Talk about Fibromyalgia …

Every so often – I feel it is necessary to talk about Fibromyalgia and how it affects my life.  This summer and so far this fall most symptoms I have – have been under control.  THIS is a good thing.  Adjustments on what I take for my over all health and well being have also been working.  For the most part I take herbal based remedies – with the exception of two things –  One for HBP and the other for vertigo.

There are some symptoms that do not go away, or change.  These symptoms have been around since 2002.  The first is the pain.  I have not had a day that was 100% pain free since 2002, my pain is measured in degrees – a good day means I got it down to a 4.  Bad day, where I do not leave the house means it is around 9/10.  Please note that I also have a form of inflammatory arthritis and when it is a bad pain day the FM and AS have coupled up for a party in my joints and nerves.

The second symptom that has been persistent since 2002 is the one that gives me the most grief.  Funny – but in my head I often say, “I can deal with the pain – but my memory issues trouble me!”

Most notably this year has been a form of dyslexia from the fibro fog.  I have always been a writer, and I know it is as “a calling”.  It started when I was old enough to write – I used to make my own children’s books.  Now a days my writing is channeled into my class material, and blogs.  All focused in on my spirituality and mystic practices.

The struggle for me comes from being someone who can write and enjoys it fully – and has a uncontrollable form of dyslexia from the FM.  What does this mean?  It means most things I do write will have mistakes in them no matter how hard I work and being a self correcting machine.  Now you could say, “well let someone else edit for you!”  Sounds simple doesn’t it?  I have tried that many times and it doesn’t work.  Eventually I come back across something I let someone else edit and find there are still mistakes.  Like the FM is permeable beyond me – embedded permanently into the material I write.

My coping mechanism has to be to ignore it.  I can not – not write.  So at a certain point with all that I compose I let it go into the world to find it’s own way.  My way of thinking is most people will be pleased by the content and willing to over look any flaws because of that.

I know there are some times a few people will read what I have wrote and get all anxious over mistakes they see.  I am OK with that.  It is not going to stop me from doing what I am doing.

Here is a article I wrote in the beginning of 2013 – I am re-posting so I can see just how far I have managed to come this year with getting myself back on track.  2013 started out really hard for me as you will see in the article.  I am happy that it is ending on a better note!

He shall, from time to time… (February 2013)

There is this great episode of “West Wing” in season one, where the president comes face to face with his relapsing remitting MS.  The simple cliff notes version is as follows, “He shall from time to time be completely out of control of his illness and completely disabled by it.  There is no warning signs, and no measure of self management that can prevent this from happening.  It is simply the nature of the illness.  However he lives his life more or less in the times between – where self management works, where control is possible and support from a key group of people makes all the difference in quality of life and his ability to do his job.”

As a person who has Fibromyalgia I find that episode to hold the key to the delicate balance a lot of us with long term disabilities face.  I too live my life in the times “between” being out of control.  I do self manage with a realistic understanding of my disability and how it interacts with my abilities and goals simply because it is all I have.

I am like “POTUS” in West Wing in the fact that my illness that is not visually apparent.  So most people do not know of the safe guards and systems I have in place so I can function.  The lists, the keeping at least a week ahead of everything, oh and the notes.  The notes would not make sense to anyone else but are my life saver most mornings when I get up and want to remember, “where was I?”

There is also understand that I can only give to myself, because no one can really ever know my perspective, dilemmas and lack of abilities just they way I do.

I have added tools to my belt of self management over the years – all of them are tailor made to suit me.  No one comes to you with a little kit when something like this happens and says “here – this is everything you need so you can be OK, so you can be a member of your family still, a participant in your marriage still and a functioning member of society still”.  No instead you fumble, stumble and do most of it for yourself because no one out there really has the answers you need.

The two most important tools you can have are:

• A good reliable support team – they are there to cover your ass when things are at there worst.  This includes your doctor, specialist, friends and family.  At times it includes those who you must interact with, like the bank, the person(s) you talk to on the phone at the utilities and the strangers who happen to just be there at a bad moment (like the clerk at a store).

• The language to talk about anything and everything that is going own with you.  A deep understanding of your illness, disability and abilities (and their limits).  Without being fluent and articulate in number two there is no number one.

Still from time to time I will have days or a series of events that are completely out of my control.  Ones that drive me to find new language and understanding.  Usually these are brought on by the cognitive problems I have.  Mine are also relapsing and remitting.  I too get hit up the side of the head in the best of times, when there is no reason for a problem.

With this understanding comes a very real and measurable anxiety and depression.  I am not alone in this fight as I know everyone out there who has long term disabilities can understand that.  It is like being on a sailing ship, and having years of training and experience – you will also live with the unavoidable fact – the sea is unpredictable, you are at it’s mercy all the time, and you have to tether yourself to something tangible unless you are swept away by it.

No two episodes are alike.  I am writing this now because I am in the midst of one and this is my tether in the storm.  My fibromyalgia is affecting the area of my mind where I usually have memory for money management. 

It is so extreme right now I feel like I have been violated by my memory lapse(s).

There is no way of knowing how long this will go on – I do know like all storms it will come to pass.  I can only hope that (and so far this is true) I do not damage something without knowing it.  I am grateful I have a husband who stands by me in support.  He has never been disappointed by any my fibro moments.  If only I could be that patient with myself at times.

Here I am this afternoon tacking my ship into the wind with my tether in place to ride out the storm – with new safeguards and lists in place I can only hope work out.  In the mean time I am going to dig out that episode of West Wing – it will be cleansing to watch it again.