A meaningful life
 

My question is: is it possible to have a meaningful life while living with severe neuropathic pain? I have posted before outlining my current situation. I have nerve pain over most of my body. It is steadily worsening and seems to be largely treatment resistant. Medication has helped only moderately and other things like exercise, massage, acupuncture, etc haven't really helped. I'm mainly housebound and use a wheelchair. I guess it would be good if people who are in similar situations had any answers/opinions and also from people who have had more success with treatment and are living a more manageable life. I don't think anything is going to change my situation based on what's happened so far but maybe I'm wrong on that one.

Meaningful..... What that means to the individual will give various responses. Different life but life just the same. My momma told me just today that adversaries make us stronger.
Some days I don't want to be strong I just want to enjoy life pain free. For most of us here, until the cure it might never happen.
So we, I find meaning by being the best me I can be. May sound cliché, but I have learned to love myself in a better way. I don't, well try not to push myself....which led to not letting peoples walk over me. My opinion does matter. And I continue to help others as best as I can.
I count my blessings and continue to show gratitude for them.
On those days I just can't take it any more....friends here and posts, have encouraged me to hang in there.
Yes, I believe we do live a meaningful life despite our pain. Keep up the fight.:grouphug:

Hello indigo :)
 

Do you have any type of pain patches available to you ? I use BuTrans Transdermal 20 mcg/hr and it delivers pain meds through the patch for 7 days. Between it and Oxycodone 10-325 I get by. I also take Paxil 40 mg daily and it helps very much with my mood and keeping anxiety at bay.

Not sure if you've read what I recently posted but my husband passed away last Sunday. I could not have made it through his ICU stay without the meds I'm on and a few days of prednisone 20 mg.

There is life still ahead for both of us...you and me. We just have to find the best way that works for us.

Debi

[QUOTE=St George 2013;1168542]Do you have any type of pain patches available to you ? I use BuTrans Transdermal 20 mcg/hr and it delivers pain meds through the patch for 7 days. Between it and Oxycodone 10-325 I get by. I also take Paxil 40 mg daily and it helps very much with my mood and keeping anxiety at bay.

Not sure if you've read what I recently posted but my husband passed away last Sunday. I could not have made it through his ICU stay without the meds I'm on and a few days of prednisone 20 mg.

There is life still ahead for both of us...you and me. We just have to find the best way that works for us.

Debi [/QUOTE

So sorry for your loss.

How does the prednisone help? How long have you been on it? Is 20 mg a small dose? What is the reasoning behind prescribing it? ( how did u get Dr to prescribe it?)

Dear Indigo,

I am struggling with similar issues as you about finding a meaningful life, in my present physical condition, which has also affected me emotionally and spiritually .

It's hard to sometimes think clearly being in such chronic pain.
It distracts and clouds the senses .

I am still going through the mourning process of losing my life as I once knew it . Acceptance seems to be my most difficult for me to resolve.

Have you gone through this process yourself?

Meanwhile I still try to help my friends and family when they need some support or advice or other perspective.

For me, it's very important to help others in any way I can.

:hug: Vintagewine

Thanks for your reply.

I have no kind of acceptance with what's happened to me. I'm in the raging anger/denial stage. The illness and the seriously aggravating factor of incredibly stupid health professionals has got me all fired up. I spent the first 2 months talking to a GP who told me I was putting it on and who yelled at me because of the way I was moving.( I have a neurological disorder as well as a pain disorder). It kind of set the tone for much of the last 2.5 years and my encounters with the health system. That's not to say I haven't had some fantastic people as well. Many medical people have been great but the ones who held me up, especially initially when fast intervention may have meant I would have a better outcome..,....

I don't spend my days fuming, fry's your nerves, but I do know I have some anger simmering away underneath. I agree it's important to be there for your friends and to contribute and look outwards. Severe pain does do a lot to pull you inside. So I make small gifts, text and phone friends and family checking in on how they are.

Can't write more. Hands don't work very well. Being assessed this week for voice activation.

Thanks everyone for your thoughts. Will maybe write more later.

Hi indigo

The GP that yelled at you should be reported. I hope you've found a better one and aren't still having to deal with him.

I've had my share of poor experiences with the public health system over many years - earlier this year, for the first time, I went through the formal complaint process with the assistance of an advocate. The outcome included an apology, but more importantly I was able to get changes instigated that means hopefully they won't try and kill me again next time I have to go to ED.
While I had no sense of victory (nor would I want that) over the incompetent so-called professionals it did help dissipate some of the anger and frustration that had been simmering.

My experience is not too dissimilar to yours - delayed diagnosis causing worse prognosis. Acceptance takes time and the anger & denial stages are part of the process - there's also grieving, hope, despair, frustration among others. Knowing they are just stages we go through doesn't make them disappear and it's only once we've been through them that we can reflect and understand how each stage prepares us to accept the changed life we now have to live with.

I don't know if you saw my reply to your original "despair" thread - sorry I was late posting a response and you may have missed it. The offer is still there if I can help with any info on NZ resources to cope with the system.

All the best with your assessment for the voice activation system - let us know how you get on.

Hi. No I didn't see your message so will check tonight. Thanks for your thoughts. I was too ill to do anything about the first GP but I changed and she had me hospitalised within a week. I spent nearly 2 months there. I simply don't have the energy to follow up with the incompetent med people. I'm glad you made a complaint and that some positive things came out of it. It can be challenging to do that especially when you're chronically ill and know you might be seeing them again sometime.

I haven't been through the hope stage, definitely visited the hopeless stage. I always was a pessimist (:

Will let you know re voice activation. I really hope I can get some help with that. Would make a big difference.

All the best

Hey Debi. Thank you for your support and I'm really sorry to hear about your loss. You must be someone with a lot of courage and I'm glad you can see there is a life ahead of you. We don't have access to patches. I've been told lidocaine patches are illegal here- New Zealand. Crazy. Anyway all the best to you.

Hi indigo

Understand about the lack of energy - it took me six months after discharge to do put in the complaint and I couldn't have managed it without the advocate who did most of the negotiating. Still encountering problems in the system but I figured out I have to pick my battles - the issue I complained about was because with my primary condition I will have to interact with the hospital ED (hopefully not too many times) for the rest of my life - for me the issues needed to be sorted as the risk of the wrong treatment could be fatal.

It's a real balancing act between fighting for the right treatment and staying on the 'good side' of the physicians who you know you're going to have to deal with on a regular basis.

It's getting late - need some sleep - catch you later. Take care.