Janet Orchard looks back on a lifetime of connections
The theme for last week’s World MS Day was ‘connections’, kind of ironic in these days of not being able to be physically connected to anyone. But it got me thinking about my own connections over the years.
When diagnosed I retreated into my shell. In 1995 there was no Internet for the general public, no Google, no one to tell me what to do. I had been connected (we called it networking back then) in a demanding career, so frantic that I hadn’t had time to be connected on a personal level to many. Business acquaintances fled – they didn’t want to be connected with someone unable to be the same as them and I felt they saw no value in my life any more.
I was still connected with the restaurant world from where I gained some lovely friends.
Bedridden for the first three months, I felt very vulnerable and disconnected but didn’t let it stop me. My neurologist had told me to continue life as normal and not even research the subject or connect with others with multiple sclerosis (MS).
Time to get a new life. I upped roots to live in Vietnam where I was wonderfully supported as I connected with many caring Vietnamese, with whom I am still friends today. No one knew what MS was. It was translated (wrongly) for the gardener who eyed me suspiciously for a while wondering if my brain was about to fall out. I shared his views but generally forgot about MS as neither medications (luckily) nor diet options (sadly) were on the cards.
Back in Blighty
Upon my return to the UK in 1999 the Internet was blossoming. I could become connected. My first start was with a wheelchair specialist to enable me to do more than stagger a few paces with a cane. My second was an MS therapy centre. My third the MS nurse who did her damnedest to change my primary progressive MS diagnosis to relapsing remitting MS so she could get another patient on Beta-interferon. We didn’t connect.
I subscribed to an MS magazine which would send me into depression even as it landed on the doormat. Oh, life was going to be exciting. Living in Scotland, a far cry from Vietnam, my connections were limited.
The MS capital
There were many people with MS. I saw them being ferried around in minibuses to health centres and hyperbaric oxygen chambers. Neurologists plied me with drugs, brain fog was new to me, such that I couldn’t even connect to myself let alone anyone else. Although I got off lightly, refusing all but a few drugs (Amitriptyline, Ditropan, Baclofen – the latter rendered my legs completely useless).
I lived pretty much in isolation, apart from a lovely neighbour who was well versed in MS, having lived in the world’s capital of the condition for so long. She would carry bundles of Internet-ordered research books for me across the lawn and get my central heating working again when my husband was away on one of his many business trips.
I could see no way out of the MS nightmare which seemed to be a question of being kept alive (if one can call it that) on drugs.
The natural approach
Fortunately I was still connected to many old friends. One, a medical rep as it happens, sent me a copy of The Multiple Sclerosis Resource Centre’s A to Z Guide to Complementary Therapies by Judy Graham. I almost cried with joy. At last, there was a way to heal rather than band-aid the problem. It would mean a lot of research and networking with like-minded souls.
I swapped my other depressing MS magazines and their obituary columns for New Pathways, becoming a regular writer. Through New Pathways, I started to build my network. The editor Judy Graham patiently edited my articles. Ashton Embry changed my life with the Best Bet Diet. Following Mat Embry’s journey (diagnosed the same year as me) I had found others who were not going to be drugged out of existence.
After 11 years on the Best Bet Diet I realised that my body needed a more extreme plan. Researching candidiasis led me to the late Ann Boroch who was the connection I had needed, encouraging me that yes, I would get out of my wheelchair, with diligence and patience. She was so generous with her time as I learnt from the oracle herself what candidiasis was all about.
With my building blocks in place I set off for my next phase of life in Catalunya, the place to which I had had more connection than any other, having lived there under Franco in the early 1970s and visited frequently since, working out of Madrid and Barcelona in the 1980s, I had been well connected in the business world.
It was a place I could call home at last and start to get my connections really underway, holistically. Massage therapists, cranio-sacral therapists, energy practitioners, health food store owners, organic farmers, cheesemongers, fishmongers, olive specialists, organic meat suppliers, cannabis grow shop owners, restaurateurs – there was so much to choose from.
The missing connection was mainstream medicine, which is what of course the MS Society would prefer me to be connected to.
Since the early days of Facebook I have been connecting with others with MS, sharing our journeys and our distrust of the ‘supportive’ disease-modifying therapies that have killed many of our friends and left others unable to do much connecting at all.
Being connected in this way is priceless. We all know who to trust, and who amongst us is the font of knowledge on anything we may need to know, be it natural supplements, foods, meditation, counselling, dentistry, chemistry, hypnotherapy, emotional freedom technique (tapping), blogging, mobility devices, children and pets with candidiasis, aromatherapy, massage, exercise, inspirational quotes, music, physiotherapy, humour (finding the funny side of life with MS is possible), fluency on the subject in various obscure languages, how to navigate FB… the list is endless. By connecting to all these people, not just with MS but the wider audience of those with candidiasis which may caused the problem in the first place, we are creating positive change.
Every week I receive a message from someone whose life is back on track, who was helped by our connection.
Thank you to all those I have had the privilege to learn from.
Just as I had finished writing this, one of my lovely connected friends posted as if she knew, “Never doubt that a small group of thoughtful, committed people can change the world. Indeed. It is the only thing that ever has.” It’s a quote from Margaret Mead the American anthropologist.
MS-UK has been close to my heart for 10 years after my mother was diagnosed with MS in 2009. As a 15-year-old, I struggled to comprehend what this really meant, certainly in the long term, and how best to help her through what was happening. My experience as a volunteer has ranged from physical challenges to now sitting on the board of MS-UK. Being a ‘volunteer’ means different things to different people and I wanted to share my thoughts on this special week to appreciate those who give their time to causes most in need of their amazing support.
Personally, I see volunteering as a contribution to a cause that holds deep resonance. Volunteering is such a powerful concept because it presents itself as a means of contribution that anyone can undertake, for any reason, while leaving a positive impact on the identified community. I see it as a collective, the lifeblood of charities and their success. It brings together a group of people giving their time in any way they can to improve the lives of those most in need of support. It brings out the best in communities and is a unifying concept in situations that often create feelings of detachment.
I wanted to leave behind that feeling of helplessness and I felt by doing something that would help my mother but also the wider MS community. I was drawn to a cause for a very specific reason looking to support an individual and did not realise how far that contribution extends. Those closest to us benefit from the process, but the money raised/time given is felt by the entire community, and that is something that gives me greater motivation.
Volunteering for MS-UK started for me and my family with physical challenges: I have cycled to Barcelona and Paris over the last few years, my brother has done the marathon, my aunt has completed some crazy challenges that wouldn’t cross most of our minds! This was a means of contribution that proves so important to every charity and allows for both fun and very sore legs in the process.
The opportunity to sit on the board and take up a more regular and ‘back office’ position has given me complete appreciation of the incredible work behind the scenes that goes into making a charity like MS-UK possible. I have met some of our amazing volunteers who give their time to enable a small charity like ours to prosper, and their dedication and enthusiasm is essential to our success.
Being able to come together and be part of a cause driven by acts of selflessness is a very powerful concept. We all have our own ways of contributing. We all have our own reasons for doing so. The reasons and methods vary but the collective goal is what gives us a strong sense of togetherness and community, and that is what volunteering is all about.
Being a part of this community means a great deal to me and volunteering for MS-UK is something I want to continue doing for many years!
My name is Allen Ball and I got involved with MS-UK because my mum was affected by MS before she sadly passed away. I also wanted to help a local charity, helping people in my community. I initially ran the London Marathon in 2017 for MS-UK, and since then I have continued helping in a number of ways - volunteering at larger events like the London Marathon and Asics 10k, as well as smaller ones such as a fund raiser at a local pub.
Over the last couple of months during lockdown I have been trying to raise a little more for MS-UK as I know all charities have taken a hit with their big fundraising events being cancelled. For 2.6 I walked the equivalent of 2.6 times up the Gherkin on a set of steps (which turned out to be harder than a lot of the running I have done). Also, a friend of mine knitted a Myles mascot for me, which I have raffled.
Whenever I have turned up for an event, I have always been made to feel welcome and I now feel like a member of the MS-UK family. We are all a friendly bunch!
Last year I even won a prize for my volunteering, ‘Room To Reward’, which gives me a free hotel stay somewhere in the next few months.
If you are considering volunteering for MS-UK I can really recommend it, and you would be more than welcome.
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!
I am Nigel Watts and as I am unable to participate in “walks” or “runs” to raise funds for MS-UK, instead I have volunteered my time, either at home or in the MS-UK office, to help with identifying potential 3rd parties to approach for future funding and to provide taxi transport for some of the clients who attend its wellness centre, Josephs Court. I have also contributed to the existing Choices leaflets, proofreading for consistency, grammar and spelling.
In addition, I have completed an MS-UK Helpline case study and I am one of the founding members of the MS-UK Steering Group which meets every two months. Even under the current lockdown measures, we still meet using Zoom!
The MS-UK Steering Group is made up of seven volunteers who use Josephs Court and is led by Centre Manager Dean Jeffreys. The purpose of the MS-UK Steering Group is to discuss how the centre is working to satisfy the needs of members who use the facility, any suggestions of improvement or change. It is also a great place to just chat about life in general. Anything discussed in the group stays in the group.
Outside of Josephs Court, I am still able to volunteer through putting together mailing lists online for MS nurses, neurologists, MS therapy centres and pharmacies.
I have found my time volunteering both at home and at Josephs Court very fulfilling as the challenges have kept my brain working. Volunteering is also a pleasant change from playing Solitaire or Sudoku!
Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
About a year ago, I began volunteering at the MS-UK’s wellness centre, Josephs Court. I joined the “Welcome Team” where my role is to support the Centre Staff and Wellness Coaches by helping to make the Centre a welcoming and supportive place for clients and visitors.
I had first come to Josephs Court at a friend’s recommendation. I was diagnosed with multiple sclerosis (MS) in 2017, but I knew little about MS other than I had it and was overall not in a positive frame of mind.
I remember meeting Vicky and Alan at the introduction session. They were very friendly and explained what MS-UK and Josephs Court had to offer. They showed me a positive way forward that enabled me to begin to come to terms with my diagnosis and start to move on both physically and mentally.
Now that I am retired, volunteering has enabled me to get involved and support the unique work MS-UK undertakes. It has been every bit as rewarding and challenging as I expected, and I realise it has also given me a personal sense of belonging, purpose and focus.
What I enjoy the most about my volunteer role is interacting with others. Even if I only meet them occasionally for just an hour or two each week, I can see the tangible positive benefits people get by attending Josephs Court. I particularly enjoy the fun, social interaction, sense of support and companionship that benefits everyone who comes to Josephs Court. I find my involvement very rewarding.
The skill I have developed most from participating at Josephs Court is building empathy. I’m able to better relate to others, build relationships and support people to communicate and interact together.
Through volunteering, I have also personally benefited as it has helped me cope with my own MS challenges. I find that while at Josephs Court I meet people who are not defined by their MS and get to know them as individuals, their names, personalities, unique experiences and personal ambitions. They are great role models and their ability to share understanding and build on mutual experiences makes for an incredibly supportive and empowering environment which I am proud to be a part of.