Holiday season with Chronic Illness

Oh, how to begin, the good, the bad and the ugly says it all.  Great movie too.

My heart was overwhelmed being with my kids and new addition - semi daughter in-law - they aren't married but together for so long now we included her in our small family gathering.

The bad - the driving and the drama of family - outside immediate - and how hard it is to make everyone happy and comfortable and pretend you aren't hurting.

My husband's family was so great - I kept getting up to play with the little one's and my father-in-law kept putting me back to the couch to rest. 

The ugly - the aftermath and stress let down increase in pain that left me nearly paralyzed.  Kind of did also the week before.

I have been going back and forth between deep sorrow and crying and deep anger at things that are out of my control.  Working with my therapist and have my anti-anxiety medication but best tip from therapist and neurologist is to stay away from people that aggravate that part of me.  Hard to do - well I'm sad because I get lonely and I get angry that people aren't there for me in the way I want them to be.  And how hard it all is on my husband too.

And people I don't want to push away either.  I have to learn to accept people for who they are but it's difficult.  Then work adds another loss - and anger.

Then I hear horrible things that my ex-husband is doing and saying to my kids and that's hurt because I want to care for my kids and not have them have to deal with that crap and deep anger at the things he's doing and saying which I have to hold back around my kids.  Well, somewhat - I have to hold back the anger, but I also have to show them the right way. 

I pray for guidance on this issue especially!!!  I wish I had the means to protect them but with my disabilities that has been taken away - at least financially - and also being able to be there when I can't because I'm sick.

So, Good, Bad, and Ugly -

Tomorrow I go in for my first Botox treatment for my transcendent intractable chronic migraine.  They say it will hurt really bad and have given me medication to dope me up and topical anesthetic to put on before appointment - have to have help with that.  And have to have a driver.  They also said it would take 4-5 treatments to know if it will help or not - because of my condition.  And I change insurance companies January 1st so hopefully the new one will agree to the continued treatment and I don't only get the one trial.

Every year this season is so difficult as I am certain it is for many of you.  Even going to family events - my family is large - and still people wear perfumes, etc that make things worse.

I had some wonderful times - also including my son's 22nd birthday on the 21st of December which was really nice and we had a good time - went to dinner (very infrequently for me) and I did good - we stayed relaxed and spent time together.  He was happy.

Included in happy times and amongst my husband's wonderful gifts to me was so special - he's an artist - and he carved this balloon man for me!  Sorry the picture is a bit fuzzy but I have tremors and it's the best I can do.  Behind it you can't see is a flower pot but inside is a present from long ago he gave me - it's a metal sculpture of a flower - maybe a picture of that later.

I will leave you with this - as my eldest son left on Christmas day he stopped and said "Thank you for... for just being you."  What better present is there?

I wish you all the best and health and love and happiness.

Elizabeth

copyright Elizabeth Wakefield December 27, 2010

The Strong One, The Survivor - BEWARE DIFFICULT INFO IN BEGINNING

All my life since I can remember, I was told what distinguished me from my brothers and sisters and cousins and even aunts and uncles - I was the strong one, I was a survivor.  

I as a child endured a some horrible events.  It's hard to talk about, but I will very briefly state so that we can move on to how this vision of me by family and friends now greatly affects my disability.

I don't wish to go into details, but I will state that 1) I was sexually abused for 4 years by my step grandfather; 2) my mother which whom I lived had to work more than one job to take care of us and was difficult in the 70s - a baby sitter she hired sexually abused me - it was about a year into the other sexual abuse so I felt no where to turn; 3) my mother is bipolar and is incredible now, but as a child I dealt with her mania and depression and even her being in intensive care more than once and aunts/uncles and mostly my grandmother coming to be with us; 4) as a child I overheard my mother describing a brutal rape she endured at knife point by two assailants - I was supposed to be in bed.

As many children do I didn't come forward in a normal way about my abuse.  I told a friend at school immediately who told me that it happens to everyone and your not supposed to tell - we were children - and I see now she was being abused too.  After a year I told my older sister who told me not to tell anyone because it would upset my dad's new marriage but that if it kept on to tell her again.  I went into a shell.  For some reason after 4 years - my older sister now 16 and had stopped seeing my dad for a number of years so had not happened to her but very few times years before - anyway, I for some reason in the back of my mom's car on the way to the movies said to my sister "you know years ago when you said if something happened again I should tell you?  Well it hasn't stopped and been going on ever since."  She turned and said to my mother what I was talking about and then it was out of my hands.  My mother didn't go into the movies with us but spent time outside on the payphone.  By this time we lived far away.  Next I knew my mother had somehow gotten him off the streets as a mail carrier (through a friend of hers also in the post office) and we were going to court.  I must say that the nonhuman male when arrested admitted freely to the officer before the officer even said why he was there!?

So, because I was the strong one - being that my sister broke down and cried and cried and took the attention away from me - and I tried to be strong - my family decided I wouldn't testify - only my sister.  I, ironically, was in the care of his daughter - my stepmother - who was very angry at me for us being there and let it be known it was my fault.  

The outcome was the outcome, and not as harsh as my sister as I said was then 16 and didn't look like a child at all.  So, he was out to injure again, not me, but others and was on trial for those later.  My father decided to (because of my stepmother?) forgive him.  And I spent time as a teenager and later as an adult having to come into contact with him - no more.  And not EVER my sister.  It is what it is.

So, why do I say this was part of the start of it?  Well, it wasn't the start - even before this as a small child, I was told I was the strong one and would be able to handle anything.  This enhanced this feeling - I was told I was the strong one and a survivor while my sister couldn't handle it.  She needed help, but I could overcome.

This moves us forward a bit to a rough teenager I was, MESSED UP, but not in my family's eyes.  I would get through and I was strong and would overcome because I am a survivor.  Well, my messed up days ended with me making a horrible decision to come into a relationship with a man 26 while I was 16.  I became pregnant.  He was thrilled and wanted to marry me.  I said no.  Then, my sister, who was 20 became pregnant herself and my family decided that they needed to take care of my sister while I was strong and a survivor so my mother arranged my marriage within a week and then I was married.  I had a second child with my husband.  I WILL NEVER REGRET THOSE INCREDIBLE CHILDREN WHO ARE MY SOUL AND JOY AND HELPED KEEP ME STRONG.

Well, I can tell you this - although we are no longer together and I do not have good things to say about him - I am strong and I am a survivor.  As much as it hurts, they were right.  As I was going to college and getting older and smarter, this was bad in my now ex-husband's mind because I was quickly becoming smarter and more wise than he.  Abuse - whatever - we should have seen that coming with a 16 girl and 26 year old man.

I asked for a separation as I kept becoming more and more aware that I was better than this.  As a Catholic, I did not seek divorce, but he did and we were.  Because I am strong and a survivor I did make it through.

I can go through my ENTIRE life years after this during which times I had difficult times as I was only still 22 at divorce and am now almost 40, and did have MANY more times of difficulty and tragedy and was even myself a victim of rape.  But the importance of all is that I became the first of generation of the family to graduate college and get a good job and be successful at it - even very as I became a specialist in difficult areas.  I was strong and I did survive.  I did so mainly by my own means as my family gave me support in the manner of "rah, rah" talks, "you can do it," "you're the strong one" talks.  Very important, yes, and very helpful, yes.  They supported me by inspirational talks about how strong I was and how I was stronger than others and I could do it.  They were right.

In the meantime, and still, other members of my family, didn't get this kind of inspirational "go do it" talk.  They got "oh poor you" and financial assistance and all that jazz.  When I asked for help in this way, no, I got - You are strong and a survivor and YOU will make it.  They were right.

Let me say CLEARLY here that my now husband - INCREDIBLE - was not like this.  He told me I was strong, yes, but he comforted me and HE TOOK CARE OF ME and STILL DOES.  He goes FAR out of his way to do so.  His family is much the same towards me.  They also see me as very strong, but they also give me comfort.  Yes, inspirational too, but comfort and help.

Let me also say that I have friends that are the same.  I have friends that treat me as my family does and friends that are comforting and helpful.

LET ME ALSO BE CLEAR - MY FAMILY LOVES ME (and not all of my family is "inspirational talk only" by far as I have a vast family) - MY FAMILY WOULD GO TO THE ENDS OF THE EARTH FOR ME IF NEEDED WITHOUT QUESTION THEY WOULD WALK THROUGH FIRE!!!  I am NOT putting them down here - I am merely stating that some members of my family - a lot of them - see me as SO strong and such a survivor that if I am at my wit's end that the strength will boil up and I will overcome.  AND THEY ARE RIGHT so much of the time.  While others falter and lean on others, I do stand strong.  AND I AM PROUD OF THAT!!!

So, here we are, and my disabilities have put me into a very bad spot.  I am the Strong One, I am the Survivor.  I Shall overcome.  Well, as many of us with chronic illnesses know, there is no cure.  There is not cure for any of my disabilities in fact - they are hormonal or neurological problems for which there is not cure.

That of course does not mean that we cannot live a good and fruitful life.  We have to MANAGE our disabilities.  Unfortunately for me, recently - over the last few years, my disabilities have become debilitating.  So much so that I am now on disability from work.  Which is so sad and hurts.

I appreciate everyone of my family who is inspirational to me telling me I am strong and a survivor and will overcome.

I am appreciative of all of my friends who are the same.

I have had a hard time with some who see me as the strong one and the survivor believing that my disabilities will not be CURED.  That I will not overcome and be back to me the way I was before.  Because of this, and because of my constant pain and difficulties, I have had as MANY OF YOU HAVE had to endure LONELINESS as people draw away.  As people want the "old me" and don't like dealing with the "new me" - even when the "new me" tries so hard to hide my disabilities - although some cannot.  They don't want to talk about it - they just want the old me and are sure that I will with doctors overcome and be back.  It's like they feel like I'm not being me because I cannot be strong all the time and get the feeling and even have heard that if I just TRY HARDER I will overcome.

We all go through this - we all talk about it and listen to helpful accounts and suggestions in conferences during Invisible Illness Week.  These ARE so helpful.  (by the way this past September's and even older year's "conferences" can be accessed as I do and listen again to helpful tips at http://www.invisibleillnessweek.com at the virtual conference tab.)  

I am the Strong one and I am the Survivor.

Here now is the rub - the GIST.  Although all this is true, I NEED HELP SOMETIMES.  I AM LONELY.  I FEEL GREAT LOSS.  I NEED HELP SOMETIMES!!!

I have asked for help from those who see only the Strong One, the Survivor, and they say yes, of course.  And when the help comes, it is in the form of not what I requested, but an inspirational speech of how I will overcome this and how strong I am and I will get better and just have to believe it, etc...  I have broken down and cried and asked for specific help and I get much the same.  Now, I do get rides when I need them and help and support.  Which I love.  But sometimes you just need HELP!

I am the Strong one, I am a Survivor.  And as my grandmother said "This Too Shall Pass" and I will have better days and I will cope and will find my way back to a better life.

Right now, I am sad - I am in mourning.  I go from deep sorrow to anger to determination to overcome and back again.

I ask my husband to help and he drops everything and does anything for me.  He gets it!!! You know?

I have family members and friends that I can go to and talk with and they listen through it all and don't try to tell me I'm overreacting or need to be strong.  They are just there for me.  I have friends that although it's difficult with their busy lives, come over and spend what time they can with me.

But it has been ingrained in me that I am the Strong one, the Survivor.  So, I don't ask them to help me with dishes or the laundry or shopping for the holidays or the many things I need help with.  Because I have bought into what has been told to me all my life.  That I can do it.

An example, I had a medical bill from the early 90's when I was uninsured for a non-voluntary admission to the psych ward.  Later, when they figured out it was my thyroid that was causing the symptoms, all that disappeared.  Anyway, I didn't have the means to pay.  And I was a bit angry because I hadn't asked to be in the hospital.  Well, years past and it ended up going to a law firm for collection and I was sued and lost but remained unpaid.  Interest and other grew on it but I couldn't get it paid with other bills, kids, etc...  In October of this year, I received a letter that I must appear in court in November to give financial information and the judge stated "it will be no undue hardship on Elizabeth to appear."  Well, little did he know - I couldn't drive, I with my migraine would not be able to handle, NCS would cause me to faint, driving with my Essential Tremor was a bad idea, my husband worked that day - really he works everyday - and with constant migraine, narcolepsy and medications - I wouldn't make much sense.  AND - I was on disability so the financial information they were asking for wouldn't show my true financial state.  I asked a family member to help me.  This person came to my house and gave me a go-get 'em speech but said that would help me get an attorney to appear for me or would appear themselves on my behalf and not to worry.  So I didn't.  Then, came two days before the court appearance and nothing had been done to help me - and the day before when asked by my husband was "she's strong, she can handle it."  Well, as it turns out, no I didn't go to court because I couldn't - but I AM STRONG and my inner strength and adrenaline drew up from me and I called the law firm and took care of it - even got all the interest removed.  I took a distribution from my 401K and got it paid and no court date.  I did this myself.

What happened?  Well, I did it - I was strong and I did it - I also because of the adrenaline, suffered from worse pain for the next 4 days.  I truly needed help, but in the end I did it with my strength.

Which is why I say I do buy into it.  I don't ask for much of anything anymore.  I do hear a lot of "if you need anything, let me know" and I lay my burden on myself and mostly my husband - poor thing.

What I want desperately to hear is not "if you need anything, let me know" - but someone to specifically offer something specific that is help for me.  SPECIFIC - not the line that makes me feel bad if I do call and ask for something.  I've heard this same thing during the invisible illness week conference - so I KNOW that many of you that suffer chronic illness deal with the same thing.

I know also that strange as it may seem, that so many of us with chronic illnesses ALSO are incredibly strong people - we even feel badly asking for help.

So, I think I am not alone in the Strong one image, the Survivor image - and it is so hard to ask for help - especially when it is returned with an inspirational speech rather than the help you asked for.

I think that many are in worse shape than I am.  My children are grown - or nearly - my youngest a senior in high school - so I don't have issues of needing rides to or pick ups from soccer or whatever.  Or babysitting, or whatever.  I also am not in school anymore so I don't need the help dealing with exam weeks or studying.  I am not single and have such a loving and supportive husband so I don't have those issues - although the burden on him is also growing and heavy - and HE TOO doesn't ask for help EVEN FROM ME!  He needs help too.

I don't know how to end this - I've given some background that is really private and please don't feel bad about that - I could give other background that is horrible as well - my father not being in my life but being in my siblings lives which I don't understand what I have done to have him single me out.  A second horrible ending marriage (cheater) which nearly destroyed me.

I have been strong and I have survived and I became a very strong and successful individual.  But then the disabilities took hold and I can't fight them they way I fought through and overcame other things.  In fact, the more I fight, the worse it gets.  I want my life back too - but I need to find a new way to be strong and survive and a new me.  Right now it's hard to see me through the pain, but I don't give up ever.  I am strong and I am a survivor - that is true.

I guess all I can say is that my family - my grandmother, my mother - saw something in me as a very young child that is true.  How they saw it, I don't know - I think my grandmother and mother were in the former and is in the latter both INCREDIBLY STRONG women during even difficult times for women and even now my mother is a force of nature.  She battles her own demons and she survives and she is SO STRONG.  My grandmother was the strongest women I ever met.


It started with them seeing in me what was in them.  I am like them and I am proud of that.  I am Strong and I am a Survivor. 

I am proud of that.  And it will get me through this.  But I also need help and so does my husband - how do you ask?  I wish sometimes I didn't have to - that through all of this so many have seen what I need and they would just help.  What do you do?  Or are you like me?

And please don't worry about my past and concerns or sympathies about that - I have overcome - I share because it is part of who I have become.  I would rather the concerns and sympathy come for what I am now going through - my disabilities.

As always - I wish you all well.  I wish you strength and I wish you help.

Elizabeth

copyright owned by Elizabeth Wakefield, December 20, 2010

The "let down" from stress migraine trigger - UGGHHH!!!

So, Happy happy news!  I found out I was approved for my long term disability insurance!!!  That has been so much stress - financially (and then how all of that impacts my pain and anxiety).

I felt relief and relaxed some when I got the news - which by the way was by receiving a strange email from work which made me check the website again - which I did every day and had called the previous day - and on the website said approved - not a call and didn't receive the letter for 4 more days.  I still have to do the social security disability but am waiting to rest first till January as all the paperwork and all is stressful and hard.

Anyway, I felt SO much relief the night I found out on the website.  I had a lot of questions regarding money and budgeting and health insurance and all that - that's the CPA in me! - but I let it go that night and just relaxed that everything was going to be okay and whatever the answers to those questions were that at least we wouldn't be homeless and could pay bills and would figure out health insurance someway.

Now - let me be clear - I have chronic intractable migraine that is also transcendent.  Basically meaning that I am always in migraine state without stop.  So even the relief isn't a relief from all pain but was a relief. 

Say - oh I almost got political and was going to talk about torture or what some may say qualifies as torture - whether by our military or others.  I am thinking I will go with another analysis - don't want to hit any nerves.  I could have just left this paragraph out or deleted it - but for me this is stream of thought so there you have it - a useless paragraph.

So - to give an example of staying in pain but relaxed you have to imagine that relaxation isn't relief of pain but a let up of some pain or just finally some muscles relax without lots of meditation and foci. 

Let's go with an example not related to pain per se - that many can relate to.  Say that you owe $25,000 of CC debt and other debt home, school loans, loans for your kids to go to college, etc of $100,000.  And you have just enough coming in to cover interest and barely touch the principle amounts so in effect you feel like you are drowning and fighting your way through every day looking for a way to make things better or just be able to do more than pay interest that seems to go nowhere helpful to you.

Then you find out that you bought a lottery ticket on a whim and you don't win BIG - but you win enough to take down your credit card debt to $10,000 - still it is going to be difficult to get everything paid off and you don't have more to come in but now the interest charges each month are lower so with same payments more can go to principle and get the debt down much more quickly.

You still have issues and worries and stress, but you also have some relief - that is if you used your winnings to pay down debt and not go on some spending spree which you were smart and paid down debt in the scenario - otherwise you have done nothing to help your situation.

So you can see the sigh of relief, the breathing room, the light at the end of the tunnel.  For me, it meant not only helping financially because I was going to continue to have funds coming in rather than none, but also that I could go from worrying month to month to knowing I could truly focus now on feeling better.  Eight months ago I could get into a meditative state to do my yoga within 20 minutes (which is necessary because the pain tenses me up so much that yoga without such could injure me).  Then 2 - 4 months ago it was taking an hour or longer - sometimes much longer.  And in the past month I have been unable to.  Because of my anxiety disorder along with the migraine and everything got to tensed up and I try 3 + times a day at meditation and I can't reach what I was able to do before.  Sometimes I can after a long time but not like I used to.

So the relief I felt was like a much needed let go of tension and some relief of pain - although not gone.  I was so happy!

TO THE POINT!!!

The following day was good and I was feeling the same and then around 1:30 or 2pm BOOM!!! Massive increase in pain and for the next 5 days I could hardly move or talk or anything because the migraine was SO bad. 

That's when I remembered, yes stress is a migraine trigger for me as well as anxiety, weather, certain foods, many scents, lights, etc...  But also just like after the end of EVERY tax season even before the transcendent migraine I would crash hard and have bad migraine for days on end.

Because the let down from stress is also a migraine trigger for me!  YAY!!!  Oddly, I knew this but was so excited about the relaxation, it skipped me until a day after I was hit and couldn't figure out why it had gotten so much worse so fast and had checked diet, etc...

Same thing after Thanksgiving and my beautiful sister's birthday party.  I psyched myself up and adrenaline kicked in so I could attend - because I cancel so frequently - and really wanted to see family and be with them.  And after CRASH!!! 

My darling husband worried and at my sister's birthday party wanted me to leave because my head was hurting worse and worse and he was worried about the crash.  I had to explain to him that we knew and know it's coming!  But I need a life too. 
And even small things bring it on - like niece and nephew coming over to show costumes for Halloween and after I crash.  Like when I have to go out to the doctor or worse the store that we know after I crash! 

I explained that we have to live with the ups and downs just like if I go somewhere and someone is wearing something or an aisle in the store has smells that relapse me.  This is my life.  The good point of it all is that now that I have some stability with the approval of LTD for a little while I can focus on getting more of my life back.  That the ups and downs can be more managed as I get back to being able to get my meditation foci back and starting in January should be able to budget some to my acupuncturist again (whom I haven't been able to see due to finances since last April). 

Another awesome thing and again I have to say I am blessed with my team of doctors - I cry about it - my neurologist PA told me to go back to the acupuncturist when I could manage in my budget or to call and ask for reduced prices.  THAT IS AMAZING!!!  Not many neurologists would say go to your acupuncturist.  I remember the days when they wouldn't dare send you to a chiropractor.  (I kind of wish that was still the case as I have gotten no relief or help the many times I've tried with a chiropractor).  Just tell me WHY insurance won't pay for acupuncture?  It helps so many people!  Granted you have to get a good one that knows what he/she is doing but that's the same with any doctor.

I guess I'm writing this post - although I've gotten off track many times as per usual - to all of those who have "let down" from stress migraine triggers.  AND to those who may have it and don't realize.  If you are a student, do you find yourself in bad shape after finals?  If you are in writing and have to meet a deadline - any business for that matter where you are pushing to meet a deadline - do you find yourself in bad shape after it's over?  Everyone, do you find after the holidays you hit rock bottom - or sometimes during because perhaps you pushed to get ready for the holidays with guests, or going places and scheduling and shopping?

The "let down" migraine trigger is often over looked or misread to be caused by something else. 

So what do we do about it?  Well, let's not say there isn't anything we can do because we can.  We cannot obviously keep all triggers from occurring - it can happen at the store if you have multiple chemical sensitivity - you can't see it coming.  But, we can try to manage things.  We can try to not over achieve to meet a goal - personal or business.  What I mean is we can over achieve - but we can manage our time and our goals such that we aren't at a push where we are having to reach down and pull the adrenaline up to push us through only to crash later.  We can study on schedule so we don't cram for finals - maybe the migraine still comes but it is more manageable or not as lasting.

We can take control!  I have found oddly enough that so many migraineurs are also over-achievers.  I have heard comments and have been the person who pushed to be better and better and thought that my bosses would think more highly of me because I worked so hard even through my illness.  That I would be rewarded for pushing myself.  And I absolutely just as I have heard from others that we want to be the best and that we want our work to be OUTSTANDING.  All of that good - but not at the expense of your health.  I ended up from OUTSTANDING to on DISABILITY unable to work.  Which is so hard.

YOU and I are worth more.  We are worth putting our health first.  We are worth it!  And we will have set-backs and we should not demoralize ourselves for that.  A reminder I need often - which my incredible therapist helps me with but also has to remind me of again and again.

Take care of yourself.  Look out for signs of the "let down" migraine trigger.  And this isn't just migraines - my NCS also acts up with the "let down" from stress (and acts up from stress).

It isn't about having no stress because that is impossible.  And it isn't about not trying your best so you don't have a "let down" episode.  It's about managing your time, your life, your responsibilities.  It's about putting you first. 

And it's about not punishing yourself when you get it wrong.  We all do.  Twelve years as a CPA and every busy season (there are multiple ones during the year - 5 I dealt with) I tried to manage and not push and then did anyway.  Sometimes because I managed too well and so I felt badly for others and picked up their slack and pushed anyway.  It's great to be a team player.  I don't feel bad about that.  And I don't feel bad about the work I did.  Or when I pushed myself for a presentation that went great and then crashed.  I feel bad that that is what put me on disability.  I couldn't maintain because that was my job as I became an expert.  So I did great but I was always stress migraine or relapse "let down" migraine and once I was transcendent chronic migraine always in pain the increase made it impossible.  So, I am on disability.  I am going to now though be able to focus and learn and manage and learn to manage and as I get better at it - even still in pain - I hope to get back to work, however and whatever that may look like.

The "let down" migraine trigger - you don't see it coming or forget it's coming until it's too late.  I got hit just from getting good news that relaxed me.  How do you manage that?  Not get good news?  No, you move on which seemed impossible during those 5 days but even in a lot of pain now, I see, there is light.

So, what do you think about the "let down" migraine trigger?  Do you have it?  Did you not realize it until much later or perhaps until reading this and looking back?  What about non-migraineurs - do you have "let down" trigger that relapses your chronic illness?  What do you do about it?  I think the thing is being proactive, but it's too late a lot of time so what do you do if it's too late?  What about when you realize you've overdone it and it will come because of it - is there anything you do to lessen or abate it?

As always - I wish you all the best and I hope I've brought some light onto an issue.

Wishing you the best health and the best of the best!

Elizabeth