MS

Fatigue, Fantasies and Husbands

Posted on by tresswann

I fantasize about sleep.   I count days and hours until I can sleep.  I roll over in bed and think either this time tomorrow I’ll be sleeping or this time tomorrow I’ll be awake.    I have to get up for work some time between say 4:10 a.m. and 4:30 a.m. four mornings a week.  One of the effects of the condition I have is supposed to be fatigue.  However,   my doctors say with the hours I keep, who can tell?  I see their heads nod and eye droop when I describe my hours and my schedule.  They say anyone would be fatigued given that schedule.  And I am getting older.  It’s just a fact.  I have read that as we age, we need less sleep.  NOT!  Ok, so maybe we don’t need it to grow, that doesn’t mean our bodies and minds don’t want it.

I keep memories of a good sleep like notes on a good bottle of wine.  I still remember the sweet deepness of sleep the night of Hurricane Sandy.  I had one almost as good the night of a blizzard last month.

I guard my sleep ferociously.

I have been to the office only three times this month.  Yes, a few hours more sleep but much less walking.  Here’s my vicious cycle, the less I walk, the less I am able to walk.   We have been trying to compensate by having me do the stepper every night but still I have been coming in at most around 5,000 steps.  A normal day for me at work is over 7,000 and I used to get to 10,000 or more.    I did go into work this past Thursday and could barely walk.  It was bad.  My husband doesn’t understand that I just can’t stop when I am working remotely and do 15 minutes on the stepper. Plus, it’s not the same as walking.  I have tried to get in 30 active minutes a day.

Yesterday, we set up the treadmill upstairs.  My plan is to go on it in the morning when I drink my coffee.  We’ll see.    Yesterday I struggled to do 5 minutes on it.  My goal for today is 6 minutes.

Confession – I have been lax with my PT exercises.  I was really on it for awhile and then it just started fading away.  I was doing abs every night and then I fell.  It hurt too much.  I am hoping to start again this evening.

Cut to last night.  3:50 a.m.  Husband gets up.  “I have been thinking and I have decided”.  This is when I call him Jack because he sounds just like his father.  ” You know I dream things through, you know how I used to help you with your exercises?  Well, I really can’t now because of the operation”.  Then he went through all the exercises I am supposed to do and what he could or could not do.  Told me I couldn’t do 10,000 steps today as I had only done 3500 yesterday but I would do 6000 today.  I would do the PT twice on weekends but not during the week as I certainly can’t get up before 4.  And maybe, he will create a spreadsheet to track everything.  Now I know he’s talking in his sleep because spreadsheet is not a word he uses.  He has the remarkable ability to have complete literate conversations when he is completely asleep.   And I am looking at the clock thinking “this time tomorrow I will have 20 minutes more to sleep”.  I can’t hit him because of the operation.  I drifted off.  This morning he has a vague recollection of the whole thing but says it goes to show I am always thinking about you.

Valentines and Visions

Posted on by tresswann

Last night I was in the recovery room as my husband was coming out of anesthesia, he looked at me and smiled and said “I am glad.  We have been through so much and we are still here”.  And it’s true.  We have been married for a little over 10 years and known each other for 12.  Sometimes, we joke that we have been through more in our short time together than most couples in years of marriage.

I was thinking about that last night.  We have been through quite a bit.  Literally, a year after we met my father died suddenly and unexpectedly.  I was left with a mother who was in a financial mess, had dementia, though I wasn’t acknowledging it at the time and an abusive brother.  A week after my father’s funeral, my husband (we were not married at the time) was arrested at my mother’s house on old charges.  This was in the beginning of November.  In mid-December, I went for my mammogram and they found a lump in my breast.  He was still in jail, my mother was shattered. It was a false alarm.  T was released from jail at the end of January.  My brother was taking things from my mother and making abusive and threatening calls to me.  I obtained a temporary stay away.  On April 1,(not an April fool’s as some would have it)  I was told my job was being terminated.  I was relieved but I was financially responsible for my mother’s household.   T and I started going in and out of court fighting with his ex-wife over myriad issues.  Little did I know that I was about to become a regular at court, so much so that the court officers recognized me! We married. I got another job, a very good one as corporate training manager for a major retailer.  During this period,  my mother would call with problems and I would ask her if my brother couldn’t help and I was told “oh but your brother has a job and works”  Uh, he’s  a truck driver?  This put enormous strain on us.  My previous (and current employer) called and asked if I could do a project, so I started doing two jobs.  The day after I told them, it was too much for me, the retailer filed for bankruptcy and I lost my job – two in a year!   My friends teased me that I was off for the summer again!

Nightmare time.  I called my mother in the morning and she didn’t answer.  Drove over thinking she had left phone off hook or was confused because by now she had been diagnosed with dementia.  I found her on the floor with a broken leg.  Due to different factors, they couldn’t operate on her for three days nor give her painkillers.  My brother went to work.  Husband stayed with me as they operated.  Brother threatened me in nursing home when she was in recovery and nursing home went along with him.  Husband was besides himself.  We had to sell my mother’s house whilst she was alive.  You know how hard it is to dissolve your childhood home after your parents die?  Picture doing it when one of them is still alive.

The summer I lost my first job was when I had my first incident.  I was walking on the beach boardwalk and couldn’t.  Fast forward a couple of years and continued odd incidents and the doctors started.  I received my diagnosis after an inconclusive spinal tap.  Like my husband told them, when you don’t know what to call it, this is what you call it.

After I sold my mother’s house we bought a house less than 6 months later.  See, the pattern, stress and more stress.  And boys totaling cars.  The youngest did two in 24 hours.  And boys in emergency rooms…

My mum died.  What is important is that we had not been together that long. We were still in court with his ex and now also because of our issues. My husband has always had alcohol problems.  My diagnosis, death and finances set him off and we entered a series of rehab and relapse.

He was diagnosed with prostate cancer.   There were complications.

Everyone told me from when our problems started that I needed to cut my losses.  The courts, the counselors, my friends said the odds were clearly against us.  And through out all of this, I had  this vision of the two of us walking out together, arm in arm, beating the odds.  Well, it took longer than I thought or wanted.  We came through.

The last time he had an operation, I walked out on him.  Yesterday, I was there the whole time.  We are truly partners.

So, visions.  I told T last week that just as I had this vision of the two of us beating the odds,  I am picturing myself walking again, arm in arm on the beach, wearing the clothes I love, dancing, doing the things I love, no limits, no boundaries.  It’s just this vision that I am keeping in my head.

Valentines and visions.  Love.  I believe that is the root of what brought us through.  And I am going to make my new vision real.  It may not happen when I want it to happen but it will happen.

Not Inspiring

Posted on by tresswann

Ok, so I use the spectral leg and a cane, a very pretty one at that.  I work in New York City and commute every day.  I wake a little after 4 in the morning and am at my desk, smiling by 7:30 in the morning.  What most people do not see is the struggle sometimes to make that walk into the office.  I count that as one of the upsides of early.

I try and go to Zumba two nights a week.  It’s a class I have been going  to for several years.  And yes,  I have been able to do less and less.  But I still go. The music connects me with my mother and my family.  We played some of those songs when I was growing up.  And as a family, we always danced.

I am a person.  I am not a condition or an illness.

I hate it when people tell me I am inspiring.  With one major exception,  which I will discuss in a moment.

I hate when people say ” I don’t see how you do it.”  Again, it’s my life.  What am  I going to do, crawl into a cave of illness and defeat?  Why wouldn’t I do it?  Where is self-pity going to get me? It’s not going to help or make things better.  Ditto the “you are so brave”.  Why?  If I don’t wake up in the morning and go, what is there?  I am not brave, I am freaking terrified.  In terms of bravery there is so much more in this world to be brave about other than living a quotidian life.  I belonged to a group when this journey started and one of the women had a granddaughter who was 9 and had something wrong with her ankles.  If I remember correctly, they were disintegrating.  That’s brave.  Her family was brave and strong.  Me, getting up and living my life is not brave.

I always try and tell people when they tell me I am inspiring that I am not.  I do not live nor wish to live a poster child life.   This is my life and my reality.

Ok, there is one instance where I don’t mind as much about the inspiration thing. Yes, you  Jessica Campbell.  Check out her blog MS and Fabulous.  When it comes from someone who is going through what you are going through then it’s alright.  I am awed by Jessica.  There are people who confront these issues daily with style and true grace.  They are inspiring.  I am honored to even be thought of in that company.

I appreciate all my friends who support me and encourage me.  I am grateful for them.  I guess it’s the “outsiders” who consider my daily life inspiring.  It is not.  Choosing to live with a little mobility issue is not inspiring!

We all have issues that we confront. The ones I confront may just be more visually apparent.  And who knows?  My challenges may be so much less than what they appear.

February Warrior Check In

Posted on by tresswann

Back for February:

How do I feel today – Still in the winter blues.  I have been doing a lot of work.  It’s  a mixed feeling.  I enjoy what I do but I am working flat out.  This is my 13th straight day.  I don’t think I am getting the validation  I want.  Is that important enough?  And I watched the last episode of Parenthood and wailed.  All the possibilities that life could have.  Could have, would have, should have.  There’s just the now.  And it is finite.  That milestone looms and is dragging me down.

What did you do for yourself today?   Not much.  I worked which in a twisted way is for me.  I need to get away from that because seriously, in the past giving my all to someone else has never worked for me.

What did I eat today and how did it make me feel – Well it was mixed and I really didn’t do well.  I started off with an apple streusel (non gluten muffin)  I had some nuts.  I made a pina colada smoothie.  It tasted like a pina colada and I can’t stand pina coladas!  But for dinner I had steak with my husband.  I don’t like steak particularly and it’s so not on Swank.  I made some great mango sorbet.

Did I exercise? What did I do? How did it feel – Well, this hasn’t been a banner week or month.  I have literally been housebound and working 10 hours a day.  Today I did the stepper for 45 minutes.  Not enough.  I have been spotty on the abs and I have not been to the gym or Zumba.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry.  I have a job.  I have possibilities.  I have people who love and care for me.  Same as last month.  This month I am thinking of my husband and how he stands by me.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Ha,  higher purpose is for childish dreams.  Still thinking about a mission. Driving force in my life is to be remembered, to live after I die through love?

How long have I been treated with conventional medicine Not this month but I read about glutathione and I am thinking about it.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Lot of pressure on the job.  Finance has eased a bit with the ridiculous hours.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month.  I still have new days.

Until next month.

Serious Stomach Stress and Sabotage

Posted on by tresswann

My first marriage was to a man, who although pleasant, had less financial sense than a 5 year old.  This wasn’t just me – his own mother was relieved we were marrying so I could take care of him.  I had lost my job and had started a business using my savings and unemployment.  He basically made less working than I did on unemployment. His idea – play Lotto.  He bought the you gotta be in it to win it ad.

Yup,  I had massive credit card debt.  One month, the bills came in, I literally doubled over and could not stand up.  I had massive pain in my stomach.  It took about two days till I could stand, do anything and of course, pay those bills.  The second month it happened, I figured out the trend.  It continued thereafter.  Usually, I could stand but could not do much of anything else.  It’s hard to read or think when you are in pain.  The marriage ended.  I cleared up the debt and it basically went away.  However, anytime I was in a stressful situation, it came back.  Mercifully, the duration was only a few hours and I have found that tea and warmth around my stomach help.

My last real bout of this was 10 years ago or so when my life started falling apart or changing.  I was seeing a counselor at the time and did manage to show up for an appointment in distress.  She suggested it could be irritable bowel or colitis.  Before I could go to the doctor, I was laid off. As I told the man who let me go “Thank you.  Summer on the beach with shells in my hair”.  No more stomach problems.

Periodically, about once a year or so, I get an “attack”, usually short-lived.

I am so much more than the condition(s) that are afflicting me.  Most times, I forget until I try to stand up or walk.   Right now, I am involved in projects at my job that not only do I enjoy but are high profile.  I do have a meeting scheduled with the top guy to present my work. I have noticed through out my working life that if things are going well or have the potential to go well, I get sick, typically a respiratory thing and/or fever.  I have never taken a final in high school or college without a fever.  I closed on my mother’s house and walked out of the offices with a 102 fever and had to go to bed for a few days.  My body knows.  So, I am working away on this presentation and putting in major time.  It’s the reason I haven’t blogged.  I felt prepared and rather calm.  Then I had two meetings and need to do more work.  Not a problem.  I have been house bound due to the weather.  Oh yeah, the other night, whammo!  My stomach thing hit full force.  I was grey, perspiring, in intense pain, the kind where every time you move and every way you move, hurts.  I knew exactly where it was coming from.  My body was telling me that I could not move forward and do this.  I couldn’t work.  I couldn’t think, I couldn’t sleep.  Taking deep breaths hurt!  3 a.m. found me panting.  My brain struggled through to my body and said Enough!  I am approaching a milestone age which has been weighing on me.  There are things I want to accomplish with my life.  It’s time for me to deal with it and realize what’s left of my potential.  I woke the next morning and started going for it.  As I write this my stomach is twinging but I am writing and working.  I am not going to let my body continue to sabotage me.  And isn’t that what part of this condition is?  My body literally not allowing me to move forward?  When I was in counseling during that bad time, the counselor said when you get upset you let your feet out from under you.  I am not saying that what’s happening with me is psychosomatic.  It isn’t but I am also saying the mind/body connection is a powerful one.

And as I said when I started this unforeseen journey, I will overcome.  I will rise.  It will be different.

Vanity, the Spectral Leg and Vows

Posted on by tresswann

cropped-shoe-with-brace.jpgI have always been consumed with the way I looked.  I joke “Clothing is my life”.  I can look at a picture and know by the clothes I was wearing what was going on.  It’s how I express myself.  For example, at a certain period in my life, if I was wearing pants to work, it meant I was unhappy and didn’t want to be at that job.

I grew up in a household where “ladies didn’t wear trousers”.

And I was/am a dress and heels kind of woman.  People would say Oh we are getting older now we don’t need to wear heels.  Or isn’t it wonderful that flats are in fashion.  NOT.

I used to walk a 15 – 17 minute mile.

When I went to get fitted for the spectral leg as I call my brace or as the doctor calls it my appliance, the ortho guy told me I would never wear a skirt or heels again and I would have one on both legs and probably my hands.  Can I tell you I will never go to that man again or recommend him?

I still have only one spectral leg which I am actively looking to ditch.  I do still wear skirts and therein is the problem.  I used to take the spectral leg off at work and wear reasonable kitten heels or flats.  Somewhere along the line, I began to fear and kept the spectral on all day.  I had some relatively cute black lace oxfords for summer.  I bought a sensible pair of black oxfords in the fall.  Doesn’t that sound awful – sensible black oxfords?  And I bought some wonderful clothes – beautiful sheath dresses, a skirt with panels.  They look great when I am seated or when I am behind something but the full length?  It’s horrid. It makes me feel really old and ugly.

This is bad for my health, seriously.  My image is intrinsically part of who I am and if I am feeling old and ugly, it’s not good.  I don’t want to hear the nonsense about blah, blah well you are lucky you can still walk.  Uh, I get that but there’s more to me.  And I said when this whole thing started I wasn’t going to let it define me and those freaking shoes do.

So, I keep on looking for something that will be less obtrusive.  Mail order hasn’t been working.  Today we went to Lord and Taylor, one of my favorite stores.  Major shoe sale.  My husband says let’s try it, It’s the first time I have tried to try on shoes in public.  The spectral leg just hung out.  I tried to try on three pairs of shoes.  It did not go well.  And then my husband put the appliance back in the sneaker (it’s the weekend) tied my shoe and covered my leg with my pants.  The salesgirl (she was young) just stood there and said “Wow, till death do us part and all”.  I said “Things happen and life keeps on changing.”  It’s one of my mottos.

But this is not the life we thought about.

We have been through a lot together, sometimes me, sometimes him.  Who knew those vows really meant something?  I am amazed and grateful that we are doing the “in sickness and in health”.  They are not just words.  They are our reality.

One of my doctors said she had noticed a spiritual evolution in me.  I don’t see it.  But there are moments like today with my husband on his knees in a department store helping me that I know grace.

Drinking the Kool Aid

Posted on by tresswann

My old manager always said when someone bought into something that they had drunk the Kool-Aid.  It wasn’t necessarily a good thing.  It was definitely an illusion to Jonestown and he didn’t mean it positively.

Oh, and he never said that about me.

I am not a Kool Aid drinker.  When I was little and everyone had birthday parties with Kool Aid, I didn’t drink it.  I am told it made me sick.  My mother, who was very advanced for her time, didn’t believe in it.  No sugary drinks for us.  I didn’t drink soda till junior high.  I digress.  This is about Kool Aid.  Well, not really. It’s about buying into something whole heartedly.  I don’t think I ever do.

I have written about my mother and her force and determination.  Well, my Dad was a non-Kool Aid drinker.  He was always skeptical about everything.  He always took a step back.  It was something we argued about.

However,  I never ran with the pack or the clique.  My mother used to say that I conformed to non-conformity. I probably still do.  I pick and I choose.

That’s what I am doing with this food thing.  Picking and choosing.  After all, I am the editor’s daughter.  In addition to writing, he was an editor. I know I edit.

And I don’t commit.  It’s my failing.  I have had more than one manager at work who has said if I ever committed I would be frightening.  And as to relationships…….  My sister friends I commit to with a fierce loyalty.  For them I would drink the Kool Aid and I do drink the Kool Aid of friendship.  Men were another story.

So, where does this leave me?  Do I drink the Kool Aid of this way of eating?  Can I drink it?  Maybe Kool Aid isn’t right for me?

I read all these people that are drinking it and getting personally filtered water and questioning everything they eat.  Have you ever been out to eat with one of those people who question the wait staff?  And then basically want it cooked without anything?    Like why bother to go out to eat?  I think that makes it uncomfortable for everyone. But the people who succeed appear to be fanatic.  I was raised in a household where fanaticism was antithetical to our being.  Also, funny enough, I am a Libra.  Whilst I may not buy into the whole astrology thing (there goes the Kool Aid again) I need balance.  To be that extreme, puts me out of balance.

What I do need to do is finally, ultimately commit to me.  If I make that leap then I can eat the way that will help me. I can rise.

.

What would Reima Do?

Posted on by tresswann

REIMA 1940'S - 50'S

Reima was my mother. I am literally her pale shadow. One of the things I am deeply grateful for is that my mother passed away before she could see me like this. Two of my mother’s best friends at different times had MS and they both died. In fact, one of my earliest memories is walking with my mother and her friend and a stroller. I don’t think it was for me and there were two little brothers. I am not sure which one it might have been for. I was very, very little. Her friend had an attack and Reima had her walk with the stroller. Looking back on it, it must have been terrifying for all of them. They were young, alone with anywhere from 2 -4 little kids. She got worse and died before I was 10. We moved and there was a friend on our block. She became wheelchair bound quickly. She, too, died from this. So, when they told me that this wouldn’t kill me, I wasn’t buying any part of it.

More about Reima – she had a very high tolerance for pain. She thought childbirth was vastly overrated. She used to get her teeth drilled without anything. She maintained the same weight for just about her whole life – 7 pounds more than before she became pregnant with me. She made sure that she weighed the same every year when she went to the doctor. When she decided to quit smoking, she just stopped and yes, she didn’t gain an ounce! When she made up her mind to do something, she just did it. She came to this country essentially by herself because she wanted to.

So if my mother Reima was confronted with this and knew that it could be addressed with not having certain foods, it would have been done immediately, no question, no hesitation. And then there’s me. I want to, I need to and I am not. Well, I gave up gluten. I no longer have yogurt. Practically no eggs. Almost no red meat, never really been my thing. But no beans, no soy, no apples, no bananas (depending on who you read) no eggplant, tomato, maybe corn, no shellfish.   I like fish and chicken. I like grilled things. Reima didn’t believe in deep frying. She was way in advance of her time in terms of food.

So, I need to think what would Reima do and do it.

Working and 9 Cups

Posted on by tresswann

I am taking elements from all the different ways of eating I have been exploring: Wahls, Swank, Clean Cuisine, MS Diet. I am trying to take the best of everything and maybe create something will work for me and on me. Well, I really like the concepts of 9 cups of fruits and vegetables a day. However, another thing I have noticed (and I am truly grateful this does not apply to me) is that these people were so disabled they could not work.   I work. I wake around 4 a.m. every morning, commute close to two hours each way and though I tend to demur, some people say I have a pretty high powered job. So, back to the 9 cups. Yesterday, Sunday, I set up some smoothies in advance. Smoothies are a great way to get in vegetables, fruits and nutrients. There is one I adore from Sparkpeople that sets me up for four cups – two cups of kale, one cup of blueberries and a banana. As I mentioned earlier, I wake around 4 a.m. I am a morning person. Most mornings I wake with a smile, literally. I am one of those people, people hate in the morning. I will beam and tell you we are going to have a great day. I can do this without coffee. I prefer coffee. However, cheerful and all does not do blender in the morning, even weekend later mornings. So, I thought I’d set myself up for success this week by making a few yesterday. It took nearly an hour! Oh, and by the way, I am a good cook so I know how to do my mise en place etc. Back to 9 so I am going to work, no private office, lots of meeting, interaction and commuting. There are logistics involved here.

I do have issues so there is literally only so much I can physically take into work with me. There is that long commute, most of it on public transport. Therefore, I am not using the public facilities. I have to time this!

Next is prep. Uh, my energy is kinda limited. My husband helps but.. And then actually eating all this. And it’s not the only thing I need to eat.

So how do you eat this healthily and correctly and hold down a job without lots of help? I know I have to focus on my health but work too and uh, yea, that exercise thing and getting enough sleep?   Just sayin’

Bananas, really?

Posted on by tresswann

Who would have thought that bananas are my new savior? As a child, I couldn’t stand them. I was not really allowed not to eat food but I stood my ground with bananas. Never on breakfast cereal. I was the little girl who adored stewed prunes. Being West Indian, we made fritters. Those I liked. Banana bread, not so much. It was barely tolerable. And Grandma used to make more of a baked fritter, dense and with raisins. Oh and baked with a little orange juice and brown sugar, a nice treat.

As an adult living on my own, I NEVER bought bananas.

Then a few years ago as this journey started, I felt I had to eat them for the potassium. Plus my husband will eat them. So, I started to eat them. A man at work started leaving them on my desk. I started losing a little weight. They were a necessary evil.

Then with this new way of eating came the smoothie and getting rid of sugar. The banana makes it possible! Who knew? It adds creaminess and sweetness to the smoothies. I feel full and want less sugar. I freaking crave this.

I did read in one of the Healing books – no bananas. What? I cannot see this working out. So I am continuing with my bananas, disguised of course!