Today marks the third year of my mother’s passing after a 10-year battle with cancer.
Just six weeks after she passed, I was diagnosed with multiple sclerosis.
It was hard enough to grieve the loss of her absence in my daily life. But now having my own diagnosis to process, I needed her more than ever.
I was scared.
I was angry.
I was overwhelmed.
And she was my person.
She always Continue reading
Couples living with multiple sclerosis (MS) can often experience challenges in their relationships, levels of intimacy and changes in roles and expectations. Join MSAA, as we present a new webinar on relationships and MS:
“Intimacy and Family Planning with MS”
Tuesday, March 5, 2019
8:00 pm (Eastern)
To help strengthen and foster healthy relationships, MSAA invites couples affected by MS to Continue reading
As we’ve just finished a very active MS Awareness Month here at MSAA we wanted to take some time to talk about support networks and positivity for this month’s blog theme. When dealing with an illness like MS, its helps to create and focus on connections to others within the community, to know that one is not alone in what they’re experiencing. From our Ask Me Anything events in March we saw lots of similarities in what others were asking when it came to their MS symptoms and disease course. On MSAA’s Helpline we often receive calls from clients asking ‘Am I the only one who’s experienced this?’ ‘Is this normal for MS?’ ‘Does anyone else have this issue?’ And we consistently find ourselves validating all of these questions and concerns, because the fact is that individuals are not alone, as there are many others out there wondering the same things.
I think the feeling of knowing you’re not alone in a challenging experience can help to quiet the fears, concerns and anxieties that accompany it. Asking if there’s anyone else out there going through the same thing and learning that there is, can make someone feel more validated and less isolated. This is why having a support network is so vital, and not only to connect with during difficult times but also to share good times with as well. It’s comforting to vent, cry or scream in times of strife and have others listen, but it’s also important to relay positive experiences, humorous moments and celebratory occasions with those in your circle. Life will have its ups and downs as these inevitably come with the ride, so sharing in the ups when they do occur can help combat the downs. If you find yourself feeling alone and asking questions just keep in mind that you’re not, and there are others out there asking too.
By Susan Russo
The holiday season is once again fast approaching. I honestly feel like I just finished boxing up all my decorations from last year. This is a time when everyone tells us to be thankful and to be grateful. But why are these sentiments so pressured into us at this time of year? Why not all year around? I don’t actually have an answer for you except for what these graces mean to me in my own life and why I choose to celebrate all year long.
I remember when I was diagnosed with multiple sclerosis. Was I grateful and thankful for this disease at the onset? Absolutely not! I was angry and frustrated and in a serious “why me” phase. But, as time seems to heal all wounds, over the following months, my heart softened and I started appreciating MS for what it is; a disease that can crush you or build you up. I chose the latter. MS taught me a strong lesson about gratitude and being thankful, I promise you.
I am a single lady with no man to date as far as the eyes can see. My son is grown and my family lives out of state. So when Thanksgiving arrives, I tend to feel really sad and lonely. It’s a time for families to celebrate. And I’m reminded it’s just me.
I try to chalk it up as just another Thursday in a world of Thursday’s. But the season itself reminds me I am alone. Many people are alone. I get that. I can choose to wallow in self pity or I can choose to see what is all around me.
I have a home which did not flood during Hurricane Harvey. I have people who love me. I have a strong faith in Jesus. My son has grown up into an amazing man. (I raised him by myself; jus’ sayin’). I can still walk and when I can’t, I’ll buy myself a purple scooter. I’ve always wanted one anyway. And purple is my favorite color.
My point is this: being thankful and grateful are a choice. It’s not easy to be appreciative of life when all around us, our world is falling into pieces. But here’s the thing: choose to take a long hard look at all you have in your life. I am certain there is always something to be grateful for. If you feel stuck, begin a life of service to others. I did, and this one choice completely changed me for the better.
About a year ago, I became a member of the Pearland Citizens Police Academy Alumni Association. I volunteer to serve our officers and believe me, if anything will teach you to be thankful, it will be the police officers and their stories of courage and strength against all odds. These men and women leave their homes every day to keep us safe, not ever knowing if they will come home. But they do it anyway. This choice alone has made me eternally grateful for our men and women in blue.
Here’s the thing: becoming a police officer was never a choice for me, but serving them and my community are; MS was not a choice. But becoming healthier in mind and spirit was a decision I happily made. Being alone at the holidays is not my choice. But giving back to others is something I have grown to love. Not having a decent, God-fearing man to share my life with is not my choice. But believing God will one day answer my prayers, well, that truly is my choice.
And baking apple and pecan pie is not my choice either, but eating every single one in sight until I disappear into a sugar coma, well, now that’s a decision I never regret.
Until I stand on the scale…
Though it doesn’t feel like it in most of the country, Fall is officially upon us. There’s the activities and the get togethers. The smells and the lead up to… the holiday season! Arguably fall is my favorite time of year and easily also one of the most stressful. In gearing up for the pending holidays, trying to enjoy outings with loved ones and friends and preparing for the end of the year in terms of work and personal life (I’m someone who likes to file my taxes in January if I can help it to get them out of the way) I inevitably run into a wall of burnout. It’s not permanent and to be honest is totally avoidable if I just created some margin. I know, it’s easier said than done when the kids, the spouse, the job, the (insert religious organization you belong to), the neighborhood watch, the scout troop or sports team, the friends, the family…the lists go on… all need something and they need it soon. If you are anything like me you’re a doer. But doers…they need margin most of all. We have to build in safe guards and set boundaries to make sure that while we’re caring for and participating with others, we’re also monitoring and taking care of ourselves. That we don’t run into the situation that we run totally out of steam, burning the candle at all ends and find ourselves in the dark.
Like I said, it’s easier said than done but just think how much better you’d be if you weren’t laying under the desk completely done at the end of the week. So, what have I done to help create space and boundaries for myself? I have people in my life who understand my doer mentality and essentially pull the plug from time to time. They’re there and not only listen to the litany of items on my ever growing To-Do list but also challenge me and say ‘Can someone else pick up the donations from the restaurant’ ‘Who can you call to finish making the activities for the carnival’ ‘Do you need to volunteer to run another event’ and most importantly, ‘What have you done this week that’s just for you’. They ask not because they are nosy or because they are looking to judge or condemn me. No, they ask because I’ve let them in and given them permission to tap me on the shoulder when it looks like I’m headed for the red zone. And vice versa, I’m part of their team. Their team that pulls them from the edge when they’re baking for the 5th bake sale this month or about to volunteer to run the fundraiser that drove them insane last year. You should surround yourself with people who you trust to step into your life and help you keep up with the boundaries you need…not the Jones’ down the block. So how do you do it? How do you build in the buffer? Because creating space and implementing margins in our time and energy may not feel natural at first if you are a doer, but it’ll help keep you from smacking into the wall of exhaustion…and who doesn’t want that?!
Please note that MSAA will be closed on Friday, April 14, 2017.
We will be back in the office on Monday, April 17, 2017 at 8:30 am.
Enjoy the spring weather!
Recently, one of our community experts wrote an article detailing how she recovers after a day of “overdoing it.” Whether overdoing it means doing too much physical activity, traveling, or just pushing yourself past your limits to take a shower, so many of our community members could relate to this feeling. Whether this occurs frequently or only occasionally, you are not alone! So many people responded with what overdoing it means to them, how it frustrates them, and they you recover. We received so many wonderful comments, we wanted to feature several to share with everyone!
“For me, overdoing it brings foot drop, a very bad mood, balance issues and trouble getting things into words. Oddly enough, reading books gets hard too……my mind just can’t seem to concentrate”
Overdoing it is rough and what might get you one day, might not be as bad on another day. You never really know until you’ve done it. And dealing with those who have no idea what it’s all about only adds to the problem”
“It stinks when ‘overdoing it’ consists of walking my child to the bus stop so she can get to school, coming home to make myself a bowl of cereal, and going all-out and brushing my teeth immediately after eating!”
Overdoing it can take on many forms and can be caused by completely varying triggers, causing much frustration and agony.
“I try to pace myself and not schedule too much for one day, but I also want to live as much as I can while I still can.”
“It is important to pace yourself which is why it’s important to put some breaks in between long days. But even doing that I’m still exhausted”
“I’m trying to make sure I eat healthy and pace myself, but it’s really difficult once I try. I’m still looking for a balance between work, classes and personal life”
Even the best laid plans and precautions can still lead to exhaustion later. If this sounds like you, you are certainly not alone!
“For me, the fatigue is the hardest hurdle because you can’t navigate around it. It must be recognized, respected, and my body rested. Always when it’s the last thing I WANT to do. Surrender. But meditation and focusing on releasing that anxiety from being forced to stop is an ongoing practice”
“I’ve been getting OT/PT and they made me keep a log of activity. I can do 1 to 2 activities a day. We practice taking breaks. Breathing between steps. Sitting before it’s too far. Laughing more”
“Try everything you can imagine to pull yourself through this maze. Exercise at home if you can’t get out. Don’t feel bad if you can’t accomplish tasks as you once did”
“Today I went in my room and took a nap. I explained that I had to. When I got up I apologized and told them I really had to take that nap”
“Sleep, shower, sleep, sleep, and sleep!”
Everyone handles their exhaustion after overdoing it differently. Whether it’s distracting yourself with a good book or movie, getting some exercise, shifting your mindset, or just getting some good, old-fashioned rest, you know best what your body needs!
Let us know how you overcome the exhaustion after overdoing it. Your advice may help someone else in the community who finds themselves struggling with this experience!
“I make plans, I cancel plans, all in the name of MS.”
“Friends just don’t understand, I’d rather just stay home.”
MS can be overwhelming in so many ways that most others can’t understand or relate to. Many individuals with MS find it can be exhausting and tiring to get out and socialize. The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.
“I tend to push people away that want to help, forgetting this is new territory for them too.”
“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”
It’s challenging going places and dealing with people who insist on “helping”. Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own. It just may take a bit longer than others, which is totally okay! However, it can get taxing to continually try to explain this to others.
“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”
“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”
Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition. It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths. Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration. Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!
“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”
“Been easier to hang out with my dog since she doesn’t ask questions.”
“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”
At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations. It really can set you back and take a toll. Sometimes you may just want a rest from all the exhaustion that these situations bring. Especially if you feel like just getting through each day is a chore!
It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there. You know the balance you need, and what your body can and can’t handle. It’s completely okay to say that a hermit’s life is the life for you when you need to!
Resolutions! We’re winding down the end of month one of 2017…have you stuck to your new years resolutions?? Or have you like most of us slowly fallen off that bandwagon? Every year individuals around the world make promises to themselves or set goals for the new year. Big, small and things in between, we make our lists. I’ve often done this myself and like many come the start of February when someone asks me “Hey how are your New Year’s Resolutions looking?” I look at them and with complete focus reply “Resolutions…what Resolutions?? Oh those silly things”
I’m sure I’m not alone in this idea of looking around at midnight on December 31st and getting caught up in the excitement and coming up with a few dozen things I will definitely do differently in 2017. This year as I watched the clock tick down and 2016 was on it’s way out the time door I decided that instead of vowing to eat better, read more or even save money that instead this year I wouldn’t make a resolution so much as start a conversation…with myself. As the party started to count down, 10…I thought over the past year. 9…The experiences and the problems. 8… I thought about the things that I’d loved about 2016. 7… and those that I didn’t. 6… And then I had a thought. 5… What if in 2017 instead of promising to do things I may or may not actually do. 4… I decided to promise myself something. 3… That this year, in 2017. 2… I would find, explore and do the things that make me happy. 1… My one and only promise/resolution/goal for 2017 was to the take time to really ask myself and listen intently to the answers to what makes me, me. The happy, more positive version of me…0.
So that’s what I’ve been doing this year. Yes I had my “I really should cook instead of running thru the drive thru” moment and gotten up early to do some yoga, or in some cases just have a cup of coffee and watched the sun rise. But not necessarily because I’m trying to be super healthy or save money or anything specific to that. But because cooking and watching a new day start and coffee make me happy. So it may be the end of the first month of 2017 but there is definitely still time to decide not on a resolution per say. But on more of a journey or an exploration…What if you spent some time this year, finding what makes you happy and doing that from time to time not by accident but intentionally. It might be easier to keep than some of the other resolutions we’ve all made.
I think we can all agree that this Election season has seemed much longer than most. While tomorrow may bring an end to the commercials, debates, and political satire on late night TV (for at least 3 years), it is imperative to remember how important this actually is. Voting has been around officially in the US since 1789 when a then-small number of eligible individuals voted in our first President, George Washington, and his right hand men. Since then we’ve sworn in 43 people to serve in the capacity of President and tomorrow we’ll elect number 44.
While it may feel like it at times, we aren’t helpless in what happens; and while not everyone may be satisfied with the outcome tomorrow, being part of the conversation is up to each and every one of us. Voting is our shot, an opportunity for us all to have a say in who governs our cities, counties, states, and country. While everyone has their own reason for voting for their choice, individuals living with disabilities or chronic illnesses have a vested interest in what comes next and whom our elected officials are. These officials will be responsible for upholding our benefit system, enacting our budgets for public transportation, and charged with making decisions on expanding or ending needed services. They’ll be some of the loudest voices for where research dollars go and be in the room where it happens, as conversations determine the fate of programs and plans that impact our healthcare system.
“Where” or “Who” can you ask questions of, you might ask? On Election Day many disability rights organizations are available by phone to help answer voter questions regarding issues that impact disability services. You can contact your local disability rights advocacy group to learn more about how you may be impacted by the pending election. Also, here are a few tips in regards to getting out to vote:
I know you might be thinking ‘Does it really matter if I vote?’ YES, Yes It Does. You don’t want to be the person asking ‘What’d I miss?’ or wonder later on what impact your vote could have had. Exercise your right to vote on November 8th. The world and history has its eyes on us, let’s make sure we all do our part to elect our next administration.
Bonus Points if you know how many references to Hamilton are included in this blog. But more seriously, get out and vote tomorrow November 8th…Your Vote Counts!
