Happiness is Acceptance, Acceptance is Peace

It's been a few months, and I've realized something.

My medical history is a full one, for sure.  This year alone, I will have trumped what most people experience in their medical lives until they reach their mid to late 60's.  In the last four years, I have learned more about myself and my disease(s) than my medical professionals typically know off the bat.  It has made me a better clinician to my patients, and it has made me more empathetic as a human.

But most importantly, I feel it is vital to stress one fact: my life is not hard.

I say this now, having lived a hard life.  Sure, I can sew sonnets of woe for my past, I'm even writing a book, and I could elicit an "awww" response with a genuine story every day if I wanted to.  But I don't.  Because as hard as my life has been, I owe it to the world not to complain about it - and because I know that, right now, it is not hard.

I have a husband who loves me, and who is so patient with me and my many idiosyncracies.  I find joy in the stupidest things - from finding a clutch of snail eggs on my aquarium wall, to watching my bunnies leap over each other in the yard.  I pulled the weeds in the front of my home today, feeling pride that I have a place to keep nice.  I admired my daughter for minutes on end this evening, watching her jump around in her pajamas and yell out colors.  I love watching her grow.  I am at peace.  And, most of all, I am happy.

I know a large part of my happiness is due to my medication - when I was stricken with anxiety 24/7, I could count the days that I felt well because they were so few that I had to take stock of them.  Just before I was diagnosed with MS was one of these times - and it came crashing to a halt because of a public panic attack.  I don't have those any more.  Things have somewhat swung the other way now, to tell you the truth - I watch emotional films and listen to sad songs and do not shed a tear.  I haven't really cried in months.  I welled up at the end of "13 Going On 30" the other day for about a minute - then it dried up.  I don't expose myself to feelings of anxiety or sadness on purpose any more, and I think this is a big reason why my brain doesn't process those emotions as readily as it used to.

I am very pleased that, at 30 years old, I am content with where I am in life.  I love my job.  I love my family.  I love my home, my pets, my plants.  I even like myself most days, a huge change from where I have been.

No - I am not healthy.  But my life isn't hard. 
I know plenty of healthy folks who are beautiful, put-together, and miserable.

There is a balance of life - what we are given, and what we do with it.  I choose to make the most of what I have been given - even if that set of cards seems like a shit hand at first.  You never know what will be wild!

Love all, MSloan

When Spasticity Strikes Back

Well, it has been a thankful long time since I have felt a need to update my MS blog.  Things have been generally well.  I quit the job at the sinking ship.  I have a new job which will allow me to run my own office very soon - 2 weeks from now, in fact.  I won't need to commute from home to work any longer.  My daughter is beautiful, smart, and a joy.  My husband, despite being left to watch her for several hours as I commute and while I attempt to have a life as a working mother, has no plans to leave me :).


Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.

It began about three weeks ago with a particularly hot day.  I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet.  It has been about a year since I felt it, briefly, after a long walk.  I felt it again and again, every time I moved my head, for about three or four days.

Then, the numbness returned in my legs.  Only in pieces, though.  Not enough to really raise any red flags.

I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side.  By the time I went to bed, I wasn't able to take a full, deep breath without pain.  But by morning, it was gone.  I figured all of this was due to the heat.

Well, tonight while we were in the grocery store, my husband and I were teasing each other.  I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot.  It was a cramp.  I figured, no big deal, it's just a cramp.  But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place.  The muscle contraction was so strong it was moving my toes from the ball of my foot forward!  Oh, man, it HURT!   I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary.  I couldn't walk on it.  I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.

As I limped out of the store, my left foot started to feel better.  However, I was cautious.  I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not).  And guess what?  Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot!  Akkk!!!!  I felt like I was being attacked by my own feet.  I got in the car and just sat still, massaging my feet and hoping the cramping would stop.

Since we got home, I have been trying to keep off my feet, literally.  I am worried that maybe it was my shoes, maybe it was just how I was walking.  I feel literally scared of walking right now.  I'm afraid if I put weight on my feet, they will spasm.  So I am holding still.  My anxiety over it is making me walk funny, which I fear will mean I will sprain something.  Every time I walk up my stairs, I get a sensation of early cramping in my foot.  I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.

And, I understand better why it may be a good idea to get a handicap placard if it ever happens again.  Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.

MS fucking blows.  And I was doing so well!  Fingers crossed that this was a one-off.
Love, MSloan

Welcome To A New Year

Hey all!

I am sorry for my continued absence; turns out, raising a baby when you have MS is very difficult!  I find myself getting really exhausted really quickly, I can't stay up past 10 PM most nights, and whenever I get a free moment, I want to play with my daughter, so that leaves little time for blogging.  Or reading.  Or eating.  Or cleaning.  I pretty much have no time for anything!

My MS has remained very stable since she was born, though.  My right eye is still mostly useless (went dark in December 2015).  I am grateful for every day that I don't have a bad symptom.  A few months back, I had an honest-to-goodness MS Hug that almost floored me.  I really thought I was having a heart attack.  The "Hug" (still want to clock whoever came up with that name) began in the middle of my back and spread to my sides.  It was painful, as if my muscles were being squeezed, which made it hard to breathe.  Lying down made it worse.  I called the ER to make sure, you know, I wasn't actually having a heart attack, and they told me that they couldn't really help me.

Which was then topped off by having to explain to several nurses that, yes, MS can cause pain, that it could be the cause of my current predicament, and no, not all people with MS just slowly lose control of their bodies until they can't walk.  How nice.

My advice for the new year is thus: focus on the positive.  I think my MS is better because I am reducing stress around me as much as possible.  Remember that MS is triggered by stress - positive AND  negative alike - so don't forget to breathe during the day.  You'll get through it!

Love all,
MSloan

"Good" Grief

Okay, blog.  I'm ready to talk a little, now.

My mother killed herself on May 5th of this year, just days after my daughter was born.  I will never be able to forget the way my heart sank when I answered the knocking on my door to find two police officers and a chaplain.  I knew exactly what they were going to say, but I didn't want to hear it.  I was too afraid to admit to myself that I already knew what was going on; I had suspected it since the day before, when I called her, and received no answer.

My mom and I had a strained relationship over the past ~18 months or so, mostly because she was experiencing a personality change.  I believe in my heart that she was suffering from early dementia or Alzheimer's.  She was 62 years old.  It was too early for that bullshit, but it was happening before my eyes.  My mother, a master typist and pianist, was writing me hundreds (and yes, literally hundreds) of emails at least weekly, many of which were frighteningly banged out on her keyboard in all caps.

I reached out to family and her friends, begging, pleading for help.  Clearly, something was very wrong.  Many of them agreed, but didn't know what to do, and when I became pregnant they became all the more insistent that I distance myself from her - and when I lost vision in my eye in December because of an MS flare, they were even more assertive in their recommendations.  I couldn't do it.  My sister and my father always had a close connection that I never really could come close to - my dad and I just don't have the same kind of personality.  But my mother and I did.  It was one of the biggest reasons why I was terrified of turning into her (and still am).  So even though it hurt me deeply, even though she said things no mother in her right mind would ever dare to say to their pregnant kid, I soldiered on and kept in contact through my pain and against my family's suggestions.

The last month of my mother's life ushered in a huge change.  She was actually showing her house and wanted to move - this time for real.  Though she wouldn't tell me where she wanted to actually go, which caused some concerns.  At first, her communications with me via email tapered - then, the phone started ringing again.  I hadn't been able to speak on the phone with my mother in almost two years - and I used to call her every day.  Every day.  Think about that.  Suddenly I could keep her on the phone for 15 minutes, then 30, then 45.  I only got hung up on once, and then they started getting better.  It was like my mom was coming out of the fog, and the terrible "Mr. Hyde" that I had to walk on eggshells to avoid was disappearing.

But then it took another turn, and went from bad to worse, but in an entirely different sense.  My mother apologized to me for what she had said.  Said she was "horrified" by what she had said to me, my sister, her sister, and about us all... I told her that I appreciated her apology and I would always love her.  We were making up for lost time, and I was sharing more things about my pregnancy.  Was trying to plan a time for her to come and meet the baby.  Was making plans for a future that would never manifest.

The last week of her life was terrifying.  She called me the day I brought my baby home from the hospital to tell me she thought she needed to be institutionalized.  She said she wanted to give me power of attorney and gave me the contact information for her lawyer (an old family friend, one of the many who told me to distance myself, and I did not obey).  She said she had a plan for getting treatment and we needed to sell the house and put her in a safer place.  Wanted me to plan for where her pets would go if she needed emergency treatment.  Then she started hinting that she knew something was terribly wrong with her brain.

Mom taught me over many years that mental illness was nothing to be ashamed of, that it was just as real and just as valid as cancer, and should be treated.  She took Prozac and self medicated with marijuana.  My sister had to take St. John's Wort growing up, and my depression was so mild in comparison that it was largely ignored.  As an adult, I have had my ups and downs, and chose to get treatment and never regretted that.  But suddenly mom was very against the allegation that she had a mental illness, particularly over the time frame where there was this "personality change" - it was offensive to her to make the suggestion.

But when she called me that last week, she was insistent that something was wrong.  She told me she had a diagnosis - Adjustment Disorder.  Sounds about right - and might even be a further manifestation of Borderline Personality Disorder, which I am convinced my mother had.  I always felt she had that, though I didn't know its name until about 7 years ago.  She fit the bill.  Monday before she died, she was lost not far from her home.  I called her a tow truck because her car broke down.  30 minutes later, she called and said I needed to call her an ambulance.  I talked her down, the tow truck arrived, and she made it home.  Seemed all the better for it.  I told her I was working on a home for the dogs - and I called my father.  I didn't want to get him involved, but I had to.

That Monday night she and I spoke on the phone for a long time ... almost two hours.  It was during this phone call that she made the first even remotely suggestive hints that she was feeling suicidal.  It wasn't even something that she said - it was more a feeling that I had.  She was talking about being a burden to the family, and how she felt that people who were getting progressively worse had a duty to die to help their loved ones.  I reiterated that she was worth taking care of and that it was my job to do so - that how she felt about me as her daughter and how she wanted to take care of me, was how I felt about taking care of her.  I suggested to Steve that she was sounding "awfully suicidal, and it's scaring me."  He asked if she had any outright threats or suggestions - and I said no.

I asked her to write down affirmations that she was "worth taking care of" daily, in the same way I do on my Positivity Blog.  She said she would do it.  She kept mentioning that she had a doctor's appointment on Thursday and I said I wanted her to discuss all these concerns with her doctor and definitely get evaluated for more mental stuff, if it was due to medication or something else (while she did not tell me that she stopped taking marijuana edibles, she did tell her cousin this, and I worry that the withdrawal had as much of a negative effect as taking the drugs did.  We'll never know).

The next day, Tuesday, she called me three times in an hour, I was getting my daughter ready for her first check up and we were already late and I had gotten no sleep.  She said I needed to rehome the dogs "today."  I couldn't process what she was saying and asked my sister to call her and help.  No answer.  She called about an hour later and said she was better and things were fine.  I should have probed more.

Wednesday was the last time I spoke with mom.  She called and asked me outright if I thought she had Borderline.  I said, it's possible.  But now that she was apologizing and being self-aware, that negated that suggestion.  I told her that I was worried about her because she believed she was very sick, and gave me a reason to worry as well.  I didn't ask her what gave her that impression.  She kept saying that "it isn't curable, there is no treatment," and I said if she had a Personality Disorder that she did not need to be fixed - that it was more a characteristic of her personality if she was nitpicky (yet) and overly sensitive (yes).  She was a Cancer sun and a Cancer moon - combination rife with over-emotion.  I told her that I loved her, that she didn't need to be fixed.  I kept saying that.  I said I wanted her to get evaluated for memory issues and we would develop a plan.  That there was no "right answer" here.  That we would get her help and it would be alright.

She said her realtor was on the other line.  I told her I loved her.  And that was the end.

Thursday I got a box in the mail from my mom - the only thing I'd received in over a year.  No birthday gift or card last year, nothing at Christmas, nothing when I announced my pregnancy.  This box had our family photo albums and my baby things.  A couple of dresses that she kept saying she was going to send to me as well as some random clothing from her closet.  Shoes from when I was a kid.

Heartache and tears in a box, essentially.

I called after opening it, while sobbing openly on my way to get the rest of the mail (baby blues makes you cry at everything) and she didn't answer the phone.  I didn't know if she was at her appointment or not.  But I got no answer.  I had a feeling I should have called a welfare check on her right then and there.  But I didn't.  And now I know she died on Thursday.  I'm too scared to ask if they have any idea what time.  If there was a chance that she heard the phone ring and chose not to answer.  Or worse - if she could hear it while she was dying and couldn't answer me.

I am forever haunted by these thoughts.  I can't stop thinking about it.  It's all I can do to just get through my day without breaking down.  I have a 3 1/2 week old daughter to take care of and I can't focus on a damn thing.  I can't even focus on my precious girl.  I hate mom for doing this to me when she did, just after my baby was born and three days before Mothers' Day.  Way to fucking ruin it, Mom.  Half the family thinks you did it on purpose as a final "fuck you" directly to me.  But I know that it wasn't the case, I KNOW that it wasn't the case.  I know you thought you were helping me.  I know you thought it was best to do something while you felt you had the control to do so.  But I didn't get to say goodbye.  My daughter never got to meet you.  And now she's starting to look like you and I can't keep it together.  It's robbing her of real time and connection with me while I am still in "shock" and "denial" phases of this.

My sister is going to Colorado, as I am still in California and can't very well leave with an infant at home right now - either for me or for her or my husband.  It just wouldn't work.  But she is going to be dealing with her house and home.  She is going through her closet, through her shed, deciding what to keep and how the hell we'll keep it.  My dad is suggesting he move into her house and keep the dogs - and I can't let him live there.  I couldn't visit him knowing that my mother died there.  And I wouldn't be willing to deal with the haunting that would surely follow by allowing him to do it when I know how she felt about him in the end, haha.

I am mad that I can't be there.  I was the one who was so insistent for the past two years that she was sick, no one believed me, my sister didn't even believe me when I told her that last week that something was very wrong and she wasn't just trying to take attention away from me and the baby.  And now I can't help her when she really needs me to - I can't be there to put her things away, to make sure her ashes are spread with our dog Lucky's fur, or with my deceased sister's hair.  I know more details about her passing from the detective than I want to know.  And they haunt me.  All these things just terrify me and won't go away.  I am so mad that I can't be there to go through her closet and her bookshelf, even though she was such a heavy smoker that I likely couldn't keep anything anyway.  That I have to trust my sister not to ruin anything or trash things I would otherwise keep.

I am so angry.  I am so angry that I can't just do this one last thing for her.  I can't even be there for her fucking memorial because I live too far away.  It's just torture and it isn't fair.  It isn't fair!

I feel guilty for feeling like she sounded suicidal on Monday, when I had never heard her like that before.  But how was I supposed to know she was even capable of such a thing?  Or had thought about it for more than a few days?  I trusted her when she said she was going to the doctor.  Everything was riding on that doctor's appointment.  And I know she didn't go - her car, the one I called the tow for on Monday, was still in the shop on Friday when the cops came to my door.  The bill was paid - and she had no intention of picking it up.

My mother always said it was cruel to have children too close together because then your kids don't feel like they got "enough of mom" before the next one came to take their place on the lap.  She was very adamant about this.  You have to give your kids a chance to feel like they got enough of mom.  They have to be ready to be done with her before welcoming more babies.

I miss you, mom.  I need you.  I wasn't done with you yet.

So now what ... now I am still waiting for my MRI to evaluate my disease.  I am having MS hugs again.  My eyesight has gotten worse, confirmed yesterday, so new glasses it is.  I am changing my hair on Saturday because I have to be in control of something - and my hair usually gets beat up when I feel like this.  I don't know how to give my baby more of my heart because it feels so torn.  I am so distracted.  I feel like I'm robbing my daughter of my focus and attention because I can't stop thinking about this.  How can I?  I spent 28 years of my life in an abusive relationship with my mother - if I could turn it off, and go "no contact," even forced no contact like this, I would have fucking done it.  She's gone, and I still feel the guilt, and still feel lost.

Now the few friends who know that she passed occasionally ask me how I'm doing.  I want to be diplomatic and not sound too pathetic.  I say I am "surviving," "doing ok," can't bring myself to say my usual response of "hanging in there" because it feels like a goddamned trigger.  Which it is.  Everything around me feels like a trigger.  I thought my friend getting shot in the back of the head was the worst trauma I could experience - I was wrong, this is, the only thing worse than this is if something happens to my kid.

FUCK.

I don't want to be diplomatic about it more than I have to be, but it feels rude to tell people, "Oh, you know, my mother killed herself.  And I have to go back to work in a week because I'm fucking broke and because my daughter was 10 days overdue that means I only got 4 weeks with her, so I am far from being ready.  Oh, and my chronic disease is making me feel like my stomach is being turned inside out every few hours.  So, you know, I kinda feel like dying, because I can't handle all my responsibilities."  This was supposed to be a break that would allow me to focus on my kid and myself and healing.  And instead, I'm having to mix bereavement, distance estate finances, struggle to actually communicate with my sister because there is obvious tension, etc etc etc., all with maternity.

The cruel part is my sister is taking care of this, and it's appropriate because she is the older one of us.  But mom asked me to be her power of attorney.  I feel like I'm being robbed of these responsibilities.  It isn't my sister's fault.  She didn't do anything wrong.  I know she is stepping up now because she didn't when I kept asking her to while mom was living.  And I know she is feeling guilty and won't talk to me about it.  But I hate that I had to tell my sister, harshly, that she couldn't do this to me.  I had to explicitly tell my own sister that if she commits suicide, I would never forgive her.  How fucked up is this??

Wake me when this is all over.

MSminds Chat - 3/16/2016

I found another chat on Twitter today - this one is called MSminds! 
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)

Q1) Has MS had an affect on your mental health?

Yes and no.  I have always suffered from depression and anxiety, but it definitely has spikes.  It hit a huge peak right before my big flare that got me diagnosed.  However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation.  Saved me a lot of pain.

Q2) What has your experience of mental health support from healthcare professionals been like?

Surprisingly good, at least as far as my MS is concerned.  My first neurologist asked me if I wanted to be put on an anti-depressant.  It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety.  I initially said no - but knew that I needed to do something.  I told her, "Actually... actually yeah, yeah I do need an anti-depressant.  Thank you."  Best decision I ever made.

Q3) What do you do to boost your mood?

 I have started writing a "Positivity Blog," every single day.  I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow.  Really is starting to help.

I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."

Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?

My blog!  http://itoocanlovemyself.blogspot.com/

Q5) What more could be done to educate MSers about looking after their mental wellbeing?

Let them know that there is nothing scary about medicating for depression/anxiety/etc.  I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).


Thank you all, this is a really important topic!  I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan 

ChatMS 1/18/2016

Hello all!

I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California.  I don't have any issues with that, so I couldn't relate to any of the questions.

If you are affected by cold weather, please tell me your story!  In my case, I only notice issues when it gets above 95.

This week's ChatMS is another one on symptomology.  Please feel free to cut/paste the questions to put on your own blog.  Keep the conversation going!

Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?

Abso-freaking-lutely.  I can't even count on both hands the number of great nights of sleep I have had in the last few years.  Being pregnant compounds this, for sure!

Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?

Insomnia is the big one.  Mostly, when I wake during the night, I can't fall back asleep.  I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.

Q3: What symptoms do you experience that disrupt your sleeping habits?

See above - but I also have frequent urination, heartburn, nausea, dizziness.  Leg cramps!!!!  Not all the time, and thank goodness not all at once.  But these issues rear their ugly head on occasion and good luck sleeping through that.

Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?

Absolutely.  I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes.  I do not believe it contributes to my MS fatigue, which is a beast in and of itself.

Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?

Oh, the fatigue.  The fatigue, fatigue, fatigue.  Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.

I have had depression and anxiety for many years - since I was a pre-teen.  Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed.  It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up.  MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up."  It is a can NOT.  I can NOT get out of bed.  I can NOT get off the couch.  I am stuck right where I am.

I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed.  The next day I could not get out of bed.  I nearly wet the bed because of this fatigue.  I was sitting on my couch and felt what can only be described as a heaviness.  I couldn't get up to eat.  I couldn't pick up my computer or my phone.  I just sat there, at the mercy of my cats.  Exhausted, but not tired - I didn't sleep all day.  And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.

Q6: Have you talked to your neuro about your sleeping habits?

Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.

Q7: Are you on any meds to help you have a good nights rest? Which ones?

Nope.

Q8: If you have extreme insomnia what do you do to help you fall asleep?

Flip my pillow over.  Get up and go to the bathroom, roll my husband over so he'll stop snoring.  Read something very boring.  Climax.  Deep breathing, in through the nose and out through the mouth.  Clench all my muscles in systematic patterns and release.  I have yet to find the perfect cure to insomnia but I keep trying!

Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?

Keep a log of when you get up; maybe there is a cycle to it.  I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM.  If I get up at 3 AM, it's usually because of my cat because that's HIS cycle.  It might not help you fall back asleep right away but it's relatively amusing!  And know you aren't alone.  Keep a bottle of water by the bed and practice good breathing techniques. 

Chat MS - 11/23/2015

This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.

Remember to keep the conversation going and have a great Thanksgiving -

Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?

 Absolutely.  I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.

Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)

This biggest thing is that I have MS at all.  People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.'  This goes especially with my coworkers and bosses, because having MS makes me an ADA risk.  I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant.  I have not missed a day of work because of my MS in over 18 months.

I also struggle with telling people that I'm with about the possibility of my fatiguing quickly.  I have a relatively svelte figure, am tall and thin, and otherwise look healthy.  When I mention that I'm too tired to do something, I get a lot of eye rolls.  I look good on the outside, but on the inside, I'm struggling to stay alert.  This is really a hard thing to feel good about.

Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?

7 or 8.  I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.

Q4 – Are there situations or places you purposely avoid because of your anxiety?

Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it.  This happens a lot.  It's the most common issue I struggle with when I'm not having an active flare up.  I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue.  Pain free.  I miss those times.

Q5 – Have you discussed social anxiety with your neuro? What did they say?

Nah - it never really came up and I doubt he can do anything about it.  Unfortunately social anxiety is not like GAD and isn't really affected by medication.

Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?  

Abso-freaking-lutely.  All the time.  I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help.  I have this dream a lot, and it makes me think about it all day long.  I worry about my ability to get around.  I worry I will have a flare that affects my hands and I won't be able to work.  I worry I will be out with friends and will have to stop before they're ready to.

Q7 - What do you feel when you experience social anxiety?

I get quiet and I don't want to talk to anyone at all.  I'm not an easy crier but it makes me feel like I am about to flood the room.  My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.

Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?

The best thing is to spend time with people who are willing to ask questions.  Tell people you don't feel well.  But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.

Love to all - MSloan

MS, Real Life, Real Support, Real Fear

Did I say I was done for the night?  I lied.  I have another thing on my mind that is really grinding me.

Today I had lunch with my coworkers.  We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things.  It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.

I feel like that's how my illness is treated.  It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away.  My illness doesn't have me, but I own it.  I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer.  I am proud to be a relatively healthy voice for MS.  I am not ashamed of it.  But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it.  Because at the end of the day, no one wants to talk about it.

I talk about my MS at church a lot, because I feel like it's a safe place.  I can't be denied a calling because of my MS.  Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?

In my job, however, that is not the case.  We know full well what might happen to someone with MS.  I am an "ADA Risk," and many people might consider me unemployable.  So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job.  I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis.  It is scary, unfair, and makes me worry for my future.

Today at lunch, I felt more lonely than I've felt in a long time.  I'm pregnant without a mother.  My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it.  My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about.  He can't say much about it anyway, so I guess it is almost preferable.

But at work, it's more of the same.  More questions that make me feel like they think I'm faking a mythical issue from long ago.  A quick inquiry here, another there, but silence the rest of the time.  They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that.  When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.

No questions.  No real emotion.  Just surface, because it makes everyone uncomfortable.  I didn't tell anyone that I was dying, that I had cancer, that I was incurable.  I told them I couldn't feel my feet and it had implications about my stress level.  Hiding how I'm feeling only increases that.  Makes me feel self-conscious.  It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.

What I'm trying to say is, more concisely - this is a condition of loneliness.  Outside of other people with MS, it's impossible to describe how you're feeling.  Impossible to get other people to understand.  I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.

I know no one gets it.  I just ... wish they would ask.
MSloan

Trying to Heal

Hello!

Well, I feel somewhat obligated to update this.  Because we are so close to one year, it feels silly not to.

I have had a wretched last few days.  My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts.  She was taken to a hospital and spent 72 hours on mental watch.  I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.

I mean, come on, people.  My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday.  NOT A COINCIDENCE!

Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?

Love all!

Hits the Fan

Congrats, you are 1 year without another major flare!

You win:  One Institutionalized Mother!

How I Feel Today.

Please give a listen, love and thank you.
I need to get back into the music...

https://soundcloud.com/margo_aries/trouble-cat-stevens-cover