Yep, know what you are going through and yes, many of us have been there and done the same thing. Some of us just refused to acknowledge that we have this problem, others have accepted it, but tried to hide it, then you have those who have had a fair amount of pain pretty much their whole life and didn't really fully understand the extent that their chronic pain had taken over their lives.
Whatever the reasons or reason is, at the end of the day the only way forward is to finally acknowledge and accept your lot in life, then move on in a positive manner. Easy to do? Ah, nope! But it is something that I finally worked out many years ago. I knew I was going to have this cursed problem till they nailed the lid shut on my coffin, so I just gave up fighting. I gave up chasing cures or therapies that would 'allegedly' have me living a more normal life, because at the end of the day for me, none of them worked. The only thing it did do, was keep my stress levels higher than they needed to be and because of the stress, my pain levels were always through the roof.
Once I shed all this stress, my pain levels dropped significantly.
As for support?
Actually, I'll just back-track a bit. I'm 61 and it was at the age of just 3 that I got my first lot of whiplash injuries, which affected my neck and lower back. Not serious enough to put me in hospital and if it did, they would not have been able to treat me anyway, because in 1960 they had no idea what to do with a 3 year old spine if it was injured but not broken.
I suffered terrible pain during primary school years as my body was growing. Terrible head aches and lower back spasms that would have me constantly stiffening and crying. I was after all, just a boy. So at 9 my lower spine was Xrayed and they found the L5S1 joint was narrowed from an old injury. All the doctor said was play sport. I was actually doing Gymnastics at the time. Not sure if that was smart, but I loved it.
Move forward to 1985 and I am sitting at traffic lights in a small 2 tonne truck and WHAAAM! Right up my rear end came a fully loaded metro bus with people standing up in the isles and the bus had no brakes. Well, except for me that is.
More injuries to my lower back, but this time a whole lot more to my neck and also compression fractures at T8 and T9. Since then I have suffered false angina pain whenever I do too much or the bloody weather is about to change. I get classic heart attack symptoms, which have been exhaustively investigated, even to the point of an angiogram in 1997, which showed a really healthy pump. So since then whenever my heart attack pain gets too much or it feels a little different, I take myself off to the ED and they stick my on a ECG machine to see what's happening to the ticker and it has always been running as smooth as a baby's bum.
My neck? Well, scoliosis, arthritis, degenerative disc disease and a trapped nerve root in the left side of my neck at C4, which is pretty high up. They can't do anything with it that isn't quite risky, so all I can do is exercise and take what pain killers I can tolerate. Because of this nerve compression, I live in that space just prior to a full on migraine. I have had migraines, but they are not as frequent as they used to be, because I have been exercising at the gym in an oldies class. The exercises are just gentle movement exercises and believe me, they are brilliant.
I am also suffering a chemical sensitivity, which has been with me all my life. I remember as a small kid vomiting, just because some old woman who must have bathed in perfume, sat next to me. I have always had trouble going into variety stores, because of all the toxic chemicals that fill the air from all the cheap crap clothes and other junk. I always leave there feeling very ill with a bad headache. I can't tolerate perfumes, aftershave or strong smelling deodorants. My kids have always had to watch this.
So, in saying all the above, you can see that I cannot alleviate my pain with medication. I do take them, but only small doses. If I take more, I get quite ill. I have already been in hospital back in the early to mid 2000s twice, the second time with Serotonin Syndrome. That was an almost near death experience. Literally!
Now I suffer over 80% of my pain and use hot shower before bed, exercise and distraction to take care of what the drugs don't touch.
However, the majority of my pain, I have just accepted it. I don't feel fear of it and I don't care about it. I have no knowledge of what life is like without moderate to severe pain, because I have been doing this now for 58 years. I do hurt......a lot. And yes it can get me down too. But I just take each day as it comes and go with the flow. I don't have a victim mentality or narrative in my head. No woe is me crap. I only did that a few times, until my parents threatened to give me clip under the ear if I continued. So that sort of worked and I have carried it on through to today.
There is always a huge number of people a hell of a lot worse off than me! So, I don't wallow.
Most days I rest for an hour in bed after lunch. I am whacked out by then, which is purely chronic fatigue that comes from suffering constant high levels of pain. But today however, we had a low pressure system come in fairly quickly with a few thunderstorms. I was as sick as a dog. I felt like I'd been rolled around under a road train, then tossed under a train. So after lunch, I took my normal medication and went to bed. Instead of the hour, I was there for two. Not normal for me, but I was pretty sick. And yes, my heart was really sore, cold clammy sweats, pain up the left side of my neck and jaw, down my left shoulder and arm and all the usual "You're going to die" crap running through my head, which had me just calmly ignoring it. After my two hours, it mostly settled down and I could put my rain coat on and go down the back to get a little wood for my fire.
Right now, I'm back to my normal painful self!
Karen, I never had any support as an adult. Been through marriage, but now on my own. My health only improved to the best it is today, once I ended up on my own. Now, that is not an ideal situation, because life for a pain sufferer is so much better with a supportive wife/husband, but if you don't have one, then you just have to get on by yourself. Believe me, this is very achievable.
I am now very busy. I volunteer with Chronic Pain Australia. Been doing that since 2010. I am the treasurer at our local Men's Shed and I am a Justice of the Peace. I sit in the signing centre here in town a couple of times a month, but I am on the court roster in the major town next to where I live. So I am in court a lot. Sitting with another JP, doing minor criminal cases and civil cases. Very interesting.
JP work is volunteer work with no money. Except they pay my petrol money and that is all.
So, when I come home to my empty house that has a beautiful fire ticking over day and night in the cold weather, I am often times knackered and I am so happy that I can by in my own space and on my own. It isn't a terrible thing to be a pain sufferer and on your own. But it is much better if you do have someone else.
Anyway, now I am waffling, which is normal for me. This happens when you only have yourself to talk to. Hehehehe!
Listen, if you want some advice from me, which I normally never give out, take a good long hard look at yourself, decide who and what you want to be as a person living with an invisible curse, then make the decision to go for it.
That letter you mentioned is gold. Give it to your family and tell them you have been this way for some time. But if they question why you never told them, maybe a few Mea Cupla's might be in order. You don't want to have them offside, because they will be a huge part of your self-management program.
Take things easy and do a lot of reading to educate yourself. Life with chronic pain is achievable and you can be happy. You just need to work out how you can manage it and that, is the hard part.
If you haven't already been to a multidisciplinary pain clinic, then get a referral from your GP and go. They will teach you how to manage your pain, but ask questions about the clinic first, because some of these clinics will try to remove your medication and leave you with little to replace it. Ask lots of questions from your GP.
Anyway, take care and keep talking.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Thanks Peter for taking the time to write such a lengthy reply. I am sorry but I have no intention of showing that letter or any parts of it to anyone close to me as I don't define myself by what has happened to me. I choose not to discuss it so I didn't give it anymore power over me.
I have had a wonderful pain specialist since my accident in 2003. I am just having a couple of rough days. I know it will pass.
I am finding the layout of this forum more difficult to use than others, so I hope I am putting this message in the right spot. It seems that this forum works on the opposite time line to most that if you want to get the most current replies you need to go to the end tab as the first ones that are shown are the oldest. Please let me know if this is incorrect.
Anyway, I was trying to reply to my most current message regarding that my normal copying mechanism of denying I have a problem was failing me. I am pleased to say that today I woke up and have had a great day. For some unknown reason I've been back in the land of the coping with minimum pain relief.
It's amazing how after 15 years it can still change so significantly day to day. I need to remind myself that bad days are always followed by good days, even when you think it isn't possible.
Hey! That makes two of us! I spend a lot of time with people who have no idea. I have to grin and bear listening to their "aches and pains" all the while thinking...mmm, me too, but I know that no one wants to hear about it, so I spend my life pretending my pain doesn't exist. My partner only knows how bad it is when I am in the "foetal position", up until I get to that point I live my life in denial.
I heard someone the other day on the radio who decided on a limb amputation to end her pain. One of the things she said that she now enjoyed was not having to check she always had pain killers on hand and working out how she could take them without appearing that she was a pill popping addict. I found this really powerful as that is so me! I will do anything so that people don't notice me swallowing pills, but I hadn't thought of the fact that I shouldn't have to hide it to appear normal.