or do you all meet the family/friends and put on a brave face?
Am a grinner, never, ever talk about it (well unless specifically asked) then cover it in grins laughing etc.
This place is a lifeline, it's somewhere where nobody knows me, I would be mortified if my elderly parents knew how I suffered. Or indeed most of my friends. I go to the Dr's with a grin, in extreme pain at times.
I speak easier on here than anywhere, and if it helps me it must help others surely?
The release is so good, I thank you all.
Love BisBad
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backisbad
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As I only have my mother who also ill with pain its hard too tell her how I really feel as I don't want her to worry her
Again, thanks for reply, if I had to tell my doctor everything, I would be mortified and going to visit him so often it would be embarrassing! Am on so much medication already, I would sound like a hypochondriac. That worries me.
I don't hide it, but I rarely talk about it, unless I'm really really bad. I find focusing on it makes it so much worse. Much prefer to focus on strategies that get me through the day, and have a bit of fun.
I'm the same. Always trying to keep it from people so they dont worry. But sometimes I think it helps to do this so people are normal around you. Helps you not to dwell on it too much xx
Thank you Mooma, as said previously, this place is my release, have one very poorly son , elderly parents and like the release that affects no one close to me that this place gives me.
I have always been the same i never go on about the pain i feel, no one wants to hear that you are in pain all the time and like BisBad only mention it when asked directly about it.
when asked how are you i always answer either good thanks or great thanks it is now 43 years since i damaged my back in an accident whilst in the army and as the years have passed it has slowly got worse, my ex (divorced 13 years) told me a couple of years ago she never knew how bad it must have been all the years we were together as she had a fall in work and damaged her back.
she said it is worse than "child birth" there is a stronger pain plus it never goes away at least when giving birth you know it will be over in a few hours to a day but the pain from the back never goes stops day or night now and then it may ease but you know it will not be long before it is back, you just have to grin and bear it, i have to admit sometimes i think it may be better to kill myself.
My doctor suggested i keep a pain diary which i did for two years 2012-2013
Pain record using a scale of 1 to 10,
with one being equal to someone stubbing a toe on the end of the bed
it hurts but you know it will go away soon.
and a ten being like some one hit you with a sledgehammer
and all you want is to die all movement is extremely painful and my back goes into spasm.
Pain Group 1
On a level of 1 to 2, I can get myself up and dressed and if I need to
I can walk short distances up to around 20 meters and after a short
rest I can walk a little more but after a couple of times I start to get
more and more pain and have to stop if I am lucky I will be ok and
my back will not go into spasm but it can take me a couple of days to
get over it.
Pain Group 2
on a level of 3 to 4, I can get up and dressed but all I can do is sit or
lie down I can make a cup of tea or something but not much else.
Pain Group 3
on a level of 5 to 7, I can get up but do not get dressed as doing so
will make my back go into spasm I have to hold onto something
to be able to move about,all movement is very painful and I can not
even make a cup of tea.
Pain Group 4
on a level of 8 or above I cannot get up or do anything if I am not in
bed I normally have to crawl to it from where ever I am at the time
every small movement is extremely painful even trying to take a
deep breath causes pain.
over the last two years which are the same as the the previous 2
years I have had :-
86 days or 10.23% with a 1 or 2 pain level
278 days or 33.06% with a 3 or 4 pain level
351 days or 41.7% with a 5 to 7 pain level
126 days or 14.9% with a 8 to 10 pain level
for me keeping this diary was well worth the effort i just kept a pad and pencil at the side of my bed and each night i would put down a number between 1 and 10 which i have put into 4 groups to make it easier to get a good idea of how it affected me, i did put the numbers down with dates on my computer and let that work out what the average was over the two years.
it may be worth it for others to try as it will give your doctor a better idea how your pain affects you over a longer time than they get to see you.
Aww, how we suffer, am always asked on a scale , appreciate your contribution, am in awe of your togetherness, I think I would be depressed keeping a diary ( Just me) 'cause it would shock me into how many 8/9 would have.
i was the same at the start but when i sorted out the information into groups and worked out how many days i get in a year that i say i am not to bad and can get dressed and go out somewhere that does not take that much walking it worked out around 43 days a year i could not believe it was so few good days, in the past when asked how often i was bad i use to say around 20% to 30% of the time i was just guessing i have always tended to try and forget the bad days but with having the numbers down in front of me i get over 56% of the time when i cannot even dress myself but after i got over the shock i decided it is not worth crying about and just get on with life no one is going to do anything for you so just carry on the way i have been.
better to just remember the good days and forget the bad ones at least i am still alive unlike some people who i knew in the army. better to be alive and in pain than dead and no pain.
I think to admit makes me feel even worse. My friend's daughter once asked me, do you like going to the doctor so much? This shook me a bit and I know she said it because she does not yet have insight into pain. I also have this very low level of emotional pain tolerance. I have to tell myself that it is not the way everybody else is and that I need to work through it.
This is true, at this website one can complain and joke and everybody knows what it is all about.
I wish you well and lots of love from everybody around you.
Hi Nita7, Am wishing you all the very best and hopefully you can work through your pain. To be fair I agree with you, admitting how bad you feel makes it real. Some of us hide away in our own ways, just to cope better. Nothing is the right way, it's how we deal with it.
I must admit that I have always hidden my pain away from family and friends especially when you're asked, 'how are you?' The response is usually, 'good thanks, you?' Yes, they are asking about your health but I really don't think they actually want to know how your pain is otherwise we could be there a very long time. For close family and friends they can tell anyway but I still try to hide it.
That's where this website comes in thankfully! I've had my neuropathic pain for over 20yrs and every time I think it can't get any worse, guess what, it does! It started after an accident in work but it was due an orthopaedic surgeon that made it worse and to the extent it is now. I was 23 at the time living & working away so when I initially had the accident I'd herniated 3 discs but by the time I'd got to hospital & in traction for 3 weeks the surgeon decided more action was needed. Unfortunately, I trusted him to do the procedure as he was supposed to be the consultant & the man with the knowledge and skills to put me right again. However, things went down hill from there on to what I have been left with now. Chronic neuropathic pain in my spine due arachnoiditus; crushed and partially severed sciatica nerves, both legs (severe sciatica in both legs with very little feeling in them other than hot & cokd sensation & hypersensitivity issues; my 3rd neuromed Stimulator internally fitted directly onto my nerves with additional electrodes in my back either side of my spine around shoulder height; further nerve deterioration in my neck which is making me feel nauseous with severe headaches, lack of movement due to pain and pins and needles in both hands.... I could go on as well as tell you about my medication but I think you've probably given up the will to read any more, hehe! Sorry for the rant, caught me on a bad day especially after filling in the PIP forms; ESA forms and; the incapacity forms. It feels like they're trying to catch you out with everything!
Sorry, rant over! ! Totally agree about hiding my pain and especially how it has manifested over the years. Hey ho! Keep smiling!
Hence the post! lets let it go where nobody gets hurt 'as in a family/friends way) Rant away, that is what I felt I wanted to do without hurting my loved ones.
I never, ever, lost any word you said, all I can say is you must be around my age as traction was the answer at that time, after approx. six weeks on a floor board, you were offered traction, and then afterward ...............for myself................ was put in a plaster cast for almost 12 weeks, who knows how much damage was done back then ( no pun intended).
A very difficult balance, sometimes I hide it other times it is never easy when the pain eats you up and not able to sleep 24/7.I try to step away when It is all to much.
Thanks for reply, It does comfort me in a weird way to understand that others are in the same situation as myself. I tend to go in to ( am busy) when asked to meet folk. .......
I hear you, it's better to laugh than to cry.... Have you ever been to a pain clinic? They really saved me, at least my life is bearable now. Hopping you are feeling as best you can sweetheart!!!! xxxxx Mitzi
Hi mitziblue, was referred many years ago, like 12? and was told an op was on the cards, will go back and ask again, it was so long ago and agree, laughing is the best medicine in the world.
I don't go on and on about it - as people have said, it does not always help to focus on it. However, I have to admit that I wish that I could explain just once how bad things actually are so that people could get a realistic view of my life and understand why things are the way they are i.e. why I may not turn up to something / have to leave things / can't function at certain times of the day etc. I am not sure that hiding things from people is necessarily always the healthiest option for them or me. Telling them I'm great when several hours earlier I have been rolling on the floor in horrendous pain or vomiting / feeling like I'm going to pass out ( and may do so again before the day is out) feels like I cannot be truly 'me.' Of course, my partner knows the score completely. He sees things every day. The problem with people not 'seeing' your pain is that they can get it into their heads that it is not a problem - or even that it does not exist! Sheilding people is a bit of a double edged sword.
The 5 Gp's ive seen are not interested in anything i say asked for xrays and all say the same thing what's the point in having xrays ? now i'm going back to the hospital again 2 nd time next month too start all over again
You mist not be embarrased and no one will think you are a hipocondriac. You need help and if the doctor does not know all your problems he cannot help you. You must trust him.
I have chronic pelvic pain and I explain it in detail to everyone I know,maybe for shock value..and when I have to stretch in public because my sciatica is killing me and people stare or make comments they get a speech about invisible disabilities, and empathy.
I don't really need to talk about it. Everyone who needs to know has all the info. I need to keep myself safe. There's nothing to be gained by not being honest about it. Why waste the GP's time if you are not telling them what's wrong with you? Elderly parents I can understand, but even they need to know you are not as fit as you were. I assume you have back pain from your name, there's no harm in telling them you have back pain, it's common, it's understood without having to go into detail. And more importantly, it gives you permission to slow doen a bit.
My family are great and have lived so long with me and my pain they read me very well. They see the pain in my eyes, the way I move. They know I've done too much when the fatigue sets in. They even know before me when a different bit of my body is in compensation by the way I walk. They know if I'm stiff in the mornings I need to do things to loosen up - usually sweeping the floor - walking and gentle arm movements. My youngest daughter is very insightful and intuitive, knows when and where I need a massage, she used to ask me to read her stories so I would get a rest. My elder daughter helps alot without any prompting when she sees me struggling to load the washing machine, she hangs it up for me. My husband jumps in too to help with housework, although he's careful not to do too much for me. I plan and cook the meals and he does the shopping. He does pilates with me as a preventative measure, and sometimes tries the meditation.
They always ask how and what I can cope with on a day out, and help find alternative things for me to do if I can't do what they want to do. Sometimes I don't go because they will have a better time without me (positive recognition of my limitations). Although now I have my thundersticks, I can go most places - even offroad hill walking which was previously discouraged by therapists as the body is out of midline too much. The sticks help with balance and taking the strain on uneven ground.
This may sound idyllic but took a lot of time and effort in the early days to get the co-operation I needed. The main thing is we are a family and families look out for each other, and that means being honest about limitations.
I try to hide the pain from my children, and my wife,she is fed up with the pain, she tells me that it has affected our kids negatively, I must sort it .
I had an injection done 2 weeks ago, but unfortunately not successful, I now have to go back to the surgeon in Sept,to see what next. The pain is tearing my life apart.I just drove to the park parked the car and tried to walk around, in sooo much pain,when I sat down, I just burst into tears.i feel hopeless.
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