Today, My Pain Mgmt is Like...

Chat about anything you like... Fed up with the state of the world today? Tell us!
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Shining_Peace
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Re: Today, My Pain Mgmt is Like...

Post by Shining_Peace » Sun Jun 11, 2017 12:06 am

Jane,

It's not my shining moment to be sure, but I know there are those amongst us who are facing more and worse than I. I am just the one whines the loudest.

You guys are the best! Just having a place to come to where people understand the symptoms, pain, and know that laughter is the best medicine when there is nothing else that can be done by medicine, makes so much difference in my life.

I hope my pain helps someone else process their pain and gain the strength to seek pain control through pain management with a GP, specialist, or pain management clinic. There are meds to help us live as comfortably as possible. If you are living with intractable levels of pain, you may need to see a medical professional. If you feel the professional is unaware of the pain levels associated with chronic pancreatitis, please send me a private message. I had to educate my pain management team and they were supposed to be very knowledgeable about pain.

Jane, I am glad you have never felt this pain, but I know you have seen it. You have been such a boon to me for your humor but also your dedication to to the man you love so very much. It's not easy watching what this disease does to a body. It's also not easy staying in a relationship which is not going in the direction in which it started. You certainly don't have to be here, but I am so very glad you are for not only Alan, but all of the rest of us lot.

I pray for all of us on the Pancreatitis Support Forum every night. I hope our symptoms are mild and we have a good day!
~Sassy

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Janey Dal
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Re: Today, My Pain Mgmt is Like...

Post by Janey Dal » Sun Jun 11, 2017 11:58 am

Sassy I would never in a million years want to suffer the pain and generally feeling ill that you guys go through on a daily basis.

And I am glad you find some comfort from my 'dedication' of Alan - sadly nobody else will have me (and I know because I've asked :lol: ) so here I stay!

It's not easy at times for either parry in a relationship where one partner suffers with a chronic illness. If you love them you can't bear to see them in pain, but you can't do anything to help. If you are in the pain you know you are being bad tempered and not always fair but you can't help it.

What has made a massive difference to me is my job. I can, for short periods of time, get away from the daily grind of watching Alan having a bad day. Aren't I the lucky one? He can't escape it.

I feel sad for the gorgeous, fit, funny guy I married. He is still gorgeous to me and at times still very, very funny. Fit? Maybe not so much!

I worry about our future (or lack of) because whether I like it or not he is hardly going to improve. But then I look at what is happening to other people - their children dying, terrorist attacks, losing everything because they have lost their job etc etc... There are some absolutely horrendous situations that people have to face on a daily basis. So this old life isn't so bad.

I thank god every day for my kids, their happy lives and exciting futures. Many people, including yourself, don't have that pleasure.

So yes it's not perfect but it will do me very nicely thank you. I am not complaining. And Alan's illness also gave me the opportunity to meet some amazing people on here and believe me there were days when without you all I would have struggled as well.

Take care sweetie and remember you are a shining star xxx

Hugs

Jane xx

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stuart13
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Re: Today, My Pain Mgmt is Like...

Post by stuart13 » Sun Jun 11, 2017 9:55 pm

And so are you a star, Jane and so are those that care for/about us.

:)

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Shining_Peace
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Re: Today, My Pain Mgmt is Like...

Post by Shining_Peace » Sun Jun 11, 2017 10:29 pm

A different kind of pain.

My husband and I are having some troubles since before the last ERCP. I think it may finally be sinking in for my husband that I may not become drastically improved. I may never be able to go back to work or keep a nice house. The other sad fact is that I may never be the *e* kitten he married seven years ago. I am very afraid he may be choosing to close his heart and send me packing, so he can find a woman who can give him what he wants. :cry: :cry:

Please keep us in your thoughts.
~Sassy

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stuart13
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Re: Today, My Pain Mgmt is Like...

Post by stuart13 » Sun Jun 11, 2017 11:11 pm

I do hope that things will iron out for you both, Sassy.

:)

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Shining_Peace
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Re: Today, My Pain Mgmt is Like...

Post by Shining_Peace » Sun Jun 11, 2017 11:24 pm

Thanks, Stu. I hope so too.
~Sassy

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maz
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Re: Today, My Pain Mgmt is Like...

Post by maz » Mon Jun 12, 2017 9:08 am

I hope you can both work things out Sassy. The worry doesn't help.
Marilyn

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chandra
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Re: Today, My Pain Mgmt is Like...

Post by chandra » Mon Jun 12, 2017 6:35 pm

I have personal experience of what you are talking about Sassy, and in that respect I can really empathise with you :(

When you took your marriage vows you said 'for better, for worse, in sickness and health'... it isn't easy, kinda of like 'I don't remember signing up for this...' but if you truly loved one another previously, I urge you to keep the lines of communication open.

We made it through (been together 33+ years) but it wasn't easy and I can clearly remember him picking up my pathetic 95 pound body to ease me in the bath tub and thinking and feeling that it wasn't fair on him, but that's what love is truly about, as is forgiveness, which is what I eventually, sadly, needed to do.

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paul.m
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Re: Today, My Pain Mgmt is Like...

Post by paul.m » Mon Jun 12, 2017 7:42 pm

Sassy I hope you can sort things out I really do . It may not be the life you hoped for on your wedding day but it is another adventure to be shared together it could easily have been the other way around with you looking after your husband .
Paul

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Shining_Peace
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Re: Today, My Pain Mgmt is Like...

Post by Shining_Peace » Mon Jun 12, 2017 10:42 pm

Thank you so much for your kind words, empathy, encouragement, and positive advice Stu, Marilyn, Julie, and Paul. I know there is still a lot of love, so I hope we can find our peace and enjoyment again. Marriage isn't easy, and I knew that before the vows. I just can't get him to tell me what's wrong.

I have faith that if this is meant to be, things will work out. If not, anyone want a roommate??
~Sassy

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maz
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Re: Today, My Pain Mgmt is Like...

Post by maz » Tue Jun 13, 2017 9:22 am

I think some men find it difficult to talk of deep more emotional issues. He also might not want to upset you more by letting it all out. It is hard for partners to come to terms with their lives being so different from what they dreamed it would be, just as it is for the sufferer, though worse for them of course. Do you think he would take outside help, marriage counselling say? Is there anything that you can do to help? I mean finding ways of making your life easier to lift the burden a bit. A cleaner maybe, so that job is taken off you, as you mention keeping a nice house. Are there things you can do for YOU, that can give you pleasure. I remember when I had CBT for pain management and they made a big thing of finding even little things that help. I had to write a list. Pathetic for me, it was a very small list :lol: I just couldn't think of much. As it happens, I love doing jigsaws. Colouring not so much. I'm not one to spend money on myself on things like massages or having my nails done, but these things can help overall. It is hard when we don't feel well I know.

You are right in saying marriage isn't easy, but it is worth fighting for.
Marilyn

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paul.m
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Re: Today, My Pain Mgmt is Like...

Post by paul.m » Thu Jun 15, 2017 3:16 pm

Maybe he loves you so much he cannot bear to see you suffering
Paul

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Shining_Peace
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Re: Today, My Pain Mgmt is Like...

Post by Shining_Peace » Fri Jun 16, 2017 4:15 am

Marilyn,

Marriage is definitely worth fighting for...

It is worth anything to stay with the man I love.

Paul,

I know it's hard for him to see me suffering.

I think it's worth my time to seek whatever help necessary to make it work. Especially since no one volunteered to let me sleep on their couch for a few weeks.

Love you all!
~Sassy

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Janey Dal
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Re: Today, My Pain Mgmt is Like...

Post by Janey Dal » Sat Jun 17, 2017 11:41 am

Sassy - Mia casa e sua casa (I think I got a bit mixed up between Italian and Spanish there - whatever!).

I agree wholeheartedly with the others sweetie. Men can be so reluctant to talk about their emotions - too busy trying to be hunter-gatherers!

I would say that worrying about what may happen is almost worse than it happening. You really do need to try to get him to talk using whatever methods that are available to you.

I remember Alan feeling for a long time that he had no idea why I stayed with him because he was such a 'burden'. I had no answer apart from that I love him and I would rather have him around with all the problems that brought than the alternative.

What I am trying to say is that whilst I don't belittle your worries in the slightest, it may well be your perception of the situation rather than reality. Hence the need for communication.

He very well may be feeling so utterly useless to you (and I can empathise with that) that he doesn't know which way to turn.

Regardless - get him to talk - electric cattle prods have always worked for me with Alan. Try to at least get to a point where you can put your mind at rest, which you badly need with all your health issues going on.

Believe me - lack of communication is one of the most common causes of relationships breaking up - not ill-health.

And just remember - we are all here and rooting for you both.

Hugs

Jane xx

PS thanks Stuart xx

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Shining_Peace
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Re: Today, My Pain Mgmt is Like...

Post by Shining_Peace » Tue Jun 20, 2017 7:08 am

Saw the Gastro who performed my last ERCP. He was on-time, explained things well, and gave me his cellphone. He also now agrees he may have put the wrong length stent into my pancreas. I see him again in two months, unless I can't stand it that long.

I continue to have trouble at night, and I have lost 17 pounds.

In other news, my husband made me cry for a few hours today.
~Sassy

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