I have had the same issues with family and x partner NOT picking up on the fact that just because I'm sitting here or standing or in bed looking fine and conversing, I'm actually still in pain and the slightest distraction causing me to be ambidextrious mentally can cause the brain to flare a message to the muscles and off goes more pain... Fact is I'm conversing whilst managing pain... I don't what or need it loading up more on me. Others cannot mind read us....
I have been wondering, what if we use a colour coded variaty of mood and pain indictators with an explanation on them. Nice pastel shade paper/card, to hard bold colour. OR a graph type thing that we can put a sticker or pin in to indicate what level of discomfort physically and mentally we are in, and or how physically approachable we are.......
BEARING in MIND we do have to push through a lot of our pain issues even on Better Days to 'allow our partners, hubbies, kiddies and friends' the appropriate closeness. Folk can have partners and hubbie become so unhappy not being able to be intimate, or rarely intimate and they could well seek it else where. Reality is that can happen and it does. SO, being realistic we do have to make efforts to sway away from our loaded but better days and work with those odds, and get creative with 'how to be intimate on those days'. Sometimes it can be a great 'pain killer'.
With friends and family, it's letting them know that whilst NOT good, that we are still interested in what they are doing, thinking, saying etc... even if my face doesnt reflect it like I would normally... Tell them that you really rejoice in those better catch up days, that they make your world whole, in good and bad days/months, how precious they are to you and that it is them that keeps you stronger fighting the daily battles. That those days when you can't bare the hugs is when you mentally need them the most.
Find ways of hugging, like resting together on the floor, or couch, in bed, where they are the cushion, and lying till or being massaged or gentle skin brushing is the best comfort and hug ever. That at these times, sometimes it's the best pain killer and best medicine being rested, held in such blobby relaxed fashion. Let them know that, tell them. Get creative.....think outside of the box, free your mind to open up to ways of remaining in contact phyically and mentally 'the pair of you'... It can be heaven, and it can also be fun. AND very theraputic for partners mental aspect...
Oh how I wish for a large open fire, sheepskin rugs and big floppy pillows on the floor... and I guess I could put a good man in there ocassionally to.. hahaha. I am otherwise happy to live on my own, I have not been like some women that don't cope living alone, or must have a man in their life. I do otherwise get on with my own company, it's quiet, but that's fine I don't mind. After having a partner of 17 yrs not cope with my days of not being able to physically complete tasks.. I'm not wishing to put my issues onto anyone else again.
Out of the 17 yrs, it was the last 5 yrs that I suffered disablement as a result of my MVA, and he couldn't handle the fact that I was broken, and my issues never completely resolved after the accident...I was still trying to work, driving over 110kms/day (there and back from job as we lived rural).
He was so self absorbed that he took my disabledness as 'an insult, or threat to him'..
Here's a funny story for you all.. One time he had to go up to the North Isl from the South Isl where we lived, for work, and he rang me early in the morning crying because he couldn't get out of bed, his back hurt and could I ring him an ambulance.
YES YOU HAVE READ CORRECTLY.....
I calmly said to him, 'your back is fine, it's just having a muscle spasm, you will be fine. Ask one of the other chaps if they have any Paracetamole or Panadine or similar, take a couple or three and wait half an hour or so and you will find you'l be able to move. Get out of bed gently, and do a few gently stretches in the shower with the hot water on the area.
It took me ages to actually convince him he wasn't dying that he didn't need an ambulance to the hospital. His work colleage arrived at the door and so he asked him for painkillers, which the colleage did have. Within half an hour he was out of bed running out the door he told me later. He said,quote ' well if that's the sort of pain you experience when you say you are having muscle spasms and cramps, WOW and you have more area's than my one spot, I certainly got a look in didn't I' unquote. He was grateful I talked him down, and that I did know what I was talking about. He said he was panicking at the time. All I could do was smile, and say well just learn from it, and you know what to do next time. Also get some more fitness in, and do some gentle exercises to strengthen your back area. Did he ever do that, NO. Did he ever take into consideration after that what pain levels I was in that painkillers don't go anywhere near at times..NO... He used to lose patience, because it was all so very 'inconvenient' for him that I was disabled/broken, and couldn't regularly mow the 2acres, weedwack, keep house, cook, paint the huge massive barn and mezzanine floor upstairs which was a massive play and entertainment spot where we had car clubs come and locals had birthday partys, climb the ladder up an embankment and plant plugs of grasses in a hard clay bank.. wash and hoover all the vehicles, maintain the huge orchard I had created as a future business if I should lose my job which was on the cards then, keep the huge vege garden going and remain ever so socialable and I wasn't allowed to show fatigue or signs of being in pain to anyone, and the list goes on.. No it wasn't a healthy situation. Yet I bowed down to him and nursed him when he need help etc and never rediculed or behaved negatively towards him. I genuinely cared for him and his welbeing. Was it reciprocal, NO..
We had a good friend in common, who moved into the area. Being a respected policeman he could see what was transpiring and he later took me aside and told me, ' that whilst it is none of his business and not wanting to interfere, but from his observations he just wanted to caution me from a policemans perspective, that it would be a good idea to contemplate leaving my partner.' I was not surprised that he said that.. I was quietly grateful that he showed enough concern to tell me, no-one else did. But then my partner didn't show his 'true side' infront of everyone... To this day, everything that goes wrong in his life is everyone elses fault, and when folk don't follow his advice, do as he states, or they disagree with him, then those people are A holes and don't deserve his friendship and he flys off the handle.
So disabled or not, I learnt from my friend to be stronger and know it's not me that's in the wrong. Over months I was planning how I would leave, as all my money was in the property, which once was freehold, till he selfishly mortgaged the hell out of it... He exploded one day violently so I did what I threatened to do for years, I called the police. (No not our friend in common, he'd left the police force after 25 yrs and took up other employment elsewhere).
He spent a night in the City jail... was charged with spousal abuse, man on woman, and also property damage. My items he smashed.. So that evening was the catylist and I left.... I now have since lived alone and better able to self manage 'me'.. with out the abuse of a nasty partner.
There are some very good partners and hubbys out their and they deserve 'your loving respect, care and attention to'... BLESS THEM... as these good partners and hubbys suffer with you/us... Take QUALITY TIME OUT TOGETHER...
A few shared ramblings from me, whilst it helps take my mind away from my physical pains...
Our storys are what folk can learn and share or draw similarities from...
LOVE and HUGS everyone.....