New Here. Supporting and Giving Words of Comfort - Inspiration Needed

[SylvanLibrary]

Hello

My partner suffers from chronic pain. Pelvic neuralgias, Central sensitization, Interstitial-cystitis and Mast cell activation syndrome. I'm not looking for how to cure her of this.

Often the anxiety of a symptom not ebbing away causes her great distress and I'd like to know how to help her cope with that uncertainty. What helps you? What do you need to here?

I often say the same thing, that I'm sorry to hear about it, how sad I am for her. And that I love her and will always be there. But what else is there to say? I feel like I repeat myself often and I just want to give her something else.

Thanks

[Hidden]

The continued pain like a nagging tooth ache that never goes away certainly can grind you down. I have just found out today that the last 10 years of pain is down to neuralgias and not as I though arthritis and osteoarthritis. I'm untreatable for pain due to CKD although the Dr's are trying to mitigate it and I'm trying to resist.Just how my partner handles it I don't know, I can be the proverbial pain in the butt, but I do appreciate her ongoing support and attention as much as she can give.

One thing that really grinds me is being told how sorry and sad people are for me when they find out my plight. I really don't want to know that and I have to say my partner has stopped doing this to me. I understand people are trying to be supportive in their way but I'm not ready for the scrap heap yet. I'm alive and mobile for the moment, able to suppress the pain some of the time.

My partner now asks what can she do to help, which I vastly more appreciate knowing full well there is nothing she can do to help. She knows it , I know it but she continues with the offer. It is the offer that help is there should I accept, which lifts the load a little.

Try asking what you can you do to help instead, keep supporting her in anyway you can. Just knowing there is someone there prepared to help should it be required is usually what I need to hear. Makes me determined not to ask for help but to cope and get by anyway I can.

Good luck.

[Daniella17 in reply to Hidden]

I have interstitial cystitis and what put me in remission was an epidural injection in the lower back for the pelvis. I also take opana. Hope this helps xx

[Aoibheann in reply to Daniella17]

Hello Daniella17, I am awaiting an epidural injection for a different problem. I am 70 years old and so can you tell me what the procedure is for the injection - is it painful and how long does it take to administer. Take care and many thanks. 👍

[cyberbarn]

It is great that you are showing your empathy and compassion for her, but as Cheyne says, sometimes it is also the practical things that help the most. And one practical thing to remember is that life keeps on keeping on. When I have been in a lot of pain and can't do much, sometimes I just want to be a bit normal and forget things. I find watching comedy really helps, especially watching with loved ones. It keeps my brain occupied and stops it having to process the pain as well.

[CDPO16]

Sometimes just being there for someone is enough. At really bad times just sitting and holding someone's hand can make a big difference.