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Tuesday, August 26, 2014

RLS- Restless Leg Syndrom

RLS.  You know that feeling  at 2 a.m, when your legs decide "Hey let's get up right now and walk around the rest of the night!!!".  They are like that overly excited, annoying acquaintance who just loves to talk about everything. All. The.Time. So you do the equivalent of nodding and listening politely and get up pace to around for a few minutes maybe even a half an hour, get a drink of water go back to bed and BAM it starts again.  My legs are like " Oh, have I told you about my cat and all the tricks she can do?" I hate that! I know many of you do too.  It feels like a cross between a cramp and a twitch and can affect any of my muscles from the calves to upper thighs.

Over the years I have found a few things that have helped me.
Hydration:
I notice if I don't drink enough water throughout the day I have symptoms. *Pee alert* Do not however, try to get all your hydration in an hour before bed because then you will have a completely different reason for not sleeping.

Exercise:
When I haven't worked up a sweat during the day my legs are ready to run a marathon at night.  I know exercise may be hard for some folks, but try your best to do a little something everyday. 

Stretching:
I try to do some light leg stretches before bedtime. I have to shooo the dogs away from me during stretch time because I feel they are always criticizing my downward dog. 

Even if I have done all these things I sometimes get the twitchies and I have few tricks for those times too.

Long Socks:
For a long time I was wearing my husband's Air Force issued socks, but he got mad when I kept cutting the toes off. So. I bought a pair of compression socks that they sell at the pharmacy for diabetic patients.  They work wonders to calm my jumpy legs.  I cut the toes out because personally I don't like my toes being trapped and squished together.  The socks still work fine.

Warm Bath:
When I'm desperate to sleep the sound of running bath water at 2 a.m. is the best sound in the world to me.  I run a warm, not hot, bath and soak for at least 30 minutes.  I'll stretch and massage the calf muscles while I'm in there.  It feels glorious.

Heating Pad:
If I'm not able to get in the bath due to mobility I keep a heating pad near the bed. I put it on low heat and put it under my legs. I have a pad that will automatically shut off after 30 minutes.  That's a good idea for safety if I fall asleep.

When I have to have Solumedrol treatments, it's inevitable that RLS will be along for the joy ride the steroids are taking my body on.  I can do all these little tricks of mine and it just won't stop, so I'll have to go the dreaded medication route. I hate putting more crap in my stystem than I already do, but if I want to sleep and not become some crazed, roided up, MommyMonster, I go for the sleeping pills. I ask my Doc for a 5 day supply of Ambien.  I don't know why but I have found medications like Nyquil do not work and actually make the symptoms of my RLS worse.I have tried Baclofen, but again I don't like to take too many pills and it left me feeling a little hazy during the day.

There are many more "home remedies" on the web that I haven't tried, a bar of soap at the foot of your bed, Vicks on your feet, magnesium supplements, the list goes on and on really.  I just know the ones I wrote about work for me.  I hope you find something that works for you too.  If not we can always go for a 2 a.m. run together.





Friday, August 22, 2014

M.S. and Depression

In light of the tragic news of Robin Williams passing last week I wanted to write on depression and Multiple Sclerosis. Depression is a common symptom of M.S. I have been having a hard time though because I really didn't know how to write about the subject without coming off as some kind of expert, which I'm not.  I don't want to say here's what I have been through and I came through it swimmingly, because I didn't. I only know my experience.  So here goes.......

When people ask me how I'm doing, like many people, I always reply "fine", or "good days and bad days, but I'm doing good".  Those are my default answers, for my friends, family and doctor.  I don't think they want to know I really feel.  If  were to be  honest I'd say,

 "well, today I'm feeling an overwhelming sense of dread and self loathing, but It's better than the anxiety attack I had two days ago when I took the girls across town to the mall for school shopping"

 " I pretty much hurt everywhere and live on ibuprofen and coffee."

 "I have been crying since I dropped the girls at school today, and I don't really know why"

 "I'm lonely"

"I feel like a failure"

"No one really cares and I don't blame them I don't deserve it"

"I wish I could just live by myself so I don't infect my others with my mood"

"I'm live my life in a haze, never really seeing anything clearly"

"I'm a terrible Ma.  My girls deserve someone so much better"

"I'm a burden and it will just get worse"

"I'm stupid"

"I can't do anything right"

"I feel like someone dropped me in a pit and every time   I try to crawl out of it I lose my grip and bring more dirt down on myself"
 
There are so many more statements I could share, but just thinking about them puts tears in my eyes.  I'm angry.  I feel like my body has completely betrayed me.  I run, I eat fairly well, but I just cannot seem to get any control over my body and brain. Control.  So much stems from that one word.  I feel like I lost control he day I was diagnosed twenty three years ago,  and I have been scratching and clawing to get a little bit back everyday since then.   I want so badly to have control over myself that I end up having control over nothing. I go about my life everyday, all the while this dialogue of negativity and self hate runs in the back of mind.  Sometimes it's just a mosquito buzz,other times it's a raging screammo concert and my brain is the mosh pit.

While all this sounds very dire it's just a fact of my life and I have learned to live with it. I sometimes reach out when I feel like I'm slipping too far under, but I admit I don't that often because I know people have their own life dramas.  My husband doesn't really know what to do with me during these episodes.  He claims to never have had any of these thoughts or feelings.  I'm jealous.   Makes me feel like I'm less in his eyes because I can't snap out of it.   I take my Cymbalta religiously every day and wonder what I would be like if I were not taking an anti-depressant.   I have tried meditation, but my mind just spins too fast to really slow it down enough.  Running works like meditation for me. I look forward to my girls getting home from school and Keith coming home from work because then I can immerse myself in their days.  I don't have to think about me.  Writing this blog helps greatly.  It may not be written eloquently, but it's written from heart and and is a purge for my soul.

I know reading over this it doesn't sound like I have things under control, but I do to an extent.  In my darkest days I know in my heart what would happen to my family if I were to give in and hurt myself and I can not do that to them.  I won't do that to them.  I will keep going on and doing my best as a wife and mother.  I will give them all the love that I want to give myself.  There is always going to be colder weather for me, but sometimes the sun shines through just enough to warm me.

I have included a link to National M.S. society's page about depression if you want a more technical take on it.  I don't know if I have helped anyone, but at least you know you're not alone.  Maybe hearing my words echoing your own with prompt you to seek help and guidance.


http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Depression

Friday, August 15, 2014

I want to run!

I'm feeling pretty bummed today.  The one thing that makes me feel normal and good about myself has been causing  me a lot of pain lately.  I can't hardly walk in the mornings because my right foot is killing me.  My right ankle is swollen and my heel hurts to touch.  I know it's probably Plantar Faciitis, but I haven't been to the doctor because I really hate going to the doctor.  I have no patience for ailments other than the Monster in my life.  Stupid? Yeppers, and now I'm paying for it.  I don't know why this is happening now after all these years.  My only guess is because I already had issues with slight foot drop in my right leg I have just made it worse somehow.  Whatever the cause the result is an extremely unhappy me.  I just want to feel good about myself and running was one thing I did that helped.  I get frustrated because I'm not as fast as other women my age and I haven't really lost any weight, but still I love it.  Sure I can go to the park and walk now that I "came out" to my running buddies there, but that's not what I want to do. I want to feel strong.  I want to feel healthy.

My real issue is I liked the routine of running.  Getting my clothes together in the morning, lacing up my shoes, driving to the park and running. Then I would get home jump in the shower and try to figure out the rest of my day. Now I am just floundering.  I don't know what to do with myself.  I can't concentrate on a project long enough to complete one.  My house is a mess and I don't know where to start so I just don't.  I am completely frustrated and overwhelmed.  I don't know what to do.  I feel like I just sit here on hold until I have to pick someone up from band, or take another one to work and then pick her up.  It's only 11:30, but I have to think about what to make for dinner already because of all the running the girls have to do. I want to scream.  I want to cry.  I want to run away.  I want to run away for just an hour.  I want to run.

Thursday, August 7, 2014

Needle Fatigue

With all the needle pokes I have endured in my life the last 20 plus years you'd think I'd have some bad ass, freaking epic tattoo to show for them.  Instead I look like I have been attacked by an octopus with all the round welts all over my stomach, legs, and hips. They really aren't that bad, and eventually fade, but there is always a round, red mark somewhere on my body at any given day. Such is life in the body of an M.Ser.

Some days those little red marks bother me more than others. It's not really the welts, but the shots that cause them.  There are days when I just can't even look at the syringe without wanting to cry.  In my mind the needle swells to gigantic proportions and the little pin prick hurts more than labor.  Dramatic much? You bet. 

My Doc calls it needle fatigue.  Sometimes a person encounters a mental block for whatever reason when it comes to self injections. I have been through this many times over the years. How did I get over it?  Mostly guilt.  I'll end up having a relapse and feel bad that I didn't do everything I could to control the Monster.  Sometimes my Doc will use my kids against me and say I'm not being the best mother I can be if I don't take care of myself.  There is a look that my husband gets when he finds out I have been shirking my shots that will do it for me too.

I have also found that if I make it part of my bedtime ritual I won't be able to relax until the deed it done.  I'll lay out my shot and sharps bin, take a warm shower and inject away.  Then I'll reward myself with a glass of red wine.  Sometimes I'll treat myself to a mud mask or a paint my toe nails.  I will tell myself I can't read one line in whatever fantasy/mystery/scifi book I'm currently living vicariously through until I inject.  If I feel really anti-shot I'll throw a tweet out there and I know I can count on at least one of my fellow M.S. warriors to give me some encouragement.  That really helps a lot, because I know they are going through the same thing.

While all these tricks keep me on track for the most part,  much of keeping to my injection schedule is self control. I know there is some wiggle room with the schedule, but I tend to take it to a full on booty shaking twerking room place, and then before you know it I haven't done a shot in a week or two.  I just have to do it every Monday, Weds, and Friday with no deviations.