Those of us who live with constant pain know the loneliness and isolation that can come from this life. It’s a phenomenon that is not really understood by others. Like so many of life’s experiences, you have to have “been there.” Sometimes an individual may be relating an incident that ends with the simple statement, “Well, I guess you just had to have been there.” This is usually said when all descriptions fail.
How do you explain a hot, sweaty day in the summer? I have a vivid memory of traveling through the South with my family when I was a child and getting a frosty mug full of A&W root beer. That memory from long ago is so vivid, I can actually feel the frosty outside of that glass mug and the thirst quenching ecstasy of that drink. Memories are such a wonderful cure for self-pity and loneliness. We stopped for ice cream the other day because I needed cheering after a harsh, miserable CT scan at the local hospital. There is no experience to bring back better times than sitting with a sugar cone full of a double dip of classically made ice cream as it runs down your hand and arm while you strive to keep up with the drips. We need to recall joyous memories. They can’t all be bad and those don’t really help us.
Like me, most of you who are reading this have been there for a long time. Whenever I sit down or lie down to write one of these blogs, I am always aware “I am preaching to the choir.” You all know this “song” as well as I do. Okay, all together now let’s choose a literal song, sing out until the neighbors can hear you. How about “Nobody knows the trouble I’ve seen. Nobody knows my sorrow.”
You who have read my writings for any period of time know how much I love that old spiritual. Sometimes when life become too overwhelming, I find it helps just to belt out those words. I usually feel better afterward and either end up in laughter or tears. How can you relate any experience to someone who hasn’t felt it, seen it or often, doesn’t care?
As a retired RN it shames me to admit there are many individuals in the medical community who start out caring but become calloused by the complaints of others with time’s passage. It has been my experience and observation to see varying types of people; some people who become more sensitive with time and others who begin to turn a “deaf ear.” Is there anything more humiliating than pouring your heart out to a doctor who keeps looking at his watch or is typing his notes while staring at a wall instead of looking at you? I was hospitalized for surgery several years ago and was appalled to see the computers in each patient’s room were located in the corner, facing away from the patient’s bed. In that scenario, one has to wonder if the nurses develop neck problems from turning to look at the patient’s over their shoulders. That is assuming they look at the patients at all and do the assessment a competent nurse is supposed to do, in order to chart accurately and correctly.
You must keep in mind I am an RN from the “old school” of nursing. What a wonderfully caring time that was. We gave wonderful bed baths, backrubs before bed each night, as well as offering a nice hot washcloth for the awakening patient the following morning. These are services a well trained certified medical assistant could and should do, but so often in today’s world of medical care, there simply is not enough time. During one year of my nursing life I was Night supervisor at a small hospital and used to make it a practice to fill a basin with hot water, grab a pile of clean washcloths and a sweet young nurse’s aide and she and I would go up and down the hall offering a wakeup call accompanied by a hot wash cloth. No, we didn’t slap it on the sleeping patient, we awoke them and handed them a nice warm cloth. It also breaks my heart to see how much bad care is currently in existence not only in hospitals but in all the other parts of the out-patient services in a community and even in doctor’s offices. All of this is very fresh in my mind at the moment I am writing this because I have recently had a couple of very negative medical events in own my life as a patient.
I often wonder about the little things in this way of life, like answering a common question on the phone or a checker at the market like “How are you?” That just doesn’t cut it for me. Oh, I know, I’m being picky but I never know what to say. I wonder, does this individual want the absolute truth which they will not really understand or should I lie and say, “Oh, just fine thanks?” Is there anybody out there who really cares?
I know I am very fortunate, because I have many people in my own life who care. The challenge is to sort and prioritize my remarks and complaints with everyone. My dear husband, for instance, would go mad if I told him every minute of the day how I am feeling. It is simply too much for our loved ones when we pour it out onto them like hot oil all the time. There is so little they can do about it. For my spouse, he has had to live with all this garbage for over thirty years and that is a strain on any marriage. We’ve made it to forty years in November so I guess we’re doing okay. All of my grandkids never knew me when I was well. Thankfully, my children do remember that person and I am certain, often miss her. At least I hope they do. I do try to be a bit goofy around the grandkids just so they can get a glimpse of what it was like for their parents when they were children.
We all have to learn to know where our safe zones exist. That is one of the reasons I like writing a blog and being on Facebook with so many folks who live this life. One has to be aware of the overachievers. These are the folks who, when asked where they are on that hideous pain scale rating from 1-10 always yell out, “Oh, I am at least a 12!” I am always tempted to respond, “Oh, come on ducky, nobody wants to talk to a 12.” Life is hard enough living with pain without being an overachiever. Beware of that trap. Save your griping, complaining and whining for the times when you will truly need them and not for the daily aches. Just remember there is no reward for being the sickest one of all…actually, there is and it’s called death. Some reward, huh?
Another area of concern, quite often, for me personally, is the challenge of this island of loneliness. I am constantly being left out of family events I would like to attend but simply cannot due to the pain in my rear or my back. I’m not a very good martyr and do not want to shame and embarrass any member of my family by sobbing through a concert, school performance, etc. A simple dinner out is a wonderful deterrent to loneliness but only if I know what kinds of chairs the restaurant we will be attending have. I am strictly a “Have foam pillow will travel” kind of gal. Where this tush goes, a pillow always follows. Elbows on the table may be gauche but sometimes, that’s the only way one can stay upright and it is truly embarrassing for my companions if I lie down in the booths.
Back to the subject of loneliness, I find reading, correspondence, a good movie or a friendly phone call all help out. How do patients who are restricted in their actions or activities manage life without a pet or two…or three? Pets are the answer to a lonely confined life and beat a human being on the old companion scale every time. The entire animal kingdom holds so much wisdom, love and understanding that is on a totally different plane of existence than humans. Being nurses, both my spouse and I enjoy the veterinary reality shows on TV and you can pick up some fairly good ideas on those for your pets or for yourself. I watched one of the large animal vets stick a large hose in the side of a bloated cow the other day. I often have gastrointestinal trouble. Sure wish some nights someone could stick a big tube in my side. I know, I know, but you have to see the humor in all things. Just briefly, I think it’s okay to want to be a cow.
Humor is one of the best cures for depression and isolationism. The other day I broke a tooth and while at the dentist, his assistant was saying her husband found earphones he has to wear at work were hurting his ears. She told him to put a sanitary napkin under them, over each ear. Of course, no man is going to do that but it did remind me of something I do. I had to share with her and our very convivial dentist that I often put a sanitary napkin over my back where I have two crushed vertebrae to keep the bed or certain pairs of jeans or pants from pressing on that sensitive spot. As I explained, of course they laughed but can you imagine me in the Emergency Room some night and some young hapless ER physician observing this old lady with a Kotex on her lower back. Oh my, I wonder how he would chart that? “Elderly female, call for a psych evaluation.”
Well, my friends, the loneliness can be sad but when it strikes, hug your pet, your husband, your pillow or whatever gives you comfort. It’s only human to cry but better to laugh when you can. If you are a person of faith remember God is love and instead of blaming Him for your circumstance, just try to absorb how one entity can be love. It’s pretty amazing and mind boggling. The concept of love itself is all things wonderful. God who is love is also omnipresent, therefore He never leaves your side; therefore, you are never truly alone.
Weekly Dose of Sue 
This post is so very true, sadly.
Marandarussell, yes, unfortunately but we always have to search for happiness in this life; otherwise, what do we have left, those of us who have been through so much. Thank you for your comment. Sue
Your blogs help me so much.
Shirley dear, my FB friend, thanks for letting me know. I’m sorry you need help but glad I can be there, sharing my own experiences with all of you. Fondly, Sue
I was a nurse also and when I think about the training we received and how we were taught to care for people in need, giving comfort with bed baths, back rubs, etc. What a different world that was. I miss it.
One soul, I agree as you could see from my blog. Sue
As usual, right on point, Sue. I’ll have to remember the Kotex tip. 😉
Lyn, I didn’t get back to you on your last comments on the last blog…too much going on in my life. I am so pleased for you and your special friend that she is feeling stable in your cancer right now and I know your visit was wonderful for both of you. I know it was hard for you as well, both emotionally and physically. How is her Mom doing? So pleased you are there for them sharing your strength. Love you gal, Sue
I too must remember the Kotex tip
Going out does have its limitations with a sore back and being prepared is unfortunately part of it
I have cushions permanently in the car for all occasions
And humour….how do you survive without it
What a treat to be woken up in hospital with a warm flannel ……
Chris
Chris dear, I think we had a hex on us the last few days. Every time I started to answer you my eyes started to fade. I am sorry. I love hearing how life is going for you in the homeland…England. I also have pillows all over my car seat, one to sit on and one lumbar pillow. It sounds like your weather is more connected to ours than I ever thought.
I hope DH is doing okay. I also pray your eyes are behaving because I think of you so often. Mine have been hideous so new computer glasses ordered and all new eye drops. I am going to give in and use the petroleum based night time ointment. I hate that stuff but if it helps as much as the eye doctor thinks, then, okay.
Chemo shot still trouble in the left thigh and hip here, and still alternating heat and ice. I hate this. I have an appt. tomorrow and will not let that nurse near me…oh no.
My correspondence will improve when I get the new glasses. Love you, always good to hear how you are doing, Sue
Do hope you are feeling better from all the crappy stuff you had happen to you last week
Chris
Tonie
Hope you too are better and enjoying life again
Sue, I also did those early morning rounds with the hot wash clothes as an RN! When I first became ill, the phone frequently rang with friends from work calling, but slowly those calls became less frequent. I’m sure all of us, at times, feel isolated from the world! Thanks for a great blog! Gentle hugs, to all!
Pomum Brenda
Pommum Brenda, I know, I have lost friends over the years due to the demands of illness and such do get it. I don’t like it but it just happens. I have had you on my mind so much, especially now due to your impending surgery. I had that CT scan of my cervical spine a week ago and still no call from the doc. I have slept in a collar for years but believe for me it is my “gone” right shoulder and of course, I am right handed. Just remember I pray for you and have loved you my sweet friend and admired your courage for years now. Sue
Dear Sue
I have been in that isolation ward long enough. Feeling much better yesterday and today. I have a few th8nga to accomplish today, with some rest after. I think one thing that makes me feel isolated, is no one really knows what is wrong with me nor takes the time to care or ask. Well, except B that is. That man explores all avenues to understand what ails me. My family thinks RA is bad joints.
But, the unfortunate thing for them, is perhaps they or their children may pop up with this stuff. Lord I pray not, but they know nothing of any of it. Sometimes we need sympathy and care. And understanding. I remember the warm wash clothes, and a back rub. So wonderful. It helped. Now you’re lucky if you can get a nurse to answer the call button. Sadly, they are overworked by an understaffed hospital. Hospitals now are money mak8ng machines, not institutions of caring. It’s all about money now.
Compassion is something you either have or don’t. And sadly so many now ….don’t.
Hope you are doing better. I just saw the two mess ups on the post and fixed them, sorry bout that. I am getting more excited. Only a few more days now. Take care you
Love
Tonie
Dear Tonie, Finally, Ii have enough sight this AM to answer you. Oh, how I agree that even in our own families we cannot get understanding. I may have more in mine just because of our family history with so much rheumatoid disease over the years with my sisters and my Dad. I think it’s so dear that you fiance is so interested he reads so much about your illnesses. I know you at least have a decent rheumy. So relieved you are feeling better. I am SO EXCITED about your coming to see us. Jim is being so kind about the drives to get you and take you back to the airport. I think he wants to finally meet you almost as much as I do. My house is cluttered, dusty and some parts need pain but we are what we are. I’ll have plenty of food and we’ll eat out at some great places and nobody will be dieting for those four days, okay? I have a warm twin bed, plenty of covers, extra jackets and sweaters and a clean heating pad so you don’t have to carry extra stuff. George wants to meet you and will probably chase your heels a bit until you get to know each other. Later we’ll chat. Hang in there sweet friend. Love, Sue
Tonie and Brenda..see you both tomorrow because now my eyes are bad. Love you both, Sue
Such a good read. Im catching up while layling on my bed as id got to a point where i could go no further without a rest. My body is still not right after my fall and id done a bit too much today. Im always joined pretty quickly by my dog jess who likes to get close and comfy. Definitely wouldnt have survived the lonely times without her. Take care x
Sweet Rose tint/Alison…Always love hearing from you but sorry some of the healing still needs to be done. I’m so glad you have Jess to cuddle with. Aren’t pets the best? Such unbridled, nonjudgmental love they always offer. What kind of pup is she? Much love to you my dear….Sue
Thanks Sue, she is a Patterdale x spaniel and is a very sweet loving little dog. I always think a dog adds so much to family life, and now that mine have all grown and left home I have been glad of her presence in the house. Take care x
HI, Sue, sorry it has been a while. I’ve been up to my ears here as well. My friend’s mom had her first chemo yesterday, had a bit of a scare in the form of a reaction, but they quickly increased the protocol med and were able to proceed normally. My friend got her cancer marker results today and they are down to 20! Good news! Probably a good time for good news, this is about when she is feeling poorly.
I’ve overdone and was to have rest today before a full day tomorrow. Well, Sadie has gotten sick. I was up twice overnight with her to let her out, then awake early. She still managed to have an accident in the house. Today she has continued with diarrhea and was also throwing up. (We started bland diet yesterday.) So, it was a call and a trip to the vet. Also had to pick up something for DD from my friend’s shop and ended up staying a bit extra to help with a customer while they were busily preparing for tomorrow’s Furniture Market (this is what I am helping at tomorrow). First thing this morning I had a dermatologist appt. All is fine but one questionable spot I’ve been keeping an eye on on my nose. Doc shaved a bit for biopsy. It is either something completely harmless or possible melanoma. Hopefully, it is nothing. What a day. Looks like I have evening shift with the pup by myself. DH has a gig about 2 hours from here and SB is heading over to a buddy’s place shortly to watch a new show. Not sure if he will be back tonight or just stay there the night. At least he mowed the lawn before he left as he had promised. Time to move to a new position, this chair isn’t cutting it anymore. Oh! Yesterday my low back was quite sore so I tried a bit of the salve you recommended. The Peppermint and Eucalyptus are rather strong in scent, but it did help. I am anxious to see how it will work for me. I finally ordered and it just came this week. Early morning tomorrow. I’m not the best with mornings as you can imagine. I hope the antidiarrheal the vet perscribed helps the pup make it through the night.
Lyn, I don’t recommend the peppermint hemp salve…I use the ginger/honey. I do have a dear FB friend who prefers the peppermint to get her feet to calm down enough so she can sleep at night.
Even thought my eyes wouldn’t allow me to get back to you about dear little Sadie, I have been praying for her and hope her gut has calmed down. Whenever this happens I always switch our dogs over the years to white rice with a touch of chicken or chicken broth. White is easier for them to digest than the brown rice.
So sorry to hear your back is acting out. Do take care dear friend. Love ya, Sue and hugs to Sadie..Hope you both got some sleep. Sue
Hm, I don’t recall seeing much of a choice, just the peppermint eucalyptus salve or the oil. Maybe I’ll have to get back on and look again?? Pretty sure I was on the link you sent me. Honey Ginger would allow me to use it in music making situations, perhaps. We can’t wear scented things as it can affect sensitive people’s voices, even some instrumentalists. I used some last night and it didn’t seem quite as strong. Perhaps first time opening is worst. I am sure that strong scent would bother your sensitive membranes.
Hello all
We had a wonderful two days at the Buck Brannaman clinic. Bernard got to meet him and took his picture with him. We learned a lot, and saw many wonderful horses (and mules) I saw Fresian ! Wonderful, amazing !
We were coming home this afternoon, and it just hit me ! I am not feeling sick !!! I told B , “I am not sick” ! I couldn’t believe it. Isn’t it amazing when you have been sick so long, and then, you’re not ? You really don’t think about it.
Yes, Sue, Jim is being very extra ice to be my driver. B. keeps saying how very wonderful that is. I can’t wait. Now I have to get serious about packing. Take care ok ?
Love
Tonie
So excited for both of you sue and tonie….when are you going Tonie? So pleased you are better it’s like magic for you
Lyn hope the back is better soon and Sadie feeling good again
How long do you have to wait fir the biopsey results?
My eyes are no good so this us short,also have the neuropathy back,haven’t had it fir a few years .prickling everywhere
Chris
Chris, my doc said about 2 weeks. If I don’t hear from him, no news is good news. If it requires attention, they will call.
Sadie update: meds and rest are helping. Her appetite improved yesterday and today she is looking more like herself. Today is the Tails on Trails event our local Humane Society has each year – a walk to benefit the rescue, held on the trail we walk. We always go if we can. I thought we’ve have to miss it this year, but I may take her over after all. They have 2 lengths of walks, so I can turn her around for the short one if needed. At the least I’d like to run over with a donation.
Leaving Tuesday afternoon. Chris. Will be at Sue’s (after Jim’s pick up) around 10 or so. Hope you are feeling well. And hubby as well. Getting close to the wedding time now. tick tock !!
Thank you Sue for your wisdom and for telling the truth about living with chronic pain.
Are you the Brenda from Texas ? We have three Brenda’s. Sue wants to know how your grandson is doing ?
Writing for Sue
Tonie
Tonie
Look after yourself on the trip take care and both have a relaxing good time together
it’ll be about 6 am on the Wednesday here I think you’ll meet
Yes much nearer now to the wedding just tights and a handbag to go
Must be just one week left now Lyn it takes two weeks here too ,it’s a long wait
Chris
Chris
Made it here safely. Jim picked me up at the airport and we talked all the way here. Had eggs and toast with Sue before late late bedtime. The house is beautiful and the occupants are awesome ! George wants to eat me !
Here in the kitchen making muffins with Sue this morning. We are both tired and taking it easy today. Wish you all were here. Don’t think we have enough muffins, lol.
More later
Love
Tonie
So pleased all is well and the two of you enjoying the time..it’s good to hear
Poor George!
And good ol Jim
I can imagine sues house it always sounds beautiful
So take it easy both of you thinking of you there
Chris
Chris
Finally rested up after that whirlwind trip. Went to the pool today and got in a much needed swim. I need to watch my food for a while to take off all that good food I got fed in Oregon. Fall has fallen here in Va. we are getting our cool rains, and this Sunday, I think our first frost.
I have to go and get my blood drawn this week. I have to go back to the rheumy next Tuesday. I need to talk to her about sjogrens as well. I just can’t get enough to drink, always so dry. My eyes stick together when I wake up and my nose bleeds it is so dry. Anyway, something isn’t right.
Sue, hope you didn’t get too much sun and are resting up.
Well, tomorrow is another day
Tonie
Dearest Blog friends, Please forgive my silences of late. So many crappy health issues but one bright spot was the trip from Tonie. Since I work from a large laptop, I am convinced I need to get an ipad of some sort. Setting my computer laptop onto the bed onto another pillow and usually lying down is my usual mode. Both Jim and I enjoyed meeting our friend Tonie Dalton so very much. All three of us all talked almost the whole time. We were also all pooped out but got in as many sights as possible in three days. It was as if she and we had all been friends forever. Thanks to her dear man, Bernard, for arranging the trip for her to finally meet us. George tried to chase her every time J or I were in the room but otherwise got along fine with her…Mr. Bodyguard; short as he is. I just keep reminding myself how I would feel if I was 13 inches tall. I have thought of you, the faithful to the blog so often and when I do, I say a little prayer. Love to all, Later, have much to catch up on. Sue
So glad you all had such a wonderful visit!
Well
A good time was had .that weight will come off quick tonie you only had it for a few days
Yes it does sound a bit like sjogrens.will the blood test test for it next week
It could be secondary sjogrens becos you have rheumatic stuff….or could it be any of the meds you take and side effects
You can get an ointment to put in at night to stop them sticking in the morning ..I don’t like to use it and I’m awake most of night so I use single dose drops,viscotears, thru the night.. well.. and the day
Sue
I hope all the crap has worn off a bit and you are feeling more rested after such a busy but happy time Good memories
George had an eventful few days I expect…
Yes an iPad would be good I use one with a cover that kind of sticks to the quilt in bed so it doesn’t rest on my stomach.its a normal cover for it ,it just does it as its texture is rough inside the cover
You can make the keyboard different sizes
The screen is smaller on mine ..mine is 10 1/2 ins across the diagonal..dh has a larger one but I find that too heavy in bed.i would need that on a pillow I think….but you might find it lighter than a lap top
But you can make the screen bigger on mine anyway so easy
Are you used to apple products at all. My iPad is so good I couldn’t do without it
I would also get a long charger lead so you can use it while charging
You probably saw Tonie’s anyway
Hope both feel better
Chris
Chris
No, she is not checking on Sjogrens, doing my liver numbers cause they were up last visit. I use drops ll night, but the last sleep, I wake up stuck. I started my humidifier and it has been better, especially my nose.
Yep, she saw my ipad mini. Now they have them at Walmart, the regular ipad for bit over $300, and you can get the keyboard with them. Mine has one, but I never use it. My case has a prop to lean it on. I think she would like it.
Hope you are getting rested Sue and your mouth feels better. My time at the dentist is coming soon , unfortunately.
Well, must get moving. Lots to get done today.
Love to all
Tonie
Lyn, it was so fun, she is just like she is on here
Hi, everyone, brief update. I had a biopsy of a spot on my nose and it turned out to be another basal cell carcinoma. (So far I am still evading melanoma. 🙂 ) I had the surgery to remove it this morning, so of course, now I am feeling a sore nose and “enjoying” an RA flare. At least I know that is my usual tendency, so I was prepared. Taking it easy, waiting for this time to pass. A couple of stitches inside, 3 out this time around. pretty much straight down the center of my nose. What fun. Time to rest again. Take care, all.
That must be so sore Lyn
You need to take it easy and rest
good to get it out so it didn’t get bigger dh had a few of those off, one on his ear last year
Tonie
That weight will soon be gone all you do
I thought the separate keyboard a good idea but neve4 bought one
Those prices are good with you
Sue
Hope you managed to catchup on what was needed and feeling ok with it
Chris