Anyone who lives with chronic disease, especially if it is accompanied by chronic pain, understands how the rhythm and of life can change from moment to moment, day to day and year to year. The music of our lives changes for everyone as we age but for some of us it came down with the crash of cymbals.
We find ourselves dancing to a different tune, if we indeed, are able to dance at all. Basically, everything that composes what we call our lives takes on a different color, temper and pace. Quite often we find the highlight of the day occurs when five o’clock roles forth, we have to rustle up something for dinner and find it’s time to put on clean pajamas. So often, the day passes and the greatest accomplishment we can lay claim to is to have brushed our teeth.
For those of us who led busy, productive lives this presents a pail full of, well…nothing. Coming to a halt after living a life of usefulness, such as I always strove to do as a registered nurse, that old empty bucket was a constant, daily insult. Not only did I find it fulfilling but as many cannot claim, I loved my work. One of the areas of nursing I found the dearestto me was the give and take of getting to know people; not only my patients but the many varied medical professionals I worked with.
Many years ago when sacroiliitis gave me too much pain to work as a Director of Nursing and I had to resign. I mourned my lost life and cried often. I was lying on the couch sobbing one day when my poor husband, who also happens to be a nurse, was, out of love and frustration at his wit’s end. He said, “Sue, I don’t care about the income, I don’t care what you do as long as you aren’t chewing on my ass.” I realized my illness and pain was all I talked about and the poor man was filled with frustration because he couldn’t help me.
He is a very colorful, big-hearted character and this simple statement told me what a pain in the ass I had become while suffering the same, physically. My deep stress while searching for medical answers and a decent diagnosis, all while watching my life turn into ashes was more than I could bear. It was ultimately my problem and I was alone to find the answers and prayed for them every waking hour. Of course, like most of us who are struck by this form of lightning, I was thrashing about in all directions, always searching, reading, going to doctors and never finding answers. After three years of hearing meaningless chatter from many of our local doctors where we lived then, we went to yet another specialist in Los Angeles who at least recognized my pain in the sitter and knew it had to have a cause. He began to treat me and I began to have occasional bouts of relief. While gaining relief I found the temblor of my life, the rhythm had slowed and the socialization was one of the things I missed the most.
Living with chronic disease, especially if it is accompanied by pain can be a lonely business. I began to feel marooned, “ship wrecked,” and trapped. Betrayed by my own body I had to find new ways to run my household by calling upon my two teen-agers for more help as well as bugging my exhausted husband who worked full-time nightshift. It is impossible to forestall that kind of physical change that falls onto you, much like a huge tree, uprooted from saturated soil, it toppled and my “roof” had fallen in.
As my children grew, went to junior college and eventually moved away to complete their educations or to take jobs, the loneliness became worse. Fewer friends called or kept in touch. Fellow workers from the past also became scarcer as we had less in common. I searched for activities I could do while lying down because that was the only position in which I could find relief. My heating pad became my best friend.
Relatives and the few friends who kept in touch stopped by but none of them could truly understand what I was experiencing. My reaction to the sun became worse as even a brief trip or running an errand in the blazing California sun took its toll giving me sun rash and a piteous night of cramping and diarrhea. That’s when we uprooted our lives and moved to Oregon which was a good move for us because our daughter lives here but I left the rest of my family and friends behind as my husband and I settled in where we now live, a lovely but humble old Victorian home with a view of the Columbia River. The shear beauty of this area acts as a tonic for me but the health issues became worse as two more diagnosis were added to the list of my problems and more recently, they were joined by cancer. Even now the sun is a terrible problem and I have to do what little gardening I do after dark. Sunscreens help somewhat but not completely.
Loneliness is still the old enemy and I have fought to find many ways to combat it. I find creativity the best way and do quilting when I am able, as well as other needlework, writing and reading but now, even that is threatened. One of my diseases, Sjogren’s syndrome has caused damage to my eyes which is extremely frustrating for one who likes to read and do creative writing as much as I do.
As I battle my own demons of disease and destruction of all my joints and metastatic cancer, one of the areas I insist on keeping alive is my sense of humor. I do find laughter is indeed the best medicine and because of that I strive to keep up with the world news but must keep it to a minimum. While so many people in this country are so enthralled by all the horror on television, we have accumulated a large assortment of our own DVD’s. It is a mystery to me why blood and gore, vampires and comic book characters, hatchet flicks, etc. are even considered entertainment for adults. I find biographies and autobiographies enlightening and uplifting. To see how others who overcame difficulties in this life is always fascinating to me and has been since I was a child. Even then I was writing reports on nurses like Florence Nightingale and Clara Barton, and adventuress individuals like Amelia Earhart. Real life is “juicy” enough for me although a good work of fiction can also be enlightening and help to fill the mind with positivity. Any reading that challenges the mind, any television series or film, anything that increases one’s old brain cells and stimulates thoughts other than of one’s self is a good thing. There is a certain period of time every morning when I am waiting for my morning medications to work. Currently, I am starting my day watching a different episode of the ROAD TO AVONLEA which my daughter gave me for Christmas. It’s an older, funny and beautifully made series filmed in Canada partially by the Disney company. Many of you, I know watch Netflix and the Amazon films and if they are good, enriching and entertaining, that’s great. Many of the books on the readers can now have the audio attachment if that appeals to you. The stories we watch and read do have an affect on us and how we think for that particular day.
I bought a new datebook at the beginning of the year and the cover states “THE BEST IS YET TO COME.” I am an elderly woman, living with four diseases, three of which have the power to do me in and yet, I must believe tomorrow brings hope and its share of cheer. I admit I chuckle every time I look at that cover of my datebook. The flowers on it also help to cheer me up and remind me life is full of beauty. I make it a point every time I look out the window and see the thousands of crimson blossoms on the camellia bush that reaches the third floor of our home I utter, “Thank you Lord for all the beauty that surrounds me.” It’s wonderful to see the robins flitting from its branches and the tall berry laden bush next to it. Our new kitten loves to perch in my bedroom window and watch those robins with such great interest and glee. Do cat experience glee? I like to think they do. I know our little Yorkie does as he jumps around each time we’ve been out of the house for more than five minutes. Animals are such a wonderful cure for loneliness. Of course, they create some work but even that keeps us moving.
There is no sure cure for loneliness but the individual, extremely personal ones. For those of you who also suffer this similar fate from some awful disease or accident, please let me urge you to follow your passions, creative gifts, and find some way to be useful or to give back. We can only do what our bodies allow but that can be a vast collection. Smiling at a morose looking individual in the market, waving at a neighbor, writing a note to a friend or making a phone call to someone you know who needs a chat as much as you do can all be a blessing that flows in two directions. This is one of the reasons I like Facebook. It allows me to use my nursing experience in a way I never dreamed possible. It has also introduced me to so many wonderful individuals from all over the world I would never have met any other way.
I joke about changing clean PJ’s for ones I’ve worn all day but it has been known…although I do feel better when I get dressed. Noon is my usual deadline for entering life and leaving sleep behind although I awaken earlier than that. I have always found giving an allotted amount of time for certain chores helps and now that my husband has retired, he is much help however, he is still a man and we must admit, men and women see housework and all of its responsibilities with differing views; however, that is what makes the world go around, so hurrah for that difference. Having that attitude keeps me from being too bitchy but what really helps me is to realize what I have put him through over these past years with doctor visits, trips out of town for specialists, etc. Love is a wonderful emotion and truly does spin the world.
If you, like me, feel trapped by the limitations of your body, let us agree to combat loneliness and thereby banish the depression that is its constant companion.
Weekly Dose of Sue 
Read this as I was thinking of which pajamas to wear after my shower. The weather here kept me in my little bed (well in and out to feed dogs, let them out and take my own meds) until at least noon today. I spend the majority of my time reading on my kindle paper white. I love that I can adjust the font depending on my vision, it has its own light and it weighs so little my hands don’t get numb. I’m still hoping to get to CA yet this year but the stream of storms all seem to hit here making preparation almost impossible. I don’t feel well enough any given day to contemplate making the 2300 mile drive. My best friend there is having surgery and needs someone to make her behave post op. I know when I get there it’s a few days for me to recover and not a chance I can care for anyone else those days. I also have to make the trip between infusions so timing is everything. I haven’t told her the truth on how difficult this winter has been for me because she worries so much.
Dear Bobsled, what a year for you and your weather. We are having freaky stuff out here in the west right now with snow warnings changing every day. I know life for you is a challenge day by day, often moment by moment. I am pleased you have such kind neighbors and so many dear friends.
I am hoping you will be able to make your trip again this year but it. isn’t looking that likely right now. I hope your friend has others to help her because I know, she must know you can’t. I am sure it was frustrating for you because I just had that feeling and emotion in regards to my dear sister who just passed last month. I so badly wanted to be there but my body just couldn’t. To feel that we have let down someone we love is just another of those burdens we tote around but should not. I think it’s one of the prices we pay for being just plain nice folks as well as nurses. Do take care. I pray your weather starts to get friendly very soon, Love ya, Sue
Totally relate to this at present. I am hoping for knee replacement surgery, but that is down the road, in the meantime other ailments come at the same time and must be dealt with. These are difficult days to be sure, but never the less, life is grand and the time with loved ones, cherished. Thanks so much for this!! Blessings! ♥
Covenant, good to hear from a new friend although to know you identify with it is a sorrow. I can tell from your remarks you also seek joy each day. I also have knees that needed replacing long ago yet choose not because of the cancer and atrial fibrillation. Decisions, decisions as these bodies betray us and give in to disease, gravity, etc. Thanks for your blessings…I take them gladly and wish you well. Be sure to come again or catch up on some of my old blogs. Fondly, Sue
Hi sue
The allotted time for chores …that time has stretched out..it takes longer to do everything . And it’s sooo boring..cant just get anything over and done with and out of the way
There is a comfort in not having to get yourself out if you don’t feel like it but the loneliness of it builds up and then there it is the isolation has crept in
Also youre never in charge of things everything seems to be in charge of you ,even time
So whatever this week is planned I always know that illhealth will creep in to upturn it
Chris
Chris dear, good to hear from you although you sound a bit depressed. I know this blog was a bit heavy but frankly, I was feeling down after a terrible experience with my internist that has been such a jerk. Well, that’s all of him for me…never again. I already have an appt with a new guy and pray he is a kinder, more knowledgeable guy.
I hope this current round of antibiotics is helping your DH. It’s hard to imagine how frustrating it is for him and for you, living with someone with hearing problems. Osteomyelitis is so very stubborn in all cases. It may take some time. I hope spring is arriving in your lovely corner of England and that your lovely deck is accessible due to weather. We had snow showers last night so cold here right now. It’s confusing my plants and me.
I’ll try to make the next blog a little lighter for all of us. Love ya, Sue
Thank you Sue, that was truly from the heart and hits so many truthful areas of my life. I am scheduled for a knee replacement in April. Trying to lose weight. Went off my NSAIDS early for a D&C actually, and I am miserable. I can barely function from the leg pain. Thanks for the reminder to keep the miserableness to myself and not plague my husband with it. He has been very patient though and I give him credit for taking care of his elderly parents and me.
Brenda S., Good to hear from you but so sorry to hear about your current pain. Are they going to keep you off your NSAID’s until the surgery? I know that particular pain very well and have one leg that is getting more and more crooked but I am afraid to have them replaced due to all my other problems. I pray your “female” problems are resolving. Do you have a date for your knee surgery yet? Let us know, okay? Fondly, Sue
Well, I posted a long comment when I posted the blog last night……..but. See it happens to us all.
Anyway, Sue, so true. They take away slowly month by month and year by year. I am fighting tooth and nail to keep myself from giving in. Chores in the house ? Ugh ! Outdoors, ok. B leaves Wednesday so I will have it all to do once more. How I am going to miss that man! Prayers please for his trip (5 hour layover at JFK, 7 hours in London, plus the 7 hour flight) then his surgery and recovery. So much going on in my life. My sister is a major stress factor. But with the Lord’s help I can encourage her to use wisdom in her life.
As for me, tired so much of the time, but ….goes with the territory yes ?
Sue, I used to write about women like Clara Barton, Annie Oakley (haha). And did I ever tell you Amelia Earhart used to visit here in Ivanhoe ? Her cousin had a farm down on the river. The lady’s great granddaughter still lives here and says she remembers her coming by. Strange little things that have happened in this small mountain place. Yet all people want to remember is a “curse” a preacher put on the town. No curse, just shook off the dust on his feet against those who wouldn’t hear the word. Tall tales.
Hope you are feeling better and your spirits are lifting up.
Love ya
Tonie
Tonie, oh do please forgive me for being a day late but we have chatted on FB…I do remember that housework is not your thing and can’t really say it is mine although today I have made a pact with myself to dust the living room because all my furniture is turning white. Can’t say I love any of it but I did actually wash the large window behind our bed yesterday and couldn’t believe how an inside window could make such a difference. Now, our kitty can see his robins even better. I am so ready for spring to arrive.
Very cold here but gorgeous warm sun melting the leftover snow and ice from last night from the roofs and cars. Windy which drastically takes down the temps and the forecast is very iffy as we are part of the massive storm for the whole West. My friends in Calif are overwhelmed with rain and the mountains are just amazing in the amounts of snow they are accumulating. Many ski resorts down there are happier than in years..
That internist who gave me a bad time a few months ago, well, I have avoided him but had to go in last week due to the stomach pain and bowel problems. I have lost seven pounds because I have to be so careful. Well, suffice it to say he could have cared less and was very rude. He’s one of those guys who has a rude staff and I resent medical clerks who tell me when I make the appt., “Now remember, you only can talk about one problem while you’re here and will have only 15 mins.” Kinda puts you in a bad mood before you get there. He did nothing to help me and due to his rudeness, lost me as a patient. I am supposed to see a new rheumy at the university in Portland but not sure the weather is going to be safe for such a long trip. I have waited nearly six months so hope so but we will see…
It just isn’t possible to understand your loneliness at having to be separated from your sweet guy so soon after your marriage began but pray all will be well, particularly guiding the hands of his surgeon.
How interesting about Earhart. You live in an area so rich in history and beauty nothing surprises me. Love you and send love to B and Judy. Sue
Tonie
How’s the lymes going with the antibiotics
B will be in France by now.the first leg of this ordeal over
Will you be able to talk to him in hospital,will he be there for long
I know you would want to be with him and to be so far away must be so awful for you both
My prayers for you both and the shortest time apart
Amelia Earhart is in the news a lot lately as they keep saying they found what happened to her
Weather here 70f today and there are fires in places!
Sue
Well it wasn’t your blog that made me feel a bit down…you guessed right ..well you knowed right!
Dh not well had. to have bloods done chest X-ray all back clear but he has a head ct scan booked
Then I had the dr to check out my breasts they were ok but I’ve got also some sore lumps on inside of knuckles on fingers which she says is arthritis..but on my right hand which I use .i can feel it all the time
Also dh eyelids playing up with lids turning in and plastic surgery not advisable as not a good result many times
So it’s a umph feeling lately
But we went out for a cheese scone so can’t be all bad
Chris
Chris, It is a never ending stream isn’t it for so many of us. Are they doing the head scan of DH to check on the extent of the bone infection? Sorry you have to deal with the annoyance of your finger pain. Some of the smaller things that are always there, constantly reminding us we are human and life is changing as we age. Your DH’s eyelid irritation is just hideous. You and I can somewhat understand with all the problems we have with our eyes. Hope your doctors can find a solution for him. Would it help to have to lashes permanently removed?
Won’t worry too much about you as long as you can go out for cheese scones. Love ya much, Sue
Well not sure why the head ct scan but could be he can’t stand upright with closed eyes.prob the last ear infection going still.he can’t have the dye with it as it made him sick when he had the dye with the ct angiogram
I did ask the plastic surgeon about the eyelashes but he talked of it and went on to something else so I will reask when we go next time
It didn’t sound a positive response tho
We have cold and rain here but gives it sunny tomorrow
Yes it seems a cheese scone can solve all…….
Chris
Chris dear, I would imagine if DH is having dizziness when his eyes are closed they just want to rule out any growths in the head although many older folks have that same problem. Too bad that plastic surgeon doesn’t have to live with that discomfort your DH must be feeling with those lashes. People have depilatory treatments all the time, especially women. Women have permanent eye liner tattoos all the time. Would this be that different because it’s hairs? I can’t imagine how much discomfort he must be feeling. Let’s hope you have signs of spring. How are your daughter’s wedding plans coming on? Love, Sue
I was wondering if the hairs would grow again and that would be worse
How’s you sue and all your family haven’t heard about your DD and grands for a while
Chris
Hey Chris
Just wrote a big reply and it took it away. So…..B has gotten there, first Dr apt today and then we will see how it goes. As for my Lyme’s, well….. had an apt yesterday and we had long discussions and he is running some more tests for things to cause me to be so tired. I really like him, young and always ready for ideas and discussions. He is a researching and updating Dr. Said he hated having to be with Drks as an intern, who never spent time and listened.
Sorry dh is so bad. Prayers for his recovery. Have you tried very warm water for your hands ? Helps me. And I have some compression gloves that really help. I am having some nice Fla strawberries and a bagel (healthy ones) and then I must go swim. It is 20’ here, and thankfully, no snow.
Take care
Tonie
Well hopefully not too long to wait for the op For B
Good you have a dr to care like this one ..they are gold dust
I tried some time ago gloves but they were made of stuff that had a strange smell to them and it seemed they all did and it affected my eyes with the sjogrens .something called napoline ,,or something like that ..like a petrol smell
But my finger joints are really sore now esp the one with the lump
It’s been really warm here too but it’s gone back to its old tricks again and colder with rain
Chris
The rhythm certainly does change, doesn’t it, Sue. I’m having one of those do what you can when you can days here today. It was a long week and I did overdo a bit. My body is telling me about it today. We are also experiencing our 3rd storm in a very short amount of time. The 1st 2 brought small amounts of snow, this one will be pliable for sure. I usually like to walk with Sadie in falling snow when I can, but think we will stay in tonight. I’m sorry you had to see that Internist again and be treated rudely yet again. Your area has had its share of weather this season also. I’m not surprised it has squelched your chances to see your rheumy.
Tonie, I’ve been following a little bit on fb. I do hope all has gone well and will continue with B’s trip. I enjoy the pics I’ve seen on fb, especially of B and the horses.
Chris, poor DH. Prayers continue for both of you. Enjoy those scones! I do miss the scones I had when I was in Scotland and England so many years ago. I did have an Irish friend make and share some with me. Yum! I have a frew recipes I’ve found. I must try to make some!
Bobsled, we’ve been in touch. I would love if you could get a break and be able to make that trip.
I’m likely going in April this year after my infusion of the month. I think I can manage by putting it off a month. Surely winter will be waning by then
Laura, Great news. I know how much you love to visit your friend in the valley of CA and hope she is doing better physically. Weather should be nice by then with spring exploding. Hope your weather will, very soon, warm up, melt and the sun will shine. Love, Sue
I’ll be there in time to boss her around as I will get there 2 days before her surgery. I usually feel good enough to do laundry and cook when I’m there. Not bad for free lodging 3 years in a row.
Good for you Bobsled ! Take care of you and enjoy your away time.
Tonie
Lyn, Sorry Sadie and you didn’t get your walk in. It has been wild for you all in the East, I know. I think of so many of you when I watch the weather reports. We’re cold but no more snow here. Do hold onto the thought the daffodils are popping out of the ground and the robins are hopping around out here. Be good to yourself dear girl. Love, Sue
Thankyou Lyn
I do wish that weather would change and you feel better with along with it
How’s SB now
Chris
God put it on my heart recently to revisit my passion for playing guitar. I was pretty much self taught, only had 3 professional lessons as a teenager. My main goal then was to amass a large repertoire of chords and do a lot of playing by ear. My lack of knowledge limited me and my vocal abilities so much that I pretty much packed it away. I’m doing it much different now, I’m starting from scratch and laying down a solid foundation, learning to read music and learning more about the instrument that had often been my closest friend growing up as a foster kid. So now I have my beloved pets and my guitar and yes, Facebook friends. They all help me through loneliness and feelings of worthlessness. My hands ache more with arthritis and tendon issues so I’ve had to cut down some on practice but its back in my life when so much has left me and my health issues challenge every area. It was just waiting for me to return to it, now older and hopefully wiser.
God bless you Sue, I have Facebook to thank for you. I pray for you and yours and want to thank you deeply for sharing your passion for writing with us. Maybe someday I can play you a song!
Jane, isn’t it wonderful God builds us with passions and talents and using them brings a special kind of joy that I believe it is also healing. Life is so rough at times, there have to be First Aid stations along the way. Good to hear you are pursuing this and gaining the distraction and the reward that comes from using what you are given. Hang in and enjoy. Why not post a song on FB? We can wait. Fondly, Sue
Jane
Practice away. I am self taught as well, but play as much as I can. My hands get very cramped on regular guitar, so I switched to bass when I play in church. Have you tried compression gloves for your hands ? I was just telling Chris, they really help me. I have been wearing them of late with all the cold weather we have been having
Keep it up and be happy
Tonie
Sue, and all
We have been having problems with having to log in every time we post. I have been in touch with WordPress and they see it is happening. He thinks that it may be due to s9me changes the servers, Google, Safari, ets, have made. So he is look8ng into what can be done. Be patient, hopefully it will be fixed soon.
Tonie
Tonie, once again dear friend. Thanks for your help with the technical side of this blog for me. Love you, Sue
Hello all
Well, hopefully the last day of this terrible cold front. It was 16’ here yesterday morning and today. But warming up today. Being lazy this morning. Ceasar woke me up at a little after 5 am to go pee. Couldn’t go back to sleep, so now……
But work to do, so must get moving. Got Roomba doing the floors. Except he hates the rug at the back door, now is stuck.
Hope allis well with everyone. Take care and stay warm
Tonie
A great read as always Sue. So sorry to hear how difficult life has been for you over the years but what a great thing that you can still reach out and help others. Thinking of you. x
Alison, lovely to hear from you as ever and always. Have you moved yet? Bet your weather has been as crazy as ours in the US this year. We had snow last two nights then sun and none left, then repeat. I pray all is going well with your family. I know this read was a bit heavier than my usual but sometimes life rolls that way. I had a terrible un in with a doctor who is now my former doctor and it hit me hard in my spirit. As if life wasn’t rough enough. Love ya gal, Sue
Chris dear, in regards to your question regarding your husband’s eyelashes being removed because they are rubbing his eye as they grow inward. When, many years ago, I worked for a group of plastic surgeons, they had a similar case and did a specific plastic repair in which they cut out part of the eyelid to keep them from rubbing. Patient often had it done for reasons of vanity to look younger but I remember this fella had your husband’s problem. You probably should check with a plastic surgeon. Hope you’re hanging in there, the two of you. Love to both of you, Sue
Hi there sue
Yes we saw the plastic surgeon and he said he could do that but as he is always on warfarin it was difficult as the bleeding may damage the eye ..he would stop the warfarin but would need to go back on soon after the op and that may be to early for the eye to heal well
He also said the op sometimes even made the bottom eye lid too tight as that was not as good to do as the top eyelid
But the eyelashes don’t really grow inward they just turn in as the eyelid rolls in….very odd
Dh has had another ear infection and is on ampicillin again!
As for me I have been in bed again with diver managed to keep off antibiotics but have been rough
How are you sue
Tonie
Hope all going according to plan
Lyn
Hope the weather has cheered up some with you
Chris
Sorry just posted and it’s lost somewhere
Will come back later
Chris
Hope this gets on ok
Oh it got on ok that’s good
Chris