September is here! Now let’s hope that it brings with it some cooler temps. Summer was especially cruel around the country this year with multiple heat waves, rain, devastating fires and other challenges. I don’t think I’m alone when I say I’m glad to see it go. But just because it’s September doesn’t mean it’s autumn-like weather just yet either. It’s been Continue reading
Ahh, the time of year that brings colorful flowers into bloom and comfortable temps is finally here! April showers that bring May flowers help mark the arrival of spring type weather and a time for people to get outside and enjoy this time of year. It’s not too warm yet in most of the country, which allows for outdoor events to be enjoyed, not denied because of the heat. So what are some things people can get out and enjoy doing during this spring time?
Doing outdoor chores like gardening or yard work can be relaxing at times while you go at your own pace, or just sitting outside during this season can be refreshing, breathing in air that the winter months made most people hibernate against. Attending ball games, community events and outings, exercising or taking a ride can all be welcomed activities to appreciate this month. Spring doesn’t seem to last too long in relation to the sizzling summer and frigid winter months, so consider this period a ‘fling’ to do what you like, no matter what the activity is.
You can get together with people you enjoy spending time with and make up your own activities or events this season. Try something new – like a project or artwork you’ve always wanted to create, and have others help you to make it a fun group activity. It’s important to let yourself be present in the moment, especially if you’re engaging in something new, so that you can appreciate the situation for what it’s offering. The seasons come and go, so be sure to make your ‘spring fling’ a memorable one!
What’s your idea of a fun ‘spring fling?’
People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.
You just feel exhausted
- After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
- The simple task of washing your hair is exhausting
- Your kids think that all you do is sleep and that you’re sick all the time
- You are so tired that you cry, and no amount of sleep helps
- Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
- You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
- You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
- You are tired or fatigued all the time, and you can’t find the energy to take a shower
- Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
- Feeling well-rested is a thing of the past
- You must have a plan B, C, D, etc.
- You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
- It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking
The weatherman is not your friend
- Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
- You’re the only one in the room saying, ‘Is it hot in here?’
- When 70 degrees feels like you’re standing inside of an oven
- When you can’t do any outdoor activities due to the heat
- When summer heat hits the triple digits, and you can barely breathe
- Your body is better at predicting the weather than the actual weather man
Getting around and maintaining control of your body is challenging
- You can’t play with your kids or take a walk with your husband
- You fall over when standing still
- Your upper body starts to walk, and your legs don’t get the memo in time
- You don’t even realize it when your legs go out from under you
- You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
- You just tip over when standing still on level ground
- When you wake up one morning, and you’re paralyzed on one side of your whole body
- You keep tripping up over nothing
- You are always dropping things
- You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
- Your hands are asleep and they don’t wake up
- You are eating dinner and your arm suddenly jerks and your food goes flying across the table
- You walk like you’ve had a few cocktails, but you haven’t had a sip
- You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
- You have to stop mid sentence because you’ve lost your train of thought
- You take the dog for a walk around the block,and your legs feel like they are encased in cement
- You walk like you are dancing to Michael Jackson’s “Thriller”
- When your knees are locked as though there’s a magnet holding them together
- When you go from 0 to pee in two seconds flat
- You have to hold on to walls because you lack balance
- You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
- You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
- You can’t stand without assistance
- Your head goes one way and your legs another
- You have to look at your hand and tell it to move
- When you can’t pass a field sobriety test while sober
- Despite only being 41, you walk like your 76 year-old mother
- You have to lean your elbows against the shower wall to wash your hair
Your mind isn’t as sharp as it used to be
- You lose your train of thought while mid-sentence
- You walk into a room and forgot why you went in there in the first place
- You have the hardest time trying to say what you want to say, and your words come out making no sense
- You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
- You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
- What was the question?
Pain and numbness become a part of everyday life
- Your feet feel like they are on fire or you have frostbite
- You are numb and tingly and have burning sensations all over
- You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
- You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
- You feel like you are being stabbed, and you have a tingling feeling all over your body
- You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
- You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
- You “feel” noises that go straight to the bone with subsequent weird pain!
- Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
- You feel like you are sitting in a wet bathing suit because your butt is numb
People assume that you are fine
- When everyone assumes you are normal and they say, ‘Let’s go – get with it’
- Your friends and family think you are fine because you look the same, so they think you are just being anti-social
- You get angry hearing, “Gee, you can’t be feeling bad … you look too good”
Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?
After a long and seasonably warm 4th of July holiday weekend, it may be time to relax and recover a bit from the weekend’s festivities and weather. A long holiday weekend can tire anyone out, and for those with MS, the heat index does not add favorably to the situation. Spending time with loved ones and friends, though enjoyable, can be tiring as well, so make sure to focus on your needs and health after these get-togethers. Take some time for yourself-retreat to cooler environments, take a stroll in the evening to unwind, or settle down with a hobby or activity you favor. Taking a time out from busy activities can help you catch your breath and get back into a routine that works in your day to day.
What do you do to wind down?
It’s time to say farewell to another month in the calendar year, and for most around the country, a hopeful farewell to the end of winter. It’s been a harsh season for most of the US, so with the end of March we welcome a warmer, though often rain consumed month of April. As we embark upon the end of this busy month, it also marks the end of Multiple Sclerosis Awareness Month, though only formally on the calendar. MS Awareness has the ability to continue the whole year round, and though its promotion in the month of March draws to a close, the MS community can continue raising awareness for the disease throughout the year. Continuing to increase education, advocacy and support for those with MS are some of the goals the community continuously strives for. So while the month of March comes to a close, it brings with it the opportunity to enter a new phase of the year with the same objective: to increase awareness of MS.
March 20th marks the first day of spring, and for many, you can start to see and feel the
signs that summer is approaching. The days become longer, the air becomes warmer, and the plants begin to grow again. I personally am looking forward to the evenings on the porch after work. – sitting with my feet up, just watching as the neighbors stroll by. The neighborhood becomes active again, with people stopping to say ‘hello’ instead of running inside to beat the cold. Wildlife starts to show their furry faces, popping by the porch to grab some treats.
Over this harsh New Jersey winter, I began to create a list of things that I wished to accomplish once the weather became milder. I welcomed 2014 as the year to try something new, and have pushed off many of these new things until now. Cabin fever has gotten a hold of me and I can’t wait to get out! I plan to become more active, but not in a physical sense. I want to spend more quality time with people and enjoy just being present in the moment. Taking the time to fully invest myself in a task with a friend, without thinking about the thousands of other things I need to do, or rushing off to the next event.
With the nice weather, you may also wish to be more active, perhaps joining an MS group,
or attending an educational MS event in your area. MSAA provides free local MS events throughout the country where you can learn about a certain topic, often presented by an MS specialist. The Calendar of Events on our webpage provides information on the type and location of these events. Events are continually being added every day. If you register with MSAA, you can receive information via e-mail or regular mail when an event is coming to your area. Registration is available on our webpage, or, you can reach out to our helpline at 1-800-532-7667 ext. 154 and a helpline consultant will be happy to take your information.
So what do you look forward to most in the spring? Do you have any plans or things you would like to try?
As the calendar reminds us to say goodbye to the summer season and hello to the beginning of fall, it’s a good time to start thinking about what the change of season means to you. Some people see the season change as something to embrace; to take advantage of being outdoors to enjoy the cooler temperatures, or to prepare for upcoming fall festivities and holidays that approach just as quickly as the seasons change. Do you enjoy the cool, leaf laden fall atmosphere? What about the shift from longer days to longer nights?
Children heading back to school and stores stocking up on holiday decorations are just some of the hallmarks that depict the fall season. The sound of leaves crunching under feet; the orange, red and yellow colors that paint the streets and the sight of birds making their way south for the upcoming winter months are some of the scenes that represent this fall solstice. What do you like most about the fall?