MS Life

It’s been a few days since I’ve written.  Life has a tendency to roll away from me and disappear.  Before I know it, a few days have passed.

Today I would like to talk about a few new things I have been noticing in the last few months and wonder if any of you have been experiencing this in the past or if it is shadowing you now.  Let me know, okay?  I am going through a lot of fatigue these days.  My sleep patterns are worse than ever and perhaps that’s part of the root of these new symptoms. 

Hair loss:  I’ve grown up with very thick curly hair.  A usual comment when I go to the hairdressers is, “Wow, you have a lot of hair!.”  I do, I did.  Now for the last few months, I would say that I’ve lost 50% of my hair.  That’s a lot of hair.  It rolls around on the floor. It lays with me in bed.  It washes off me in the shower and hangs on my shoulders.  Every time I comb my hair tons come out.  I have developed a bad habit now of running my fingers through my hair, which I’m sure doesn’t help to pick up the strays hanging about.  I think I’ve become compulsive about doing this. 

I wake up in the morning and I don’t recognize myself.  I look my age.  People would literally stare when I told them my age even a year ago.  Now, they still do that but I think they shouldn’t because what I see in the mirror says differently.  I guess I see the truth and other people see the makeup.   But when I’m at home sans makeup, its enough to make me run away from myself screaming down the street telling people to call the cops because there is a stranger in my house.

One of my friends told me about Biotin?  We can look this one up together.  It’s supposed to help with this problem.  Hover over the word and we can check it out together.  I’ll do my research after I’ve finished writing. 

So I wonder, is this MS, my hypothyroidism, my meds, my Christmas stress, the recent surgery?  Probably all of the above.  Okay let’s enable ourselves.  First things first.  I need to make an  appointment to have my thyroid checked.  Come to think of it, that’s about all I can do as far as black and white diagnostics are concerned.  I don’t know of any other tests besides blood work that would be an indicator.  I did have recent general blood work and that came back OK.  I had a severe case of iron deficiency anemia, but that’s under control now.  Has it something to do with the venous insufficiency in my legs?  It’s a mystery.  If I find anything out, I will let you know.  Meanwhile, I will get my thyroid checked.  I’m also waiting for the compression gear for my legs.  I hope they help since they cost an arm and a leg, or should I say two legs.   

There are a couple of other things I can do about my hair.  I need to make an appointment with my hairdresser and see what she thinks.  I need to get it cut very short or cut off altogether and start over.  The second thing I can do, which I’m already doing; is knit cute hats.  I wear a hat all the time these days.  I look like a cancer victim because you can tell there is not much bulk underneath the hats.  Sigh.

Another conundrum, inability to realize what to do with something:  It’s strange!  I sat in the car a few days ago and placed my key in the ignition.  I waited for something to happen when I suddenly realized, oh I have to turn it.  I was working with a software program and I needed to hit ‘enter’.  I looked at the button but for a moment, I didn’t know what it was there for.  It passed and I hit it.  I looked at my watch after showering to check the time.  I realized it was upside down.  I stared at it for a moment before I realized that I needed to take it off and turn it around.  I could go on and on, but it happens many times during the course of a day.

So what is this?  Who is going through this as well?  Pipe up please!  It’s only a few seconds that pass by before I recognize what I need to do, but it’s rather frightening.  Will it get worse.  What part of my brain is doing this?  I’m afraid that soon I will have to give up driving altogether because of this.  I hope not because it is my one freedom.  I only drive one day a week as it is.  But this hesitation has no place in driving.

I’m almost certain because of this third symptom that I can connect my hair to my thyroid.  I am freezing cold all the time.  This is another symptom of hypothyroidism.  I experienced these two symptoms together once before when I first discovered that I had hypothyroidism.  I  sit around with an electric blanket wrapped around me.  The other day I was out with a friend shopping and we found a lapghan that was like an electric blanket.  I snatched that thing right out of her hands and bought it.  Now I have this cute little lapghan in my office at all times.  I keep asking my husband, “Aren’t you cold?”  He tells me no that it’s just me.  Argh, frustrating as all get out.

The third thing is the sensation of burning legs.  I can’t sit still because of it.  It literally feels like my legs are burning.  I know that this is not connected to the venous insufficiency because I asked my doctor on my last visit.  The soreness is related but not this fire burning sensation.  I think this one I have to chalk up to paresthesias, where for some reason my brain is telling me something is there when it’s not.  It’s a common neurological symptom across a broad spectrum of neurological diseases.  It’s painful and exhausting.  I try cold showers, but I’m so cold already from the above symptom.  So I’m damned if I do and damned if I don’t.  They burn on and off.  It’s a perceived symptom.  It’s like when I went through the sensation of a bug on my face or hairline.  I kept looking in the mirror trying to find that bug and couldn’t find it.  But I would feel it crawling day in and day out in my hair or on my face.  Drove me nuts.  I hate bugs.  I’m one of those girls that runs screaming from the room when a spider waves around in the air.

So I’ve been dealing with these tiny issues that become very large issues when you’re dealing with them in solitude.  You can’t help but become obsessive about them.  I need to work through these things.  A couple of them, my doctor can help.  Maybe some vitamins can help as well.  The burning in my legs, who knows.  I will just have to ride this one out I think.

The fatigue?  Well if I tried to ride that one out, I would be six feet under still twitching with it.  I do hate when it rears its’ ugly head to say, “Hey remember me?  I’m still here and I’m going to really bug you for awhile.”  But that’s another whole blog.  Fatigue deserves it’s own page.

What is our job?  Enabling ourselves to live life to the fullest with MS!  So that’s what I need to do.  When several things hit all at once, it’s hard to uplift myself.  That’s been the battle these last few days.  But I find that the first thing I need to do is recognize it in public.  “Yeah, I’m going through this and that right now.”  By ‘in public’ I don’t necessarily mean to a group of people, but in public to myself.  If I ignore it, then I don’t fight it.  I allow it to exist.  So admitting it is the first step.  Then the second step is medical.  Get my butt in gear and get to the Doctor’s office to run some tests.  More than likely they will be normal.  But I have to take things step by step nonetheless.  The third thing is where my inner core comes into play.  How to deal with it and how to come out of this depressive slump I’m in because of it.

I need to lower the stresses in my life right now and Christmas is not a good time for this.  Christmas is another whole story for an entirely different blog.  It is enough to admit that holidays and I don’t get along.  (Excuse me while I turn my afghan on and get another cup of coffee.)

Okay, I’m back.  Where was I?  Oh yes, enabling myself to get through this holiday season.  My youngest son is coming home and I need to prepare for him.  I haven’t seen him in a year.   He’s a sweet young man with problems of his own trying to survive in a world where the economic status of this country plays a huge part on his income.  So we will whip out the checkbook and help him out because he will never ask for help.  Isn’t that something?  He is incredible.  I love giving to him because he doesn’t expect it from me, maybe just a little because he knows me.

I will keep you in touch but my connecting with you over the next couple of weeks may be hit or miss.  It’s the holidays and I envy those who have normal ones.  I go through the motions, set up a tree etc., but my heart is never in it.  I can’t go out shopping like most people (that’s probably a good thing).  I do shop online (that’s a bad thing).

I hope that you all have a very happy holiday season and try and stay positive.  I’m struggling just like you are for various reasons.  We all have our humps to get over.  This is a big one.  This is a time of loneliness and envy of healthy families, though I think those are far and few in between for one reason or another.

Let’s concentrate on the New Year.  Put on a wig or a hat and smile.  If you smile when you don’t want to smile it really does help.  Smiles and laughter are contagious just like yawning is.  These things, although put on at first, will actually have you smiling and laughing for real after a bit.  So do it.  But for me the most important thing is to stock up on hugs.  I love hugs. 

So from me to you over this holiday season a great big HUG!