Sliding

I've been letting things slide-- and its not OK.  Not really I don't think.

I am not sleeping as well- my routine I was trying to follow so perfectly fell by the wayside.
I am not communicating as well with my husband- my old fears of inadequacy and shame for the way I feel keep me from being truthful.
I've been sincerely trying to give myself an easier time with my limitations, however, this past week I have felt insecure about how these limitations are affecting my husband, my babies, my relationships.  That insecurity causes stress, which doesn't help with the sleep or the communication aspect.  I've pulled in and isolated myself a bit.

Its all a big circle.  I have to keep reminding myself as I go through my cycle of pain: the ups(no pain, or less pain), and the downs(painful days when its hard to keep my head above water), that I am OK.

The night my pain started up this past week I knew it would be a long one and prepared myself mentally.  Or I tried to anyway.  I took note of what I was feeling.
I told my husband I feel trapped. 
I feel trapped in this body. 
I feel trapped in this pain. 
Does it really matter what I do or how I cope?
These headaches are part of my life.  I just have to deal with then- they are part of who I am.  The limitations are simply just there.  I often refuse to let them slow me down too much, so this week I have tried to keep up the exercising and my usual pace of life.  I wasn't as forthcoming to friends and family with my pain this week. Honestly, it wasn't as bad as last months, however it was bad.  I was just tired of hearing myself complain.  And that was OK to ignore it- I almost felt normal when with people. 
And thankfully circumstances allowed me to take it easy to some degree.

Friday was a perfect day weather wise.  I am pretty sure I had a headache, but as I think back on that afternoon, I remember sitting on the front porch while the kids played on bikes and with sidewalk chalk and our picnic basket.  I pulled my pants up above my knees and took off my shoes.  I closed my eyes and faced the sun.  The sun baked my skin, but before I could get too hot, a gentle breeze would cool me down and I felt at peace.  I became aware of the stillness inside myself as I felt physical comfort and enjoyed the sounds of my children.  It doesn't matter today wether or not I had a headache, it only matters I felt the peace in that moment and can close my eyes and remember back on it.  That is a blessing I am so grateful for.

The Journey Continues

So, yes, life is getting better for me headache wise.

I say this, because its been a week since my week-long headache that made me sicker than sick and almost useless.  It was so bad I went into the doctor again to see what she could do(plus I needed to discuss some of my new meds she put me on).  She didn't give me the answer I wanted, but the answer she gave me is one I haven't tried.  So I will try that before I poo-poo it.

I am amused at several of my dear friends who when they ask me how I am feeling, and I answer good, they then ask me if I am lieing.  Apparently more of them read my blog than I realize.  Ha!  Those of you who ask me the second question are the ones I would be honest with in the first place.  I appreciate and love you.  Thank you for being you.

I am also amused at so many other people in my life, who definitely care about me and have heard me say my headaches are improving, who assume I am 'cured'. 

There is no cure to migraine and chronic headache.  I still experience a headache almost every day of my life.  I am coping better, I am treating the headaches and pain better, and communicating my needs better with my loved ones(mainly my husband a few close friends).  I am not judging myself as harshly as I did before for not getting things done or living life the way I think I should live it. 

I am grateful to be in the position I am in now.  I appreciate my pain free moments so very much.  I appreciate my husband and all he does for me.  I appreciate my children and their love and compassion for me.  I appreciate my friends who are simply there for me and are genuinely happy for my pain free moments as well.

I know I am not out of pain completely.  I know I have days that are very difficult to endure.  But I am grateful for what I do have.  My journey continues, but its not without hope and its not without the love of those who have proven their love to me.

3 Minute Breathing Space

1. Awareness

Bring yourself into the present moment by deliberately adopting an erect and dignified posture.  If possible, close your eyes then ask:  "What is my experience right now...in thoughts...in feelings... and in bodily sensations?"  Acknowledge and register your experience, even if it is unwanted.

2. Gathering

Then, gently redirect full attention to breathing, to each in breath and to each out breath as they follow, one after the other.  Your breath can function as an anchor to bring you into the present and help you tun into a state of awareness and stillness.

3. Expanding

Expand the field of your awareness around your breathing, so that it includes a sense of the body as a whole, your posture, and facial expression.  The breathing space provides a way to step out of automatic pilot mode and reconnect with the present moment.  The key skill in using mindfulness is to maintain awareness in the moment.  Nothing else.

Some Links

I have a headache tonight-- its my typical PMS headache that will likely last for 3-5 days.  But I am expecting it and will try to treat it well, and take notes so I can go back to the Doctor next week and find out what she can do for these specific hormonal headaches.  My sweet husband took all three kids to the kids school to see a movie.  I was surprised he offered to take all three- the baby is now two and quite the the wild card.  I hope they don't come home early.

Here area few links I am subscribed to and am learning a lot from.  I am getting news and updates, as well as other people who are like me(migraine sufferers) who have been able to put their voice out there and bring comfort:

http://migraine.com/
http://migraine-ista.blogspot.com/
http://somebodyhealme.dianalee.net/

What is this I'm feeling?

I AM FEELING GOOD!

I promised myself today that I would take a few moments to blog about something positive.  I so often get on here and throw pity partys and work through my frustrations with my writing- but today I FEEL GOOD!  I need to write it down!  I need to shout it out to the online world! 

I feel my adjustments to medications is complete.  I haven't forgotten to take them and I am seeing a definite benefit to taking them.

I started running with a group of ladies this week.  We each take a day to watch each others kids, so I watch 1 day, and run 4 days.  I actually skipped today because of my to-do list.  This takes place in the morning so my nights sleep won't be affected.  I think the consistent exercise, along with being outdoors(I usually exercise inside, but being outside is just so much better for me) really helped me a lot this week. Plus it wasn't rainy this week.  Yay PNW!

Last night I went to sleep with no help from sleep aids or anything.  I was asleep before 11.  I slept through the night(big thank you to the baby for sleeping through the night- another yay!) and woke up at 5:30 to use the bathroom.  I thought in my head:  Wow, I feel OK.  I could actually get dressed and get my shoes on and go for a jog.  But I didn't.  I went back to sleep until 6:30 when baby got up.

I did a million and one things this morning.  Baby and I had a lunch date with  my husband.  She actually took a nap this afternoon and I was able to do a few productive things around the house. 

No headache.  No major pain.  I FEEL GOOD!  It is quite an exciting thing.  I had several really bad, but short, headaches this week, so to have a day and  half(I felt pretty good yesterday too) feeling good is just such a charge.  I actually feel a thrill to feel so normal. 

I have no idea what tomorrow will bring.  I don't know when my next pain-free day will be.  But I have had one.  I can have another.  I can't forget this exciting feeling.  WOOT!

Chronic Pain

One of my dearest friends was talking to me about some pain she has been in for weeks on end.  Her feet have been hurting her like no tomorrow-- this is one of my tri-athlon buddies-- so its been a tough pain for her.  She mentioned how she feels like she is a different person when in pain and she doesn't like it one bit.  We talked about her feelings and emotions as a result of her pain.  In our discussion she realized what it means when I say I suffer from chronic pain and headaches.  Since this time, she has been more supportive of my pain.  She asks me how I am and really wants and answer- even pushes for the truth when I don't feel like telling it. 

I have to say something felt good when she described her life being different from her pain.  Not just her life- but HER.  SHE was different and not in a good way.  Reminded me that this big bad person that is me when I have a headache is partly because of the headache- not just because I am a sad excuse for a person when I am in pain.

I also have to say it makes me nervous she knows me so much better now.  Having an "invisible illness" is comforting in the fact I can blow through things and do my thing and not have to explain myself.  But I also feel at a loss many times.  I have blogged at how alone I feel.   I have blogged how I am not truthful to those around me and how frustrated I get when those closest to me don't have as much compassion as I want them have, even though I may not share with them, or even know exactly what I need from them. 
There are times I feel like I live a double life.  I wonder if I am being deceptive when I go through the motions when on the inside there is so much pain and so much turmoil.  For example, my mom or a friend or a sister will call to check on me.  Maybe I will tell them I am not good.  They offer to help and while there are days I take them up on their offer, I usually say no.  I have learned to deal with this.  So, after I open up about being in pain, I then have to turn around and downplay it so not to worry my family about it.  I end up supporting those who are worried about me, who are only actually trying to help me.  Does that make any sense?  I actually opened up this week about a particularly bad headache and was touched by the outreach of support and well wishes(thank you facebook).  But once that day passed(the headache passed too, but came back a day later and has stayed with me for the past several days), I spoke of it no more.  No one knows that I encounter pain on a daily basis.  And really, there is nothing wrong with me medically speaking.  So what is the point of talking about it?

I am very frustrated tonight.  And in pain.  And can't sleep.

The Nausea

Lately the nausea has been really hard for me to deal with.  It was never easy, but recently- like in the last several months- its been very strong, very noticeable, and seems to touch every part of my life.  I think I was dealing with the pain and able to go around it to get things done... now the nausea wants to make sure I don't go too far or get too much done.  I can't leave my house for long.  I don't feel comfortable with face-to-face conversations in fear I might just puke on the side.  I am naturally anti-social with my pain.. and now I have even more reason to be so.  I am not happy with this development.

Blah....

Always needing sleep

I hate bedtime.  My bedtime.  I love that my children have a routine and while they have their ways of dragging it out or prolonging it, it works for the most part.  I do not have a routine I can count on.  I dread the nighttime hours because going to sleep is especially difficult for me.  I remember this being the case as a very young child.  I would creep downstairs hoping to catch my Dad in a friendly mood so he would entertain me for a few minutes rather than shoo me right back up to bed.  Those were actually fond memories- and it isn't until now I realize those were nights like the ones I have now- hard to go to sleep.

Talking to my doctor about my issue of insomnia, especially during pain, came up at a recent appointment.  We discussed some relief for that, which includes adjusting some meds around and will probably have a week or two of adjustment which means I won't be feeling at my best, but the goal in mind is worth it.

We talked about sleep and the things she told me are things I know.  Its things I have learned through having and helping my own children getting on a good sleeping schedule:

1. Make the room a room for sleeping.  Our minds need to be trained that our bedroom is a room for one activity(or two for adults).  Not playing, watching TV, even reading in bed.  If, when trying to go to sleep, you can't.  Get up and leave the room and do something that does not include computer, TV, or other monitor/electronic light.
2. Keep your schedule consistent.  Go to bed and wake up at the same time each day.  If you go to bed late, get up at the same time.  My children are amazing with this rule.  My boy gets up within a half an hour each day.
3. Keep the noise down before bed.  Make your room dark and cool.
4. Establish a specific routine for bed- cues that its time for bed.
5. When you wake up in the morning, get the lights on quickly- this will help you wake up.
6. Do your exercise in the morning.  I am not sure about this one, but I figure if I am getting the rest I really need, I might feel up to it.  At this point I am so tired upon waking up thinking about exercising is insane.  I reserve my exercise for my "me" time at the end of the day.  I need to change this around.
7. Do not nap no matter what. This is, of course, for adults and not children.

So, nothing new learned here.  And even though "doctors orders" are generally easier for me to follow, I still have trouble.  Here is what I finding out with my new rules 
1- my room is probably the least kid friendly room in the house, so I choose to be in this room when not on duty as mom- so only using it for sleep doesn't happen.  2- I have been trying really hard to keep my schedule consistent and I can see its benefits.  3- Once the kids are down, its a pretty easy to keep things quiet and calm.  4- As far as a bedtime routine- I haven't really started this yet, except I am reading more before bed(vs. watching TV and this is helpful).  5- Turning the lights on quickly in the morning is helpful.  6 I am not able to exercise in the morning yet, so I've been exercising mid-day and it hasn't interfered with sleep.  I did a quick exercise routine the other night at about 7:30 PM and was up until after 1- it had to be the exercise.  7- I haven't napped as much since I started this, but I generally lay down with the baby and am tempted to nod off with her at her nap time.  I am working on NOT letting this happen.

I still don't love bedtime- but I don't dread it like before.  I find if I am having trouble going to sleep I will get out of bed, go downstairs and have a snack.  I am usually able to go back up to bed and fall asleep.  This is in contrast to when I would turn on the TV, or go on the computer and then try to go to sleep-- it was pretty hard to do so.  I am limiting my time on the computer and in front of the TV in the evening hours.  This means I don't watch much TV at all anymore.  And I am realizing I did a whole lot of nothing on the computer anyway(except writing, which I just do when I feel like anyway).

I often wonder though how common going-to-sleep issues are?  And upon waking I always feel like I need more rest- no matter how much I just had.  Is this normal?  I don't know.  Whats normal anyway?  But overall there has been improvement and I assume there will only be more as I continue following my rules.

Realization

When I was pregnant with my first child, and suffering from migraine attacks, I worried and cried about what I was possibly handing down to another generation.  I laid in my bed wondering what pain I inflicted on this child by giving her my DNA.  I worried a little less with my second pregnancy.  By my third pregnancy I didn't think too much about it.  What was I going to do anyway?  Having children was my lifelong dream.  Besides, I was so fertile according to my doctor I had dodged many bullets- so the option to NOT have children was not really an option.

My son is now 6 years old.  He gets headaches once in a while.  I have noticed twice him having symptoms of migraines.  When he complains of a headache I listen and believe him.  My oldest hasn't complained of any.  Of course the baby(almost two) seems only capable of causing them at the moment.

Starting yesterday I felt the familiar cycle start to rev up for a week-long headache experience.  Now that I do not seem to have one long continuous headache and can see the start and ending of them, thanks to a daily medication, I am able to notice and pin-point different things I never noticed before.  I am finding a pattern to my headache series.  Yesterday I noticed a trigger and some specific changes.  Today was rough and the pain did indeed come as I suspected it would.

This afternoon I received a call from little mans school nurse.  He was playing rough on the playground and recess and fell and bumped his head pretty bad and broke his glasses.  At the time my head was throbbing, but there is nothing like a little motherly-duty to put pain in the backseat, and I rescued my little man.  He has a horrible goose egg, some nasty scratches, and glasses his daddy was completely able to fix(thank goodness!).  He also had a headache.  Being a normal boy, I know the drill with bumps to the head and watched him and babied him according to need, and then a little more. 

At bedtime my whole family snuggled in my bed and did our reading(which is a wonderful experience I cherish), and when it was time to go to bed my boy started crying.  No body loves me, he said.  Of course this isn't true and I proceeded to tell him everyone in the world who loved him.  Both of his sisters joined in(the baby even started counting on her fingers and telling him names in baby language).

Then I realized he feels how I feel when I am in pain.  Unloved.  Hurt.  Alone.  I realized these feelings of hopelessness and fear are a result of his pain.  My pain too.  I realized through my boy that this is simply one more aspect of the headache that causes pain.  My heart breaks that my boy is hurting.  I would never wish this on anyone and would take it way from my children if I possibly could.  But, it took him to show me that realization.

Realization for me is big- this feels huge to me.  I am not sure why.

Merry Christmas

     Merry Christmas-- here is to hoping the joyous festivities will not result in a headache and days in bed suffering. 

    December was a very good month for me headache wise-only a handful of headaches- only one or two which caused my life to stop while I recovered- which was good considering several deaths in our family and a lot of disruptions to routines.  Spending the 22nd and 23rd and a memorial and then a funeral for dear family  members lost(one from my husbands side, one from mine) helped me to avoid the anxiety I usually feel this time of year.  I was able to relax, enjoy what was going on directly around me, and reflect on what is most important.  So many blessings.  So much love.  While I feel I am a very grateful person, I enjoy taking time to reflect even more on all that I have.

Merry Christmas to you and yours... here is to hoping for a happy and healthy 2011.