thoughts for today …

A FB friend sent me some encouraging words this morning after reading that I did some groceries yesterday and even though I sincerely appreciate the support it also saddened me in way.  Being able to do groceries and a few errands (which took less than two hours) means I didn’t feel as sick as I usually do, so the support for that was nice and appreciated. :)  However the idea that just doing errands is cause for celebration made me sad …because this is NOT an indication that I am getting better in anyway, just having an ‘okay‘ day.  Only killing the disease will make me better, and that hasn’t happened yet.  :(

When will I think I am better?  When the disease is killed and I can return to my life … this is the schedule I used to keep, and need to return to.  Except my day will now start at 0400h and include a 75 minute commute each way.

• 0500-0540 pee, My glucometer/ BP, take insulin and vitamins etc, start coffee, walk dogs

• 0540 -0600 drink coffee, check email and shower

• 0600-0640 dress, hair, makeup (moisturizer/mascara/lip balm), make lunch for work, feed dogs

• 0640-0700 drive to work

• 0700- 0730 patient report and organise work day with partner for a block of 10 to 12 patients.

• 0730 – 0815 vitals/glucometers/quick assessment of 5 to 6 patients + their medications + toilet whoever needs it + feed or set up their breakfast trays/tube feeds

• 0815 to 0930 … dressing(bandage) changes (some have packing involved into the patients body wounds and take a bit of time) Also bathing and skin care and any further assessments needed before clothing and transferring them to wheel chair … this is also when we do our health teaching and emotional support and basically care for and communicate with our patients.  Keep in mind everyone wants to be first so they can be ready for the occupational and physiotherapists … so there is a lot of discussion involved in who has what appointment first … and is it within the floor, or off the floor or at another facility involving transport schedules

• 0930 – 1000 my break … So … pee my glucometer/insulin and breakfast

• 1000 – 1100 finish what I was doing from 0815 to 0930 for the rest of my patients

• 1100-1130 start today’s paper/computer work documenting all that I did that morning … also patient transfers between units now take place, so moving of patients and their belongings etc … or possible admissions to the unit from an acute care hospital to our rehab facility can happen anytime now as well.

• 1130 – 1215 give out lunch meds, do lunch glucometers and insulin and toilet and set up for lunch my patients and my partners (who is on first lunch)

• 1215 to 1300 I get lunch … my glucometer and insulin and food then meet with my partner and get caught up on anything we need to communicate to one another

• 1300 – 1345 we do what we call rounds … anyone that needs to be changed or toileted … go down for a nap/get up for a visitor or therapy (some of them we manually transfer, some require mechanical lifts)… needs their water refilled, has questions, needs emotional support or health teaching etc., … or if their family is in need of emotional support etc.,

• 1345 – 1500 finish all the days paper/computer work, check for doctors orders that the charge nurse might have missed, tape report for the 15 to 23 shift … and answer call bells from patients and family/visitors that may also have questions, need health teaching or require emotional support

• 1500 to 1530 cover the bells and get/give afternoon report/assignment for possible new block of patients for myself plus inform the 15 to 23 staff

• 1530 to 1615 another set of ’rounds’ … same deal as at 1300h

• 1615h to 1730 glucometers and blood pressures and medications for my patients, as well as toileting and changing (yes again) whoever needs it … plus family support … plus set up for supper and feed/give tube feeds etc.

• 1730 to 1800 my glucometer and meds and supper

• 1800h to 1900 update all paper/computer work for the whole day … answer call bells … toilet and change those that need it, some people also like to go back to bed at this time … so change them into night clothes, make sure their privates are clean and dentures are soaking, turn on their TVs. and put away their wheel chairs for the night etc.,

• 1900 – 1920 I drove home … that will now take me from 1900 until 2030

I get home I walk the dogs, feed them, do housework/laundry/check email/ pay bills/ chat online and listen to the TV or radio and get ready for the next day which is more of the same … I am usually in bed by 1100 and asleep sometime around midnight.

Now of course I do not do this 7 days a week.  I have a work rotation.

Week One:  I work those two twelve’s  (Monday and Tuesday), then off for two days … then on for two more twelve’s and an eight hour shift for the weekend.
Week Two:  I am off  Monday and Tuesday, work for two twelve hour shifts, then off for a three day weekend.  :)

On my days off I used to pick up one or two shifts on a surgical floor in another hospital.  I gave this up in August of 2008.  Now I get caught up on sleep … so I don’t get up until around 0830, which is nice :)

I also get caught up on housework, laundry and dog care.  They need extra attention from the days I worked and extra grooming.  I would also try to get some of my writing and photography done.  This was all fit in between helping my sister raise her children, they lived with me and had dance, brownies, cubs, soccer, homework etc., depending on the time of year.  I was also helping my mother with her errands as well as my own and trying to fit in seeing my friends which required me driving to K/W, or Ottawa to see my closest and dearest.

Although I will have the 2+ hour commute each day I no longer have to factor in the children, which I have to admit makes me sad even if it does lighten my load a bit.  I will still have to go to Niagara to help my mother out a couple of times a month on my days off, but the bonus is I will then also get to see the children :D

Perhaps knowing what I had been (and need to be) doing is why I’ve been frustrated with the fact that my days now consist of getting up and doing very little.  This is what I have been doing the past several months:

I get up around 9 or 10 and pee, do my glucometer and insulin and BP and take the dogs out to pee (no walk …  just outside).  Even when I set my alarm for earlier (like this morning I set it for 0730) I don’t hear it, or when I do I am so exhausted it sounds really far away and I can’t move anyhow.

When I do get up and have finished watching the dogs pee on the grass I have coffee and feed the dogs and try to talk myself into eating something.  Sometimes this works, sometimes I skip the food thing, depends on how bad the nausea is on any given day.  When I remember I listen to The Showgram.  James makes me laugh and think and these are two of my favourite things in any man, so it is a highlight of my day.  :)  Whilst listening to James I read emails and twitter posts etc and surf the news sites.

After getting my shower and clothes on, I try to take the dogs for a short walk.  This exertion of energy *please note the sarcasm here* leads to me having to take a rest, so I surf the net or watch the news on CBC Newsworld … by 2 pm I am usually ready for a nap and sometime between 2 and 4 I will take one.  Sometimes it is for 30 minutes and other times it is for 2-3 hours.  When I first got sick and had mono on top of everything else I was napping two and three times a day, so I suppose once a day is an improvement.

Then I get up and sit with coffee or water on the front steps with the dogs.  In the afternoon I try to get it together and get some sort of housework or laundry done.  Usually in 15 minute intervals, put laundry in, rest (in front of computer or TV), put last load away/rest, make bed/rest.
I have supper with the dogs and a friend, or family and the company is nice.  :) After supper I again try to do something around the house in the usual 15 minute intervals.  Other than that I go to the doctors/labs/hospitals and … surf the net/watch TV.  I am so sick of computers and TV!!!  Since CFNY is dead to me (unless G comes back in September, then I will listen to Corus online at that time only) …  I just do podcasts, although some of them are seriously good :) *sigh*   What an exciting and full life *yes another hint of sarcasm*

The past few days I have been in my flat, not at the house, so I am walking the dogs more often due to the lack of a front porch to tie them to.  This is good for them, but not so good for me.  Today I am so sick I can’t eat all that nice healthy food I bought yesterday and I am just beyond weak and tired.  Sometimes I wonder how I will ever get better, even with the radiation coming up … Then I think about the fact that I want to go back to work, and start taking some courses this winter to upgrade my license, so I can teach nursing and work in a sex health clinic … and I want to finish at least one of the books I am writing, and I want to travel (I miss road trips almost as much as I miss sex, sometimes more!!!) In other words I want to LIVE my life instead of just existing as I have been doing of late … so I have no choice, I have to find a way to get better … I’ll figure it out, just not all today it’s time for a nap :(

until later, meli xx