HealingWell
Search Close Search
☰

TROUBLE GETTING MOTIVATED...

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/8/2016 4:03 PM (GMT 0)
Hi all , I am new to this forum , and this is my first post.
I have issues with almost constant pain. I have a total of four compression fractued vertabrae ( fully healed ) and have a tentative diagnosis of rheumatoid arthritis. I have been waiting a year to see a rhuematologist , and will not be seeing one until January 2017. With the exception of my feet and hands I have pain in most all of my joints, and am currently on 25mcg of fentanyl.

I have observed my ability to walk distances fall from about 2 km a day several years ago , to now , where I can walk about 1/4 to 1/2 km
at a slow pace , assisted by my cane. I am 52 years old and single with a cat.

I am seeing my family doctor regularly ( ~ twice a month ) and he has been increasing my pain meds for several years now.

The thing that is bothering me the most is depression about my situation. I have very little family support , and live a quite life on long term disability. For about the last 6 months my mood has hit a very low point. I take Effexor ( 300 mg ) for my depression , but it just isn't helping much. I have a very difficult time getting motivated and out of bed most days now. I know my depression is directly linked to my disability , but I have been sinking deeper and deeper into this depression. I am starting to see a psychologist later today , but I am on here to ask for any kind of help that is offered to alleviate my depression. My concentration has been poor since this depression has set in , and I can't concentrate enough to read a book ; only short magazine articles.

I feel pretty sure that other forum members must be dealing with depression brought on by our illness , and I am asking for any advice on how to shake off these blues and start enjoying life again. I feel pretty lost and am growing hopeless, so I am asking for help or ideas that will lighten my depression.

Thanks in advance ;
Derwood ( my knick-name ) sad




I have made a couple of paragraphs to make your post a little easier to read. Some of our members have tracking problems when reading. Thanks.

Post Edited By Moderator (straydog) : 6/8/2016 4:12:48 PM (GMT-6)

Posted 6/8/2016 7:17 PM (GMT 0)
Derwood:
Perhaps becoming engaged as a volunteer would help you reclaim a sense of purpose?

You obviously enjoy animals. Would you be interested in working as a volunteer for your local humane society? My mother is an active volunteer in the "cat-ery" of the Oregon Humane Society. One of her daily tasks is to make disposable liter boxes for the small kittens out of newspaper. She also sits in a rocking chair, holding and comforting the young kittens.

Do you like children? You could volunteer with elementary school children who need reading buddies, mentoring reading and vocabulary skills.

My brother volunteers 2 x a week a a local nursing home/rehabilitation center. He reads the newspaper to one gentleman who has macular degeneration and vision loss. My brother has read the newspaper to this one particular gentleman 2 x a week, faithfully, for the past 3 years. The two of them have developed a sincere and genuine relationship between them that is quite precious. My brother has given of generously of himself and of his time but has received much in friendship many times over from the elderly gentleman.

I bet that you have a talent(s) or natural inclination(s) that would be of great benefit as a volunteer.

In order to begin to re-find your life, look outside of yourself. Take a small step. Build from a series of small successes.
- karen -
Posted 6/8/2016 8:39 PM (GMT 0)
Thank you for the reply and suggestions Karen :)
I think you have provided some great advice. I think I would enjoy
volenteering. about 20 or 25 years ago I volunteered at the local
humane society , and it really was enjoyable. I also like the idea of
reading to a vision impaired person. I actually have a bit of experience reading to a bedridden person ( I read the original , complete Tarzan book to my mother when she was terminally ill back when I was 20 ).
I saw a psychologist for the first time today , but of course it took
the entire session just to let the doctor know where I am in life. I am hoping she will be able to offer me some direction with my troubles. In the mean time I will give serious thought into doing some volunteering , and I have to make every effort to at least get out of my appartment every day.
Also , I will endevour to take a step every day.
Thank you so very much Karen.
Derwood
Posted 6/8/2016 10:01 PM (GMT 0)
Hello Derwood & welcome to Healing Well. Glad you found us but so sorry that you have a need for a forum such as ours. A few things we understand here is pain, depression, motivation issues & anything else related to living the life of a chronic pain patient.

So glad to read you have sought out some help with the depression by seeing a psychologist. I did the very same thing & cannot tell you how helpful she was. She could put things into a perspective that I couldn't do on my own. When I sought her out I had reached the lowest point of my life & truly felt like I was drowning. I spent a year in pajamas & bed. The only time I actually dressed was to go to a drs appt. I was grieving over my losses such as not being able to work any longer, I had cut myself off from the world, the phone stopped ringing because most of the friends got tired of their invites being turned down. When depressed we tend to isolate our self & that is one of the worst things we can do. I was 50 when my gi dr said you need to retire & file for Social Security Disability. He said I will do anything I can to help you get approved. He said I am a firm believer that people do better working but its just not working that way with you at all. In fact I was his 2nd patient ever that he made that recommendation to. It was a huge hit emotionally. From what I learned with help we go through a grieving process & thats so true.

I do hope that you have found someone that can give you some direction. Give it a few more visits to see if you feel this person will be a good fit for you. If she does great, if not find someone else. I wonder if your dr needs to try you on a different medicine. They certainly are not a one size fit all type of thing.

You mentioned little family support. If this is siblings well let me say this. Most likely they do not have health issues like yours. Most people do not understand chronic pain because its not something they can visibly see & they just can't seems to wrap their brain around it no matter what. By chance with the depression raging have you pushed them away without realizing you had done it? Just know you are not alone as this very thing is usually at the top of our list not having family support.

Years ago I started making myself leave the house. A lof of time was spent at Lowes or Home Depot walking around looking at things. Didn't cost anything to look. Three years ago I started keeping my grandson after school. That was the best move for me ever. He is 11 & we have a great time most days. He is my best medicine ever. There are plenty of days I wake up thinking I really cannot do this, but I make it through because I am determined.

Karen gave you some great ideas about volunteering. We have had several that volunteered at animal shelters. I remember one lady use to take them treats, lol. They loved it. Prior to the health issues rearing their ugly head we all stayed super busy & on the go. Now, I am slower but I get it done in a different way & thats ok too.

Take care.
Posted 6/9/2016 3:26 PM (GMT 0)
Hi Suzie and thank you for such a warm welcome and for sharing your
insights. I'm glad I found you all too. I wouldn't even be out of bed if it
wasn't for you kind help. I only rose out of bed when I read your post...
I knew that I had an important thing to do in replying to you. So I am
finally out of bed and have started my day - thanks .

Your personal story is similar in ways to mine. I have tried with every effort to get some help from my family , but perhaps it is just like you say ; maybe they have no idea of how it feels to endure this plight alone. But I still can't help feeling hurt and sad that they aren't making an effort to help me. I should mention that about nine years ago I was hospitalized because my anxiety and depression had driven me to serious thoughts and an attempt at suicide. Because I was suicidal before , I sort of expect them to know how poor my moods are and try to help me. It seems that I have to go through this without there help ,
and that sort of adds to my depression.

I am now living with a sorrow that is only absent durging my sleeping
hours. I think that is at least part of why I find it difficult to get out of bed most days ... I just want to return to the land of sleep.

I have to admit that I am a bit dissapointed with my first session with my psychologist. Although she helped me the past , I had not seen her
for about 4 years , until yesterday. As I expected , it took the full session to explain where my life is at now , but I thought she might offer up some sort of challenge for me to do during the time that I am waiting to see her next. So I am now relying on this forum for some direction and help, at least until I see her next.

As far as the meds go , I think I have been on most of the usual anti-
depressants , and I honestly don't think they help much. I feel that a drug change would be good , but I also feel at times that I need to be admitted to the psychiatric ward while my meds are adjusted - the staff should be the best at deciding if my mood is improving. At the same time , I have a strong reluctance to be hospitalized again , as it was 3 long months of hospitalization the last time , and I did find the whole ordeal tough. So I really don't know what to do about my meds.

You asked me if my depression might be driving my family away. The sad truth is I have told them all ( 2 brothers , father , fathers girl friend)
that depression has grabbed me again , but still no help. I feel sad , because I would be there for them if the shoe were on the other foot...
It is a deep sorrow to learn that my family is not there for me. There is one exception , and that is one of my brothers. He is always there to answer my texts , and visit me if I ask. Thank goodness I have him. I find it very interesting that the feeling of being alone family-wise is a common issue among forum members. Most importantly , I really appreciate your offer to not feel alone. That may sound a bit silly , but it
is this sort of thing that really does help me. Genuine care , concern ,
and good advice. :-)

I guess my big chore ahead is to get out of the house for period of time each day. I am only used to going to a couple of favoured spots
( a particular diner , and shopping mall close-by ) and I think I have to
start going to other places and expanding my horizons. Now I must try to think of something positive to do today. Perhaps I will report back that I had ax great afternoon or evening?

Thank you soooo much for sharing and caring.

Derwood
Posted 6/9/2016 4:47 PM (GMT 0)
I am back ( only 2 hours since my last post ) but this time I have a specific question. It relates to my current pain med , which is fentanyl 25 mcg/h , changed every 3 days.

My question stems from reading the thread " tapering of off fental " by bigecase. Up until two weeks ago my pain meds were
90 mg morphine sulfate ( slow release ) with up to four 5 mg morphine sulphate PRN. Asking for more relief , my doctor prescribed my current Fentanyl perscription. I am not feeling any different than when I was on the morphine sulphate , yet I am reading scary facts about Fentanyl ( thanks for shareing , bigecase )
including the death of Prince recently.

I am of the feeling that I could simply switch back to my previous med plan , but when I read about how adictive Fentanyl is , I worry that my lack of concern in taking fentanyl could be an error on my part. At the same time , I am still in quite a bit of pain most of the time.

Should I have a concern that I am taking Fentanyl? Also , my doctor said that I can continue taking up to four 5 mg quick release
morphine sulphate tablets dayly PRN. Is this a safe combination? I am taking the 4 morphine tablets each day while I continue to use the fentanyl patch , as I find this combination does make my pain
drop to a manageable level.

I am also looking for advice for my next doctors appointment. My instinct is to tell the truth - I would like more pain relief. Should I expect that my doctor might agree , and double my dosage of Fentanyl? Will he be concerned ( and should I be ) that I am still in pain most of the time? I have read somewhere that 100 mcg/h is only given to cancer patients... is this true? Should I have reservations about asking for more pain relief? I fully expect to need some form of pain relief for the rest of my life due to my condition.

Really hoping to get some insight into my ( above ) questions, and
I want to express my gratitude for the help I am getting from this forum. I hope that soon I will be able to offer some of my experiences in some threads.

Wishing everyone a good day ;
Derwood

PS- thank you for your guidance straydog.
Posted 6/9/2016 8:29 PM (GMT 0)
Hi Derwood, let me ask do you live in the states? I am asking for 2 reasons. Here in the states there has been a war on drugs going on for years with DEA heading things up along with the CDC coming up with new prescribing guidelines that most drs go by now in treatment of chronic pain. It has made a huge impact on many chronic pain patients. Drs are more restrictive in what they will prescribe. This war on drugs is not about street drugs at all. Its about what they have termed massive numbers of people being rx'd opioids has reached an epidemic state. The 2nd thing is your long wait to see a rheummie. This is why I did not think you lived in the states.

You asked about Fentanyl, yes it is a very strong opioid that can work very well for pain. Used responsibly you should not have a problem. Should you be concerned about using Fentanyl, unless you plan on abusing it, I would have to say no. Any of these medications can be lethal if we don't take them as prescribed. You are on next to the lowest dose of Fentanyl, it also comes in 12.5mcg. To me its one of the smoothest pain meds out there. I was on it at one time & suffered no ill effects when changing to something different. No chronic pain patient will ever be pain free unless they are so overloaded on pain meds they can't function. If a person expects to be pain free because they take medication that will not happen. You may want to consider talking to your dr about increasing your dose another 12.5mcg. Thats in addition to the 25mcg. I would expect him to decrease the BT meds if he increases the patch. Its a give & take when you start adding one, they will decrease the other. Know nothing about the 100mcg being limited to cancer patients have not heardof this.

Big's dr tried taking her down too fast when she first tried to get off of Fentanyl. You cannot do that on a medication like that. A slow taper is needed. Same with Morphine & many others. Some drs think telling the patient to go cold turkey, just do it & get it over with, sorry thats just wrong. There are some medications out there to help a person get off of pain medications while doing a slow taper. As far as Prince goes, we do not know the whole story there & most likely never will. Lets be honest, his Fentanyl was not the same as what he got at one time from his local pharmacy. There is no telling what all was in the Fentanyl or how or where it was made. Of course the media always like to hype any death where drugs are involved.

One of the biggest factors with your pain is that your depression is not under control. Usually once we can get our depression under control we find that our pain level drops somewhat. From what you are saying is going on with you & the depression its not surprising that you pain is not under better control.

Try not to let the visit with the psychologist get you down. Since you have some history with her she most likely was trying to get a feel for where you have been & where you at now.

Have you told your family you would like some help from them? If not maybe you should. They could be scared for you & not know what they should do.

Try going to some different places instead of the same old ones. This is going to be hard but you will have to push yourself. When I worked I was use to getting up & dressing myself for work every day. I stopped doing that, instead I stayed in bed in pj's. My psychologist said get back into the routine of getting up as you did when you worked. Then you will be more apt to go somewhere & she was right. Staying as active as you possibly can will help. Go buy some cat or dog treats take them to your local shelter you will be glad you did. Two things that are a must stay out of the bed & get out of the house.

Take care.
Posted 6/9/2016 10:36 PM (GMT 0)
Hi and thanks Susie.
Your perception is sharp:). I live in PEI ( Prince Edward Island )
Canada. PEI is a small province ( and island of course ) on the east
coast , about 450 miles north of New York city. The problems of pain
medication in general is a well know issue here in Canada too.

I have learned a great deal of valuable info at this site in a very short time , and I am not surprised that my questions are a bit naive. Thanks for the perspective. I feel fine and positive that I will
ask my doctor to increase my patch ( fentanyl ) strength next time
I see him ( next week ). Without your help in your last post I would not feel this way. I am going to ask him if I can still keep the four
5 mg tablets of morphine sulfate. Today I learned about break-thru
pain , and it made me think that I am not at a high enough strength
med because I require these meds ( morphine sulphate tablets ) every day. I will be discussing all of this with my doctor when I see him next. I will share my results here after my next appointment , and share my doctors thoughts with anyone who reads this thread.

As far as the very looooong wait to see a rhuemmie ... I am not at all impressed with such a long wait for something so elementary to my health issues. But I have no other option and so I wait.

Again I mention your observance ,because I am thinking you are correct about my depression. Your observation has made me aware that you are correct. My level of depression needs some first-aid help :). This is good to realize ; now I can work on improving my mood. I actually considered entering the depression site instead of this constant pain site. Maybe I will check that site out too ;)

Thank you.

Derwood.

PS - CATS ROCK ! !
Posted 6/10/2016 4:33 AM (GMT 0)
Derwood:
in reference to the end of your post . . . PS: Cats rock.

Below are two few fun ideas for you and your cat to pursue.

• Fast Cat: The "Fast Cat" is an exercise wheel designed for cats. It is analogous to a wheel for hamsters and gerbils. My mother/father purchased one for their cat a while back and the cat took to the wheel like a fish takes to water.

www.fastcat.com

• Relax My Cat: This is a You Tube web site that provides several compilations of music for cats. My little dog, Molly, sleeps a deep and restful sleep when the Relax My Cat music is on.

www.relaxmycat.com

I hope that these 2 seemingly inconsequential items provide you with a springboard to finding small moments of happiness and joy.

I am 55 years of age. Not too far ahead of you in age. I am on palliative care (care and comfort) due to frail health.

I am on the fentanyl patch and find that it is a good "fit" for me. It provides a constant dosing of narcotic, avoiding the peaks and troughs that can come from short-acting medication.

Each day I get up out of bed and put both feet on the ground. I live each day with the affirmation to "do my best."

Keep a simple focus. Strive to do your best.

Identify 1-2 simple goals. Build from these small successes.

You are among friends here.
- Karen -
Posted 6/10/2016 11:17 PM (GMT 0)
Hi Karen ; thanks for some great ideas. I must admit that my cat
Lupin is my best friend :). Without stating this , it would have just naturally came out somewhere in my posts. This is not such a bad thing ... far worse to have no best friend. Many days my cat is my main reason to carry on. I don't like to think of what might happen if she passed on , so I don't dwell on that.

While I think my Lupin is a bit to sedentary to get into the ball device ( I have seen them before ) ,I have been using an app similar to relaxmycat for about 6 months now. She really likes it ; it works like a charm , and I can control the sounds and volumes from about
50 different sounds , all blending together , and playing until I shut it off. I play it for Lupin almost every day...she loves it....starts her purring , they she is soon drifting off:)

Yes , we are verry close to the same age. We are most certainly off the same era :) We have lived thru some fun and exciting times. I really enjoyed the 70's and 80's and the 90's were quite good for me too. I had my full health ( mostly - except for minor anxiety and depression , but no psyical ailments. Good times :)

I am sorry that your condition has you under palliative care. Is it comforting and a bit distressing at the same time? I ask for reasons of concern , and because I seem to be progressing that way too. I am currently not doing a good job of staying ahead of my dayly chores, but perhaps that will improve if I manage to get my pain AND depression under better control.

Although I haven introduced myself to the depression help-site yet , I am going to do this soon. Today was initially a poor day for me , but I have decided to simply stay home tonight ( I was out for a short time today ) with Lupin , and do some reading. Reading , when my mood is a bit better , is a really big help for me in dealing with my days. A little bit of escapism I suppose :).

I hope it is not against the rules to ask how your day was ? As I read your most recent post to me I realized that we both may have parents ( father in my case as my mother is deceased ) that are in better helth than us. Life offers no gaurantees I know.

Most importantly Karen I want to thank you for your great ideas and your kind words of encouragement. It really was nice read your post , and I see that you are a very kind and carring person. It is a pleasure to be a part of this forum , and your final words offered me a lot of confort.

As far as my slightly down mood today goes ... I am going to try to do a better job of persuing happiness tommorow. Tonite is a night for Lupin and I :). Being able to confort my sweet little Lupin is one of my great joys , and I always have her needs near the surface of my conciousness. It is a give and take relationship that we have , and it conforts me greatly that Lupin knows what " bedtime " means and just loves it when that time arrives. She curles up next to me each night and I shower her with soft oetting , telling her I love her, and wrapping my arm or hand around her as she and I slowly purr our way to sleep. She is with me the entire night , every night.

Wishing you a pleasant day and evening ;

Darren.
Posted 6/11/2016 4:15 AM (GMT 0)
Darren:
My tea-cup Maltese, Molly, is - unequivocally - my best favorite friend.

Molly is a 6 pound bundle of soft white fur, with a jet black nose and jet balck eyes. She keeps me smiling when my body is at odds with itself. Molly is akin to the character by Dr. Seuss, Horten the Hoo - faithful 1000%.

I share with you the bond and love with a pet. I am so glad that you have Lupin. The love of a pet is like no other.

I take Molly almost everywhere with me. She rides in a pet stroller - which I think that she prefers to a ride in the car.

My on-line name is in honor of our family cat, Seashell - a tortoise colored, long-haired cat - adopted through the Humane Society. This cat has a true soul. I think that she is one of God's anointed angels.

I will make no pretenses. Living with serious, life-threatening chronic illness - as I do, as many people do - is riff w. It is no picnic.

I suffered a near death experience when I experienced an extensive intestinal perforation approximately 5 years ago. I have always considered myself to be more spiritual than religious, per say. The near death experience changed profoundly the perceptual lens by which I view each day.

My life's purpose has not yet been fulfilled. I still have some specific tasks yet to accomplish. This was made clear to me in the near death experience.

I also have complete pituitary gland failure with broad endocrine dysfunction; Addison's disease; and mixed connective tissue disorder, an auto-immune disorder related to Lupus. Long-term use of prednisone has resulted in avascular necrosis of my hips and jaws. My bones are crumbling. I was a former marathon runner, so the loss of walking with ease has been exceptionally difficult.

While each person on this forum has a personal story, there are filaments of commonality that binds ever

I appreciate the internet and the availability of support forums, like this one. Who would have thought that I would "meet" like individuals who live across the many miles. People who genuinely care. It has restored my faith in humanity.

The Beattle's song says it all: "All we need is a little help from our friends."

Sending Lupin warm chin rubs,
Karen and Molly the maltese ^..^__/
Posted 6/11/2016 9:45 AM (GMT 0)
Derwood, just a word of caution on your appt next week with the dr.. There is a chance if your dr increases your patch he may cut you back to 3 BT meds per day. If you were in the states this would. Not knowing how hard they are cracking down in Canada, it would be a reality here with the prescribing guideline they now use. The BT meds should not be taken every day on schedule that drives the body into needing that dose every day. Its for when a patient has a spike in their pain that the extended release is not covering at the moment causes pain spikes. This is where a lot of people get in trouble because they are basically increasing the dose & that can cause tolerance issues to happen a lot quicker.

I too have a pet. I have a Brittany Spaniel that is absolutely rotten to the bone. We would not have him any other way. I think any CPer that has a pet will tell anyone what a comfort they are. Just cannot imagine what it would be like around here without him.
Posted 6/11/2016 11:05 AM (GMT 0)
T have followed your thread yet refrained from replying as others have covered nicely the things we have found that help us to crawl out of the hole every day. I will say that depression and pain are closely related and I would be inclined to add that when you get the depression under control some you may find your pain easier to manage. The more we tend to sit around or lay in bed with little motivation or desire to move around the more pain issues we bring on not to mention the other things that tend to go hand in hand with depression such as poor eating habits,lack of desire to do or try things that could alleviate even a small amount of pain and those thing's add up at the end of the day lowering our overall needs to medicate. Simple pleasure and joy causes the release of endorphins in turn lowering pain even a notch and thats a notch that won't require treatment with medication. Exercise as well even hydrotherapy,low impact aerobics,walking,release endorphins and simply reading a good book that evokes emotion in some form,horror,suspense,sad,intimate,they all refresh memories of familiarity to real life experiences and those trigger again endorphins. So there are many ways we help ourselves pain wise by simply finding the steps that lead us out of the hole of depression we commonly sink through grieving for the loss of ourselves and the dreams we had of where we should be in our lives. Grief is exactly the process we follow as we in our pain and disabilities lose many of the things close to us that defined our lives and who we are.

My children were mostly grown the last few years although I raised all of them as a CPer,one since birth and finding I nolonger had a reason for getting up,eating,taking care of myself daily sent me spiraling out of control and depression was rampant causing all kinds of physical issues. With the help of a awesome therapist I climbed up and back to living by learning some great distraction techniques and finding things that triggered that joy and happiness and instilled the need for me to have to get out.

I'm a active member of CCFAW(concerned citizens for animal welfare) I have anywhere from 2-10 foster animal's at any time,trained to bottle or tube feed abandoned animal babies and have a registered colony of feral cats I feed and care for upwards of 20. I participate in the TNR(trap,neuter,release) program and over the last few years have been responsible for spaying and neutering close to 100 feral cats. I also have 7 cats of my own and a dog. They are the reason I get up everyday now,LOL usually up feeding every hour during the night if I have babies. I also belong to Lost pets group who helps folks with information and connections to finding their lost pets.

I really don't know what I would do if I didn't have them to motivate me. I know since taking them on my meds are at a all-time low then since starting this wild journey with CP almost 20 years ago and I use to be one of the highest daily doses here in the forum. I don't use b/t meds at all and haven't for a few years and I take less base med then I use to take in b/t one dose. I rarely have time to think about the pain issues and when I have no choice I use distraction techniques.

Like Susie and the more active here we have found staying that way as much as possible is key sometimes to pushing through the rough spots,we have accepted our lives will never be without pain of some degree and that meds alone can not ever bring us to a pain free place but that each piece of the pain we can control ourselves leaves less for our meds to fight.

I wish strength and good luck to finding that which will set you closer to the secrets of learning to live with chronic pain as your shadow but most of all the ways to defining your pain and depression so it doesn't define you...
Posted 6/11/2016 2:53 PM (GMT 0)
. Good morning Seashell ( love the association to your cat ), Straydog , nvrthesame98 and everyone else. First of all , let me say that finding three replys on my thread this a m is quite a joy:) and
pleaseant surprise. This is particularly true because of my poor mood that I woke with. Most mornings are my toughest time , but today was a bit worse than usual.

Each of your posts has been a real joy to read , even if some of the nitty-gritty of our life stories is not pleasant. I suppose none of us would be here on HW if things were completely peachy in our lives. I mention this because , with so much information in your three posts , I'm affraid I will miss responding to a post in some way, but please be assured that I have absorbed and enjoyed reading your posts and gleaned some helpful info too.

Straydog , I really don't know what to expect my doctor will do as far as my medication questions go. But with your perspective and my previous experience , I wont get my hopes up too high. I am slowly becoming aware that I will seldom be pain free again. I have to admit that I have a difficult time with accepting this.

The main reason I am having trouble accepting that I may never
be pain free again is that I am single , and I have no assistance with my dayly activities. My housecleaning has fallen behind , and most of the things that I used to like to do ( working on cars was a hobby of mine that is gone , for instance ) are gone too. I can afford to hire a cleaner to come in once a week , but have been putting that off with hopes that my doctor will help me be pain-free. I guess I had better forget that mirage? Alao , it is hard to know who to trust when selecting a housecleaner. Perhaps Dr Beck ( my psychologist ) can offer some adice on that front.

I find it almost stounding how much animals are a part of all four of our individual lives. I know I shouldn't feel surprised , because I have always had an easy and fun relationship with animals , one that started with my families first cat when I was ~ 5 yrs old , and continuing all through my life.

I will share a little true humour. My very first girlfriend gave me a
five month old kitten as a surprise gift many ( 27 ) years ago. My girlfriend and I stayed together for two years , but my cat was with me for 17 very good years! I realize that this may sound a bit sad , but please realize that my 1st girlfriend and I just weren't right for each other , but Whiskers ( my gift-cat ) and I were a purrfect team. No sorrow :)

I wish to express how much your posts have been helping me. Lots of great facts about pain , and lots of care and support. I absolutely love the way so many kind posts end. Almost always a shared peice of wisdom or a simple wish that we have a good day , and one of my favourites : we are all here for each other,
as well as Karens " you are among friends ". This REALLY makes a positive difference to me , and I see it in other threads as well ( of course ).

I have made a decission to keep active in the " Chronic Pain " site
and to open up a thread in the depression site as well. I feel that I need help on both fronts. I have some specific questions about mobility aids but I shall leave that for anouther time. Wishing you all a wondrous , happy day ,

Derwood.

PS - I am going to tell you all a little secret in honour of Seashell,
Molly , Susies' Brittany Spaniel, and Lupin. My knickname has been with me for almost 50 years. When I was very young my family used to watch the television show " Bewitched " and as some may
recall , Samantha the good little witch had a husband named Darren
and his mother-in-law always deliberately messed-up his first name,
usually calling Darren " Derwood ". Lights coming on for some ? Well my real name is Darren , and I have neither a preference nor a dislike for either Derwood or Darren. Peace my friends.
Posted 6/11/2016 6:01 PM (GMT 0)
Derwood, I knew that name from somewhere, like you I use to watch Bewitched all the time, lol. Too funny. Good ole Endora, lol.

On a serious note, sad but true you will have to learn how to live with a certain amount of pain the rest of your life. There are no pain free days for a CPer. Its all about managing the pain just enough to function & have some quality life. This can be achieved once you have accepted the fact of not ever being pain free again. I urge you to discuss this with your counselor. Acceptance is the key to living with chronic pain. Until you can get that under your belt you will be struggling with this. As I said before acceptance is a bitter pill to swallow. Look at chronic pain from this perspective, learning & living with CP is like skinning an onion a layer at a time. Truthfully, I don't think you have accepted your situation completely.

Honestly, is my thing. I would rather someone be up front & honest with me than try to paint me a picture all rosy that is not realistic. I live in the real world, I am not interested in a fantasy world. Instead of dwelling on what you can no longer do, concentrate on what you are capable of doing. Yes, there are many things you are quite capable of doing, your vision is still too cloudy from various things. If you can afford to hire someone to come in & clean, do it. Use that energy on something you would enjoy doing & yes there has to be something you can do & enjoy still. Set small goals for yourself. We are really bad about settling ourselves up by thinking we can do so many things we really anymore. Keep it all reasonable to your current ability to do, not what you use to do. I pick & chose my battles very carefully on a daily basis. Morning are very, very hard for me. But, I don't think about how rotten I feel very long & I push past it & get myself in gear. A lot of mornings I ask why God is letting me wake up one more day, I know why. We all need to feel we are here for a purpose. Above all just remember to look around, you will always find someone much worse off than you. Telling myself this helps me keep things in perspective.

Believe us when we tell you that your depression is your bigger problem in all of this than your pain at the moment. The depression is making your pain worse, your way of thinking is so over shadowed by your depression. Its like the old saying you can't see the forest for the trees. If you will get a handle on this depression your entire outlook will be different. You are hearing this from people that have been there & done that long before you.

The medication thing is nothing more than a tool & you must have a full tool box to work through it all. You cannot depend on a patch or a pill to make things all well, it just does not work that way. Meds needs to be kept a the lowest dose possible to prevent yourself from topping out way too early. It appears your pain will be a life long issue like the rest of us, unless a miracle comes along. You have many years left to live & will need medication to help manage some of the pain. Continually upping dosages will lead to the potential of topping out & there is nothing left for a dr to rx. You need to keep this in mind along the way. This is where learning diversion techniques plays a huge role. This is one of the main reasons drs are not so willing to ex pain meds long term to young people. If they start in their 20;s by the time they are 50 there will be nothing left.

When it comes to my pets, yes I like my pets better than most people I know.
Posted 6/12/2016 3:43 PM (GMT 0)
Hi all. I have to admit I am having some troubles accepting being in
pain for the rest of my life. As things stand now , I am finding it difficult to get by while living by myself. As I have mentioned , my house is a mess , and I only get to my laundry when I have taken
my four morphine tablets. I simply cannot do these chores without this extra " help ".

So there goes my depression ; if I assume that my doctor is about to slow or stop my pain med increases , my depression flares , like it has today. As I see things , if I am " topped out " med wise , then I my next step is into assisted living. Which is better? Which is worse? In a sense I look at moving into assisted living as the end of
my real life.

Maybe you are all wrong , and don't know what my doctor has planned? I have to admit that I am now starting to worry more , as a result of the cautions about med increases from my doctor. I am not ready to admit myself to an assisted living situation , and I don't know if I ever will be.

Hope I get some feedback on this. I am signing off for now and going over to the depression help site.

Hope you all have a happy day;

Derwood

PS- would really like to know what you all think would be better for me - assisted living or attempting to live my life on my terms with more meds.
Posted 6/12/2016 8:07 PM (GMT 0)
Derwood, not knowing how Canada is with the narcotic situation makes it difficult for any of us to predict what will or will not happen with your dr. when it comes to increasing your meds. We can only speak from being in the states & how things are now being handled for a chronic pain patient. A good example is your PCP rxing your pain meds. Here in the states since we have gone through so many changes, rarely will you find a PCP willing to rx strong pain medication long term to a CPer. They do not want to hassle with all of the red tape. This is why most of us are under the care of a pain mgt dr. PM drs require us to sign a Contract that sets out the do's & don'ts. If we don't abide by that Contract we are subject to being kicked to the curb & not be seen by another PM dr. We do random UA's to make sure we are only taking the meds he has rx'd, pill counts to make sure we are taking the meds & not self medicating or selling them. At the end of the day though its not a big deal, I need help & this is just part of it.

As far as the Fentanyl goes you are not close to topping it out. You can still be tried on 50mcg, 75mcg & up. And there is a possibility of the dr adding a 12.5mcg to your existing 25mcg. Here if a patient getting an increase in the ER meds, they will often reduce the IR's.. They have guidelines they go by when dosing these meds. What your dr will do we have no clue. You will not see many drs here rxing 4 BT meds with an ER on board.

No one but you can determine if an assisted living place is what you want or need. I have ladies that clean my home as I can no longer keep up with it. Its just too much for me. However, when I worked I had someone clean my house as my weekends were my time to rest or do things I wanted to do. We were on the go alot & if i had to spend my weekends cleaning house & doing laundry we would not have been able to go & do these things we did. Personally, no I am not ready for assisted living but who knows there may be a time in my life its perfect for me. For now I will keep plugging along. Do what I can on a decent day lay low on the bad days.

Yes, I do believe you have not accepted life as a CPer. Its a process that many of us has all gone through. There are no shortcuts to get there either. A person either has to accept that this is how things will be & rebuild off of it or they get stuck. Its not easy either rebuilding but very much doable. Depends on how bad or how hard a person is willing to work for it. In 63 yrs I have lived to completely different lives. Again, I look at what I can do & not what I can no longer do.

Work with your counselor on your feelings about this. She should be able to give you some guidance. Its all about what a person is willing to do or not do, whats important to them or what isn't. Above all have realistic expectations of yourself.

Hang in there.
Posted 6/12/2016 10:40 PM (GMT 0)
Thanks for the perspective Susie.

I am realizing that there are some differences between Canada and the USA as far as pain management goes. One distinct difference is that I had never heard of a pain management specialist until joining this forum. If such a type of doctor exists in Canada , it is news to me. So this may explain some of the differences in thought that I am having vs the American methods of pain management.

I suppose my next doctors appointment will shed more light on this subject. Till then , I shall continue to read and learn. I have mentioned how I am having difficulties with dayly chores , and my doctor has not encouraged me to consider assisted living.

Derwood.

May the ( positive ) force be with you ... old Star Wars lingo :)
Peace.
Posted 6/12/2016 11:38 PM (GMT 0)
Derwood, for several years here in the states there has been a very publicized war on the use of opioids, over prescribing I believe is how its been termed quite often. They publish these convoluted reports with the most inaccurate set of stats imaginable. To give an example, they will use say a state like Florida that consists mostly of older retired people then say that over half of the people in that state is on a narcotic, lol. Really, look at the average age group living there, its a retirees mecca for Gods sake. How many older people have no pain at one time or another. Now in the stats they use included are the people that are not true legitimate CPers, but they include the junkies, accidental overdoses to inflate these number & spread pure pandemonium. They have put us in one category. Another example, think about the headlines concerning Prince's death. None of this happened overnight, it has been in the works for many years & now its out there & this is what we CPers have to deal with. We have the DEA & CDC involved, & while there are no laws on it, these drs are all going by their recommendations. They are afraid of being flagged & losing their license to practice medicine. Some drs have & are walking away from PM because they say, this is not what I went to school for.

Perhaps you can sit down & make a list of of the things you are having the greatest difficulty with on a daily basis just to survive, Talk to your dr about these things. Let him know you have not been able to keep your apt clean, limited walking which has reduced your ability to get out & walk for exercise. He is not going to know unless you tell him. Never expect a dr to know you are in pain just by how you walk or look. Keep in mind Fentanyl is a very strong medication & being started on 25mcg is not uncommon at all. Now that 12.5 is available they often start people out with that dose too. Do I think he was wrong to start you at 25mcg, not that is usually the starting dose to see how a patient reacts with it.

I think assisted living is great for whoever feels it is something they want. There may come a time in my life I may want to go that route. For now no that is not in the cards for me. I don't mind being alone when I get to be alone, I am far too hard headed & independent to allow even my kids come here to help me with things. I manage to find ways to get what I need done. We never discus my health, its not allowed by me. They know I have problems but that is not going to be a topic we discuss. In other words I refuse to let my heath problems rule or define who I am. I am not in denial, I am fully aware of all my health problems. I don't list my health problems because its too depressing looking at them, lol. Like you I walk with a cane or a rollator which is like a walker with a seat. I can no longer stand up straight or hold my head up. I do have to be careful walking because with my head down I am prone to walking into things, or to the wrong car. Done that many a time, lol.

Keep posting & letting us know how you are doing.

Glad to read above you intend on visiting the Depression forum here at HW. There are some really nice folks over there too, with lots of experience. Many of us use more than one forum here at HW.
Posted 6/12/2016 11:58 PM (GMT 0)
Derwood:
Keep an open mind to other and new possibilities - both in your life and in your pain management medications and modalities.

I shared with you that I keep subscribe to an inner conversation with myself to always do my best. To do my best is a conviction that I have adhered to in my many years of fragile health.

I also set realistic and flexible expectations of myself.

The world can be an unkind and unforgiving place. As a starting point, I am kind and forgiving of myself because I may not find it in other people.

I would have never predicted that my life's trajectory would be what it is. I never gave thought that fragile health would be my reality.

I was destined to enjoy all the perks of a long and gratifying career. What I face instead is a life that is limited by frail health and the prospect that my health will decline further.

In my work as a physical therapist, I worked with individuals with devastating spinal cord and head trauma. I worked with individuals with paralysis and irreversible brain injury. My work gave me tremendous respect for the gift that is health.

Focus on what you can do and less on your limitations.

I can stand and walk. I count this as a genuine blessing. The pain may be unbearable due to the avascular necrosis which is afflicting my hips, but I am still able to stand and walk. I will not acquiesce easily to losing my ability to stand and walk.

As a marathon runner, I routinely pushed through the wall that is pain. I knew pain well before I knew frail health.

My thinking is something like this: If was I capable of running the 26.2 mile distance of a marathon in pain, I can walk lesser distances of 2-3 miles with the pain of the avascular necrosis that ravages my hips.

Can you think back to something that you had to expend hard work and focus on to achieve?

Can you tap into your source of inner strengths to propel you to a better place both physically and emotionally?

I do not know about Canadian living facilities, but in Portland Oregon assisted living communities for individuals 55 and older are active and vibrant. Assisted living communities offer studio or 1 and 2 bedroom condominiums that are either purchased or leased. Amenities are provided on a monthly per diem rate. Meals are provided on a meal-plan of the person's choice (21 or 14 meals a week plans). Light housekeeping and laundry is provided. Assistance with medications and dressing is provided at an additional cost.

These communities are active communities of people engaging with one another and living fully. Most offer adult continued education (ex. computer workshops) and exercise programs (yoga, Tai-Chi, swimming, lawn bowling), group travel/excursions, a on-site library, computer labs, on and on.

If you should need a higher level of care, a nursing care facility is usually on the same campus - offering both short-term and long-term nursing-home care. It is often less disruptive remaining within the same campus than being relocated miles away to a distant rehabilitation center.

Both sets of my grandparents lived their final years as part of an assisted living community. I loved visiting them. There was nothing "nursing home" about the communities. These were communities of older adults living full and engaged lives. And contrary to what some believe, the food was outstanding. It was like eating at a top notch restaurant.

You may find that your life would expand in an independent or assisted living environment.

Look at the options for independent or assisted living communities available near you. You might be surprised at what you see and learn.

Each day . . . Do your best. Honestly, the best that any of us can do is to do our best.

This is your one life. Life your life as you want to live it.

Sending Lupin friendly tail wags and chin rubs,
- Karen -
Posted 6/13/2016 12:03 AM (GMT 0)
Happy Birthday Stray dog...better late than never! I am have a lot of problems getting motivated. Just push myself through a round of chores. Frankly, meals on wheels is better than 1,000 doctors because I don't have to shop and cook as much. Doctors are just guessing and not that helpful.

Just wanted to add in my two cents but every night I say, WHY DIDN'T I DO THAT????
Posted 6/13/2016 12:04 AM (GMT 0)
Very well said Karen. You have hit on every aspect of living with chronic conditions.
Posted 6/13/2016 10:07 PM (GMT 0)
I came across this news article on the CBC news site today. It explains a lot about what straydog was telling me earlier in this thread. The war on prescrpition narcotics. This story really expains a lot to me , and I have a much better understanding about what may lay ahead for people who require pain meds. This story is about how
doctors in states that are being monitored for the amount of opiods
they prescribe immediately started prescribing 1/3 less opiates compared to states that are not monitoring this. Very interesting , and a bit scary imo.

http://www.cbc.ca/news/health/opioid-painkiller-prescribing-1.3630040

Derwood.
Posted 6/15/2016 6:08 AM (GMT 0)
Hello!
If your going to be seeing a Rheumatiod doctor soon, then make up a list of medications your on, what you've tried that does not help and a list of supplements. No dx will be given at the first visit as you'll be ordered out for bloodwork and loads of it so make sure you've had plenty of water before the bloodwork.
Also if you have a form of RA your pain meds will be re evaulated, some can interact with ra meds, so asking for an increase for now might not be good. But, ra meds might take care of the pain.
For now you can try ginger for pain as its natural and might help, but small amounts. I like the ginger in the altoids mints...
Give your kitty a hug for me, I have 4 kitty boy toys...love them all.
I also have inflammatory ra...stay strong...you can do it...
Posted 6/15/2016 4:06 PM (GMT 0)
:-) Hi all. Thanks for some great thoughts and advice.
I have been waiting so long to see the rhuematologist ( 1 year waiting , 6 months to go....and only a 2 hour drive to this doctor...) that it completely left my mind that he/she may be able to offer something other than pain meds. I won't allow myself to get too much hope up , but just knowing that it is POSSIBLE is a really refreshing thought.

I don't know very much about arthritis , except that I read that there are about 200 different types. So I am going to do some net-searching to learn more. I really appreciate the advice about preparing for my visit with the rhummie. I may be wrong , but I expect my family doctor to do all the nessecary blood work and x-rays before my visit to the rhuematologist. This way I may possibly get a confirmed diagnosis on my first trip? That is what I have been hopeing , but I take things one day at a time.

I have my second appointment with my psychologist one week from today , so I hope that the second visit may be helpful with my poor mood. The first session was spent bringing my psychologist up to speed on where my life is now. She has helped me in the past ( especially dealing with my anxiety ) so I expect she will help this time as well.

I am doing pretty good at keeping my chin up these days , with the occasional bout of despare. I credit the help everyone here has given me for my better mood.

Hope everyone has a positive day today.
Derwood.

PS- was concentrating on being " lucid " during my walk yesterday , and exchanged a smile with anouther person at a cross-walk. Surprisingly
( or not ) that was very good for my mood. These little things are an important part of healing well , I think turn
✚ New Topic ✚ Reply
12