Chronic Pain, the Losses and Gains

Chronic Pain, the Losses and Gains

As chronic pain patients, we have all experienced our share of losses. We have lost the ability to live a pain-free life. We have lost good health. Many of us have had to give up our careers, our doctors, or our homes. Others have lost their marriages, relationships with family members, even a sense of self.

Loss is inevitable in our situations. We don’t function like we used to. We can’t enjoy the same things – at least not in the same way. But does it all have to be about loss? I think it is time to take a step back and look at what we have gained.

We have gained a heck of a lot of medical knowledge about our individual conditions. We have gained a new perspective on what life is really about. Some of us have had to start over completely. To reinvent ourselves. That kind of change isn’t easy, but we are left with no choice. Fate has handed us a cruel blow in the form of constant and debilitating pain and the conditions that cause them.

For some of us, our journey into this world of pain was gradual. It took years for us to get where we are now. For others, it was one single life-changing event that changed everything. Some of us won’t progress further than we are right now whereas others are only at the beginning of a journey that can only get worse.

Denise Hedley

Not trying to be negative here, just trying to be real.

I won’t even get into the medications angle – that’s an entirely different beast.

The point I am getting at is that we don’t have to focus only on our losses. We can try and find joy in our existence. We can look for ways to gain, whether that be in the form of knowledge, or finances, or anything else.

Our perspectives have changed considerably. The fact that we have an opportunity to find a good side of this should give us hope, because it is only through hope that we can grow in any way.

We are all at different places in our life journey. Some are young, others older. Some of us deal with conditions that can go on forever while others have more of an end-date so to speak. No matter where you are – it is still possible to gain something.

Are all of these gains positive? Absolutely not – how could they be? But we don’t have to be negative about everything. There is a way to gain something positive, no matter how big or small it is. We just have to look for it. Perhaps we will stumble across it or perhaps we will endlessly research things looking for it.

Sometimes it is staring us right in the face. Perhaps it is a sense of tolerance for how others misunderstand how we feel. Maybe it is appreciation for how well we might be doing in the big picture. Maybe we attempted to end it all and stopped short just in time to realize that there is still a lot to live for.

Just like we can choose to laugh or cry, I believe that we can wallow in our losses or we can celebrate our gains. Which are you going to do today?

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Authored by: Denise Hedley

Denise Hedley was first diagnosed with fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis.

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Researcher on PM

When in the depth’s of pain, the brain is in survival mode. It cannot “find the bright side” or “think of another way to live or change life”.
It’s about getting through another day…and night…unless you have special powers that allow you to sleep through intense pain.
I’m sure there were no bad intentions here, but it feels condescending.
Tell my 3 friend’s who committed suicide how to improve their quality of life, or my friend with severe MS who can’t function normally in any way, can’t sleep, & entire body is in one kind of pain or another if she JUST looked on the bright side!
Depression is a side effect of chronic pain not just because of the major’s losses that come with it, but the constant blinding pain that is ever-present.

No rights in America

I’m happy if some have had gains from this situation the US Government has cast upon us but What I have gained is never going too be ok or a plus and that is the US government does not value me or people like me because I’m disabled No longer having rights in America and the Government trying too eliminate people like me No longer am I innocent till proven guilty and am condemned too die sooner then I need too while my body is taxed and just getting by every day The treatment by the Government is what I have gained and it will never be ok and is not a good thing Sorry if I can’t find good in what I have gained and that is people like me are not valued in America any more and have no rights we are condemned.

Rae

I feel you may have good intentions. Just like the CDC/FDA. However , your comments are no more comforting than the idiots who call me and addict or junkie. Four back surgeries later and I have lost my job, my home, family and all but one friend. I cry and dread life daily from pain. but sure I’ll look at the bright side. Sorry , can’t find it! Now what suggestion do you have for me?

Thomas Kidd

The other person says to just think our horrible pain away and now we are to smile it away. Sorry I have nothing else I can say.

Theresia

Although I’m sure you had good intentions in writing this I kind of relate it to some stranger in the grocery store telling you to smile. They have no idea what may be troubling you but expect you to show happiness. Makes me want to punch them and tell them to smile. That being said if I hadn’t had my kids and now grandkids and my little part time job, little jewelry business, work in pet rescue and have 5 dogs of my own, things that bring me joy, I wouldn’t have survived the 30 years of pain I’ve endured and continue to endure. But please don’t presume others have anything that brings them joy in their lives just because you do. Some have no one and are unable to even leave their homes or have a moment without extreme pain. I wouldn’t dare tell them to “smile”

Jennifer c

I really try to find joy in something everyday. But how are we supposed to function in such debilitating pain. Like at this point in my life it’s all I can do is get thru the day sometimes. And then I get more and more things wrong and I just cannot imagine doing this for the rest of my life . And not only am I in a dark tunnel my family is also. I had a son who passed away 11 years ago and I was devastated and I did not know how I would get through it, but I had some guide I was aware of the steps needed to get through. With this I have no idea whats around the corner theres no guide no map and so I’m left in limbo I do not have any control if this. And as I lose my mobility and my independence I am left just absolutely struggling I mean at this point we are just existing

Niese Cramphorn

I had a OTJ injury back in 1984. Due to a bad product being implanted I was forced into retirement by pain back in 1989. I have tried to always look at things in a positive light. If it had not happened I would not have had my twins, not been able to stay home with them, enjoyed our farm etc, etc. As of late though, I have had my husband end a 35 year marriage due to my pain and inability to do things. I don’t see those twins often, as travel is hard. I don’t see many friends as they do not want to see me in pain or hear my screams when the pain is intense. My pain meds have been reduced to a point that I hardly can see the purpose in being here. If it is just to endure the pain, I am ready to check out of this game.

sharon l schmidt

Wow! Really I have lost my quality of life giving medicaton by no fault of my own and I am going to find happiness. I have to break the law to get adequate pain control. I have to risk my life and freedom to be able to get out of bed in the morning. Tell me where the happiness is in my life.

Dick fort

Iv been bed ridden now for the last month, and my doctor has basically taken everything away that helped me I basically get nothing meanwhile I been on them for ten years, I’ll just soon become another statistic because I’m not gunna live life like this there no point what’s the point of waking up everyday knowing people are out enjoying the sun Life and I’m stuck in bed in front of a tv , [edit] that , and IV had enough [edit] guidelines from my doctor telling me I’ll take what I give u and u’ll like, and the sad part is what choice do I have well I have one but I’m trying not to do that, there’s gotta be one nice legit doctor out there in new Jersey that has to be able to work with me and help me I could get it if I wasn’t in pain and I had some bullshit injury but I’m legitimately in pain and adhere to ever rule, I just don’t get if ur a doctor and ur helping legit paitents and running pmps and random drug screens what’s the issue or problem is, this will be my last entry haha I was also told to go to the methadone clinic ahhhh wtf why should I I’m not a heroine addict I’m a pain management paitent I swear my doctor is a full blown Russian speaks barely any English and has no idea what she’s doing but shell sake that $180 dollars in cash

Kevin

Well said.

One thing that I’ve come to realize, in spite of literally incessant pain (level 3 to 8-9), I always have moments where I feel ok. Where I can enjoy a rare evening out. Where I can enjoy my kids. When I am really suffering and nothing I do, or take, makes it stop… in that horrible moment I remind myself that eventually it will subside, and, as I tell my wife, “I come back up for air.” I love those moments. I live for those moments.

Rosalind Rivera

I definitely agree with everything said by the writer however for me at least, it’s just not that simple!

JoAnne Costello

Thank you. Your words on loss summarized my situation exactly. I lost my career & financial independence, my marriage, hobbies & athletics, and almost every valued friendship that l had. It’s hard not to dwell on the unfairness of it all, but I work with an amazing therapist. With her, l am reminded that I still have much to offer as a Mom, a Nana & a loving friend.

Maureen M.

Hi Denise, yet another great and poignant writing of yours…Thank you! This is a good topic.
I have always been a positive minded person yet one who has had to live through many a traumatic time and downfalls in life. I guess somewhere along in my early life I was influenced to always find a ‘positive out of a negative’ in order to move on.
Having started my Chronic Pain Journey in 1990 I have learned tons about living with Pain. But it was when I became disabled in 2005 that I was hit the hardest, having been a nurse for 31 yrs at that point. Losing my career was one of the toughest times I’ve had to endure. I now lived on a lot less money, had to move to a cheaper rented home (more than once since!), pinched pennies, couldn’t always pay rent etc etc. It all trickled down on me over time.
I eventually had to go to therapy to help me through it and find ways to find new purpose in life.
Another hardship was my relationship with my only child (who is now 37). She and I were 2 peas in a pod with lots of laughter and support for each other. When she saw her ‘super mom’ struggle she could not deal with it and moved 3000 miles away 11 yrs ago. My heart was torn apart. I have also lost lifetime friendships. I have found that most people just can’t handle seeing a vibrant, happy person’s life change so drastically. It is sad and tough to deal with.
But at this point in my journey I hang on to the many blessings in my life, which helps me.
I live alone and most times do not spend time with another human for weeks. Life is difficult. Each 24 hours in pain is a major struggle.
Yet, I keep faithful and positive, I continue to work on entertaining myself through the day (and night! I’m up 2x night with pain), pay attention to nature around my home and find beauty in each day, educate myself/gain knowledge more and more and reach out to others.
Life is short and we have been dealt a difficult one but…’things could always be worse’ (for what that is worth).

James McCay

Some have lost many of the things you’ve mentioned, I’ve lost everything and I’m about to lose far more.
In July ’19. my medical bills finally started to strangle me, plus my mentally ill/Alzheimer’s mother w/gambling loans on the house ($360,000 worth) & her house insurance and taxes got dumped on me as well when she was FORCED into a Nursing Home because she put NO ONE’S NAME on anything! I’m her only child, well-educated and 52. Yet in her scrambled untreated brain, I wasn’t her son. ?

So she had 2 BAD falls on her head outside in Sept. 2014 (2-days in a row!). She became catatonic. My DEADBEAT selfish father in Michigan since 2002 (w/step-mother he cheated on my mother w/BEFORE their divorce in 1969) when I was almost two; never did anything to help me. In fact, he stole more from me than my gambling addict mother (and she stole $70,000 in 2012 that was GONE days later!). All the while I’m suffering indescribably with Myasthenia Gravis, Degenerative Disc Disease (six discs) & Fibromyalgia. My father died just 7-months after my mother’s catatonic state started. HOW MUCH AM I EXPECTED TO BEAR?

Next my step-mother tells me I get $500 a month forever after “dad” died (which was THE LEAST he could do after stealing $250,000+ from me): my father’s wishes (she had to make it clear this was NOT her idea). After getting near $8,000, she CUT ME OFF FOREVER in March, 2018. I’ve been severely struggling ever since.

So in desperation a friend took me to a Westchester NY Sports Card Show (my hobby since 1987) in my wheelchair. GREED had so drastically changed my hobby, that I couldn’t buy & resell ANYTHING to make a cent!
On my way out I STOLE a card I thought I could get $200 for (dumb!). I was arrested (in my wheelchair) 5-days later. They REFUSE to comply w/my medical needs w/doctor letters!

Today I have court w/a BROKEN WHEELCHAIR! Legal Aid WON’T CALL, so I emailed (7) times w/all the proof she’d need. I just need more time! NO ONE CARES!

Cindi

Great post, honest & 100% relatable! When I have a hard time finding anything positive in my ‘new normal’, I think of all of the amazing people I’ve met in my journey. From support groups to articles on this site & everywhere in between, I have found my ‘tribe’. Fellow chronic pain patients are the only people who really get it, & without them, I would be lost & alone. I’m extremely lucky to have a supportive partner, too. Unfortunately, I can’t say the same for my biological family. My tribe, all of you out there who get it, & those who support us… that’s my gain! 😊

Claudia

Denise.. Such a great article yes I have and now worse 5 neck 2 back surgeries .2 YEARS of infections.in and out of hospital s home w pic line . blah now almost 2 years no infections neck is 70 to 80 percent better .i had a spinal cord stimulator had to be taken out my back is throbbing I been getting injections forever. I NOW have arthritis herniated bulging disc L4 L5 S1 ALSO that was my 1st back surgery 7 years ago left w a broken screw major reconstruction. Back then neck I can go on but I know .. My back is throbbing I am doing everything in my power Gym physical therapy .. I missed yesterday not sleeping good 6 months I have been on the couch I pull joints and have spasam s AWEFUL I saw my PM as usual yesterday I left at 05 00 gym 1st then herbs .. I don’t overdue I do CARDIO and legs to streathen my back .. I fight everyday .. I live alone and I LOVE it I also love to travel taking a break working on me .. This pain is no JOKE sure some I know out I am sorry but you see they don’t understand .. Unless they walked in my shoes . personally I push ppl away .i don’t need toxic in my life . I am doing my own coping skill s .. The one thing I hate is you don’t look like you are in pain ppl just don’t know Gd .has TRUILLY blessed me .. I was injured at work then I was place in a lite duty position ..Now I am retired on disability I love working and I love ppl I started working at 13 wow . I must say like 26 to 30 years .i had no choice I had my 1st daughter when I was young I never took a 💊 ..until I was injured .. On the same doesn’t work even tho he up my dose nope I won’t take anything strong I do not want to be numb I want to fight for my life . so I so understand what you are saying .. It’s 05 18 in Chicago having my coffee and force myself to get out .. Start my day
Yes Iam exhausted .. But I am a people person . my Holiday begins Sunday and I am very excited to be going w my daughter to services and events thank you for that beautiful article very touchin