Sharon Henvey's Story

Sharon, from Dublin, working in learning and development for 14 years, was diagnosed with MS in January 2010. MS Ireland sat down with Sharon and spoke with her about her diagnosis and how she uses MS Ireland's Services in the North East.


SHenvey

When were you diagnosed?

January 2010, so next year is my 10 year anniversary. In August 2007, I suddenly developed symptoms. Pins and needles in my arm and extreme fatigue, when I talk about fatigue its two sides it presents, on a physical, exhausting level and an emotional side, just crying, didn’t know what was wrong. After a couple of days, I had a rash, it turned out I had shingles and all the other symptoms were put down to this. I put it all down to this.

Eventually, I felt a bit better. In 2008 I developed numbness in my face, it felt like being at the dentist, it was weird and also one side of my thumb was numb. I went to the doctor and he did a neuro exam, he felt it would go away in a few weeks,

I went home and googled it, Dr Google is never advised!

The following Spring I got food poisoning, and just moved house and didn’t go to my regular GP. I went to my new local GP who decided that I should try B12 injections, which I felt worked. Fast forward then to 2009, my left arm went numb and I phoned the local GP, she wanted me to go straight to hospital... she sent me to Beaumont Hospital. I had an MRI scan in Beaumont, and then they wanted me to go for a lumbar puncture... I didn’t get the results until after Mass. It was then that I was diagnosed with Multiple Sclerosis. 

How did this make you feel?

At the time, there were a number of emotions, it was a big shock, I didn’t know anyone personally with MS, and I had all these visions that I was going to be in a wheelchair and so many questions like can I have children?  I was panicked; the life that I expected to have might not be achievable for me? How am I going to get to work? Pay for my mortgage?

On the other hand, it was a relief, I wasn’t going crazy, I had been tired for a good reason, and there was a name for what I was experiencing. I felt grief and guilt, I was in pain, there was so much going on I was in so much pain, my body shut down I was just numb.

Research

How did you hear about MS Ireland? And our regional services?

The MS nurse in Beaumont gave me a leaflet, I didn’t want any part of that,  I thought it wasn’t for me; I didn’t want to know about it. 

Then just one day I burst into tears at work, told everyone not to talk to me, and felt that this wasn’t right. This can’t go on, so I googled MS Ireland and I rang the helpline; the lady on the phone was an angel. I didn’t understand what I was going through, and suddenly she had this language that articulated how I felt. Finally, someone understood.  Someone knew what I was going through. I wasn’t so alone. That was such a eureka moment for me, she put me in touch with the regional office.

I googled MS Ireland and I rang the helpline; the lady on the phone was an angel… I didn’t understand what I was going through, and suddenly she had this language that articulated how I felt. Finally, someone understood.  Someone knew what I was going through. I wasn’t so alone. That was such a eureka moment for me

— Sharon Henvey

Tell me a little bit about the regional services you use?

I got in touch with my regional worker;  he rang me and explained who they were and what they do. He arranged a time to come out and see me, the following week. We had a good long chat, over an hour, about how I was feeling, I even had a good cry, it made such a difference to me just to talk and offload all these feelings.

I couldn’t tell my family of what turmoil I was in, it led to a lot of guilt. It made a difference to talk to a stranger, it wasn’t a burden, he wasn’t going to worry about me, he understood. he gave me a lot of advice about how to come to terms with what  I was going through, what I was experiencing was normal, and the chemical imbalance I was feeling in my brain. I wasn’t going crazy; it was such a helpful way of going through it.

It took me the guts of 4 years to come to terms with my diagnosis, it threw up a lot of issues with family and relationships etc.

Once that settled down, I have come to terms with it; I haven’t had any major requirements, in terms of accommodation and counselling.

I check in with MS Ireland and my regional worker over the year if ever I have questions or a concern I check in with them, things like my driver licence, I can check in with MS Ireland and they will help me, it's a brilliant service.

I was asked to come to a newly diagnosed day and would I be interested to share my story, which I was glad to. I shared my story to a large crowd; it must have gone down well as they asked me back every year since!! So hope I helped by telling my story, I love going to it, I come away feeling inspired, or learning something new about MS, or a life hack or make something good.