Living with disability and chronic pain in Ireland. Ehlers-Danlos syndrome, chiari malformation, hip dysplasia, dysautonomia, hiatal hernia/ GERD etc. Taking part in the campaign to reclaim the word cripple as a positive. Ex cancer patient (Hodgkin lymphoma). Very pro-choice #RepealThe8th. Atheist/ sceptic/ scientific thinker/ anti dangerous woo. Love art, photography, animals and vintage toys. Trekkie in between all that... May contain sarcasm and crappy puns.
Saturday, 7 May 2016
The bad, the really bad, and the never ending
Physical pain is hard to talk about, almost as much as it is to live with.
I have had a horrible week. In general, I've had a very bad few months, but this week has been the worst -Although maybe I say that every week. I don't even know anymore.
The Baclofen I taken to control severe muscle spasms and tightness (which are usually quite good) are barely doing anything now.... It's a really strange sensation to explain. My body is like stone. Like something is grasping by whole body and squeezing.
A sharp, knife shoots through my shoulder blade. It cracks, pops, crunches. My neck twists. The only relief is by bending and pulling the shoulder, into place it seems. It's excruciating, but eventually after all the pulling and popping, it becomes numb. For a while.
It often travels from the shoulder, pouring down the arm. Becoming prominent around the joints -elbow, wrist and sometimes even fingers. My fingers have become deformed in the right hand the last few years, and I have no idea why. All I know is pain.
The hip pain is never really hip pain. It's hip pain, buttocks pain, lower back pain, thigh pain and knee pain. On days when I "over do it" it pops, then burns and swells. All these things are normal with hip pain, particularly the buttocks and the knee referral.
My flat feet cramp. My toes turn up in an effort to stabilise my body and not fall over. My legs are numb and unusable, for the most part.
I sleep all the time, yet I never
sleep. Two hours rest is the same as twenty hours. I zone out, I pass out. I dream only in lucid terms, and I'm conscious of my surroundings, yet I can often not move enough to wake my body, to open my eyes.
Every day is the same. Every day is night, and night is day. Time passes completely differently when the pain is like this. It consumes all. I have nothing or very little to do, but still don't have the time to do it. I can't concentrate on anything. I lose time. The pain envelopes all my senses. My body and mind turn to stone.
It's really not all bad. I play and cuddle with my dogs, I watch Star Trek in bed with Bicky, and he makes me laugh. I annoy the cat. Some days I do dishes and laundry. But mostly I just lose time.
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I'm sure you've done everything you can for your health, recently I was watch "The Truth about Cancer". If you've never heard of or watched it please please I beg you to watch it. I don't work for them and I'm not getting paid for this comment. I am only writing you because I know the treatments work. There are 9 episodes on YouTube or you can buy the DVDs. I wish you health and happiness.,ReplyDelete
Hi Mira, thanks for the comment :)Delete
What's the gist of it? To be honest if it's based on pseudoscience or anti-science (sugar theory, fake alkaline diet, etc.), then it's not for me. Not to say I don't agree with the basics -Good food is good for you. I haven't eaten meat since I was 13 and have mostly a plant based diet now. I juice constantly too, I love juices. But that's just common sense, that's just what we learn as kids -eat your vegetables. I'm not "cleansing" or "detoxing", as those terms mean nothing... I think people can *really* over think the basics of it all. Totally respect everyone's right to a belief system based on nothing but pure belief (such as religion), but when it comes to my health I like real scientific research :)
Should point out:Delete
By far not a scientist or an expert, and never claim to be, but I trust the people who spend years studying and have peer reviewed research as a result of it. Luckily I do not have cancer any more, science cured me a couple of years ago (my pain and illness is unrelated, from birth issues) x
Thanks for sharing your thoughts and such a personal story with your readers. I was really happy to find your blog and I know there are so many people out there who can empathize and relate to your story. I know there is nothing out there that can get rid of the pain completely and as a chronic pain sufferer myself I am just constantly searching for way to alleviate my symptoms. I wanted to recommend a book that has helped me immensely called "Walking Well Again: Neutralize the Hidden Causes of Pain" by doctor Stuart Goldman (http://walkingwellagain.com/). The book is for absolutely anyone who is looking to understand the root cause of their pain better as well as how to reduce the pain without having to partake in surgeries or take medication. I find this to be so important because medication is not really fixing the problem, just taking away the pain. He also provides many case studies and examples, which are so helpful because you learn what has worked for others who suffer from a pain similar to your own. There are over 80 personal success stories within the book and it is inspirational and a must read. Hope you will check it outReplyDelete
Unfortunately as I need a hip replacement, surgery is actually the only option -I'm not sure ginger and yoga will fix that 😂 Thanks anyway for the recommendation, will take a look.ReplyDelete
I tend to agree that it is doubtful that herbs can cure chronic pain that is that severe, but what do I know. I'm sorry you suffer so much but I'm sure you get tired of hearing that. I love your spirit and sense of humor.ReplyDelete
Thank you Heidi for your lovely comment :) I definitely feel a bit better and have bit more energy when I eat well and have loads of vegetable juices. Although I think that is just common sense. I'm hoping when I have my hip replacement it will go a long way in helping (although I know it can't undo all of the damage) to relieve some of the pain. The wait is just frustrating, will probably be another year or two xxDelete
I am sorry you have a chronic illness. I know the pains, as I have one too. It sucks knowing something as simple as bending over to pick something up can put hip out and make my back spasm.ReplyDelete
Living with chronic pain is one of the most challenging difficulties in life. You wake up everyday in pain, you live your day in pain, then you can't sleep at night because you are in pain, only to have the next day to look forward to repeating it all over again. This can make one week seem like an entire year. I really want to commend you on sharing your story and tell you that you are one strong person. Not many people truly understand what it is like to live with chronic pain and I believe that it takes an unprecedented amount of strength to live with chronic pain. I really look forward to reading more articles from you!ReplyDelete
All of the symptoms that you've described sound excruciating. I wish I could offer the same advice of exercise, eat right, yoga, but it sounds like you have all of those covered. The nerve pain can be especially cumbersome, due to limited treatment options. I really hope that someday, somehow you can find some relief.ReplyDelete