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