Summer is finally here and it brought me a little girl! My second child was born at the end of May, I am very excited to be a father again but I forgot about all the work that goes into keeping a newborn happy and quiet! While trying to keep my little princess happy I can’t forget about my most fragile dependent…Multiple Sclerosis.

Having a newborn in the house has been great but my MS tries to butt in whenever possible. The simplest things are complicated by being twitchy or by being unable to use my fine motor. Picking up a sleeping baby is something that needs to be done with precision and finesse to avoid waking the slumbering mini. Unfortunately this Dad has the finesse of Charles Barkley on a golf course. My left hand is pretty weak and fine motor is non-existent so getting those tiny little snaps to fasten together is incredibly frustrating, lucky for me my wife is much more patient than I am. Lucky for her diapers are still totally doable for me.

”It is hard to remain sleeping when the guy holding you twitches and is constantly bouncing”, said my three week old daughter. Over the past few months my arms and legs seem to have a mind of their own. It started with my right shoulder jerking around a few months ago; I figured it was a side effect of the stress of work and preparations for the baby. I’ve had twitches in the past during stressful events, but they went away over time. It seems like these twitches have moved in permanently. The shoulder twitch has evolved into a full right arm flail when I get tired or stressed out, same as my legs. This has been worrisome as almost all of my MS symptoms have stayed on the left side of my body, I will be seeing my neuro next week to discuss all of this.

Finally my old friend balance or lack of balance has sprung up again. While trying to walk around carrying an eight pound bundle of joy it is important to not trip and fall, so far so good. When I do carry the baby I am overly cautious and try not to go very far with her. When my son was an infant I did fall but I was able to lay him on the couch as I went down, kind of a baby finger roll. That was one of the scariest things to ever happen to me, but it could’ve been much worse.

Over the next few weeks of Summer I hope to get a hold of these symptoms and try to relax a little now that the baby is finally here. With any luck the baby will rest and grow and MS will rest and stay quiet.

Be a warrior today,
Donn

With MS the F word is FATIGUE! Most people get it but not all and in varying degrees. Sometimes it is very bothersome and many things can trigger it so one feels even worse. Being tired is different than being fatigued.

Sleep takes care of tiredness but not fatigue and that is the problem. This was one of first big symptoms I started to have and it was unrelenting and over powering. I started to miss days at work and even if I got there felt like doing nothing. If it was a warm day then I felt like someone had poured Jell-O in me and poured cement on top of me, I could barely move!

NO matter how much sleep I got it didn’t help. I would go to bed exhausted and get up feeling tired and drained. Well in time I got diagnosed with MS and to this day no one really understands why this is such a problem with MS but it is!

I can fall asleep anywhere at any time (I try not to of course). I have sat in the DR’s office doing the usual waiting and looking at floor and thinking, “would anyone mind if I just curled up and went to sleep” that’s how it is sometimes.

SO through the years this is what I have done to fight this.

• I got a handicapped Placard so at least I have some strength left to go shopping or whatever.
• Minimize the amount of walking I have to do when away from home.
• On occasion use a wheel chair, scooter or something similar so I can enjoy what ever it is I want to do and that also gives me a place to “sit”.
• Try to avoid warm places or outings for that really builds up fatigue.
• Try to stay in cooler places, use AC and fans. This helps in drawing out the heat and you feel more with it.
• Don’t over tax myself.
• Ask for help when I start to feel too fatigued.
• Break down my goals more so that I CAN do them.
• I use MOTIVATION a lot for this really spurs me on if Fatigue is gnawing at me.
• Every so often I have to give in to it for the invisible brick wall just stops me cold. I just go lay down let the tears roll, feel mad about the whole thing and try to relax and go to sleep for awhile. Then I say OK time is UP and onward again.
• I find light exercise and Tai Chi help.
• Sometimes too much sleep is not good.
• Do things that I really love it helps keep me going.
• Take a nap before I do something that might make me fatigued.
• I don’t take any meds for this because I am allergic to so much and keep in mind a lot of meds can also make fatigue worse.
• Get plenty of fresh air, springtime is perfect for that not to mention a visual feast for the eyes.
• The number one thing I do is JUST TRY TO WORK THROUGH OR AROUND IT.
• I wrestle with this every day and I know it is going to be there. So I give myself plenty of time to do things and don’t expect so much out of myself as I used to.
• I am always on the look out for better ways to do things too and try to keep things simple and easy.

I may not win the war on this but one day at a time as with all MS things and eventually I get somewhere. I have learned to live with it but more on MY terms :)

By Holly