I get it

If you live with chronic illness, you generally live with chronic pain. That pain can be anywhere, it can be in the same place all the time, or it can be transient. It can be easy to explain or it can leave you constantly puzzled and constantly questioning, is this part of my condition, or is this something else. At times it seems as though its only purpose is to drive us made, at others, it feels like a warning. Pain can dominate our days, or it can lie quiet, just waiting to catch you off guard, like some kind of ninja style assassin. Whichever it is, there is only one thing for sure, it is going to hurt, regardless of the medication, or the care that we take, it will hurt us.

Personally, I have few memories of life without pain. Brief spells in my childhood, but, the dominate memories, all contain pain of some sort. In fact, not my first, but my second memory of my life, is all about pain, not from illness, but from curiosity. I must have been about three, definitely no older. My mother had one of those old-fashioned sewing machines, mind you, it probably wasn’t that old at the time. She was using it and I was stood watching the flywheel at the back of it. Those spinning spokes fascinated me and despite my mother’s warnings, I just had to put my finger into them. Other than the pain, I don’t remember much else, other than the fact, that it ripped my fingernail off. The first pain, that had no explanation, didn’t show up until I reached my twenties, and from then on, I don’t remember ever being free of it.

These days, I don’t think there is a minute of my day, that doesn’t include pain. I know that that sounds horrific, but I’m not talking about the stop you dead pain that leaves you in tears, no I’m talking about those smaller ones, those aches and pains that seem to live in every cell. A sudden pain in my lung, when I take a breath, then in my lower gut, from something moving inside. Along with the one that for no reason which appeared high in my left lung, next down to my diaphragm, and a shooting spasm in the arch of my left foot, with an ache sitting steadily in my right shin, just as the back of both lungs gently burn and both arms complain about typing. I wrote that as it was happening, which means it probably took twice as long as it did for you to read it. A snapshot of me, but I could go on and on as every minute is like that. There is no silence in my body, no time, other than when I am asleep, that pain leaves my alone. Thanks to the medications, the very ones I so wish, I didn’t have to take, all of it is at a level that I can cope with, a level I have adapted to see as normality.

If it wasn’t for those tablets and elixirs that I swallow on the demand of the clock, I don’t know what life would be like. If I forget or get lost in time, if I don’t take them, when they can take over from the previous batch, I get a glimpse. It’s enough to send me moving about as fast as I can, to correct my mistake. Even then, I know there will be some medication still in my system. Not enough to keep me in my normality, so the truth, the reality of life without them, I have no idea, and although I don’t want to take them, I also know, I couldn’t stand to live without them. That is how controlling pain is. It takes over our lives, in ways that those who have never felt it, can possibly every understand. Whether I like it or not, my life is pain, low level or extreme, it is my life and I can’t escape it, any more than all those who share my lot of life with chronic illness, can escape theirs.

If we didn’t adapt, if we couldn’t adapt, then none of us would exist for long. They can prescribe all the drugs they like, but, they never take all the pain alway. I used to wonder why it was that when reading history, there appears to have not been, half the illnesses there are now, I think I now understand. Imagine your life in 1500’s, what would you have done, with no drugs, no treatments strong enough to help you, or nothing to help you at all. Even not, nothing gives us the freedom and peace that we yearn for, but they get close enough, to stop us from being driven insane. I used to fear that I would lose my sanity. I used to fear that I would fall into those deep depressions that so many do. As I have written before, I have been there a long time ago, drive by the hell of my earlier life, so I know depression when I see it. Adapting isn’t enough, it’s essential, but not enough.

For me, I have two sanctuaries, the first is clear, this, everything that I write, this is my free and constant counselor. You don’t need a person to talk through how you feel. Write it down and firstly, you fix so much in your own head, just because it’s no longer just in there. Publish it, and the world tells you what needs to be done. My second, I’ve also written about many times, simple relaxation. I know many poo-poo it, but the longer you use it, the more practised you become, you really can remove pain, but unfortunately, only while you’re doing it and for a short while afterwards. Having said that, recently I have discovered that even when I am writing, I can apply a not quite so effective, but helpful level of relaxation when the pain gets too annoying. I guess, that that is one of the tricks, that once you’ve mastered the silent lying down in the dark version, becomes possible. A few seconds concentrating on the top and base of my spine, then the area where the pain is worst, can often give me the relief I need, when pain edges above normal. It helps, just as constantly checking my posture, even when it’s not causing pain, all adds up to some form of control. When all else fails, then there are more meds. those booster pills, which flood me with a quick shock of more Morphine. They are always there beside me, ready for ease of access, but I keep them, for when nothing else works.

Pain is our life, fact, yes, we and our doctors can tweak at it, but its ours for life. Strangely, once you accept that as a fact, life get’s easier. Before I did, I made it worse, I fretted and stressed about it. I was still at the point when I stupidly believed, that medication should take it away totally. If only someone had explained that it didn’t work that way, maybe, I might have avoided a couple of years of what was, self-imposed hell. Now I understand. Now I get it. I don’t like it, but I get it.

 

Please read my blog from 2 years ago today – 01/01/2014 – Your future laid out before you

I am suffering again this morning with not being able to find any way of sitting that is comfortable. It actually started at around 5 am this morning, I woke up totally aware from the first second that my left buttock…..

 

 

34 thoughts on “I get it

  1. Pain is a constant for me. Like you said it isn’t stop you in your tracks kind of pain just nagging and niggling, i take over 200 pills per week for the symptoms of MS and arthritis! It is just a part of life now and not really that big a deal anymore. 🙂

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  2. Was diagnosed with CFS & FMS in 1992 Then later neropathy in left arm/hand nerve damage in neck so I do have chronic pain have take some form of narcotic/opiate painkiller for 20 plus yrs went to dr last wk he tells me no more as a group theyve decided they’ll no longer prescribe opiates for chronic pain patients isnt that sweet? and they wonder why chronic pain patients commit suicide amongst other things.

    Liked by 2 people

    • I find that one of the stupidest things I’ve ever heard. I know there is a school of thought that they don’t work, but tell that to our pain. I have been on so many other drugs over the years and the first time I put my head down and slept the night through, was the day I was given Morphine for the first time. These days, I’m on the slow release form, but I also have booster pills for when things are tough. I still get the same effect without fail, when I take one, the pain doesn’t vanish, but the worst of it leaves. I am in no doubt that the work, as are millions of others.

      What on earth have they given you to replace them? Are they giving you a smaller dose as you come off them? They can’t expect you to go cold turkey, that would be cruelty!

      Right now, if I were you, I would be looking for a new doctor. I hope that you are OK right now and that the pain gives you some peace, while you get things sorted out.

      Take care (((Hugs)))

      Liked by 2 people

      • I so agree. Who ever started this that pain meds don’t help us obviously don’t live with it everyday. I am afraid that in the near future none of us will have pain meds. What’s the alternative?
        I went thru what P K KUHL went thru. And it was pure hell, 3 times. I don’t think I can go thru it again. I take the mildest form of pain meds now and barely make it thru a day. I wish for better medical care for all of us everywhere. Love these blogs ! They help so many….😌

        Liked by 2 people

  3. A lot of people have no idea how pain can change you — how draining it is. They don’t realize that when you have pain somewhere, your mind is working to deal with that pain, even if you don’t realize it is and then after so many hours, it just gets tired and then so do you. I won’t pretend to have the type of pain you have but I know what you mean about constant pain. I do have that and my body was once completely broken and shattered in a matter of seconds, so I also understand severe pain. I’m sorry that this is such a constant battle for you.

    Liked by 3 people

    • It is a constant battle for an unbelievably large number of people. If there was a way of seeing pain, I think all of us would be shocked by it.

      As you say, it wears you down. To an outsider, I would appear to do nothing with the few hours I am awake. I get more exhausted now, than I ever was after the hardest day at work. One of the reasons that I write, is because I never want anyone to believe that they are alone in this, as in an odd way, it helps to know others share our lot. It doesn’t matter the level of our pain, pain is pain and to us, it’s something we simply don’t want to live with.

      Of all the things I hope science will one day fix, if not all the conditions that cause it, it’s the whole business of pain. Take that away, and the world would change instantly for us all.

      Take care (((Hugs))))

      Liked by 3 people

    • I believe that it does work well for some, but when I tried it, I simply went to sleep. Here in the UK it is against the law. I don’t want to make my husband a criminal and just to deal with my pain.

      The pain clinic did tell me that there was a cannabis based medicine that if I insisted, they could apply to NICE, the body who says whether or not a new medication can be prescribed or not. They also told me that the results that had been shown to that point, showed it didn’t work. I could see the point of going through a process that was unlikely to be approved, for a drug that didn’t work. 😦

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      • Cannabis doesn’t work for everyone, and I’ve read many comments from patients who used it once or twice and then gave up. Or they had a bad experience with it in their past. But there are so many different strains — I’ve tried like hundreds of them — and they tend to work differently for everyone. If I had to compare cannabis to opioids, I would say that it’s similar to codeine and hydrocodone. Of course, with cannabis extracts, you might get something as strong as morphine, but I don’t have that much experience with extracts. Not that you or I have access to them.

        Most of the stronger opioids gave me nausea, but I rarely have that side effect with cannabis. While opioids were better for the physical pain, the mental pain of managing constant pain can be just as damaging, and opioids didn’t really help me with that. Cannabis allows me to be creative, more able to distract myself from the pain with art and music — never really got that from the pills.

        I understand you’re not comfortable with cannabis, but I would hope that if you think it will help sometime in the future, you will at least try it again. I guess you would have to go to the underground market, which I had to do when I couldn’t afford the medical cannabis program in my state. No, I’m not comfortable with the illegality of it, but managing my pain is more important. But then, I’m single, and I’m fully prepared to face whatever consequences may result. And in the end, it’s much better for me than going back to the pills, which I might have to do in the future, anyway. Although I doubt that I would be able to access that kind of drug therapy again, at least here in the U.S.

        Liked by 2 people

      • I can see both sides. It is illegal here in my state. But,I know people who swear by it. Say they will never take another pain pill. But I tried it 2 times and on time I thought Ibwa having a heart attack. Scary. The other I laid down and had the best night sleep of my life. Two different kinds. And I don’t know which was good. And have,no way of getting more. But if the Dr. doesn’t give me something other than tramadol I am go in to have to do something different….😣

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      • Brenda: I think part of the problem with cannabis is that it’s not really seen as medicine, at least by some people. I’ve read many user comments (where you find the best information), and the anxiety attack you describe is (I think) somewhat common among first-time users (let’s call them lightweights). I think it’s partly a reaction that’s caused by the fact that the drug is really illegal.

        It’s a lot easier and cheaper to have insurance cover a doctor and prescription meds. A lot easier to take a pill. Finding the best cannabis for your condition can be exhausting work, especially in these markets. But the cannabis market is growing fast, and someday soon, a dispensary will open near you. It will have all kinds of edibles and even — get this — cannabis suppositories. (They already make them.) It will also have a variety of high-CBD products for those who don’t like the side effect of the THC.

        I was just thinking today about all that I’ve given up for the opportunity to have access to cannabis — like the expense of moving to another state. I think it works great — when you can find good bud — but I don’t believe it’s some kind of miracle cure. However, bud does treat a lot of different symptoms, besides just helping with the physical pain. For instance, constipation. And because it’s painful for my jaw when I eat, I like that bud allows me to enjoy my food more.

        Sorry this is so long, but I’ll just mention that there are few options left for pain patients, like cannabis. But if you get desperate, you might try buprenorphine or kratom. I haven’t tried either, but I’ve read that they may help. You have to go through a doctor for bupe, and the internet for kratom. Both risky, but desperate times call for desperate measures.

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      • Here in the UK, the only way to buy cannabis anywhere, is from street dealers. You never know what you are getting and can be arrested if seen buying from them. The same goes for growing it, there is no way here, to control what you get in anyway. The two things together, makes it a very risky business. I know, that few lucky people here have managed to successfully self medicate, but the risks are huge. Many have been arrested for trying to get what they need into the country. It is a drug that for the majority of us, is both unthinkable and unattainable. Comparing the UK with the US, it is a black and white world.

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      • I’ve learned that it’s really all about who you know. And since I don’t know very many people, it’s been more difficult for me to find. I tell those who are desperate to find it to ask some young people, as they have a totally different view of the plant. But I know it’s scary to go to the underground, and I’m sorry to hear it’s even worse in the U.K.

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  4. PAMELA, YOU UNDERSTAND THIS,BUT:: ALL WITH CHRONIC PAIN/ILLNESS’S; IT CAN/WILL GET WORSE. FOR SIX WEEKS I HAD NOTHING BUT DIRTY WALLS AND PAINFUL NOISE,DAY….AFTER…DAY. PLEASE, ENJOY EVERY PRECIOUS MOMENT YOU GET,BEFORE IT ALSO GETS TAKEN AWAY.I’M ALMOST “NORMAL”(IN THE WORLD OS CHRONIC B.S).I FOUND OUT JUST HOW AWFUL IT CAN AND WILL GET AGAIN. DON’T WASTE ‘YOUR MOMENTS’.

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  5. “I used to fear that I would lose my sanity.”

    I’ve also had that fear — that the pain would overcome my sanity. And really, my brain is all I’ve got left. Like, I don’t know if more chronic pain patients suffer from dementia, or if that’s mostly in your DNA. At the risk of sounding like a pothead, I’m thankful that cannabis allows me to… not worry about that fear so much. 🙂

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  6. I can’t take pain meds. I’ve had an ulcer so NSAIDS are out, I have a very hypersensitive reaction to opiates, even tramadol. I can have Toradol shots for migraines but it doesn’t help anything else.
    I’ve tried cannibus, it is illegal here, so I never know what I’m getting, and for it to work for pain I’d have to get way too high.
    So, I’m trying the stain without THC. That’s the psychcogenic properties in it. I’m using Charlotte’s Web. I’ve only just begun and haven’t gotten the dosage right yet, so I can’t say positively if it is going to work. The only company authorized to grow and see it is Stanley Brothers they go through governmental standards. I’m. Hoping this works for my persistent daily headaches, and degenerative disc disease…and all the other pains that come up.
    Last year I went through Avascular Necrosis and a hip replacement with no pain medication. Yes I used cannibus, but getting too high makes me have vertigo.
    Good luck to everyone out there with any type of pain or illness….I get it.

    Liked by 2 people

    • I DON’T KNOW ANYTHING ABOUT YOU BUT I HOPE THE CANNABIS WORKS. I HAVE HAD ULCERS FROM MY STOMACH,UP TO MY SINUSES.(VERY PAINFUL).;HOWEVER, THERE IS MEDICATION THAT YOU CAN TAKE FOR PAIN. THERE IS ALSO PATCHES FOR THOSE WHO CAN’T DIGEST ANY PILLS. I LIVE IN CANADA, SO I CAN’T TELL YOU WHAT HAS HELPED OR NOT. RESEARCH AND TALK TO G.P. GETTING TOO HIGH, COULD CAUSE A FALL:INJURING THE OTHER HIP..

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      • Princessmerde, i dont know you, im sorry you have those ulcers they sound very oainful. I also have an allergy to opiates. My pain specialist at Duke can do very little to help with my pain. Patches still cause allergic reactions, and GI irritation. Perhaps you have different meds in CA than we have.
        When using Charlotte’s Web you don’t get high. That was the point of my comment.
        I never use regular cannibus for pain, only to stop vomiting during vertigo, and I don’t feel the high then. And I sure won’t be walking.
        I tried it for pain when I had the AVN pain, but I don’t like the drugged up feeling. But I felt much more doped up when I was able to take regular pain meds. I was very afraid of falling then.

        I haven’t tried anything without the knowledge of my dr. I am not irresponsible.
        Right now I feel I’m being judged and was pretty much called a liar about what pain meds I can take. I felt I had to explain myself.
        It would seem like there would be more understanding in the chronic pain community.
        In no way have I ever suggested that anyone ever go out and try cannibus or any other pain medication, that is a personal decision between them and their doctor. I only offered my experience. Odd thing, the medical community here, where it is illegal, are more understanding. Maybe it’s because they do know me.

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      • I’m sorry you too Princessmerdes comment that way, I don’t think that was what she really meant. If I had thought that, I would have deleted it, before you saw it. She can be a little blunt at times, but she never means to hurt.

        I can’t comment on Cannibus in any way what so ever, other than the legal aspect in the UK, which isn’t helpful to anyone. I hope it works out for you. (((Hugs)))

        Liked by 1 person

    • Wendy, I don’t think princessmerde was judging you on your choice of treatment, just recognizing the side effects that some patients can experience with cannabis (as well as other pain medications).

      I was just wondering if you have nausea with your vertigo? Because there have been a few strains that I’ve tried that made me nauseated, which I found odd, since cannabis is used to treat nausea. I had the same problem with the stronger opioids, like Oxy. My pain levels are high, so I need strength in my medicine, but too much, and the resulting nausea isn’t worth it.

      However, hydrocodone never gave me nausea, but since it’s a short-acting drug, doctors don’t like to prescribe it anymore for chronic pain. I’ve read that many patients have found relief with high-CBD strains, and I’ll be interested to hear if Charlotte’s Web works for you.

      I’m of the opinion that a lot of my pain relief is found in the side effect that is called being “high,” so I don’t feel stigmatized by it. Really, what’s so wrong with a side effect that feels good instead of bad? Like, duh, that’s a good thing. 🙂

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      • Thank you…I may have been a little sensitive. Been that way a bit lately.
        My vertigo makes me VERY nauseous and can make me throw up for hours and hours. Cannibus has stopped me from throwing up many times, (and I have Phenergan injections at home). If it weren’t for that I would have been in the ER more times than I can count for dehydration. I’ve been there many times before I started using it. That’s the main reason my doctor suggested it. I don’t use much, only enough to stop it. When I need it for that, I don’t feel high at all. Maybe it’s because the world is spinning so fast. Maybe it’s because the medication I take for vertigo is Valium, it is the only medication that is recognized as a vestibular suppressant, so when I have an attack, first thing, Valium. I have severe rotational vertigo often. I also have motion vertigo, where you feel like you are moving, but that isn’t as bad. The rotational vertigo it hell. I have attacks up to 18 days a month that can last a few minutes up to a days. I have found it as soon as an attack starts it will often not get full blown things will calm down faster and I won’t get sick.
        Often I will still feel nauseous, but I don’t throw up.
        Maybe I’ve been lucky about the strains I’ve gotten. I have found that one time it didn’t work as well, I had to use more. But I use so little, I haven’t had to get much over the last couple of years and that’s as long as I’ve used it.

        Before developing the hypersensitivity and had to stop using them. I often threw up with a lot of pain meds too, and they made me feel awful. Oxy made me stop urinating…that was just creepy. I did use Hydrocodone for a long time. like you it didn’t make me sick. But I didn’t like that it was mixed with tylenol that stuff can ruin your kidneys.

        I bought the low dose Charlotte’s Web so it hasn’t been doing as great of a job, I didn’t realize it was such a difference between the two when I purchased it. I am wondering if I got the higher dose if it would be more effective. I’m thinking it would. I’m lucky that I don’t have severe pain every day any more. The degenerative disc or spinal stenosis don’t hurt severely all the time. My persistent daily headache, I’m so used to..but my doctor said if we could get those under control she believes I’d have less migraines. I’d also love it if it would help with the migraines. It isn’t supposed to cause rebounds, another reason I try hard not to take much medication. fear of rebound headaches.

        I’m glad you have found some relief. I agree, if you feel good, it’s much better than feeling bad. I’m actually afraid of feeling very high because of the vertigo, I don’t want to tempt fate and have it tip the scales and cause an attack, so if I start to get high, it kind of freaks me out.

        I wish it were legal here so I would always know what I am getting. That’s another reason I would like to use Charlotte’s Web. The problem with it for the nausea vomiting, I don’t see how I can get it in my blood stream fast enough. But I’m willing to try.

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      • I AGREE.I SOMETIMES SOUND PUSHY AND ARROGANT BECAUSE I TRY TO HELP.I DON’T JUDGE; BECAUSE I GET JUDGED AND DON’T LIKE IT. IF YOU ARE HURTING AND SOMETHING MAKES YOU FEEL BETTER, JUST DO IT.

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  7. Thanks for your reply, Wendy. I find it very interesting to learn about what helps other pain patients. FYI, you can get hydrocodone without the Tylenol, but it has to be made at a compounding pharmacy (which can get expensive). When I took hydrocodone without Tylenol, I found it caused nausea, but I don’t know why.

    I’ve followed the cannabis industry for years, and I’ve watched the popularity of high-CBD strains grow. Unfortunately, I’ve read about more pain patients being ripped off than being helped, but that’s how the internet works. The absolute best way to be a medical cannabis patient is to know your grower, which is not an easy thing to do. In fact, most times, it’s impossible. But that’s the only true way to know the most about the products you’re using. In some states, there are caregivers that supply small groups of patients, which is what I hope to find one day.

    I also wanted to let you know that there are actually cannabis suppositories, at least here in my state, used by those who have difficulty taking medication orally. I’ve also seen cannabis patches and just a myriad of other delivery options. I know it doesn’t help to know about these things when you can’t get your hands on them — which is why my long-term plan is to move to Colorado. 🙂

    Liked by 1 person

    • I understand about knowing your grower. We thought about it. But in our state on oz or less is a slap on the wrist and a fine. More than that or even 1 plant is considered intent to distribute, they throw away the key. You could have 2oz or 20 killos, same penalty.
      I do get from same person, he gets from same person, but I don’t know from there.

      The high CBC I get is from Stanley Bros. They are the only company licensed grow it. They follow strick government guidelines. They are based in Colorado. There are a lot of other companies that do rip people off. This company supplies the charity The Realm of Caring. They supply to kids, who need pain control. Or those in financial need.

      Shhh, in my state it isn’t legal at all. I either make a tincture, but sometimes I can’t take that, I’m too sick, or I vape, that’s the quickest to stop the vomiting. The Charlotte’s Web only comes in drop form, so, I’m not sure about the efficacy.

      I don’t talk about this on my blog because I don’t blog annyomous., and it’s illegal. But all my doctor’s know, and when Meniere’s people get in touch with me I tell them my story . But I’m more severe than anyone I’ve met.

      Thanks for the discussion, I’ve learned much.

      Liked by 2 people

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