Gary Williams on his journey from diagnosis in the 1980s to the present day
I was 28 when I was diagnosed with multiple sclerosis (MS). That was in 1985, in the decade that fashion forgot, but one that sticks forever in my mind.
My symptoms started a year earlier. I was having a shave one morning and noticed that the pupil in my right eye was huge, whereas the one in my left was tiny. Unusual for a Tuesday, I thought, and when I blinked and looked again, the pupils had changed and the left was huge.
At first, I was just mildly amused but, as time went on, I began to question whether or not something was going on. I started having spasms and my body would cramp up quite painfully. To cut a short story long, I had all the usual tests, a lumbar puncture, and it transpired I had MS. My doctor gave me the news in the best way for me. He asked what I thought it was and what I would prefer it to be. I told him I was worried about it being a tumour as I had many brain scans, and also that it may be MS. He asked which I would prefer of those options and I answered, “MS, as removal of a tumour may alter my personality.” (Something which may have been welcomed by many!). He answered, “Well, congratulations, you have won your first choice”. Perfect way to tell me.
The first six weeks after my diagnosis were strange. It seemed to affect others far more than it did me. I spent most of that time comforting people, putting my arms around their shoulders and telling them everything was going to be fine. I suppose we were all stumbling around in the dark, as no one knew what we were dealing with. No one thinks about these things until they affect you or someone close to you personally.
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Georgi Gill is looking for people to take part - no experience needed!
Since my diagnosis of relapse remitting multiple sclerosis (MS) in 2003, I have found it difficult to describe my illness experiences to family, friends and colleagues. I learned the medical terminology for my symptoms. Yet dysesthesia, optic neuritis and cognitive dysfunction don’t communicate the feelings of living with numbness, blurred vision or fatigue. I am not alone in this – it is acknowledged within the MS community that many people have difficulty explaining our illness to those around us.
As a poet, words are my stock-in-trade so I am very keen to find ways of improving this communication shortfall. Accordingly, I have developed the Poetry and Multiple Sclerosis (P.a.M.S.) Study, at the University of Edinburgh, in which I am inviting people with MS to try writing poems about their illness so we can explore whether poetry may give us new ways to communicate our MS to those around us.
People living with MS in the UK may be eligible to take part in the P.a.M.S. study which is happening online. Participation involves up to two interviews with me, and attending relaxed poetry workshops where there will be opportunities to try writing poems. No previous poetry experience is required, although if people have written poems before, they are also welcome.
To find out more about the P.a.M.S. Study, take a look at our website. If you have any questions or would like to discuss taking part, all the contact details are on the site.
Ian and Jo Fletcher on being a husband-wife team when one of you is a carer
Ian Fletcher was diagnosed with multiple sclerosis (MS) in 2006. Only two years in to their relationship, the couple faced the challenge not only of managing his new health condition, but navigating their change in dynamic as Jo took on the role of his carer. “Initially I found it daunting to take responsibility for the many things that Ian did for us,” admits Jo. “As a couple you tend gravitate to taking on those jobs and roles in which you feel most confident. However, I've learnt so much and grown in confidence, doing things that I would once have avoided at all costs!”
“It was hard for me to admit that I needed Jo's help more frequently,” says Ian, “and I was unsure how Jo would cope. Over time my confidence grew as we learnt and faced new challenges and changes together.”
One of the biggest challenges was Ian handing over the apron strings to Jo, as Ian prided himself on his culinary skills. “I found I was unable to do things I had previously and felt frustrated. I really enjoyed making all our meals and impressed Jo when we met with my cooking! As MS progressed I took on a supervisory role and Jo now cooks our meals for us, with supervision.”
“As I took on this role, my skills improved and I found that I enjoyed cooking too, with lots of supervision!” says Jo.
Change and adapt
The couple say spontaneity is difficult, but they have learnt to be flexible with arrangements and commitments, allowing themselves more time and accepting that plans may have to change on occasion. “We discovered that we were unable to do some things and coming to terms with this was, and can be, challenging,” says Jo. “Over time, we have adapted to enable us to continue to enjoy many things we did before MS came along.
“We have been so lucky to travel to many countries together, but nowadays we face more limitations and there are many things to consider before deciding on a location. However, this hasn't stopped us and we have had some amazing trips in the UK and abroad (albeit with a little more forward planning). We continue to enjoy trips to the theatre, watching our beloved England team play rugby at Twickenham, and plenty of socialising with family and friends.
The couple have amazing family and friends who have been very supportive over the years and continue to be a major part of their lives.
They also have a lot of praise for the multidisciplinary team at East Suffolk & North Essex Foundation Trust. “The collaborative approach to the provision of Ian's care has been invaluable and we are so grateful to everyone in these teams who continue to support us,” says Jo.
Ian has been going to Josephs Court, the wellness centre at MS-UK, twice weekly for many years to build and maintain his muscle tone and strength. However, Josephs Court has had an incredible impact on his mental health and wellbeing too. “We greatly value the support from the incredible staff team at Josephs Court and wealth of information that has had such a positive impact on us both.”
Caring for Ian has come naturally to Jo, but she admits she’s had to work harder at caring for herself, too. “It has taken me time to accept that, on occasion, it's OK for me to have a quiet day and make time for myself, too. As a couple, and individually, we have strong family and friend networks. Thanks to our family I am lucky to be able to meet with friends regularly, which I value greatly.
We asked Ian and Jo what advice they would share for any couple beginning this kind of journey together and they said the following
· Listen to your body and allow yourself time to rest, when possible, when you know you need to
· Whenever possible, adapt your lifestyle to continue enjoyment of things that you love to do (albeit with more planning). Don't assume that something isn't possible
· Be honest with yourself, as a couple and others, about changes, challenges, your needs and wishes
· Keep your sense of humour and laugh together. There have been so many occasions when things haven't gone to plan or have gone wrong. However, often these challenges have been the memories that have made us smile and laugh in retrospect
· Accept that it's OK and natural to have good and bad days in your relationship, the same as any couple
· It is important to make time for one another, as any other couple would do. MS symptoms such as fatigue may impact on your daily lives and your ability to spend quality time together
· Don't place unrealistic expectations and pressure on yourselves. Talk to those around you in order that they understand your situation and can support you
· Don't assume responsibility for all things, as you each have different opinions and strengths. MS often deprives freedom of choice
· Take time for yourselves as individuals and stay connected with your interests
· Make plans, have goals, hopes and dreams
“We've faced many changes and challenges due to MS,” says Jo. “However, these experiences have strengthened an already strong bond. We have a greater understanding of one another as a result of our situation. We each have our own strengths and, as a team working together, we feel we can tackle anything.”
Hello, my name is Sophia, I am Seven years old and I care a lot about MS-UK - It feels cool knowing I’m MS-UK’s youngest volunteer! I started volunteering because I like helping MS-UK and I want to help people affected by multiple sclerosis (MS), I want them to feel happy and have a smile on their face. My great aunty Loraine has MS and she isn’t very well. I started by helping her, but I also want to help other people too.
I started volunteering for the MS-UK cheer-point cheerers when I went to watch my mum run the Virgin Money London Marathon in 2017. My dad and I cheered with Jenny at mile 17. I enjoyed it so much I wanted to do it again! Sometimes it gets cold standing around but I don’t make a fuss because the cheering is more important!
The best bit of volunteering is cheering everyone on at events, especially when I’m allowed to use the megaphone! I like to cheer all the runners, “Well done runners! You can do this! Do not stop! The quicker you do it, the quicker it’s over!”. I also like to look out for the purple t-shirts so I can shout MS-UK! And one time Jenny bought me chips so that might be the best thing that’s happened at an event!
For World MS Day, Clive Whyte explains how connecting with our counselling service helped him transform his mental health
A diagnosis of Multiple sclerosis (MS) is a very big thing to take on board, and it hit me like a ton of bricks.
At first, I thought I could handle it and just stride through life with no worries – it’s just a condition! However, the mind has a way of catching up with you and stopping you in your tracks. After being diagnosed, I started having issues with anxiety that was affecting my day-to-day life.
I read about MS-UK’s Counselling service and decided to refer myself.
When I had my first session, I spoke to a completely neutral counsellor about everything and anything that had been troubling me daily and causing my anxiety. There was absolutely no judgement, just a listening ear.
After the sessions, I felt like I had lifted a lot of troubling thoughts out of my head. I’d felt like I had a lot of tangled, knotted thoughts in my brain, and counselling helped unravel them. It helped me to think more clearly.
My partner is my rock, and she has seen me go through some quite dark moments. However, she tells me she has definitely seen an improvement in me recently. I still have good and bad days, but I feel a lot more in control of my thoughts in general.
My confidence has grown more and more since my counselling sessions, and I feel a lot more comfortable in social situations at work and with friends. Before, I would avoid a lot of these situations due to anxiety.
With time, and the help of counselling, I began to accept my condition and come to terms with a lot of the other things you need to process after an event like this, and that’s exactly what I will continue to do.
Counselling was a way for me to release feeling trapped within, and allowed me to feel more relaxed in myself and with who I am. It’s been a gift for me, and one for which I’m very grateful.
How to look after your mental health in lock down? Try keeping a routine, says author and MSer Clare Ann Smith
This is the first year I've felt well enough to want to do social things because I’m more physically able, and we can't leave our homes unless for emergency food and a walk. It's ironic for my situation. And, for a lot of others I imagine, who are now feeling the benefits of their treatment for multiple sclerosis (MS).
I consider myself luckier than most. I’ve always been ok in my own company. And being in a role where I was working in the office and working from home, I got used to quiet periods within my day.
During this lock down, and with many people furloughed, I think everything has felt heightened, because we’ve been told we can’t do things that we usually do. We’ve temporarily lost some freedoms, and when I think about it, I think that our time in lock down becomes about building a life not focused on our lack of freedoms. I’ve heard, in many true crime documentaries and interviews, inmates in prison for long periods of time say they survived by having a routine.
They have certain times which dictate recreational time, eating, and bedtimes, but creating a routine for themselves was what made their time inside manageable, bearable and kept them going.
I have applied this principle in my own life since the lock down, and an average daily routine for me looks roughly like this, with me keeping my waking, eating, and bedtime the same
6.45am Wake up, have a coffee and three raisin biscuits in bed, take medications and watch two episodes of a boxset. Pure bliss!
8.30am Yoga for 40 minutes (You can follow videos on YouTube)
9.10am Meditation for 20 minutes (I have apps on my phone, but you can also access meditations online like this one on MS-UK’s YouTube channel - click here
9.30-10am Shower, get washed and dressed for the day.
I find it’s best to do any noisy activities in the morning. I plan my day as such, so my morning could then look like this
10am-10.30am Speech therapy warm-ups. I have sheets of exercises but if you have Alexa, you can get vocal warm-ups on it! My brother Paul shared this gem of info with me, and I’ve done it every day. It really helps, and could help your voice, especially if you live alone, or you’re by yourself a lot because you might not actually be speaking as much. But you could just as easily put on the radio and sing to your favourites, or put on a CD of your favourite band or singer and sing-along to them.
10.30am Make tea! It’s either fruit teas bought in a box, normal tea with a bit of honey, or I have fun using fresh ingredients and making my own. The tea pot pictured is the Chelsea Glass Tea pot from the company Whittard, and holds six cups. I use real fruit, raspberries, and blueberries, segments of oranges, pears, apple, as well as their separate peels or adding a wedge of lemon. Mint and orange tea is quite nice. Thyme leaves are good to put with lemon wedges and berries, they balance out the taste. Thyme leaf tea has antibacterial properties and can be used to gargle with for sore throats. Enjoy a cup or two.
11.15am FaceTime or call a family member or friend. I have a large family, so I’m not short in people to chat to, and I FaceTime my friends.
12.00 noon Lunch, usually a salad or soup or I’ll cook something now, but have a lighter dinner later, depending on how hungry I am really.
1pm Catch up on emails.
1.30pm-6pm Time doing creative things. I’ve just finished editing my book, written over the last three years, which is free to read on wattpad, called Sunshine and Hand Grenades. It’s about my MS journey, so I’m getting word out about that on my social media. My family have been sharing their favourite quotes on their social media, so will hopefully get a buzz about that going.
I also spend this time listening to music quietly, and making concept boards and mood boards for interior ideas that I have. I do this on A3 paper, and keep whatever I create and put in neat A3 folders, so they stay nice.
I have recently started, and therefore spend an hour or two on, an Interior Design Business course, which is teaching me more, and complements my Level 4 Interior Design Diploma which I completed in April 2019.
18.00pm Watch the news
19.00pm Make and eat dinner, and watch another episode of a boxset
21.00pm Get washed and ready for bed, take medications, and read
22.00pm-23.00pm I usually fall asleep
I did online shopping over the Easter Bank holiday weekend and bought every one’s birthday presents, which go right up into the month of September! Delivery has just arrived as and when.
I’ve been for walks, too, because I live in the countryside, and I do this twice a week, usually in the afternoon or just before dinner. I make it interesting by challenging myself to at take at least five photos with my phone of something on my walk which has caught my eye.
I’ve made an ‘inspiration wall’ by cutting out things in magazines; using the print-screen button. I’ve found prints and art work online, using the pictures from my walks and then printing it all off and just taping up pictures that I really love, with simple masking tape, so as not to damage the paintwork. I make the most of my surroundings by lighting candles in the evening, and I’ve brought out different throws and blankets.
My Dad potted beautiful flowers for the garden patio area for me, as well as some vegetables in large tubs in early March just before the lock down was announced, and I can now see that they’re growing! We’ve been quite lucky weather-wise.
I hope, as we near the end of lock down, when it’s officially ended, that we all remember the kindness of others, and continue to pay it forward somehow. I’d like to thank my parents and family for helping me during this period.
Talat Ahmed explains how Islam helped her cope with her diagnosis, and the struggle to fast during the holy month of Ramadan
My faith was really important to me after my diagnosis. Muslims are taught that life on earth is temporary, that this life is a test, and you must live it being as good a person as possible. It is human to be kind and respectful to all living things, and to all faiths. This is not to say that I don’t feel frustrated that I can’t be the person I was when I was fit and healthy at 19 years old. However, especially after the age of 40, I have accepted my MS and make the necessary adjustments to my life far more than I used to.
The same cannot be said about some of my family members and friends, who do not see me live with MS, but to me that’s OK. My faith gives me hope that things will get better for people diagnosed with MS and in the meantime, I am grateful for what I have and will keep going as much as I am able to. I desperately don’t want to be dependent on others, but sometimes you have to, and I am thankful that they let me.
The holy month
Ramadan is the Islamic holy month where Muslims fast for a period of 29 or 30 days, depending on the sighting of the new moon. We consume no food or drink between dawn and sunset. This year it runs from 23rd April to 23rd May.
The purpose of doing this is because as Muslims, we believe that it is the time to feel closer to God. It is a deeply spiritual time when we as a community become more focused on prayer and instilling a discipline to carry on the day without any food or even a drop of water. Instead, we focus on being thankful for what we do have, give to charity, reflect and correct our behaviours as human beings and not waste our time here on earth. We are not eating food and drink and we do this because we want to please Him.
In winter months, fasting during Ramadan was fine – not too hot. I got plenty of sleep because there were less daylight hours, and it felt great to be taking part with all the family. It felt really fulfilling. However, every year after Ramadan I felt my condition slightly worsen. But I persevered.
It was important to observe fast, because it was what I was brought up to believe. The atmosphere in the household changes. Family feels more unified. We know we are going to have extra special food to look forward to – not the healthiest I hasten to add. But especially when you’re a kid, although not obligatory to fast until puberty, there’s a change of routine to follow that felt special and came with a sense of togetherness, which is difficult to capture in words.
The Islamic calendar follows the lunar calendar which is shorter by roughly 10 days a year. Therefore, when Ramadan fell in the summer months, it was torture! I couldn’t wait for my respite (women who are on their period do not keep fast, but they have to make it up within the year). However, to my horror, my period never came, and annoyingly it was like that for five years!
People who are ill or have chronic health conditions, or mothers who are pregnant or breastfeeding are not required to fast during Ramadan. Therefore, last year was the first year I did not keep fast and I really felt like I was missing out. The weather was unbearable and so, with guilt, I felt relieved that I was not taking part. To make up for not fasting, I gave money to charity, so a poor person would keep fast on my behalf, which is equivalent to paying a person £5 per day. But, just because I do not keep fast this does not mean I cannot take part in all the other activities, so that has not changed much, and I do as much as I can.
The hardest part
The biggest challenge of Ramadan has to be lack of sleep. I need sleep. I love sleep. There’s a saying in Islam – ‘Prayer is better than sleep.’ I couldn’t quite follow that mantra. Tea and coffee withdrawal is hard, and I would normally give up tea and coffee and definitely eat a lot less chocolate during Ramadan. As soon as it ended, though, alas so did those good habits.
There are so many forums now and so much information out there on how to receive help. People live much better lifestyles nowadays by changing their diet and going onto disease-modifying treatments much sooner than when I was first diagnosed. Finally, we are so lucky to have the NHS in the UK and there is now a far greater investment into MS globally, which gives me hope that someday there will be a cure.
As part of MS Awareness Week, MS-UK Wellness Coach Alan Pearson discusses the importance of exercise for mental health and how to get started.
With MS awareness week upon us it is right that we highlight the profound physical and mental effect a condition such as multiple sclerosis (MS) can have on individuals, partners, carers and family members, especially at this time of lockdown. So it is important that we talk about exercise and mental health.
What is it?
So what is our mental health? Well, it's our state of mind that includes our emotional, psychological and social wellbeing. It affects how we feel, think and function. Whether you want to get up today or not, join in that social group, take part in an exercise programme, do your daily activities like washing, tidying, gardening, and personal care. Of course, this is all unique to the individual and we are always on a scale of mental health each day as events, situations and circumstances unfold.
We may not feel that we are physically able to due to fatigue, stability, balance and coordination issues, weakness in our limbs or trunk, sensory issues or a combination of these - it all has an effect on our confidence and state of mind.
Physical activity is an important and crucial part of the journey with MS, along with dietary and lifestyle habits, as well as sleep. Exercise helps improve and maintain our cardiovascular function, strengthens muscles, keeps ranges of motion in our joints, improves bone density, increases energy, and slows cognitive decline. All this has an effect on improving mood, reducing stress, lifting our self-esteem and reducing anxiety and depression.
It is also important that we keep moving and stay vascularly well to reduce any chance of getting secondary medical conditions associated with a more sedentary lifestyle, whether you have a long term condition or not.
This is all well and good to read, but we are not all ‘get up and goers’ so, where do we start? First of all is having an idea of what you would like to do, or setting a task or challenge. You need a purpose to do something! Maybe at the beginning of the week, sit down and work out a schedule of what you are going to do that week. It will help as we all tend to work to appointments. So set an appointment with yourself to do some activity or exercise. It works, trust me!
Some people may need additional support to facilitate an action, or it might be that you are not in the right mental space yet. MS-UK is always here for you with our free helpline on 0800 783 0518 and you can access our counselling service here.
Check out our online exercise classes on our YouTube channel here.
Finally, enjoy whatever you do and be around positive people. Exercise is a powerful medicine and can bring many benefits which will improve your quality of life and give you social and physical wellbeing. Stay safe stay well and I will see you at my next MS-UK online exercise class.
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Mindfulness expert Anna Wille shares advice
For more information please visit www.annawille.com
This month, we at MS-UK are pleased to introduce our two newest Community Champions, sisters Pauline and Christine. Having witnessed the effects that multiple sclerosis (MS) has on a person and their family, Pauline and Christine have joined forces to fundraise for MS-UK without having to go out for a run!
‘With my marathon days being over, I decided to become a Community Champion for MS-UK,’ says Christine. “My sister Pauline and I have distributed the first of our collection pots around the local area, and look forward to collecting them in a few months!’ Christine was diagnosed with MS 25 years ago but considers herself very fortunate as her symptoms are ‘very mild’. No stranger to the condition, Christine has two cousins affected by MS and both her aunt and nephew (Pauline’s son) Philip passed away due to complications with MS. ‘My biggest inspiration for wanting to help MS-UK is my nephew Philip,’ she explains ‘Philip was an amazing man who, in spite of his disabilities, was determined to be as independent as possible and live life to the full. I never ever heard him moan or complain and he always made us laugh. I saw first-hand the challenges he faced after such a diagnosis and how MS-UK could be a huge support in such times.’
Pauline has also been inspired by her son Philip’s positive outlook on life, despite his MS diagnosis. ‘Phil was truly inspiring, his sense of humour and outrageous sense of fun made him a pleasure to be around,’ she says. ‘Eventually, Phil could not do anything for himself, just move his head to work the button for his computer, but he still kept his sense of humour... In spite of his disability, he didn’t want to die. One of his carers said to me that weekend that whenever we went to Phil’s, we could be having the worst day, and we would always come out smiling. We were all very proud of Phil. ‘Near the anniversary of Phil’s death each year, we hold a coffee day to raise money for MS-UK. Three years on I decided I would like to do more to help the charity. I could not commit on a regular basis, so becoming a Community Champion fits in perfectly with our lifestyle and it is great to talk to people in our local area about MS-UK.’
If you’re considering becoming a Community Champion and becoming part of the MS-UK family, get in touch with Lucy on 01206 226500 or Lucy@MS-UK.org to find out more!