Charmain’s Story – MS AWARENESS WEEK

1. Hi Charmain, tell us a little bit about yourself!

I am from Portadown, Co Armagh. I work as a part time Community Relations Officer for Rural Community Network based in Cookstown. I am married with 2 teenage girls.

2. Thanks for agreeing to share your story about your MS condition. What is MS and when were you diagnosed?

Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild. I was diagnosed in February 2017 with relapsing remitting MS and in September 2019 I was informed that my MS is now classified as highly active relapsing remitting MS.

3. Before you were diagnosed, what symptoms did you experience and at what point did you seek help?

I have lots of symptoms before I was diagnosed. Going back my first symptom was a bout of vertigo that I took when I was around 25 years of age. Then after I had my 2 children, I noticed my symptoms got worse. I would have had pins and needles in my feet, hands and face, vertigo and dizziness, migraine headaches, pain in my arm and fatigue but I put it down to work related stress and also raising a family. In 2016 I took very ill very suddenly and ended up in hospital. Unfortunately at that time I was released again with no firm diagnosis but my symptoms persisted. In March 2016 after this episode I noticed that my right arm got weaker and also I had a numbness in my right leg that didn’t go away. I went to visit and optician in August of 2016 for a routine eye test. I was informed that my left eye was not dilating properly and referred to the GP and that was the start of my diagnosis process. From October to December I received an MRI, blood tests and a lumber puncture test and in February 2017 I was told I had MS at 40 years of age.

4. How is day to day living for you with an MS diagnosis? Have you had to adapt your lifestyle in any way?

Every day is different, infact every hour of every day is different. MS is a highly unpredictable illness in the fact you could go to bed not feeling too bad and wake up feeling awful or you could get out of bed not feeling too bad and then an hour later feel like you have been run over by a bus. Every single person with MS is very different in terms of their own journey and how they live with it. It is called the snowflake disease because just like snowflakes there are loads of symptoms, some of us might have all of them, some only a few but they all impact us in very different ways. It is also a visible and invisible illness so people need to understand that if someone says they have MS but do not have a mobility aid or wheelchair it doesn’t mean that they are not impacted by it either physically, emotionally or mentally.

There are many ways I have had to adapt my lifestyle. I think the hardest was making the decision that I had to go part time. I had worked full time all my life and really was at the peak of my career when I was diagnosed. I tried to work full time 3 years after diagnosis but my body just couldn’t cope with it, my symptoms were thick and fast and I ended up having relapse after relapse after relapse so I went part time during the pandemic. I also have to try and pace myself better as I get fatigued very very quickly so I need to be careful how much I do around my home, work and also with family and friends. I also had some adaptations to my home which were required, I had to change my car and I also have a crutch that I use if my right leg gets bad but overall slowly over time life has changed from what it was pre diagnosis but four years later it has become part and parcel now of my everyday living. If I need more help or support or my symptoms get worse thankfully I have a good MS Health Team and neurologist I can ring and they help me cope and adapt my lifestyle again to suit the condition.

5. Has lockdown had an impact on your condition? If so, how?

I think the lockdown has helped me physically in that I can rest more at home, I am not rushing about and tiring myself out like I was pre pandemic. If I don’t want to get dressed and work in my dressing gown and pyjamas I can (haha!!) and with working from home I don’t have to drive so I can be more productive in the morning time. I think mentally I was more impacted in terms of my condition. When you have MS you are at higher risk of depression and anxiety and I definitely had the highest levels of anxiety I have ever had during the lockdowns. I think getting a shielding letter twice had a massive impact on me because it really drove it home to me, you are extremely clinically vulnerable, do you have a serious illness but also if you catch Covid 19 then it could get very serious for me. This meant I was afraid to do anything outside my home, it took me a long time to feel confident even going for a walk and feeling safe, but gladly over time and with getting a vaccine my mental health has improved and I am now coping better in the 3rd lockdown than I was in the first and second.

6. Has MS ever affected your mental health? If so, in what way and how do you look after your mental health today? 

When I was newly diagnosed I got very upset about it and I think looking back I was grieving for the person I was pre diagnosis for at least a year. I couldn’t even look at photos of myself without crying. It was the same for the date I was diagnosed. every year I had to get on a plane and get away from my home, my family, my friends, my work. I just needed away, I just couldn’t cope but now over time I have got better with this and this year on the 4th anniversary for the first time I didn’t cry, I felt emotional but I didn’t cry. 

I look after my mental health by exercising and walking when I feel up to it, by having a coffee and a chat with my good friends, I am a real lover of Netflix and binge watching and also I like to take part in knitting, crafting and embrodiery work. it is like a therapy to me. I work very hard on my mental health, that is for sure

7. Are there any misconceptions about MS? Any common myths that need to be addressed? 

I think there are many but the most important one is that you will die of MS or end up in a wheelchair as soon as you are diagnosed. When I was first diagnosed I thought I would die of it, like I had been given this life sentence, a terminal illness but after research and speaking to my health team I discovered that you can have a life with MS. Yes there might be changes and yes some days will be very tough but you still can live with MS. I also discovered that it was not a terminal illness and that also brought me comfort to learn that I could live for many many years and that I would see my children grow up etc. I think another misconception is the fact that people think well there’s nothing that I can do about this now or that’s it but again through my health team I learnt about the wide range of treatments that are now available on the NHS to help treat your MS and give you a better quality of life. There is no cure to MS, I will never be cured of MS and again that is something you have to learn to come to terms with but it can be treated. I am now on an immunotherapy treatment every 5 months to help with my MS and yes at the time it isn’t pleasant with side effects and feeling unwell but thankfully it has helped me and helped my symptoms and the progression of my MS and for that I am very thankful.

8. What would your advice be to women who are struggling with MS symptoms? What has helped you?

My advice would be do not suffer alone, speak to your GP, inform them of the symptoms you are having. Be confident that it is your body and you know your body and that something does not feel right. Do not be brushed off, like I was for many years. I really wish looking back I had the confidence to say this is not right, my body is not right I want more investigation. I would also say if you have MS ring your health team, ring your MS nurse and chat with them about your symptoms. I am very lucky in that if I start to feel alot worse I can ring my nurse and within 24 hours help and support is offered, and more importantly medical help should I need it. 

My biggest help has been my wonderful husband, my two children and my mum and dad. My husband has been my rock, my tower of strength and has held my hand right through this whole process. I am so grateful to have him by my side.

9. Are there any charities out there that people with MS can get advice and support from?

Yes I would advise women to not google MS! I would tell them to look up reputable websites and speak to reputable charities only. The only 2 charities I would use are the MS Society or the MS Trust. For me they have the best advice, information and resource booklets. They also have online forums you can join.

10. Anything else we should know about MS? 

I have MS, but MS will never have me, it might change me physically but it will never break my spirit.