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In What’s It Like To… New Zealanders from all walks of life share stories of health & wellbeing. Here, Anita Hedges shares with Paulette Crowley what it’s like to live with multiple sclerosis.
It was a couple of years ago when I noticed that something didn’t feel right with my skin; there was a kind of tingly numbness from my right breast going around to the middle of my back.
My doctor thought it could be shingles and warned I could break out in blisters. Two weeks later, I was back to see her. There were no blisters, but the numbness was still there and had spread further down the right side of my body.
That’s when I was referred to a neurologist. By then, the numbness had spread from my chest all the way down to my foot. It really didn’t feel right. The specialist did a variety of tests and sent me for an MRI. The very next night he rang me to tell me that I had multiple sclerosis (MS).
He explained that MS is a disease where the immune system attacks myelin, a protective sheath around the nerve cells in the brain and spinal cord. This causes lesions, which affect your central nervous system and can cause many problems, including with numbness, balance, sight and energy levels. Diagnosis usually happens between the ages of 20 and 40. I was 41 at the time.
The doctor told me there was no cure for MS, although there are ways to stop it progressing. The medications they use essentially try to prevent more lesions forming.
MS is a big diagnosis and a lot to digest, especially since I also had ulcerative colitis, another chronic illness I was diagnosed with about 13 years ago. After years of failed treatments, I had my large intestine removed five years ago as the first of a series of big operations to repair my gut.
Both ulcerative colitis and MS are autoimmune disorders. Once you have one autoimmune condition, there’s a higher risk of developing another one. Doctors don’t know why this happens, but there could be a genetic component to getting an autoimmune disease in the first place. That makes sense, as there is a family history of MS and ulcerative colitis.
During the last couple of years, I have had lots of tests and treatments. The treatment I am on to manage my MS is an infusion given to me every six months at Auckland Hospital. I’ve had three MRIs since being on medication, and the most recent two have shown no advancement of my MS.
The neurologist told me I was very lucky to have been diagnosed when I did. All the research and drugs that can help manage this condition are way more advanced than they were 10 years ago. But although my MS hasn’t advanced and I’ve had no further flare-ups, the damage has still been done and the symptoms that I manage are still serious.
In terms of day-to-day symptoms, fatigue is a big one for me. After lunch, I’m always pretty exhausted. I was told to allocate myself a number of “spoons” for the day. Each spoon represents energy. Say I have six for the day – two in the morning, two in the afternoon and two in the evening. Once I’ve used all my spoons for the day, that’s it. If I over-commit myself, I pay massively for it with fatigue the next day.
Managing my fatigue is a constant battle, more so because of my bowel surgery. I’m up and down to the toilet during the night, so I’m constantly exhausted. It’s a fun challenge trying to stay on top of that one!
At times I still have tingling – like pins and needles – in my legs and feet. It’s a really uncomfortable feeling and nothing will make it go away. Sometimes if I’m really stressed, I get what they call the “MS hug”, which is like squeezing around your ribcage. That is pretty annoying but deep breathing helps to relieve it. Rest is really important but sometimes I find stopping and relaxing really hard.
Despite these challenges I have a busy life. I work full time, have two children and go to the gym five times a week. There’s not much I can’t do, as long as I stay cognisant of my energy levels and plan my days around those.
I have to be organised and conscious about taking breaks, and actually just being kind to myself. Sometimes I have a nap or meditate. I also do breathwork and mindfulness, which is quite helpful because it gives me a bit of a boost for the afternoon. To free up my energy for the weekends, we get someone in to help with after-school care for the kids a few days a week.
Having MS and ulcerative colitis has given me a lot to deal with, but I’ve learnt to live with these conditions and adapt. These days, it’s possible to still live a really full, healthy, long life with MS and I plan to make the most of it.
Multiple sclerosis is a lifelong neurological disease of the central nervous system – the brain, spinal cord and optic nerves. About one in 1000 New Zealanders will have MS and it is most commonly diagnosed in the 30s age bracket. For some, the condition can be quite mild and for others, it can cause serious disability. For more information or to donate visit www.msakl.org.nz.
