Having MS is no mean feat… if your MS is anything like mine then I’m quite sure that you know what I’m talking about. Or maybe not, because people with MS can differ from person to person as no two people are alike symptom-wise. Sure, you can be in the same category as some other MSers you know, but as far as symptoms are concerned, we can be quite different from each other. A lot of people are in the relapsing -remitting stage of MS which means that you can have a flare-up (also called relapse or exacerbation) and then you’re symptom-free again for a while until another flare-up happens. Seeing as MS is a chronic and degenerative illness, you will gradually get worse over time. Then again, and this is another one of MS pitfalls, you just don’t know if or when that will happen. You can either stay in relapsing-remitting (RRMS) stage or you will move on to the progressive stages. But not me… not yet. Not ever.
“Hope” is a big word… a word full of meaning. A heavy-weighing word too. People with MS cling onto hope because at the moment there is not much else we can do. There is no cure , and not a single type of medication that takes away the lesions you already have. The only positive thing is that your relapses can be slowed down by injections, by infusions or by tablets, and those are MS-specific. Other medication your neurologist might give you are tablets to keep you a little bit more awake and those are not MS-specific: those tablets are given to people with narcolepsy. They will give you neuropathic painkillers to relieve the nerve pains you might have and those are anti-epileptic or diabetic meds. You can get pills to treat your vertigo, and those tablets are for people with tinnitus . And the list goes on, so as you can see… nothing MS-specific just yet aside from the ones that slow down the progress of your illness. So truthfully, we shouldn’t complain too much because at least we have those meds. It may not be the million-dollar-cure we all long for, but it is something good either way.
I’d like to think that I have my MS figured out pretty well. I live in reality and I know what I want and don’t want for myself. What I find difficult to understand though, and something that I have come across the last few years, is that I hear about some MSers who decide against taking medication to treat their illness. Some because they just don’t believe in them, some because they don’t want their bodies changed under chemical war-fare and some because they believe in natural medication only (homeopathy).
Of course everyone decides for themselves what they want and I leave everyone to it to fight and stand up for their choices. That doesn’t mean though that I understand why people would not want the best of the meds out there to help reduce relapses. Is life not worth it treating your body well so you can have a decent future? I agree that your body can change under a bucket load of chemicals, but it’s the best doctors can do for now to make us as stable as possible. So why not choose the best thing for you? Why would you want to choose staying drug-free today if it will impact you negatively in the long-term when your MS does progress? That always seems like such a contradiction to me… not taking your meds now while knowing it will not be good for you in the long run. I am trying to understand but it will take me some time to grasp the whys and the ifs and so on.
Me? I hang on to my meds like they’re my best-prized gift. I inject every single day, even though I hate it. I take a lot of different kind of tablets and even though I know they have lots of side effects, I feel good about taking them. There are side effects like weight gain, sweating and stomach problems but at least I am not going through the crazy nerve pains un-aided anymore. There is still pain, chronic pains even, but I have something for it now and it’s such a relief to know that in my handbag or in my bedside tables there is something I can take to reduce the pain. I don’t like it but I have to do it if I want to stay relatively pain-free and if I can keep relapses at bay. I’m not in denial about medication; whether using any is better than not using it and I am not in denial about the power pharmaceutical companies have over the people they are trying to heal. I am also not in denial about the possibilities homeopathy offer but I am choosing chemical war-fare in my body over not knowing what the future will hold for me if I should decide to stop my treatments. So I stay hopeful that one day some big pharmaceutical company will say they found a cure and that we can all stop taking medication used for other illnesses and that we can now start taking MS-specific meds that will cure us.
Some people have also suggested I should turn to religion in an attempt to cure myself. I don’t pray, and I am not religious anymore aside from being interested in religious history. Just as people choosing whether they want to take medication or not, praying or believing is a personal choice. I see and hear of people who put their days and their lives in the hands of God because in their eyes God is the only one who knows the path that is set out for them. I choose my own path and where it will lead me, and I don’t want to sit and wait to hear from God to tell me what to do next. I hear of people who believe God will cure them and they believe their god is their everything. I have nothing against people believing and having faith in God, but I don’t like being told off for not doing the same thing they do and believe in. What I do object to is religious people close to me who are Christians or have other religions, telling me that God will cure me and that only God can do that. I take it quite personal when I hear things like that because I am the master of my past, my present and my future. I choose myself what I want from life. My choice not to believe (anymore) is my choice and I have my own reasons for this. My belief is that there is no “God” who controls, rules and steers our lives in a certain direction. Besides, God has a lot to answer for with all the famine, wars, hurt and pain there is in the world today. Therefore, to be told that Jesus Christ or God will cure me is not what I want to hear… at all.
The other thing that really gets up my back is that some people call MS “the monster.” Or they keep on saying they’re “survivors” or “sufferers.” Not me. I refuse to use the words monster, survivors or sufferers/suffering. I never talk about MS being my monster because it’s not. It doesn’t have blood-red eyes, it’s not one big, hairy spider coming after me in the dark. I also refuse to use the word survivor in connection with having MS. Survivors of what? You survive cancer. You survive a car accident. That’s what a survivor is. MS doesn’t kill people directly. You might get run over by a car because you couldn’t cross the street fast enough, or you might choke on a piece of meat because you couldn’t swallow quickly enough. So I am not a survivor of anything. My lesions will not kill me directly, and they never will. Nor am I a sufferer or am I suffering. Suffering as a word is so, so negative and I don’t use negative words or connotations in my language that would suggest I really am in hell and I can’t get out. My nerve pains can be really bad, horrible, awful, mad and crazy. But never do I “suffer”. Therefore positivity is quite important to me because it’s helping me through the day on a funny note and with a giggle.
The best physical, scientific and medical evidence we have is that the chemical treatment like daily injections, tablets and other forms of traditional medication, provide the best results. I’ve yet to read a scientific report that states that taking no medication is helping you stay relapse-free and pain-free in the long run. Neither have I come across scientific reports that taking homeopathy is doing the same thing. Or that believing in God will help you stay relapse-free and pain-free for years. I am a big fan of the sciences and all the progress we’ve made in different scientific fields is just mind-boggling. However I am open to debate and to want to believe that miracles do happen, albeit quite rare. So right now it’s sciences 1- religion, homeopathy and not taking any drugs: nil. The choice is quickly made as to what I have to do to keep me walking on both legs and being happy with my overall MS-situation.
And therefore I hope that one day there will be a cure, or if that is not possible, at least medication to tackle severe fatigue, because a lot of MSers have debilitating tiredness. As much as we crave a cure, we crave understanding, and forgiveness. Understanding because too many people have the wrong idea about MS, it’s not a muscle-illness but it’s a central nervous system illness. MS is also chronic, even if you have remissions in between your relapses. We need people to understand we are not slacking because we’re lazy or because we have something better to do.
I used to feel anger towards people who were telling me that “being on sick leave all the time was great because it was like being on holidays.” Never was being on sick leave he same as being on holidays and for a long time I was angry because of the lack of understanding and insight people portrayed. Now that the anger has gone, I can sit down all relaxed and at ease with myself. I now understand that for people without MS, it is difficult to imagine what it’s like having an illness that messes up your central nervous system.
We also want forgiveness, or maybe I want forgiveness. Forgiveness for cancelling diner dates or cinema visits because you’re having a bad bout of optic neuritis or because you can hardly move because of the nerve pains. Forgiveness for not sounding OK when we’re slurring words and when we forget what was said after hearing or saying 10 words only. Forgiveness for not always looking perky because we were alone at home and had no one to help us get dressed. Forgiveness for having been a liability at work and with your colleagues, who understand at first, but get annoyed when it keeps going on. And while we want forgiveness for many things, we don’t want to feel guilty about it, or be made feeling guilty. We are what we are… still the same human being like we used to be, only now we’re missing a corner or we have a scratch on the surface, but inside we’re still the same person we used to be.
Funnily enough, with getting a diagnosis like MS and having to quit work because of it, I’ve rarely thought about what my life would be like if I wouldn’t have MS.
I’m now living in Ireland for over 9 years and if I didn’t get my diagnosis 6,5 years ago, I would more than likely still be working in the office I loved in Dublin. I might still be annoying colleagues about technical glitches I knew nothing about and maybe I would have been a team leader by now as I finished the team leader training just before quitting my job. I might have been married, have kids, have a mortgage and have travelled extensively. But I refuse to think about those things now because despite getting a diagnosis for a serious, long-term, incurable illness, I am glad I got this diagnosis. Yes, you read correctly: I am glad I got MS because it has taught me so much about life, about enjoying every single second of it, even when you’re in pain and when you’re stuck in bed for 3 days. It has given me a new family too: other MSers who know exactly what I’m going through and who know exactly what I feel and what frustrates me. My MS-family is big because social networking sites like Facebook have groups and pages where you can connect with fellow MSers in a private way when you’re a member of a closed group. It’s a place where you can vent, ask questions and just have a giggle about your situation. And also, MS has given me the opportunity to slow down, to take stock, to regroup and rethink my future and to let go of old grievances. So yes, I am glad I was given this illness because otherwise, I would still be working too hard, live too little and miss a lot of the small but important things happening to my friends and family. I have learned about kindness, love and most of all… about being there for other people when they need a shoulder to cry on too because the world does not revolve around me, my illness or my situation.
So… Am I happy? Yes, I most certainly am.