Hi everyone.
I am looking for help for my girlfriend. I have chronic pain and recently had a neurostimulator implanted. My girlfriend has always struggled with understanding my pain and how it effects my on a day to day basis. Does anyone know of any forums or groups that are aimed at helping relatives of people with chronic pain? Preferably in the UK. Thank. J.
try adapting this then print it out and give to her
Please read my life with RSD/CRPS
These are the things that I would like you to understand about me before you judge me.
Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.
Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.
Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.
Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.
Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.
Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.
Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.
Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.
I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.
THANK YOU!
Extremely well written. Rib
This is excellent kevscar....I'm nicking it to adapt, print and give out! Thank you
I really love this I had a little tear roll down my cheek whilst reading, it sums everything up perfectly. My partner is always very understanding towards my pain but I shall show him this so he can gain some further awareness.
As a carer I a, often asked what is it like to live with David who endures chronic pain.
Not easy is my reply. It is hard. I try to imagine the worst pain I've ever had which is raging toothache, multiply it by 1000 and add cramp in every muscle to it. Not forgetting the depression and you may be getting closer.
Sometimes all I can do is just hold him and be here.
If your girlfriend wants someone to talk to - message me. I will help if I can.
To my knowledge there are no groups specifically designed to help us who live with CP sufferers.
Pat x
That's so true. In the early days people were so focused on doing things, but it's much more important for someone just to be there. Even a simple gesture of holding your hand, or a part of you that doesn't hurt, just gives you reasurance that you are not alone, that the person knows they can't help take the pain away.
I agree wholeheartedly with the above, but would like to add one thought. If we were 'normal' then the balance of attention would be shared 50/50 in a relationship. Coping with pain centres on one person and it is hard for their partner to become a carer, modify their own lifestyle and feel distanced from the one they love. I think it works best for us if I become my carers carer ! For example, don't plan to go for a meal, but if the day is not too bad, take some extra meds and be spontaneous and go. Somehow you have to treat pain as the enemy that is trying to get in between you and your partner, try to enjoy the fight!
Pain takes so much away, don't let it take away the romance.
On a more practical point, it may be useful for your partner to see a counsellor to explore her own understanding? HTH
I think Heorte is getting close to one of the main problems. No one can ' feel' or 'understand the pain someone else is feeling but the important thing is to try live as much of life as possible that is not focused on the pain and the disability it causes. I hate jit that I can't envisage going on holiday again but I've encouraged my husband to book a cycling holiday for himself. It will hurt as we used to cycle together but it might make the times when he is limited by what I can do less dull. Moving the focus of life away from the pain if its possible
Most illnesses and conditions have charities that support the sufferers. They often do things for family too.
She could go with you to hospital appts and chat to the other patients.
If she wants a real insight into living with pain, reading everyone's stories on here would help general understanding and put your pain into context.
Try carers.org
Just remember, she will need time to understand. Unless you've been around people with chronic pain, it is quite an alien concept. And if her own experience of pain is minimal even more so. Once the realisation sets in that this is for ever, she will need time to mourn.
If she can focus on being rather than doing, able to accept moodiness/depression as part of the course, and talk, the post above explains a lot of how it is, but you need to add your own things. You need to explain that things have to be done a certain way and it's not because you are a control freak. She needs to understand that plans for the weekend may not happen, and not be disappointed if they don't. Above all she needs to be strong to take whatever is thrown her way.
You need to explain how you are wanting your condition managed so she can take over at any point if you were unable. She needs to understand your condition, all the expected outcomes, why you've chosen one treatment path over another.
Once you've got all this sorted out, then you'll have loads of time to have fun.
Google the spoon theory and explain it to her using spoons. I've found this helps.
Hi, we have a family run website called Chronic Pain Sufferers and are based in the UK. If you would like to find us we can try and help your girlfriend understand your difficulties. We have several things that she can read; not too arduous. We can direct you to more help as well.
Again - google 'spoon theory' . It adapts very well to chronic pain, and helped all my family understand what it was like for me.
I don't know any sites for relatives,but I can tell your partner chronic pain is something you need to live with and is hard.I myself have had it a long time,it now controls my life even though I have tried most things you don't sleep you get up tired which makes you worse,she needs to understand you might be wanting to do things but the pain tells you different it has a mind of its own I have beautiful grand kids they want you to do things with them but the pain grinds you down sorry for being down,but it's hard for people to understand something you can't see but it is very reel hope you can get your friends and family to believe it's very real and support you
Dear Kevscar. Most excellent. THANK YOU VERY MUCH.
not my words found it a few years back and the author gave permission for anyone to use,
compare your pain to living with toothache. There is a good chance that your girlfriend has had to visit the dentist on occasion.
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