Rebif: Love and Hate relationship

Hi there,

It’s been 2 years since I’ve diagnosed with Multiple sclerosis (MS). It’s been 1 year and 8 months since I’ve self-injected the Rebif, three times a week.

It’s upside-down relationship. Rebif won’t cure my MS. It can only protect me, like a shield. Rebif can reduce inflammation in my brain, and also reduce the production of T-cells asserted as trigger of the inflamation. That’s the ‘ups. The ‘down is, Rebif has side effect. The worst Rebif’s side effect on me are flu-like symptoms, headache and hair loss. Put together the Rebif’s side effect and the MS symptoms, lalalalalaaa my life is so colourful (you may read it as full of ache and pain, but I’ll go with ‘colourful’ to assure myself).

Everytime after I inject the Rebif, I’ll feel dizzy, sorethroat, fever, joint paint, and insomnia. The day when I inject rebif, I’ll feel uncomfortable due to the pain, make me usually fall asleep very late at 3 am (maybe that’s the time when the side effect decreased so that the pain reduced and I can sleep). The next morning I will wake up like a zombie, sleepy, not fully sober, with black-non-prada eye bag.

There were days when I feel really tired with the injection. The exaggerated worry of the needle go into my body, haunt me. If those worries are unbearable, I’ll skip the injection schedule for that day. Until I find the strength to self-inject again. Sometimes my husband help me to inject the Rebif, but it does not really help. I’m more scared when other people (including my husband) do the injection. I’m afraid it will give me more pain (in fact: it’s not. It gives same sensation on my skin whether I inject my self or helped by other people). Coward me 😪.

Last week, I met with the MS nurse. She informed me my MRI result. Thank God, it is good. There are no active lessions in my brain, and there are no new lessions. I’m so happy and feeling blessed.

Some of my friends, the MS survivor cannot do their daily life normally. On that respect, my condition is more more moreeee better than most of MS survivor I’ve known. Most of my MS survivor friends have issue with their body balance. They may easily tripped. Some of them feel permanent numbness, cannot speak clearly, brain fog, cannot move their body parts, and etc (MS affect various abilities, according which part of myelin attacked). Whereas (should say fortunately) me only feel light numbness & pins and needles. There is also everyday headache and extreme fatigue, sometimes light brain fog, but overall I’m still able to deal with my current symptoms. I’m struggling, but I can still go through my daily life. I can walk normally, read and write easily, and think clearly. That’s great.

Everyday I pray to God that those symptoms will be not proggressive, no more attack (we never know what will happens with MS, it can go back and forth and damage many parts of brain and spine. But it can also ‘sleep’ for long time). I know I should do better with injection. I have to put more effort and faith so that I won’t skip the injection. By doing so, maybe the MRI result will always okay like today. I wish my MS to be in the passive state, sleep or disappear and never come back, not relaps, and all those broken myelins will be cured. I wish.

Maybe the best resolutions for me in 2018 are: be discipline to inject the Rebif, eat clean (no dairy and red meat), sleep enough. I hope I can do it. For the better days ahead. Aamiin.

Best regards,


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