Well, summer has exploded like a bad firework. The dreaded heat has washed us ashore and left us feeling wrung out. Exhaustion is our needy, constant companion on the beach, while the ship parties.
I am right there with ya. Feeling left out seems to engulf my summers. That ship stranded me on the desert island called MS. Even in my chair, wet noodle syndrome hangs around.
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Joy seems to morph. Be open to fluid change. The changes in MS will make you see the ebb and flow. Ride the wave. The current might bring you to a hobby you would never try.
Yah yah, flowery language aside. Embrace the change, people. Try to at least. MS is about trying. Try on many faces until it fits. It is kinda like jeans. You try on several pairs. If your butt looks good, buy them. If you can do it and like it, try it. But, remember to rest and don’t get hot.
Try a new hobby. If MS changes, try another. If it is not for you, try another. The list is endless. No tests or grades. Maybe try something outside the box.
Continue readingOld man winter is finally sleeping. While bikini weather is not welcome, the sunshine is and I need it and flowers. Heat I can do without. I need the grey to go away.
NC this year has had strange weather. Gosh, I sound like an old man talking about the weather. I promise I am not an old man. Old…some days I feel old.
Spring is full of rain and up and weather. NC has big swings, this time of year. Now we are in season five. Pollen. It is like snow and it also means cold, wet, grey skies, but dormant vegetation are about to vanish. My favorite chocolate is around too. It better start laying those Cadbury Creme Eggs. Come on furball, lay those eggs faster.
Continue readingI must say this is easier said than done.
I am kinda bored actually. I am a homebody, but even I have limits. MS has aged me, too.
I mean, I have always liked birds, but watching them used to bore me. Now I can watch them up close. It is like watching a fight club with feathers. Male Cardinals and Blue Jays are jerks. Bullies. I can watch a soap opera right outside the window.
Continue readingOK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.
Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.
So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift.
If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.
I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.
Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.
Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit. Nothing big or painful yet. Getting ready to turn that around with humor.
Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.
It is a war of bugs and blankets of heat.
Limit time outdoors folks. Being unsocial is part of MS for many. I would rather not be a wet noodle. Even if you are an extrovert, say “no” to the soggy social butterfly. I would rather be perky than soggy. Butterflies can’t fly with wet wings and MS can drench them. Be social inside. Air conditioning is our friend. Stay cool and they will come, so to speak.
Drink slushees and smoothies. I find sipping semi frozen drinks help me, if I can get through the brain freeze. When available, ice cream is my BFF. Ice being the main word for me. Wear ice and consume it.
Cool feet housed in sandals, a cold drink, air conditioning and various cooling items are my shields in the war on summer heat.
I also picked up a trick from my aunt years ago for fashion purposes. Now, I use it for MS. Swim trunks make great shorts, with the mesh cut out. They can get wet, thus a glorious moment of reprieve. Bonus, they dry fast and allow for multiple cooling opportunities.
I used cooling wrist wraps, when I rode horses for therapy. I need new ones, however. Their farm smell was offensive at my last theme park visit.
While the kids rode some puke inducing roller coaster, I waited in the shade. Many folks didn’t embrace the earthy smell my wrist wraps were omitting. So yeah I need new ones.
Cool is cool. We are not going to gain brownie points. I often pay for trying to be outside. Stay where it is cool. I personally have days of paybacks just for letting my butterfly be social. If I get hot, then paybacks are longer.
Hop away from the old and hop to the new. It is always a good time to star anew, fresh air and new life. Leave to cold dead winter behind. Shed it like an old snake skin.
I know easier said than done. I face the “why bother” monster too. Spring feels magical. Embrace that magic. Before the suffocating, still summer heat, and bugs, enjoy the clean breeze and light air.
New beginnings don’t care where you plop them, but springtime seems to be good. Try a bit of exercise. Maybe some easy, gentle yoga? Maybe a few sit-ups. Maybe a pet is your new or perhaps something else. Organizing something to better suit your needs. Be open to anything being a new beginning.
A new hair cut is a refreshing way to mark a new beginning, even if it is crushed by fatigue. I think making plans is just as good as doing them. Trying is worthy for us. Daily unplanned obstacles are thrown at us, like an over filled water balloon.
I plan on getting some pink streaks in my hair this summer. If I can get it done, great. If not, no loss. I avoid appointments because I never know what MS will do. I am far from spontaneous and I hyper-plan. With MS, appointments often are commitments I avoid. MS requires flexibility. I am more set in stone, a “yes sir” kind of girl. MS is at odds with being raised a Navy brat.
So, plan your new beginning, but be flexible enough to change plans. MS is like chocolate in summer. Some days it melts on your hand and other days you have bad tremors and it melts in your hair. True story. Plan, but be flexible.
I like to see flexibility as plan B. Flexibility and spontaneity cause me anxiety. New beginnings are more like goals. I think any new good habit is a new beginning really. Self improvement is great. Self care is a great new beginning too.
Fresh flowers, for example, on my kitchen counter, all the time, was a new beginning for me. My allergies don’t really like it, but too bad. I enjoy fresh flowers, as my morning greeting. I just have tissues handy. New beginnings should be good. They may require a contingency or a strategy.
We are surrounded by stress of all kinds. Each kind needs different management. But, don’t surrender to it. You gotta be like a ninja in your approach. Sneak up on it. Don’t stress about stress.
I try to fight each stressor individually. A custom fight. Each one gets something different. How special.
I do try different ways of dealing with each. Breathing through it can work. I admit, I get frustrating and start to cry. But, being raised by a military man, I learned to plow through frustrations. Identify it is stressing you out and find a solution. Crying can be a good release, but don’t stay too long.
Listening to music is a big help. I listen to my favorite tunes. Some power me up and others mellow me out. My boys hate my music, but it gets me through. I have a song I listened too before gymnastic meets. I was too legit to quit. Keep going.
Anger, for me, at something being hard has helped me. I often stress about getting shoes on. Shoe fights. I start sweating. I sing to myself. I am too legit to quit.
My mom recently entered a memory care home. I can’t stress about that so, I have some chocolate. One little piece helps me and I try and be positive too.
Stress is all around. It can be small like just brushing your hair without smacking yourself in the face. It can be big like a loved one saying something mean. Try different ways to squish that stress bug.
At times, the stress bug will quiet right away. Other times, it seems to have nine lives. Smoosh it each time with a different tactic. Just don’t give in. Something will quiet that bug. Two bits of chocolate or more might be needed.
I am a big introvert. I think I am allergic to people. It is more drama and there is always drama. I hate drama. MS gives us enough drama, so I don’t need more. “Full up dude. Move on. Nothing to see here.”
With that being said, we still need human interaction. Build relationships with substance. Learn to hone in on that vibe. Tune into the valued relationship channel. If this is not natural for you, it can be learned.
I once did not listen to that station concerning someone. I gave them the benefit of the doubt. I was chastising myself for being too hard on people. I opened my gate and didn’t pay attention. Bad idea. Let’s just say that not everyone out-grows being mean.
MSers cannot afford to just ignore signs or vibes you would normally see before you jump into the shark tank. There are sharp teeth in the tank of life. Some people know no other way then to eat you alive.
When you come across a treasured relationship, keep it. It is a rare gem. Family doesn’t automatically mean you are in possession of a rare gem. You have to test it and put feelers out. Go slow.
Sad to say, but a lot of folks will never understand. MS is tough to contemplate even for those of us living with it. MS is full of surprises. Study your relationships. What is their value?
Our efforts are worth a lot. Are the receivers worth your efforts? In a valued or important relationship choose wisely. Observation and your gut feeling often play a role in valued relationships. Choose wisely.
After 2020, my hope bucket has changed. Simple is the way to go. Smaller goals and a smaller court or field.
Waking up to sunshine is a cause for hope. Sunshine gives me hope of the smile of a new day. No matter how cold it might be, sunshine gives me hope to move and helps me begin my day. Even if my to do list is crushed by MS fatigue, I had hope.
I am not blind to the struggles of MS. I have times when Continue reading