This week on Talk Learn Connect (TLC) Writer Yvonne Reddin asks Sinead Tynan Byrne to share her incredible journey with Multiple Sclerosis

"In May 2013, my life changed forever when I heard the devastating news that I had Multiple Sclerosis (MS) I was a thirty-nine year old mother of three and wife to Bernard” 

Can you share how this shocking news affected you and your family?

It was November 2012, I was in St Vincent’s Hospital waiting on results of an MRI.

I really wasn’t expecting what happened next; the doctor called me in, and I sat down. After a short chat she started turning the monitor around (something must be wrong), it was so frightening. She suggested, I shouldn’t worry and not to google anything but she thought I might have Multiple Sclerosis (MS) and they would know more after more tests.

To say we were devastated is an understatement, I remember that day like it was yesterday

The tests took six months (six months in limbo) On the 27^th of May 2013, I was diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS).  Another day that will be etched in my mind for the rest of my life; my dad and husband both cried that day. This will give you an insight as to the devastation we were feeling as a family.

My feelings turned back to my beautiful children and what type of mother I could be to them if I got extremely sick and would they end up minding me. It was such a sad time, I really could not stop crying. I decided to tell them very early in the diagnosis.  They are very bright and knew something was wrong, so myself and Bernard, my husband, told the kids in June. They were brilliant, so kind, caring and helpful around the house, they could not have done enough.

News travels fast and I know people meant well by getting in touch but I really did not have any time to digest the devasting news and I wasn’t coping very well.  I decided to go to counselling to talk about how I was feeling.  I found it so helpful; I started to make peace with the diagnosis.

I was always googling looking for ways to beat this disease or at least keep it at bay. My head was wrecked trying to help myself. I got in touch with a homeopath and started taking a lot of different supplements and even changed my diet. I was Vegan for a year. It was helping but the fatigue was crippling, and I knew I was slowly losing more and more of myself as time went by. I had to do something. What could I do?

The campaign was so humbling and brought me to tears on more than one occasion. It was an amazing experience and it changed my life in so many ways; people where so generous and they could not do enough. We organised a Hell and Back, the Women’s Mini Marathon, the Dublin City Marathon, a coffee morning, cake sales, golf classics and quizzes. The whole community where fantastic and I felt so proud to have lived here all my life and know so many people who really backed me from the get-go. I will be forever grateful to each and everyone.

Living in a pandemic does not help anyone's mental health… How are you feeling now, and have you completely changed your outlook on life?

During the pandemic I have missed hugs and kisses. I’m dying to give a great big hug to my mam and dad. I look forward to holidays again, meals out with friends, coffees and chats. But the main thing is that we all stay well and safe. I love spending time with Bernard so when its just the two of us and the kids, I’m fine with that.

When I think about my mental health, I think about how I was as a child and my mam always said I was happy and good humoured. I’m definitely more positive and optimistic than negative. Even when I was sick, I had days where I was just sad and the darker days didn’t last too long. I’m not saying I didn’t cower in a corner and feel despair once or twice - I did.

But, there was always something to smile about and somebody worse off than me. My kiddies always made me smile and kept me going. Even when I was sick, I felt lucky for all I had and that my disease progression was slow. It’s coming up to my fourth year post stem cell transplant and yes, this treatment has totally changed my life.

"That old saying your health is your wealth is so true and for it to be taken away and the devastation, pain, suffering and loss you experience - it’s just indescribable"

Then for it to be given back to you in the same lifetime, it really makes you appreciate life, health and everything so much more.

It’s like winning the lottery. I’m loving life, I’m happy and I don’t really worry too much about the small stuff.  I feel lucky and grateful. and have  a real zest for life again. I’m determined to enjoy and cherish everything that life has to offer. I’ve a huge admiration for people living with long term illnesses or disability as I’ve experienced it first-hand. The pain and suffering people experience, nobody will understand it unless they’ve lived it.

Can you explain to the TLC audience what Hematopoietic Stem Cell Transplantation (HSCT) is and how it saved your life?

Haematopoietic Stem Cell (HSC) transplantation is an intensive chemotherapy for MS. It aims to stop the damage MS causes by wiping out and regrowing your immune system using your stem cells. A treatment that is not available in Ireland now.

It’s a fantastic treatment and many people have had amazing results and seen a reverse in symptoms.  If anybody is reading this and has MS, google Kirsty Cruise - 60 minutes Australia to see for themselves.

I arrived in Moscow with Bernard for four weeks; from start to finish we were looked after so well by Dr Fedorenko and his wonderful team. It was not any easy treatment and recovery was extremely difficult, but it was worth it.

 In the early days of the treatment you receive testing before you are accepted for the treatment, including chest x rays, heart function and MRI blood tests.

"If you are accepted, you start your treatment and receive drugs to stimulate your own bone marrow into your blood stream where its collected and frozen. The next step is receiving intensive chemotherapy to kill your immune system.  On your transplantation day your stem cells are reintroduced to your immune system to multiply and graft your new immune system"

You must then stay in isolation. I stayed in isolation for eight days only able to look at Bernard through a window or on face time. It was a difficult time looking back on it now.

But I was happy to rest and recover. I meditated every day and it really helped me to focus on the here and now and just allow myself to be.

It was during this period I noticed a change in my energy levels, and I started to feel I had more energy and my cognitive ability was starting to get better, I was remembering things again. I was feeling no pain, I could not believe it was happening so quick. I had suffered dreadful pain in my left shoulder for years and was delighted this was gone, what an added bonus.

The treatment was life changing in that I have energy again.

Less pain, better cognitive ability and a huge hope that my MS was halted and not living in dread of the future.

Can you share any words or any acts of kindness that you received that helped you during your treatment and recovery?

There are so many moments during the campaign that stands out for me and too many people to mention.

But one act of kindness really touched my heart and changed my life. A friend that went to school with my husband, her name is Loretta Whelan had seen the campaign on Facebook and offered to do reflexology on me to help me relax and unwind.

I didn’t know at the time that we would become great friends. It was really life-changing, she really helped me heal and repair. I loved and looked forward to my treatments every week. She also did Reiki and Workshops. She was so selfless and so giving and is an incredible healer and life coach.

I loved it so much I decided to go back to college at night time and I qualified as a reflexologist myself and I’m also qualified in Reiki level two - both fantastic treatments.

She introduced me to the power of the mind and the ability we have to heal our lives and the ripple effect it can have on everyone around you. It raises your vibration.

I also received anonymous donations and I will never forget that first week when friends called to hand me money, it was so humbling. I’ll never forget who they were and often its people that you don’t expect. The I love you cake that Karen made for me and the going away party. I found it so hard to hold back the tears before we left for Russia.  I will never forget that.

 I’ll never forget my first Stemmie present a pal sneaked into Bernard’s case. All the beautiful good luck and get-well cards, just so many to mention and the keep the faith one-liner from Benny.

All these gestures, I will never forget, they mean so, so much.

Facebook Sponsor Golf Day