So here we go!
1. The illness I live with is: Multiple Sclerosis. Relapse Remittent to be specific. Chronic Fatigue likes to go hand in hand as well.
2. I was diagnosed with it in the year: 2006
3. I have had symptoms since: Technically since 2004, they started off "minor" in that I had Trigeminal Neuralgia relapses... If you've ever had Trigeminal Neuralgia you will understand why I put minor in quotations.
4. The biggest adjustment I’ve had to make is: Acknowledging that I have limits and that is okay. I still have a really hard time saying no, and taking care of myself, and I know there's a correlation between me not taking care of myself, being stressed out, and having a relapse... I don't know why it's so hard for me to actually do something about it.
5. Most people assume: I think most people think that I am happy, upbeat and full of energy... at times I also think people think I'm lazy and "don't care". I especially feel like this when I miss class. I think because I'm in a University atmosphere and there's an assumption that "skipping class" means you care... I honestly wish I had the energy, motivation and health to go to every single one of my classes.
6. The hardest part about mornings are: Getting out of bed. When I wake up my body is stiff and my legs hurt. It takes a long time for my body to "warm up". I try not to book 8:30am classes but sometimes I don't have a choice, or my desire for the classes outweighs my sanity. It doesn't seem to matter if I wake up at 6am, I still have a hard time getting to the 8:30 class. I can get up at 9 and make it to a 10am class no problem. Even if I sleep the same amount of hours. Mornings are just brutal.
7. My favorite guilty pleasure is: Starbucks! I try to eat well most of the time, because I feel better when I eat well and work out... but I love soy teavana oprah chai drinks.. and poutine.
8. A gadget I couldn’t live without is: My laptop. It connects me to other people, to information on medication, to support systems, research, it also allows me to participate more in classes. I often forget the words I'm looking for and google can usually figure out what I mean. I also can type for longer than I can write. My hand strength/sensation is not great, but typing is a lot easier.
9. The hardest part about nights are: When I'm in pain. It is so hard to sleep when something hurts. I get neck and back pain a lot, I also get neuralgia in my legs. There are times where I end up taking gravol because it knocks me out, just so I can get some sleep, but I feel like crap the next day, and get extremely sick if I don't get at least 8hrs of sleep on gravol. It's not fun, I try really hard not to do it, I usually suck it up and deal with the pain.
10. Each day I take: This is a complicated question. I am in the middle of a titration so my number of pills increases each week for the next 4 weeks. When I'm done I will take 9-11 pills per day (4 Tecfidera, 4 Vitamin D, 1 B12, and possibly 2 aspirin 30min before the Tecfidera for the first couple months to help prevent flushing) and then Naproxen as needed, and if I get Trigeminal Neuralgia, then 4 Gabapentin per day.... so anywhere from 9 to 20... :S
11. Regarding alternative treatments I: think it depends. I like evidence based research... scientific evidence. I take B12 because I'm low in B12 as a vegetarian, I take Vitamin D because I do better in Vitamin D rich environments. My first MS neurologist drew this correlation. I never relapsed in the summer, it was always the dead of winter (which is nice and long in Canada). The 2 years I went to Cuba in the middle of the winter I also didn't relapse, and the 2 years I took Vitamin D religiously I also didn't relapse (you'd think I'd be smart and just always take Vitamin D, I'm really bad at remembering to take it though. I need to promise myself I'll be more diligent). If someone is doing something, and they think it helps, and they aren't doing any harm to themselves, or others, or their body, then why not. Even if it's not what they're doing that is helping, there's a lot to be said for the placebo effect.
12. If I had to choose between an invisible illness or visible I would choose: This is tough. With a visible one I wouldn't have to feel like I have to constantly explain to people why I can't do something, or feel like I'm being judged if I say I can't do something. I'm used to having an invisible one though and I know how to deal with it, so I think I'd probably stick with an invisible one.
13. Regarding working and career: I am so absolutely grateful I currently work at the University that I attend, and that the department I work in is extremely accessibility-friendly. If I'm having a bad day and can't make it in, that's okay. I have the support of my superiors and my peers. University is sometimes difficult with the stress, but I love it. The worst part is I have problems with some lighting conditions and there are some class rooms that make me almost black out. It sucks. I have hope for my future. I originally shied away from wanting to work in academia, but I think it would be pretty cool to eventually teach and do research at the university. I find research fascinating and I really hope that eventually I get to do research in some capacity (Only 5 more years left of school for my doctorate! ... ahh.)
14. People would be surprised to know: There are times where I am absolutely terrified about the future that I end up crying.
15. The hardest thing to accept about my new reality has been: Not knowing. Not knowing how I will feel when I wake up, not knowing if it'll be a good day or bad day, not knowing when I'll have my next relapse, not knowing what life will be like in 15, 20, 40 years. I guess that can be said for anyone... but it's different.
16. Something I never thought I could do with my illness that I did was: Yoga! As weird as that may sound, I never thought I'd be able to do any kind of land exercise because of how absolutely shitty my body feels after (and not in a good "I just worked out" way.) I also have passed out since my body is not great at regulating blood pressure. I have stuck to walking and aquafit, but I recently started doing Restorative Yoga which makes my body happy and stretched and relaxed and Hatha Yoga which is really friggen hard but I love it and feel great after.
17. The commercials about my illness: Usually want money.
18. Something I really miss doing since I was diagnosed is: I'm going to change this to "since I developed symptoms" and go with Going To The Movies. That may seem absolutely ridiculous but I used to love going to the movie theatre with friends. I have such a sensitivity to "weird" lighting now that I get really sick, and sometimes black out if I go to movie theatres. On the plus side our local Drive In does not affect me the same way, so from May to September I can go see movies :)
19. It was really hard to have to give up: Independence. This seems to be a common answer, but it's true. Not being able to do whatever you want, even though you're an adult, really sucks. I am lucky that I still have maintained a lot of my independence, more so than a lot of people, but there are little things in life that I have to change every day and sometimes it is just really hard.
20. A new hobby I have taken up since my diagnosis is: Yoga! and Aquafit! I know I've mentioned them before, but I only started doing them since I haven't been able to do some of the other things I loved (weight lifting, bicycle riding). Aquafit is great because I feel free.
21. If I could have one day of feeling normal again I would: I would go hiking in a European country that had shitty health care for foreigners. Any time I travel I take into account the medical care in the country I am going to. It's funny because going to the US kind of scares me the most. A lot of European countries, and Cuba will treat you as a Canadian, and then figure stuff out later... the US not so much. I always make sure I have travel insurance, but it's still a bit of a fear I have. There are so many gorgeous places in Europe that I'd love to go to, mountains I'd love to climb and see from the top (even though I'm afraid of heights) but I know I'll never be well enough to get fit enough, to make that happen.
22. My illness has taught me: The importance of good friends and support. I definitely lost some friends when I first got sick, but I also had some great support systems to help me deal with things along the way. The importance of things like social media (Facebook or even just e-mail) because sometimes it is easier to talk to someone about how you feel when you can hide behind a screen.
23. Want to know a secret? One thing people say that gets under my skin is: There are two things "You look so good though!" and "Maybe it would help if you lost weight?". You can't always tell what people are feeling like based on how they look... the weight thing pisses me off. I know I'm overweight, that's not a shocker. If I could easily lose weight I would. I try my best with what I can do, and acknowledge that it's going to be a process. Considering I had 2 years that I was practically bed ridden, I am ecstatic that I'm able to go to work, go to school, and do the exercises that I can.
24. But I love it when people: Are just there. Are there if I want to take my mind off of reality and do something fun, are there if I need to talk about how shitty I feel life currently is, are just there.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two. One is "I have it, it does not have me" which is a quote I read early on in my diagnosis on an MS Facebook group, and it's stayed with me since. The other is a quote by Michael J Fox and it's "Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it." I often feel like going on long term medication was acceptance and therefore resignation, but this quote kind of gives me... hope
26. When someone is diagnosed I’d like to tell them: Listen to their bodies and get educated. Education has helped me a lot. I know what doctors are saying and it makes me feel better. I understand what medications I go on are going to do, what the potential side effects are, and it helps a lot. Do your own research too, and if you aren't comfortable going on something your doctor recommends, tell them why and see what their other suggestions are. I like to think that the world never hands you something you aren't strong enough to handle. Even if it may seem hard and horrible at times. You got this. I remember when I first got my diagnosis I thought "Thank god I don't have cancer", I was talking to a girl online and she once said to me "I'm thankful I have cancer and not MS or something like that". Everyone can handle different things. You are strong... but it's okay to not always feel strong.
27. Something that has surprised me about living with an illness is: How much it has changed my life. Not always in a bad way. I feel like I have more of an appreciation for things than I did before. I find more joy in things, I put more emphasis on experiences and happiness than I did before.
28. The nicest thing someone did for me when I wasn’t feeling well was: I mentioned before that I was practically bed ridden for almost 2 years. I had a friend of mine who used to go grocery shopping for me and this was such a huge help. Also hugs. Hugs are always great, I think it's one of the most simple, nice things that can have such a huge impact.
29. I want to be involved with Invisible Illness Week NEXT year because: I missed this year, so I'm going to participate next year. I think it's important for people to understand that you can't tell how people are feeling, or what people are going through, based on how they're looking.
30. The fact that you read this list makes me feel: Hopeful and Thankful.
