I’ve been living with chronic pain for over thirty years and writing about it most of that time, too. I have heard from hundreds if not thousands of individuals who also live with daily pain. That’s a lot of complaining to absorb; both my own and others. I have discovered both personally, and from others’ lives how important it is to have a spouse or significant other who is understanding, patient and most importantly of all, loving. I have also found it is often best to be alone. After all, there is so much to understand; sometimes, too much. When we take a vow “for better or for worse…in sickness and in health,” well, it’s fortunate there is no crystal ball at the church or judge’s chamber. I fear there would be a lot of “Nope” being said instead of “I do.”
Starting with the fundamentals of everyone’s life experience, we plan, we save and we hope for many things to happen in our lives. That’s just what humans do. We choose careers, colleges or vocational schools, blue collar jobs we like which allow us to use our skills or we take over family businesses. We achieve to reach goals, we sometimes succeed and at other times fail. We are all flowing in the same yet different directions as the river of life and timing dictates the scenario we find ourselves in. Sometimes we change that scenario through hard work, study and progression. Sometimes we screw up and have to change plans or simply start over. Always, we live with the illusion or perhaps, the delusion that we are in charge. In many ways it is a truth but in hundreds of other ways it is not.
Second and third chances come to all of us dressed in the differing garments of divorce, re-marriage, accidents, family changes or demands as well as the millions of vagaries of life. We are all at the mercy of wars and other disasters, some man-made and some, with no one to blame except good old Mother Nature with her nasty attitude toward we mere mortals. She can be a terrible old “bitty,” an expression my Mom used to use. This year, she has certainly been in a foul mood. If we can’t blame her we always blame God. Poor old God. He gets more complaints than the complaint department at Amazon.com. I’m sure He grows weary of hearing “Help me” far more often than “Thank you.”
I have never spoken with nor heard from any individual who planned on spending their life in chronic pain or chronic illness. Neither have any sought it out as a career unless their marbles were loose and rattling around in the buckets on top of their necks; you know those poor individuals who have yet to be caught in the net of a good psychiatrist?
Many have legitimately feared chronic illness happening based on the history of their parents or some intervention which altered their own lives when they were young but we are almost always surprised by this most unwelcome and irritating of all guests. Not only does chronic pain bring irritability but major change. We humans don’t like change; unless it’s good, like a new puppy or kitten or an enormous Christmas surprise package. Well, chronic pain is more trouble than a new puppy or kitten, much harder to train and as Christmas presents go, this one is far too expensive. Oh, if only we could return it.
However chronic pain and illness enters your life it’s a disruptive action and a huge jolt for you and I, the patients. How can it not be? While we are wondering what we did to bring this beast upon us, we are also looking for doctors, trying new meds, looking up the side effects and spelling diseases we may never have heard of while we take time to restock the Kleenex box and limp to the toilet. We always have time and energy enough to feel worthless, guilty, ashamed, martyred, bullied, pissed off, and isolated. We are suddenly pilots without wind nor thrust, Nascar drivers with a blown tire and infants without a bottle. I could write a book of all the conflicts we, the patients feel because I have felt them all and a million more.
One of the hardest things for us to remember is it also sends an electrical shock of sorts through the lives of our loved ones. Our spouses and/or lovers are hit the second hardest, with our children often in the third line of fire. How can they not be? They live with us, suffer the disruption, worry about us, have to listen to our complaints and often, have to suffer the financial loss if we cannot work. They also love us and feel a sense of loss; the commonalities of life are all askew. They wonder what to say to you as well as how to say it. Somebody has to worry about dinner. Who is going to do the dishes, vacuum the floor, clean the toilets and bathe the dog? Who is going to scrub that burnt pan that’s been in the sink for two days? Who is going to drive to the doctors’ office, fill the car with gasoline and go to the bank? Whether you are male or female, your feelings toward chronic pain are much the same as you and I have realized, everything has changed.
I hate change and like most of you, am resistant to it. You would think by now I would be used to it but it always comes as a surprise. I am most blessed of all those creatures on earth to be married to a good man. He is long-suffering until his fuse is lit, he is immeasurably patient and always kind. He’s a male so he can be subconsciously deaf and hates change even more than I. Like many males of our species he can single task only, unlike many of us women who can stir a pot on the stove, hold a whimpering child and his bottle, while helping another child with her homework…while singing I FALL TO PIECES.
I would like to share a few simple tips to live by if you are fortunate enough to have a spouse/lover who did indeed stick around. For the ones who were with louses, those who fled into the night at all of the prospects I have listed above: you’re better off without him or her. Move on. Tomorrow could be full of good surprises therefore, keep looking forward, not to the rear.
SUE’S TIPS FOR A LOVING RELATIONSHIP WHEN LIVING WITH CHRONIC PAIN OR ILLNESS.
1. It’s not his or her fault you are in pain or ill. If it is, the chances are you would have had he/she arrested, divorced or stabbed by now.
2. Stop talking about your health or pain all the time. It gets tiresome. I often need a good piece of masking tape applied to my lips to keep silent but stopped just short of that event.
3. Keep looking for help because you just might find it in the form of a new doctor, a new medication or another modality and include your spouse in the search.
4. Don’t lie. Even the smallest of lies can corrode a relationship. We live in the age of full disclosure. This isn’t a 1950’s movie where everybody knows Grandma has a bad heart except Grandma. Illness and suffering is a part of life. It may be an ugly part but it’s there…sitting at the table. You’re not the Invisible Man.
5. Continue to embrace life with your spouse or lover and do the things he/she enjoys as much as you can to get out to dinner, go to a game or movie, have friends over. Friends need to develop some understanding, as well as your family. “Spread” your understanding.
6. Stop feeling guilty because of the changes this wretched event has brought into your life. It isn’t your fault so stop laying that on your man/gal.
7. Don’t stink. Stay clean and well-groomed, get rid of those filthy old Garfield slippers and get dressed even if you are only planning or able to lie around in bed. Use some after shave or perfume, put on some lipstick (women only but it’s up to you.) If you must be in bed you can still do all of these and wear clean jammies.
8. Love your spouse/lover and appreciate them and let him/her know it. “Thank you, Honey,” does wonders for the human heart. Don’t be demanding. You are in pain, you’re not entitled or royal. He or she is doing an action or many acts for you out of pure love and practicality; if not, they would be long gone, adios, sayonara.
9. Never give up hope or stop trying to live the most joyous life you can. Remember: it is their life, also. Laugh together often by recalling humorous moments together, watch a funny movie or game show or just enjoy the antics of your pets, together.
10. Be understanding. He or she has their own pain to deal with. Don’t be it.
Well, my good friends and readers. That’s my list. I learned all of this through trial and error…his trials, my errors. I have much more to learn and frankly, so does he. I simply try to remember each day to thank God for bringing my spouse into my life 39 years ago. Ironically, we met in a hospital we were both working in and have spent far too much time in hospitals since then; at least we know the language and what to expect. Love each other and play fair.
God bless you, Sue dear. Your messages are always relevant, hopeful, and full of wisdom. You are a natural born stoic, and reading your essays is to be lifted up rather than be allowed to sink in the mire of sickness and despair.. I love the way you write, and that may very well be not only because you are good at what you do, but because you are also truthful. Honesty is so important to me, and you have no qualms about revealing your “failures” as well as your successes. You are courageous despite the rotten cards you were dealt; you are never whiney; you just tell it like it is. I could go on and on, waxing enthusiastic about your missives and how they are helping perfect strangers. Think of it, Sue, you are leaving a magnificent legacy to thousands of strangers, so, in essence, you are still the nurse, if not curing, then certainly caring. Thank you, dear friend. I think you are abundantly gifted. Phyllis Eisenstadt
Thanks for coming on. And thanks for telling our friend exactly what we all tell her. She is amazing ! Without her encouraging words, I know it would have been so difficult for me these past few years.
Please come back and see us on the site. Sue, and all of use who post here love to see you.
Phyllis, my faithful and interesting FB friend. So kind of you to take the time to talk to me on here. I love sharing my life with all of you who also understand and share yours. Isn’t that a wonderful side of humankind the ability to share both openly and truthfully regarding what we experience? I rarely read fiction because true life stories interest me so much more. As my eyesight has become so poor due to Sjogren’s Syndrome this last couple of years, I have to read only large print and/or use my Kindle so it has changed my personal reading habits. Thank you for validating what I believe is worth sharing with all of my friends online. I’m sure some of the newer readers often scratch their heads about my sense of humor. We have to have joy and laughter in our lives. I think I would be unable to breathe without it. Thanks again for your contact and remarks. Please come often. Fondly, Sue
Without understanding and love……where would we be ? No matter who it comes from, it is so necessary in our daily lives. My kids, and family really have no idea what goes on with me. Bernard took the time to read and find out. He still needs some explaining though. But, he is loving and understanding. Not coddling, but caring. It makes a difference for me. Just letting me know you care means so much more /
Hope you are feeling better. Me, I feel a bit better. Big week, busy , in front of me. So hopefully I will be fine tomorrow. I like your rules. There is a lot to be said for keeping your mouth shut and not whining.
Take care and thanks for all you do
Dear Tonie, I want to once again thank you for your technical help in posting my posts. What would I do without you? Your friendship means far more to me than you know and has now for these ten plus years we have been friends due to this bit of my writing. The Lord does indeed work in such wonderful and mysterious ways.
My left knee, rear side with the Baker’s cyst is very swollen tonight and painful. Sure hope these shots are going to help. Just think, I used to get compliments on my legs…well, those days are gone. Hope you feel up to doing all that’s needed tomorrow on you schedule. Rest well…as you are now with our three hour time difference. Love you much gal, Sue
I have been following you for a very long time and you are the most amazing person I know. You have so many illnesses and yet you take time to minister to all of us. The Lord has blessed you with wonderful talents…a nurse, writer, healer to people you have never met. I could go on and on but I think everyone that reads your FB posts and your essays knows this.
Being blessed with a great spouse makes this journey somewhat easier. My husband was told by a high school teacher to make one person laugh each day. For the forty eight years we have known each other I can attest to his doing what he was told. Of course life has not been one big party. After all it is a roller coaster ride at best. But without my husband I would have jumped in front of that ride and waited to be run over. And yes I thank God all the time for putting us together.
As we both age (I 70 and he almost 77) we do seem to have less patience with each other but we also are much wiser and walk away for a few minutes. That is usually long enough for us both to forget what we were annoyed about.
Of course we are not perfect and sometimes I think after all these years that he doesn’t really understand just how much pain is associated with my Fibromyalgia. But if you are not the one with this insidious disease you simply cannot know what we deal with.
Marilyn, Well, sweet FB friend, wonderful to hear from you on the blog itself. I am sorry your pain from fibro is so severe at times and you’re right. one really has to experience it for one’s self. How blessed you have been to love and know and be loved by your dear spouse. We are among the blessed, you and I. I know we’re supposed to live a 50-50 relationship but so often in my marriage I have put that off balance with so many problems whereas Jim will keep something to himself until it’s so horrible he has to go in like last year he sat up half the night saying he was alright when he had a pulmonary embolism and pneumonia then drove himself to the doctor’s office with an oxygen saturation of 72%. There are many incidents of this I could name like his kidney stone, two broken shoulders…finally went to the doctor for the second one…they were a year apart. Maybe some of it with my male is that he is an RN and diagnoses himself. All of us nurses do sometimes make difficult patients, I confess. So good to hear from you and I do hope you come back on here. We have a few folks that read the blog who are not on FB but not many.
Do be good to yourself and that great guy of yours, Fondly, Sue
I empathize with you in the Fibro pain. Sometimes it is terrible, even with meds. True, it is difficult for anyone to understand unless they have experienced it. My guy researched it all and has much sympathy for me and anyone who has this. He read about where they used to lock you up in the mental ward because they could find no reason for the pain. He was shocked at how many DRs still don’t believe it exists. I know I saw my share of them over the years before I was diagnosed. Did you ? Nice to see you here. Maybe we can find some ways to help each other ?
Good advice, Sue, nicely done! Yes, I managed to get on despite the spotty internet. I am on a get-away with friends of mine in the Outer Banks! They just bought a house down here last spring, were coming down this week and invited DH and me along. Unfortunately, DH was unable to take of that much work, but graciously said I should come down. I needed to get away, so I took him up on it. Weather has been a bit all over the map, but the company and food have been outstanding, and walking on the beach… my happy place. Restorative. We need that, don’t we? I pray some restorative moments for you and all who read here. Many blessings!
Lyn, I can tell form your FB pics you are having a wonderful time at the seashore. Hope you’re resting, eating wonderful food and enjoying your friends. Love, Sue
Forgive me I haven’t read the blog yet my eyes are bad ,but will later today. Have dre appt for DH then dare I say it I have a free day
The test I had sue was a colonography ct scan .you take the liquid prep the day before and no food really .then on the day they pump you with air thru a tube and take the ct scan.the prep has iodine in it to help them see..they couldn’t give me a muscle relaxant for air for of my irregular heartbeat…my hip she pressed on the bones to see if I was on the scanner properly..she forgot. About my hip…so that was a bu..er…of corse you have to like and roll on your hip with these awful gowns on
Don’t know is Apple converting my typing can’t read properly ..
I hurt my hip when I was away by bashing into a chairs back the corner of it was hip height just didn’t see it ..
Yes it’s steroids spray again for six weeks and it is a much stronger one..not starting yet not up to any blimmin side effects ..
Surely sue your knees will get better …what does the dr say who puts inj in
Can’t really reread this so hopeful its readable
Back later to read up and all posts
Chris dear, I did finally answer you on the last blog. Your hip sounds very painful. I know they are sensitive anyway, or is it just one of them? Indeed, I don’t know abut your hospital gowns but our over here, in this area are so big I can wrap one around me twice and have snaps all over the place. Hideous things. I think if I had to choose I would choose the old ones that came in approximate sizes. Your test sounds very uncomfortable. What are they looking for?
Your poor nose. Is your doctor who keeps ordering the steroid spray an ear, nose and throat type or your rheumatologist? I understand about the side effects and am puzzled as to why they are ordering it again if it didn’t help the first time. Some of the gals I have met on a SJogren’s site recommend coconut oil as soothing for nose outbreaks and dryness so it might be worth a try. I don’t see how it could hurt. It sounds like your eyes are worse. I pray not. I find mine so much worse when I have been out somewhere or visiting and haven’t hydrated enough. I now carry a bottle of seltzer water with me everywhere I go. I have to remember to drink we I awaken at night, also. Had a scary incident a couple of days ago with a new muscle relaxant called tizanidine that dried me out so badly I could hardly speak. Awful dryness and made swallowing difficult. No more of that crap.
As far as my knees, I’m discouraged. Last injection was the physician’s assistant and he gives more shots than the doctor does but haven’t seen the doc since the first time. Dreading shot in left knee tomorrow. Still hurts. Right knee better. Would be great to have them both good…we will see how it goes. Let us know how you are and about any test results in a couple of weeks. Love you, Sue
Well got around to reading
It’s a great blog of how to live with humour and a guide to find it..it so true all of it.l loved it and I think I fall down a bit in some departments ,but I’m learning as I go…along with your cheery and helpful honest blogs
Hi to all on here and Lyn have a great time there
Chris, thanks for your kind remarks about the blog. I fall down and fall short often. Marriage is not easy under the best circumstances and none of us are ideal with bad health. Love, Sue
I’m interested In the coconut oil. Do you know how they put it on and how much I would try it see if it helps. Smells hurt the lining_ no the dr is just my normal gp I see ,but she will refer me
I so hope the inj is good tonyou tomorrow
It’s a surveillance for polyps they keep finding them in the colon
Eyes have drops in so having btrpuble seeing
Chris, Coconut oil just to tolerance. A few drops dabbed on. Don’t want to inhale it. Worth a try. I appreciate good wishes for tomorrow. Hope you get referral soon or at least eliminate an infection for your nose. Sounds like a SJogren’s reaction to something. Drops…always. Love, Sue
Would putting it on a cotton bud and in your nose be ok or is it on the outside of nostril
Chris, They use it in the nose, mostly. That’s the most common problem. Your problem is a bit unusual I’m afraid. You can use your end of the finger in the nose but for outside if infected at all, cotton swab is fine. Sue
Thank you sue I’ll get some and tr6 it
Dear Sue, I have had some experience with the gel injections in the knees. First time was 5 years ago. The right knee worked fine until about a year ago, can’t say the same about the left. The pain from the first shot was so bad I refused to do the next 2.
Anyway my knees got so bad this last year that my D IL persuaded me to get both knees done again. The shots went fine this time, but it’s been over a month now and have not seen much improvement My DIL had hers done at the same time and is quite happy with the results. It takes a week or so after the last shot , so be patient. As always you are in my thoughts and prayers. Love. Janet
Janet, thanks so much for sharing your experiences and your DIL’s. Just got home and didn’t send me through the roof like last week but he shot the left one, my bad one, in a different place. Now I wait but didn’t cry walking to the car so that’s a good sign. Today was third shots.
This whole knee bit is sure a bummer on top of everything else, especially in this old house of our. My love and prayers for you as always, also. Sue
Well I got some coconut oil ..one that doesn’t smell.. But I also got some manukau honey.so I’m trying that first as that’s for infection .and see how it goes..it’s pretty bad at the moment .mybeyes are all puffy and dark circles with it as well my nose swollen
Sue that sounds a good start after the injection…..
Well gonna try to sleep Chris
Chris, don’t you think it’s time to see an ENT doctor? If it is an infection, you don’t want it going any further. Glad you got the coconut oil and pray it helps. Be sure to keep your eyes moist with drops. Worried about you. Love, Sue
The dr said antibiotics wouldn’t help this.maybe I’d better try that spray..mt nose is very twisted at the bottom
She said she would refer me if it didn’t work……
Tried the honey up my nose…not sure..the q tip I put it in with ..when it touches the inside its sore ….it’s the coconut nxt I think ..I’m always putting drops in my eyes
How’s your knees ..
Chris, Is that because you can’t get a referral without trying the spray AGAIN? No…..honey on the outside but coconut oil on inside okay. Is the inflammation which might be infected on the outside? Sue
Really good advice, Im lucky to have had a man who has stuck around during my painful year and put up with my moans and groans , but also one who definitely is a single taster and its good to know he’s not the only one.
Rosetint, you are blessed and know it. Good to see you’re catching up..Sue
He sounds like a keeper!