantly at first but inevitably cause a severe worsening of the symptoms. It consumes your life. You cannot sit still or sleep as the torturous sensations start troubling you day and night. Mine affected my legs, arms, back and face. I seriously considered suicide to end the suffering.
Luckily, I found the organisation RLS UK and the knowledgeable members advised me how to safely withdraw from dopamine agonists with the help of opioids and cannabis.
Once off dopamine agonists, I was taking oxycontin and pregabalin but I still had severe RLS, with a score of 36 out of 40 on the International RLS scale. I was waking two or three times every night due to it.
I applied for medical cannabis to help with sleep and RLS UK. It gave me three to four hours of deep sleep after years of never getting more than one or two hours’ sleep in one go.
I then heard about buprenorphine, an opioid used for Severe RLS in the USA. I asked my RLS neurologist for it and he was not very helpful, but did say he wouldn't object if my GP agreed to prescribe and monitor.
My new GP was fantastic and agreed instantly. I did send her all the relevant research documents to support my case.
The results have been miraculous. I started buprenorphine six weeks ago and have had eight hours of sleep every night and zero RLS. I developed severe nausea for the first ten days, but then I remembered cannabis is used by chemo patients for nausea caused by their medication. The medical cannabis stopped my nausea. I waited a week, stopped the cannabis and the nausea had gone.
I now want to spread the word about low dose buprenorphine for severe RLS as there are tens of thousands of patients still suffering nightly torture. Most doctors are totally ignorant about how to treat them effectively. It's like MS treatment in the 1960s. Zero help and very little knowledge. Just look at any RLS Facebook help group.
I would recommend MS patients access medical cannabis as it can really help with pain, spasms, bladder issues and sleep. It's expensive, but hopefully that will reduce as more patients use the service.
Accessing medical cannabis
In November 2019, the National Institute for Health and Care Excellence (NICE) in the UK published guidance for cannabis-based medicinal products. The guidance states that a person with MS who experiences spasticity that is considered moderate or severe should be offered a four-week trial of Sativex, provided that existing spasticity medications available on the NHS are not effective.
There are conditions that must be met to be put forward for NHS funding. The drug company must be willing to fund initial treatment through their ‘pay for responder’ scheme and the person using the Sativex must show at least a 20 per cent improvement in their spasticity. This means that the drug company will fund the first four weeks (3 x10ml vials) of medication (if there is agreement for continued funding) for people who gain measurable benefit.
The other route to Sativex in the UK is paying for the medication through private prescription. Costs can vary per pharmacy and clinic, but it may still be possible to access the pay for responder scheme.
Click here to find out more about medicinal cannabis and download our Cannabis Choices booklet.
Read next: A beginner’s guide to Spoon Theory
HR expert Rebecca Armstrong explains how to ask for further adjustments if your needs change
When you have multiple sclerosis (MS) you may find that you need to ask your employer to make a reasonable adjustment to enable you to access work. Adjustments can be short-term changes to support you to get through a specific period, such as phased return to work or a permanent change which therefore becomes contractual.
As we know, MS changes with time, either through progression or because of relapses. This means that the adjustments we need may also change. In my experience many people with MS can find it hard to ask for changes or further adjustments once an agreement is in place which can mean that they ‘make do’. It is important to know that asking for, and receiving an adjustment is not limited, you can ask for as many as you need and as frequently as is required.
Today I am sharing my top tips around how to approach asking for a variation of adjustments
- MS is a complex condition (you don’t need me to tell you that) which means that it can be hard for someone who doesn’t have MS to fully understand what it is like. It is useful when you are talking to your company to share some information on the condition. In this context the key is to share that over time you may need different things and there could be periods where things are worse and then better again.
- This allows you to have a conversation about making adjustments flexible, having agreements about how you will be supported when you have bad days as well as good days. So, for example, you may have an adjustment that says you can make a decision to work from home on the morning when you wake up (rather than giving notice of it for example) so that if you are having a bad day, you can still access work.
- You may want to ask for regular reviews, perhaps as part of 1-2-1 discussions. This creates an opportunity to evaluate how an adjustment is working and to make changes as required.
- Think about what is working and what isn’t so you can be clear about what you are asking for. It’s often useful to think about the impact on work an adjustment might have so you can have this discussion with your manager.
- You may want to ask to be referred to Occupational Health, this can be a good way to review adjustments and to get support for changes you might want to request.
- Set up a time to discuss your needs, it is useful to also put your request in writing so that you have a clear follow up.
Remember that reasonably adjustments are a right within the equality act, although they can be refused there does have to be a good case for this and you can challenge the decision through the grievance processes.
In 1995, MSer Melissa Cook moved her young family to a tiny village in North Alaska with a population of less than 100
Melissa Cook lives with multiple sclerosis (MS) and spent 20 years living on the Alaskan coast and then on an island in the Tongass National Forest. She’s written her story in her new book, which documents erupting volcanoes, 100-mile-an-hour winds, needing a pistol for bear protection, and all the other dramas of living in such an extreme location, all while navigating the course of her condition and finding humour in unique situations.
Here she recounts a time when unpredictable symptoms inspired her to pen a poem.
The Dockside Cafe sat right on the edge of a Pacific Ocean inlet in the tiny, remote community of Craig, Alaska. It had been an hour's drive into town on icy roads, and I was ready for a meal.
I parked my truck in front of the small log cabin restaurant, held my hood tightly under my chin, and dashed for the door in the blowing snow. The waitress seated me at a table and asked if I wanted anything to drink.
"Hot cocoa, please," I said with a smile. She knew how I liked it – loaded. I looked forward to dipping the whipped cream into the hot chocolate one spoonful at a time.
I shivered to warm up as I looked across three empty seats at my table and watched the storm in the bay. Most of my friends worked during the day. I left teaching for medical disability more than three years ago. My friends envied my freedom, while I longed for their sense of belonging and accomplishment found in showing up for a day's work. Now, I blogged on www.MSsymptoms.me from home, alone.
Steaming hot chocolate was placed on the table in front of me. It was perfect with its fluffy whipped cream drizzled in chocolate syrup and dotted with colorful sprinkles.
My hand reached for the spoon. Instantly, I knew something wasn't quite right. I held the spoon in my hand much like a toddler holds a crayon for the first time. ‘That's strange,’ I thought to myself. I struggled with the spoon, which felt foreign and was now upside down as I fumbled with it.
Using my other hand, I awkwardly set it in the correct position. Several minutes passed. The whipped cream dropped from the heat, and the color bled from the sprinkles. Carefully holding the cup with both hands, I sipped my drink instead.
I never figured out how to hold the spoon that day. Though I was concerned about the odd new symptom, I was also used to MS sneaking up with its bag of tricks to surprise me. Some surprises were more significant than others, but they were surprises, nonetheless.
The next day, I woke to an empty house as usual – my husband was already teaching in his classroom. I could hold a spoon again. So weird. I sat down at the computer in my pajamas, looked out the snowy window, and decided to write a blog post. Out came the only poem I've ever written, ‘Sometimes’.
Sometimes, I need a little help now and then, so I have learned to ask.
Sometimes, I have pain, so I have learned to manage.
Sometimes, I am lonely now that I am on disability, so new friends I have made.
Sometimes, I miss my career, so I have learned to write.
Sometimes, I feel sadness, so happiness I choose.
Sometimes, I must figure out how to do things differently, but I still do.
Sometimes’ is in Melissa L. Cook's memoir, The Call of the Last Frontier: The True Story of a Woman's Twenty-Year Alaska Adventure (2021) is available on Amazon.
Today, 01 November marks World Vegan Day! To celebrate, we've got a tasty soup recipe to warm you through the autumn and winter months.
Recipe sourced from Soupologie 5 a day soups: Your 5 a day in one bowl by Anastasia Argent (Kyle Books, £16.99, octopusbooks.co.uk)