Just another day...

Many friends and family tell me of their days, their plans, the things going on in their lives.  Some are good, some are bad and I love being a friend to listen and be there and love to hear what's going on.

Their days and plans seem so familiar to me as something I once had.  And is missed.  Even some drama going on - not that I want anymore than I already have - is interesting to listen to.

I have drama - a lot of it.  And it doesn't all center around my disabilities.  I have other drama unrelated or semi-related. 

But here's my day - just another day...

I wake up to an alarm from getting hardly any sleep - any real, restful sleep to take my thyroid hormone because I have to take it at least an hour before I eat or take anything else.

I wake up a second time after not really back to sleep but curling up in pain and trying to erase the world.  The second wake up is to a second alarm.  This one to time to take out the trash and more importantly, to take my first set of medications and supplements for the day - primarily 1) to ease pain and 2) my medication for narcolepsy so that I can truly wake up. 

Then, I wait, curled up and in pain waiting for a little release - and when it comes - that means it is time for my first set of meditation, yoga, and physical therapy exercises. 

NOW - if I have doctor appointments during the day then I have to work around these - they may push back a morning exercise or if in the afternoon push one of those back - or delay when I can take certain medications so I am able to drive to the appointment and additional activity - especially outside - increases the pain.

Then comes time two hours after medication to take additional supplement and additional medication (we are attempting to separate some medications from others so I don't only have three times a day of relief possibly).

I have of course eaten breakfast with my first set of medications - or really second after they thyroid one.

Then I do try to do something calming and relaxing.  I feel guilt about needing to do more around the house but am generally yet unable.

Lunch and mid-day medications.  The pain has slowly risen back up again so I am anxious for this and then rest while I await another temporary reduction in pain.  When happens, I have another round of meditation, yoga, and physical therapy exercises.  This sometimes aggravates the pain so much needed rest.

Two hours later, I get the rest of my mid day medication. 

IF I feel up to it, I try to do some dishes, some laundry and pick up - aggravates the pain.  I also do my sink-bath.  I am unable to take showers and can soak in the tub for some migraine relief, but bathing in the tub generally is too aggravating. 

All of this has my Essential Tremor up and going strong and is difficult for me to do much else and if also the pain has risen up badly I am in resting state again.  I try if I am able at this time to take the 4/10ths of a mile walk to the mailbox - I like the extra exercise but get nervous that I won't make it back home.  I always have.  Adrenaline is a push.

By the time my husband gets home from work at 6:30pm I am back in horrid pain and I feel guilt about not getting him to have the best part of my day with me. 

I can generally eat dinner which he cooks for me - AWESOME cook that he is.  (Note: he also cuts up fruit for me as snacks during the day as often I cannot eat a "meal" but need only to snack through the day). 

I try to visit with him and do things with him but often it is him seeing me in pain and awaiting my evening medications to ease some pain.

Three times a week I can take an extra pain medication to ease off the worse days - good, but generally makes me sleepier.  On a day when I take the extra pain medication - I may be able to have relations with my husband - but it is not a common theme.  I miss being close to him and I miss him.  He has gotten very good at holding my head cradling it so it is as still as possible - but always we both know my pain will increase.

Anyway - after my evening medications have had time to take effect it is time for my third set of meditation - which generally is skipped or interrupted due to not being alone - yoga and physical therapy exercises.

Again - this is a day without doctors appointments.  Which interrupt scheduled times for things and cause need for additional rest and relaxation as pain spikes up.

In afternoons when I can, I work on calls that need made, bills that need paid, budgets, and other things that need taken care of - the phone causes additional pain if I am on too long or for some reason some voices.

In evenings I can sometimes relax and get on the internet for a little while.  I do scheduled chats on http://www.chronicbabeforum.com when I am able to on Thursdays and Sundays and that is awesome.

I get calls from friends and family in early evening - a few times a week - to catch up with me and if I haven't heard from someone in a while I make the call.

Every now and again we have a couple people over to spend an hour or two - maybe just to play with my husband with all his toys - or to spend time with us.  This also is SO wonderful and what I want so much.  I do have extreme spike of pain when they leave - I think generally because I have been trying to hide my pain while we have guests.  But we know that's going to happen just like going to the doctor will and so is well worth it.

My husband also works on Saturday and Sunday - generally Monday's off when he can just crash and relax himself.  He also works at home on his building business as an artist - I love seeing his work which he always shows me whether that day or the next.  He also spends time with his instruments and recording music - YES, he is an artist of all trades and awesome at all of them.

I also even though I am on disability - there is a lot of work to that - manage those issues and concerns.  I also as I want to get better try my best to keep up my continued education requirements for my CPA license which is money out of our own pockets.

My husband takes time out to go to visit his family and to go out with friends - I think this is important - VITALLY for him - because if he waited until I could go with him he would start feeling trapped.

I am sick of daytime and even a lot of evening TV - but I have to have either music or TV on all the time due to my tinnitus.  The best music is on my computer and sometimes the headphones get to be too much.  I leave the TV on as a low background noise to temper the constant ear ringing.

We have family outings and with friends - although rarely - and always they know that it may just be my husband if I am unable to make it.

I talk to my kids - they are grown up - mostly through texts or emails daily with calls when we can and see them when schedules permit.

So, when my friends call and say what have you been up to?  I am happy for the question, but also get tired of saying the same thing - all of the above.  Don't they get it yet?  Probably so but are asking and is good because there is news sometimes.  Not generally my own but drama from other things.

So that is my just another day in the life.  I used to say I missed my old life but I am not sure I even can comprehend that anymore.  I just want a day - a week - with low pain where I am able to feel like a human being.

I keep trying and I will make it.

Another day in the life - keep trying and hoping...

Best wishes to all and wishing health and happiness.

Elizabeth


copyright  owned by Elizabeth Wakefield January 8, 2011

Happy New Year - Resolutions - PAH

First let me say a Very Happy New Year Wish to everyone for health and for finding answers and all that you need.

I hate the time of year of resolutions - I resolve EVERYDAY to try to get better, feel better, find answers, work on my health, etc.  I don't need a time of year for it.

None the less, so many around me are wanting or resolving for me that this be the year I am cured.

Can I not say it enough that there is no cure for MANY of the disabilities I have, if not NONE.  So I can only assume it is due to 1st) wanting me to be well and are heartfelt well wishes; 2nd) wanting to clear their own consciences.  Now, I may be a bit of a hypocrite here because I started out with well wishes for health and finding answers.  I think what I want, and resolve each day for is that for you and for me that we have better health, are able to manage our illnesses, and for those who remain undiagnosed, that they find the answers they desperately need.

I would love to say I need to lose weight and exercise more.  My current problem as has occurred in my past as well is underweight and need to gain.  I hate that people say their jealous I'm skinny, because they don't know all the troubles I have with it.  I want to be a healthy weight - which many lately can definitively tell I am not and don't express things as jealousy.  I used to hear, I wish I had your problem - trust me, you don't.  Can you explain why I am hypothyroid and losing hair like mad but yet finally get my levels under control and still underweight and losing hair?  Neither can doctors - in fact caused me to be undiagnosed for a long time.

Due to my constant intractable, transcendent migraine I cannot move my head to do much exercise.  And tried Ensure drink to gain weight - and guess what - it contains, like many of them, as a first ingredient a type of hidden MSG - making migraine worse.

My narcolepsy keeps me from any good sleep and tired all the time, not that the migraine helps.

My Essential Tremor gets so bad that I can hardly feed myself let alone other things - and makes strangers wary of me.

Okay - obviously I have a lot of anger - and primarily due to anxiety.  I go so fast from sadness, loss, and loneliness to anger at people or things I have to manage.

I am SO GRATEFUL for my husband and feel badly for him having to deal with all my issues. 

Then, on top of everything I got another blow I wasn't expecting with my ex and how he is interacting with my children.  I express concern and get the same as I get "the strong one" that my kids are strong and they will survive it?  What?  Get mad?  I can't be the only one...  I can't do much to help.  Yet, I will be the one that does the most and takes care as much as I am able to ensure their happiness and health - while putting my own in jeopardy.

My husband is just as angry as I am about this.  But not much he can do with working all the time to take care of me.  And not having solutions himself having not had children or dealing with an ex.

So, I will continue my daily resolutions and ignore the stupid time of year where I am supposed to make an overwhelming resolution.

I get day to day.  And I try when I can to improve day to day and find ways.  Some days that isn't possible.

I will try with my therapist to help get this anxiety under better control.  My anti-anxiety meds should be doing their job - it's just I've been hit so many times lately and as my therapist said, I should feel loss and I should feel angry.

I will try to associate with people who are better at understanding and helping me.  And I will try to accept people for who they are.  Not a new resolution - same one every day.

So PAH I say to New Year's Resolutions!  Resolve everyday to do better, and try...

All the best as ever,

Elizabeth