General Chat

I have 'borrowed this from a newsletter my sister edits.

Helping Others to Understand Chronic Pain

Many people who have chronic pain find that their family life and friendships suffer, and this is mainly because it is hard to explain to other people what it is like to have chronic pain. This causes a vicious circle e.g. pain is bad → other people are unhelpful, either ignoring you or being over-protective → you feel miserable and think no-one understands → you then withdraw or get snappy, or you overdo activities because you think you should, or to prove you can. We need to break this vicious circle and help the other people in our lives to understand our needs.

Some of the negative reactions that we give are - shouting or snapping, not listening to others, trying to get our own way, being unwilling to compromise, talking very quietly, keeping our feelings bottled up, and apologising all the time. None of these reactions are helpful however, so how can we help ourselves? We need to communicate in an assertive manner - listening to what people say, talking things through, telling people calmly what we want, and finding a way around the problem. We mustn’t expect people to be mind readers (they are not usually very good at it!). Communication is so important - try not to be too passive, or aggressive, but speak in a calm and clear way. If our reactions are positive rather than negative, this will help the other person to be positive too. It will then create a positive circle rather than the vicious one that we had before. If we can help people understand us better, we will feel less alone in coping with our pain.

I am sure this article would be of interest to a lot of people, Ann. A shame there only seem about six people on General tonight. XXBC

Hi Ann
I thought i would just say i totally agree with what you have written...It is difficult for anyone who lives or is around someone who has chronic pain.,....

Its just as hard for the person who has'nt got it, and we do have to remember this..I have chronic back pain since 1998..I started to have it when i was only 18yrs old...Certainly never thought it would be this bad...There is light at the ned of the tunnel..As you say we all have different coping stratagies..Communication is vital to those who dont quite know how to react to someone who has pain on a daily basis, and the people who care about us just want to help...
We must take time to reflect on those certain people who may have no family or friends or even any kind of support network, then we realise we are lucky in a lot of ways....

Kind Regards
Michelle

You aren't wrong sweetie, I wish Daddy had been more verbal to me about the pain he must have been in and then I could have shouted for him!

But he must have played it down

xx

My sister suffers with fibromyalgia and this newsletter is written for a pain support group she belongs to. In a way the FM contributed to the break up of her marriage because her husband could not cope with her always being in pain.

I do understand pain, I have suffered with chronic back pain myself for over 4 years now. No cure for it as far as I can see. I have been told by a physio that my spine is curving 'the wrong way', and by a chiropracter that my back muscles don't work any more.

I manage the pain as far as I can without painkillers and mostly it brings frustration because of the things i would love to be able to do but can't, such as digging the garden and walking up mountains. (small ones in the Lake District). i am thankful that I can actually still walk fair distances, it is lying, turning and sitting for long periods that affect me most. My OH is very supportive but it is difficult for him because there is no name to put to this pain. However, he has now developed pain in his hands (I suspect from prolonged gripping of a golf club over the years) so does know what pain is like.

Ann,

The only person that I know who understands chronic pain is Vitor my husband...

I have tried explaining to family and friends, but because they do not see a "physical abnormality"

They have no idea at all!!

Not everyone understands!

They have to live with it on a day to day basis...to really know
what it is like to live with pain...!

Lindy ;)))))))))))))))))))

I also think that most people who suffer chronic pain go to great lengths to be cheerful because they don't want to appear to be different. Therefore, people see they are cheerful and think they can't be in pain. It is a vicious circle.

I have to add that fortunately thus far my pain is manageable and I have no need of the pain clinic. At the moment I am still able a lot of the time to avoid doing the things that cause the pain.

I think you're right there.

Anything that is not visual is not thought of as a visibility, so it must be so hard!

(((gentle hugs))) for all that need one

xx

Dear Mary

I am now 43 yrs old...I understand what you mean with regards to painkillers...I have osteoarthritis,amongst heart problems,liver disease,Chronic Asthma...I am on numerous meds including morphine...At the end of the day its a catch 22...The pain meds dont seem to work because we are so used to using them...I am trying to lead a normal a life as possible...
I have a beautiful 15yr old daughter who keeps me on my toes...I lost my long term partner of ten yrs..He was 30 yrs old when he died in 2002...

I even thought it was my fault that he died beacause of the worry and the amount of times that i would be rushed up to hospital...I now realise this was not the case, although there is times i still feel guilty...I try and pace myself and do what i can do...I also look after my mum and dad who stay up in Edinburgh...I love my family/feriends to bits and if i can help anyone at all then i will.....I dont look for sympathy, all i do is try to lead a normal life as much as possible..I am no longer in my wheelchair, i was lucky to find a pain centre in Liverpool, where i stayed for a month and basically was taught a lot about pain and to be honest it was difficult being away from my family for that long, but looking back it was worth it, I walked out that place on one walking stick...Now i only ever use my sticks if i really need them...I try and take a small walk daily...
I am also lucky that i stay in a lovely part of Scotland, in a little village near the sea.....

I wish you luck and although like everyone else i have really bad days ...The good days are more and more...I am really hoping to try and come down on my morphine patch...A little goal i set myself with the support of my doctor.....

Take Care Michelle

P.S Sorry for going on.....
Once i start typing i cant stop...lol..Its the same when i open my mouth......

I really do admire those of you who have so much more to put up with than me. Maybe we should have more of these threads, they certianly make me count my blessings and, hopefully give those of you who suffer so much much needed support.

Michelle I am so sorry to hear about your partner and I am sure it was not in anyw ay your fault. Your daughter sounds lovely, as you do too. your optimism shines through your posting, thank you.

to all of you suffering pain, I hope tonight will be easier for you.

ann
Glos

You are quite right Ann, but there is the other side of it too.
When you get someone who IS verbal.... they are then often treated to hurtful remarks such as...." what's wrong with you now?"
I've had that said to me by 'family' ... not my nearest and dearest I must add.
It is difficult enough to live with pain without *lucky* healthy people treating us as if we are fussing ! That is often why people don't tell.
Deanna X

just been reading through this and my worry is the amount of pain relive im using now at 40, will anything work when im 60 cause i will have built up a resistance to the drugs, as most of you know for a couple of hours on a friday night i get drunk, i do this as this is the only time i get some pain relive its wrong and luckily im not let it happen any other days , relationships are suffering with my friends as im not the girl i used to be and im in a dream world , i wish lol.
specky is good and im lucky ive lived with far worse its petty things really i like the house spot less he is more laid back so i get frustrated when its untidy and i cant tidy it cause im in pain or doped up on pain killers, its stupid the things we let bother us my cyber family on here have kept me going the las few months, and the banter we have helps i know i bore the bum of some but hey thats life x

Lorraine, maybe as you get older there will be new things discovered, new pain relief like there has been in the past. Only you though can make yourself 'live with' the house untidy, maybe by relaxation techniques where you are able to switch off. Better an untidy house than an unhappy spouse. Gosh I am a poet!! Ignore the clutter, as you say, Specky does his best,

I know how you feel though having handed over most of the gardening to tony when I love to do it myself. i have become a very good foreman (woman?)


.
Ann
Glos

Christine, what actually gets me is when you go to the doctor and he asks how you are? do i say 'quite well thanks' so then he is thinking, well why are you here then. what I usually say now is 'not so bad thanks' I think that about covers it for me.

Ann
Glos

yes Christine you are quite right and I always say... "I'm fine thanks, and you?"
But to a visiting relative, we should not have to pretend that we are not in pain, every time we get up or down!
I've heard people say that... enjoys bad health....
I have even heard it said by a friend of mine about her sister!!
When I asked what was wrong with her.... she gave me a list of REALLY SERIOUS STUFF!
How could anyone say things like that , when they themselves enjoy such rude health?
We would all like that.
Hope you all manage your pain, not easy I know, I do use a lot of heat on my pains. That usually works.
Deanna X

lol ann thats how i feel , a forewoman, i miss planting vegetablesand i used to love walking im actually on quite a downer at the moment with the constant pain, but i have a 1 hour appointment with a gp who specialises in fibromyalgia on wednesday , to reasess my medication and hope fully try some differnt ones, i think i feel pathetic that walking to the washine line can leave me exhausted, im thinking a head that if i have grand children im not going to be able to play with them, im sure its just a tempory lapse but it caused a big fall out with poor specky and my freinds at the weekend, , me and specky are ok, and friends we are just speaking, they said they didnt realise things were sio badm but i guess we travel up there i have make up on and im drinking so its all hidden so its not there fault really, i have infact printed the first bit of this thread and sent it lol. so thankls xx

I find that too, when I go to a 'male' doctor. my little lady doctor is lovely, if I come out no better... it is not her fault, she has at least tried.
I cannot use cold, I did try it once about 15 years ago, and I ended in such excruciating pain I was screaming!!
I need the heat, and if I am in bed, I will try the heat before I take a tablet.
I do have the packs to put in the freezer or fridge, my son bought them for me. They worked for him you see.
anyway... nearly tea tome and a rest.
Spend a lot of time resting these days!!
Deanna X

Oh Puss, that is sad if you are in pain and no one believes how bad.
I feel it for you.... and that is good of me, since I have enough of my own!! ;-0)
Deanna X

totaly agree christine, i wouldnt mind a day off from mine lol oh well i do sleep which a lot of people cant , btw i like dave clarke 5 too do you know any more