Living with chronic illness and disability can make staying positive difficult at times. Something I always tell newly diagnosed MSers when I speak with them in my volunteer role as “welcomer” on shift.ms, is to just let yourself feel however you do in that moment. Your feelings are valid, and people constantly telling you to “keep positive” and “look on the bright side” can start to feel dismissive and not respectful of your real emotions. It’s a scary thing to go through, and that feeling might get better with time, but it may just always be there in the back of your mind. What will happen? Where will I be in 5 years? Ten? Will I ever feel stable again? These are all valid questions, and it’s okay to not feel positive 100% of the time.
I do try my best to be a positive person in general though, and I’m thankful and happy for the good things I have in my life. I’m so lucky in so many ways, I have my family supporting me, and have found the love of my life who I get to share every day with. Things are good. But there are still days where I mourn the life I imagined I would one day have, and feel sad that I can’t do all of the things I wish I could. Sometimes I feel lonely, and angry, and that’s okay. It’s okay to feel down about things. It’s just not possible to always be the happy, inspirational person that other people expect you to be. Being diagnosed with a debilitating disease doesn’t mean you owe it to the world to inspire them with your perseverance. Sometimes just getting through the day is all you can do, and there’s nothing wrong with that. Celebrating the small successes are just as important as the big ones. This is key for me, to be proud of the things I do accomplish. Cooking dinner, doing the laundry, or getting out of the house for a bit on a bad day may be seemingly small things to the other people, but to someone with chronic illness, all things to be proud of! Reminding myself of that helps me to feel more positive every day.
Having MS, and other chronic illness, SUCKS. It’s okay to recognize that. I think what matters most is what you do with those emotions. Feel them, talk through them, take time to yourself and maybe even let yourself wallow a little bit now and then, but then pick yourself up and move through it. Sometimes you need to just ask yourself, what can I do to be kind to myself today? Maybe it’s taking some time to meditate, and breathe, or maybe it’s just spending some time doing something you love! Whatever you do, just remember that it’s okay to feel negatively sometimes, but try to remember that you are not alone in this, and tomorrow is a new day. Celebrate those small victories and be proud of yourself for getting through!
Hi there, me again! Guess I’ve been a bit preoccupied with the little doggie we got, that I wrote about in my last post. He’s still difficult but is slowly getting better! We just love him so much.
But, I was reminded yesterday when talking to a newly diagnosed girl, that it was around this time 5 years ago that I was diagnosed with Relapsing Remitting Multiple Sclerosis. It’s been a long, hard journey with lots of ups and downs, but I am so thankful for all the good it has brought into my life as well. The people it’s brought, or brought closer to me, and the experiences I’ve had that I may not have otherwise.
I want to thank everyone who has supported me over these 5 years. I’m really lucky to have such an amazing support system. I’m thankful every day for my family, close friends and amazing boyfriend who all go above and beyond for me and help me get through, good and bad.
Some days are really hard, and having MS sucks, let’s be honest. It’s taken a lot from me, but it’s also taught me a lot. Like to try and face my fears. I used to be so afraid, but in some ways I’ve done more since my diagnosis than I ever would have before. Life is short, and you never know what the future will bring, and that’s even more true living with an unpredictable disease like MS. So, travel alone, put yourself out there, tell people how you feel about them and express your emotions, there’s no better time than right now. Make the most of it, but also don’t feel bad if you need to have a day (or 3) off from everything. Learning my limitations and how to budget energy is how I make it through!
It’s can be hard to stay positive all the time, and that’s okay, but we all have our struggles, and to anyone out there reading this that can relate, I just want to remind you to take it one day at a time, and that you can do this!
I saw a video recently, posted by a website about chronic illness, about not being able to work. The video really resonated with me, as someone who hasn’t been able to work since my MS diagnosis back in September 2012. I often feel guilty about this. Sometimes you just feel like you aren’t doing enough, even if you’re doing all that you can. The video I mentioned shared some thoughts from other people in a similar situation as me, and it really felt validating in a way. I know other people feel like I do about not being able to work, but just seeing some of the quotes specifically state it was kind of helpful for me. In the video it said things like, “I would love to hold down a regular job. I would like to get to the end and feel like I accomplished something rather than live day to day”. This is something I really relate to. Having a job and something you can accomplish every day is taken for granted by a lot of people. Now I know not everyone likes their job, or wants to work, but when you don’t have the option to it’s a different story. I’ve had people tell me that they’re jealous of me staying home, which makes me laugh. I would truly love to be able to have a job and work every day and complain about it to my friends just like everyone else, but its just not feasible for me. MS causes me to have chronic fatigue, and pain, and trouble walking or standing for very long. I’m always light headed, and dizzy, and have trouble concentrating. But hey, if you want to trade places, I’m willing!
“No one realizes that a job does more for you than just pay your bills. it’s part of what gives you self esteem.”
It’s hard to feel like you aren’t doing enough of what people expect of you. Even small comments that I should try getting a part time job as a this or that can feel really hurtful. Trust me, if I could I would. I do some volunteer work which helps me feel like I’m trying, and one of the things I do is spend two hours a week at the humane society, which can be incredibly difficult for me, but it makes me happy and helps a bit with that feeling of fulfillment that other people may get working. Sometimes I just need to be thankful that I made it through whatever task I had that day. Maybe it was just an appointment, or making dinner. Maybe it was taking transit somewhere, or doing a couple hours of volunteering. Or maybe it was a really bad day but I made myself go to the coffee shop down the street just to get out for a bit. It’s hard to adjust your thinking to accept that this is enough, but life is hard. It changes. And sometimes you need to cut yourself a little slack and accept that you really were your best self that day even if it was just a small task, and this is something I’m trying my best to remind myself of every day!
this is the video mentioned in this post
Welcome to my renamed blog, MSing around! This is still going to be about my life and navigating the world while living with Multiple Sclerosis, so this title seems more fitting then the previous “travelling MSer”. While I do still hope to travel more, and talk about it here, it’s just no longer the main focus, so felt like time for a change.
Looking forward to getting back to sharing, and writing about my experiences, and interacting with anyone out there reading!