My Head

Happy New Year! 

I thought I would share a photo and some thoughts on this chilly day.

Here is a darling little head I bought a while ago. I think she is quite lovely:

But what I really wanted to write about is my headaches.

(Warning:  This next bit is very boring, so unless you really love me, you are encouraged to stop reading here)!

You have been hearing about them more on the blog as I introduce you to this problem in my life.  Today marks the 15th anniversary of my headaches.

Just over 15 years ago, I had a horseback riding accident while taking a jump (the horse refused and I was thrown).  That day, I suffered whiplash and torn muscles.  Shortly after that, on January 1, 1998, the headaches (and back pain) started and have not stopped.  At first the headaches were intermittent, and then over the years became chronic daily.  In the last several years, and 2012 in particular, they have become the central focus of my existence.  Not work, not decorating, not relationships.  

Headaches rule my days.

I was eventually led to a neurologist who diagnosed me with chronic daily tension-type/cervicogenic (neck-related) headache with (the added bonus of) a migraine component (migraine a few days a month).  

I have had a headache every single day for at least 5 years, with only a few days here and there with a very light headache.  Most days, they are moderate to severe.

I could not understand why my neck and back always ached and why neck posture, exercise, and head-turning exacerbated my headaches until February 2012 when I was diagnosed with chronic myofascial pain syndrome.  This means my muscles (especially in my back) generate chronic trigger points (areas of tightness) which then refer pain into my neck and subsequently trigger the headaches.  My neck and back ache constantly, as does my head.

One might think that with massage, physio, and some good medications, this would be easily fixed.  I thought so too.  But I have seen many practitioners, including regular visits to a neurologist (for the headache) and physiatrist (rehab specialist for the myofascial pain) but to no avail.

Medications don't help much, or they help but are so sedating I can't take them.  The ones I take now are so sedating it is difficult to get up for work and I don't have any energy (I understand fully why people with mental health issues stop taking their meds.  You always feel like you are thinking and moving in molasses.  I never have energy.  Everything I do is forced).

I have done cortisone injections, trigger point injections, botox injections (26 in my head, back and neck), and visited many chiropractors, physiotherapists, massage therapists, and so on.  My chiropractor (especially active release) and massage therapist help a bit, but the pain "resets" itself every day, so therapy one day does not often last long.  I work out with a fitness trainer who does a lot of core and back work with me.  This has helped greatly with my sitting all day at work (I was tortured by sitting) and I don't pull muscles as easily since my muscles are stronger now, but the exercise itself leads to increased pain.  It is a Catch-22.

Other weird things like overstimulation (too much intellectual stimulation) can cause my head to ache mostly if I am in a busy environment (lots of people talking).  Which makes a technical engineering career a bit challenging but luckily I work alone a lot.  Caffeine is a huge trigger, mostly of the migraine component.  Good regular sleep is critical but it is hard to sleep well with pain and brutal headaches wake me in the night.  Stress is not helpful either, as in most illnesses.

The only things that help me are: tons of sleep, ice packs, light botox in my forehead, and my chosen medications.  I also have an excellent ergonomic chair at work that allows me to rest my head back, so headaches don't exacerbate over the day as bad as they used to.

Dealing with all this is exhausting, depressing and deflating.  So I finally took everyone's advice and asked for time off at work this past August.

I was REFUSED.  I was shocked.  The corporate doctor did not examine me and was rather hostile.  From our conversations, he has no expertise with my condition but decided that since I have been so capable of excellent engineering work (which he doesn't realize it is killing me to produce!) that I must be just overdoing it.  I am not sure how to take being a senior engineer any more lightly.  He did not have any advice for that.  What he did not care to realize, despite my explanations, is that I am only functional for work.  I suffer through the work days and come home to bed at 7pm with ice packs and handfuls of medications.  I have no evening or weekends and don't socialize.  I only go out to therapies and the gym.  I suffer daily with pain and sleep terribly most nights.  I am chronically exhausted.  I have blinding headaches most days and struggle to do my job.  There is no relief and all I seem to manage is to drag myself to work, put in 200% effort to try to function there in a demanding environment, and then drag myself home.  I get excellent job ratings, by the way (which is how one remains employed).  I can't slack off or act sick or I will lose my job (which might be a blessing, I can hear you thinking...I am starting to agree with you).

We talked to a lawyer and my only option is to sue my company.  And there is a good chance I would not win.  They like to drag people like me (people with headaches, people with chronic fatigue, fibromyalgia) through all sorts of shit before they are done.  They blame us for our illnesses.  As though it is a character flaw.  They cannot measure how sick we are.  And don't believe us when we tell them.

I am the highest achieving person I know and I want my life back.  I want to be a great engineer and even greater person, but I am prevented by chronic pain.  I want to exercise, learn, improve, set goals and achieve them!  In no way am I responsible for this illness through some sort of personal failure.  I am so angry!  But sadly, I also know I am not the only sick person who is experiencing this...

Thankfully, in recent weeks  my company has agreed to give me a reduced work week.  Starting tomorrow I am working 3 days a week.  This will be good for my health (I can sleep the 12h per day I seem to need and run to all my appointments) but crappy for my career.  I just wish I had been approved for disability so I could have taken a few months off.  I am so tired.  But I guess people like me don't have visible-enough illness.  

And please don't tell me to quit my job.  At my age, I am too young to sit on the couch for the rest of my life and too sick to learn anything else that will pay even remotely well (the last time I checked, no one I know was handing out cash to pay my bills).  I want to work until I simply cannot.  I am not one of those people who can sit home and do yoga and read a book and feel fulfilled.  I need a purpose and to do a hard day's work to feel rewarded in life.  And it is easier to do a job I know then to quit and take a year or two off and then struggle to find another job (that I don't know) in a year or two.  Things move so fast in my industry, it is hard enough to keep up now.  If I take a year or two off, I simply will not be able to go back.  So I think it is easier if I stay in the flow of things...but at this point, I don't trust my own judgment any more!

Anyway, my doctor told me he has patients with multiple sclerosis who are on disability and have better function and feel better than I do.  But conditions like mine are not taken seriously.  I cannot believe that a corporate doctor can hear that I have headaches 24/7 for years and have no compassion.  It is clear that his oath to "do no harm" didn't stick.  I am sure the corporate bonus from refusing claims is more motivating.

Anyway...this brings me to 2013.

 I am pursuing some new treatments this year and I am very excited.  I have some very dark days but I feel like there is a light at the end of the tunnel.

I am seeing a TMJ/jaw surgeon in Florida in February to see if a disk issue in my jaw might be the basis of my problem.  The jaw can apparently move slightly in whiplash injuries and result in all sorts of head and muscle pain issues without obvious jaw complaints. 

This brings me to another issue...

Do I continue to talk about my headaches on this blog?

I have been thinking of starting a new blog, for headache sufferers to read, but all my friends are here, reading Windlost!

For those of you who love design and decorating, you know how isolating it can be when our friends and family don't understand.  It is the same with headaches.  It is so isolating. So I often blog something pretty here even when I am feeling crummy.  It is just nice to be around sympathetic listeners.

I am not sure whether to combine the two issues here, and risk boring you all to tears, or starting a separate blog?

In a way, I already have two separate identities (work me and blogger me) and don't really want a third!

What do you think?