TF: Would you tell us a bit about yourself?
SP: I am 28 and I live in Sydney, Australia with my Mum and Dad. My family is from a Greek background and my two sisters and I had a happy and active upbringing. After I was diagnosed with MS in 2001 I took a year off from my magazine job just to deal with it all and then, after working for a while for a television company, I started getting involved at the MS Society. I became an MS Readathon presenter in 2003 and I work at the head office doing administrative work. I’ve also recently become an MS ambassador and an MS peer support worker, so I’m heavily involved and do as much as I can.
TF: Can you tell us about your diagnosis of MS?
SP: I got my first symptoms when I was 16 but I wasn’t diagnosed with MS until I was 22. There were all these little things going on at different times. I got blurry eyes, stuttered my speech, had bad balance, a loss of sensation in my skin, and was very fatigued. At one point I had pins and needles across my whole body for eight weeks, 24/7. I didn’t understand what was going on. Each time I went to my doctor I had blood tests or was given tablets or it was suggested that I live a healthier lifestyle. But then in 2001, the symptoms all hit me at once. I went to a different GP who referred me to a neurologist. After an MRI, I was diagnosed with MS. I take my MS medication injections regularly. My symptoms are usually OK, but I’ve had some issues with pain, which I get as an exacerbation.
TF: What types of pain do you experience and how often?
SP: It started in 2004 as a sharp stabbing pain in my right kneecap. I thought I’d sprained it because I know that you can’t blame everything on MS. My GP arranged an ultrasound and I was told it was inflammation caused by MS. Within a month it had spread up and down my leg and then started in my left leg in the same way. So since then I’ve had sharp stabbing pains constantly in both my legs. In January 2006 I started getting a similar pain in the back of my neck - this feels like I’m being stabbed with a knife and someone has left it in there and every couple of minutes they give it a bit of a turn, just so I know it’s there. It has been very hard to adjust to that. And then in about June 2006 I started getting sharp stabbing pains in the sides of my neck, in my arms, and in my lower back. The lower back one has also been particularly hard to deal with.
TF: When you say it was difficult to deal with, could you describe to us how the pain impacts on your day-to-day life?
SP: I try not to let it affect me and to do everything as normal. But the biggest thing is that I can’t drive for more than 15-20 minutes without my legs really hurting. This is annoying because if I get stressed, I like to jump in my car, turn the music on and go for a long drive, which I can’t do now. I have to use public transport and at off-peak times so I have plenty of leg room and can move around. When I go to the cinema my legs hurt and I sometimes need to stand up or stretch them out. But I still play sport and go out clubbing and to work. I’m lucky because I have friends and family who offer to drive me.
TF: Does the pain affect the way you feel?
SP: It does, because all the pain medications I try are strong and all affect me very differently, including my mood. It takes a couple of days for my body to adjust and I get really moody - my friends say that MS stands for 'Moody Steve'. Also I don’t get a lot of sleep because the pain is worse at night when I am lying still. During the day I can move my legs around and it’s not as bad, but when I’m lying in bed, I notice it so much more. I am lucky if I get three hours sleep a night, which of course makes me moody and tired.
TF: Have you tried using other approaches to pain relief such as complementary therapies?
SP: I meditate and do breathing exercises and listen to music which doesn’t do a lot for the pain but it relaxes me and calms me down, especially when I’m trying to sleep.
TF: Do you find it easy to discuss pain with your neurologist or other health care professionals?
SP: With my neurologist yes; she is brilliant and is really concerned. She’ll check up on me once a month and see how any new medication is going and if there is any change and how I’m feeling. It is harder for my GP to see that I’m in pain. I can tell him what I’m feeling but I don’t think he understands it because I say it with a smile on my face. To look at me you wouldn’t guess that I’m in pain because I don’t show it. So I think he finds it hard although he tries to help me as much as he can. But my neurologist has a different approach - she knows that the pain is there and that I just cover it up because if I’m not smiling and laughing then I’m crying. I definitely try to take the positive approach to life and my MS.
TF: Do you have any tips for other people who have similar experiences as you?
SP: I honestly don’t know - often I am just grinning and bearing it myself. I did the whole sad, depression, feel-sorry-for-myself thing but it didn’t suit me so I made myself be happy and enjoy life. Sure I can’t drive long distances, but there are a number of people who are willing to drive me and do things for me. I’m very lucky in that way and I count my blessings. I’m so thankful for my friends and family. Little good things happen all the time, like if I win a CD or have fun hanging out with friends, and I think things aren’t so bad. They could be much worse.
At the end of the day, I’m a happy person. I can walk, I can see, I can talk, I can work. I live a pretty normal life and that is something that I’m extremely grateful for.
For me, the key has been doing things like meditation and relaxation. It is not something I would have done five years ago - I would have laughed and scoffed - but it works for me. Not for the pain, but it works to relax me and make me a happy person. I think that is what you have to do - find the trigger to get the balance. Even though you live with the pain 24/7, there are other things in life that can take priority.
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