Finding Shift.ms: A new lease of life

How it all started

In 2000, I woke up one morning, my son was 4 months old at the time, and my right foot was numb. I remember the feeling that my foot was asleep. But within 24 hours it had driven up my right leg and across my lower back and down my left leg to the foot.

Within another 24 hours it was driven up past my middle back. I was seriously numb from just below the chest line right the way down to my feet and I was walking as if I was heavily pregnant. I didn’t have any aches or pains but I was extremely exhausted. But I found that I would fall asleep very easily in the evening. Thankfully, by this stage my son was sleeping through the night. The symptoms of this numbness worried me. Did I visit a doctor? Yes. And this is how I was misdiagnosed with Guillain-Barré syndrome (GBS). 

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Uncertainty 

In 2006, the sole of my right foot was raw. I went to three different GP’s, they all blamed it on my footwear but I knew that wasn’t the case. I was dressing my foot everyday and the itching was unbelievable. I’d woken up on the August bank holiday weekend, and found I was back to being very numb again. I was unbalanced physically. 

So, I went back to my GP. He panicked thinking it was the GBS as the numbness was going past my chest and he was worried it would go into my lungs which might result in me being on a ventilator. He told me I needed an appointment with a specialist. A few days later I saw a neurologist. She said to me “Jane, you need an MRI, but there’s no-one working today on the machines.” She told me that my raw foot was due to lack of protein, and she was annoyed that the GP’s hadn’t caught this. She booked me an MRI and said she suspected that I was living with multiple sclerosis and that it would be relapsing remitting.

Diagnosis

Within the week, I was called down for the MRI. A few weeks later, on my 40th birthday, I went back for my results and was told I had multiple sclerosis. All I could think about was whether I was going to die from this and not see my son grow up to become the man he is now. 

My next thought was about my symptoms, when would they start to die down? I was told that this is something they needed to figure out and we would need to start talking about treatment. She talked me through the options and suggested Copaxone, daily injections. Now, I don’t like needles so I was a little worried but she said I’d be fine as it’s in an auto-ejector and I’d be trained in how to use it. On the 23rd October, I remember it still so vividly, I had to inject myself for the first time. I will never forget that feeling. I did this for three years.

Copaxone helped me to return to normality. I wasn’t as fatigued and I could still spend time with my son after work, and read him bedtime stories at night. I felt I was free. I knew it wouldn’t be forever. I recorded so much on cameras, my son playing, going on nature walks, climbing hills. And this continued for quite some time. I was happy, I was mobile, I was driving, I wasn’t in pain. This went on for years.

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Searching for support

Before I found Shift.ms I had nobody to talk to, no one who understood my symptoms and what it’s like to live with MS on a daily basis. I always say that I didn’t ‘find’ Shift.ms, it ‘jumped’ out to me on a day where I was seriously frustrated that I had nobody else to speak with regarding my MS symptoms. This was back in 2018, when I was on Facebook and there Shift.ms was, on my newsfeed. I signed up immediately. And I told everyone I could think of who could benefit from it.

Shift.ms for me, and I would say for thousands of people, was a saviour. And I chose that word intentionally. Once I get started talking about Shift.ms, it's difficult for me to tone it down. MS is by its nature unpredictable and sometimes you need to just ask someone else ‘Is this my MS? Or is this something else?’. The community has become my sounding board and would help me to push on and see more clearly.

You meet so many people, and you have a huge library of posts you can read through. I’ve made great friends, people who I can relate to. Each of us understand the other person’s symptoms. Everyone is friendly, everyone is respectful. I know I wouldn’t be in touch with such a great support network if it wasn’t for Shift.ms and I think I’d still be struggling to cope. The community are a great bunch of people. There is always somebody there, who can support you. And I mean always.

Joining Shift.ms gave me a new lease of life. Being part of Shift.ms has been a hugely positive experience. If I didn’t know Shift.ms was there in the background for me to access when I need it, I think I’d really struggle. 

Help more people find the strength they need. Click here to give now to Shift.ms.