I spent part of yesterday afternoon reading a few blogs from other people with COPD and chronic pain. I was surprised by how many of them were putting in so much time reading medical sites and looking for answers to questions I haven’t even bothered asking. I always knew that I had a different way of approaching my health and reading how other people see their health, not just yesterday but in the past as well, has totally confirmed that. When I was first diagnosed I did spend a lot of time reading about what was wrong and how bleak my life might be. For me that was enough, I didn’t need to make myself feel like I was locked in hell, any sooner than I had to. Other than back then, I have only really read them if I had a real reason to do so. The odd new symptom, something I had heard on the news or read on twitter. Other than that, well medical sites and especially site dedicated to any condition that I have, have been there but not seen. Just as I don’t read the leaflets that arrive with my meds, I ignore all those expensive websites as well.
No matter how I try or how much I read of other people blogs, and no matter how well I understand that we are all different, I find it hard to understand why someone would want to spend the little free time we have to enjoy our lives, reading and researching the very condition that is so quickly stealing that life. If I read every site out there that talks about Multiple Sclerosis in all it’s forms, I don’t believe that I would gain a single thing. To me, all I would be doing is wasting the precious time I have left. If you are one of the people who fills their day this way, then please be assured, I am not getting at you in any way what so ever. It’s just that I truly believe that it is my doctor’s job to trawl through all those medical papers filled with figures and shorthand that without their training is generally confusing. Just as it is their job to suggest what medication or treatment might help me, I don’t even want them to sit and tell me how and why it should work either. I am one of those people who just accepts their knowledge and does as I am told. This to me is the logical way to approach my health, yet I am finding more and more who want to know more than their doctors and it kind of baffles me.
I understand the need to know, but I fulfilled that years ago post diagnosis. I guess that it might be what I learned then that left me totally convinced that the best thing I could do with the rest of my life, was to make it as comfortable as I could and to enjoy it. The more blogs I read, the clearer it became that the majority of people writing about their health, are by people searching for a cure. Clearly it will sound odd to the majority reading this, but that is something I have never done. Not once have I sat down and entered a search into Google in the hope of finding a cure for any of the conditions that I have. It has never even entered my mind to do such a thing and it appears that I am the odd one out. I accepted from almost the day that I was told, that I was dying and there was nothing else to be said or be done about it. The one thing I could do was to work out for myself the best way to live. I guess that is why I got more and more angry when reading other people’s blogs, as to me they weren’t telling the truth. What I was reading was sugar coated and full of false hope, what I wanted with the truth and real hope. Where were the people who spoke about their health just as it really was, day to day. Where were the people who were in pain, who couldn’t stay awake, who didn’t know how to deal with their health. Apparently, they were all looking online for a cure and not actually talking about their live’s at all, not telling us how they are making it through and dealing with their symptoms as they affect them, so I started writing.
There are millions of different sorts of people out there. If you were an alien reading the blogs written by the same people, you would rapidly come to the conclusion that once ill, humans become clones. It is the oddest thing, but I can count on my the fingers of my two hands, the number of blogs that I have come across that were taking a new or different approach to their health and what they shared with the rest of us. Logic alone says that should never happen, so why has it? I can only think that it is down to the power of social media. Somewhere out there, there is the first highly successful blog by someone with a chronic illness. It’s not us who become clones, it is all too often though, those blogs. Imitation may be the highest form of flattery, but it is also a dangerous road as it destroys self-discovery and individuality. Don’t read my blog, or anyone else’s and then start to write about your health in the same style, write what is in your heart and in your mind, it will do you and the world of blogging, far more good.
The reality of chronic illness is that the majority of them are disgusting, painful and deadly. To me, you can’t sugar coat that. I actually think that trying to might be the reason that some and I do mean just some, fall into depression. I fear that some are so busy trying to gloss over their reality and to convince themselves that it doesn’t have to be nasty and real, that they don’t even see it coming. I have tried and come up with many theories as to why it is that I cope mentally with all of this so well. Although they have all had a new twist, or a new angle, the core of all of them has been the same, I am realistic about the whole thing from beginning to end. I allow myself to adjust, just as I have been doing in the past week, to all new major events that I can’t sort out or find a way around. Then I move on from that point without looking backwards at what it means I have lost all the time. If I were to spend my time constantly working on finding that one new thing that might just be the cure my doctor’s have missed, I wouldn’t have the time to simply heal. Personally, I believe that by not trying to do anything other than survive, that I am doing so, the best way that I can.
I remember once someone saying to me that the worst thing I could do was to dwell on it, that I should keep myself busy and stay positive. I don’t think there is a worse thing anyone could do, not surprisingly the person who said it was my Mother. We have to dwell on it, it’s like saying don’t worry, stopping breathing isn’t an issue. It’s a huge issue. And as for staying positive, well there is that sugar coating again. I am incredibly positive about my life, not because I try to be, but because when you deal with life as it happens and I don’t try to hide it or anything else, being positive just happens to be a side effect. I know that we all have our own way of dealing with everything and what is right for one, isn’t always right for another, but it feels to me that there is an almost whirlwind of people, probably mainly driven by mothers, out there pushing this fake positive down everyone else’s throats and others are just caught up in it. There are as many different ways to deal with our impending death and our never ending illness, as there are ways to live. I frequently fear that too many people seem to be caught in the same whirlwind. It is OK to have days where the pain is totally destroying you. It is OK to want to kill your Doctor, well as long as you don’t actually do it. It is OK to want to curl up in bed and feel like the world is ending. Just as it is OK if you really, really want to, to put on a plastic positive smile or look for a cure every day. As long as it is you and you’re not doing what everyone else is doing, because you have been brainwashed into believing, that it is what sick people do. I believe that sick people should be allowed to just be sick people and as individual as they were when they were born.
Please read my blog from 2 years ago today – 22/09/2013 – A night with a lesson
Two Rooms Plus Utilities 
NO COMMENT; JUST WANTED TO SAY HAVE A GOOD DAY. MY FINGERS TURNED TO NOODLES, CAN’T TYPE
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OMG! I read this entire post with my eyebrows raised. I am so sorry that you haven’t experienced true hope for an amazing future. Even living a life with chronic illness can be a great one. I have lupus for 17-18 years and 4 years ago it almost took my life. I too just relied on the drs for a solution. They gave me whatever pill they thought was right for me and I accepted from 1998, when I first got diagnosed to 2011 when I was on what I thought was my death bed. When I miraculously made it out of that one, I began to research alternatives because (shocking news) doctors don’t know it all. They try their best with the knowledge they’re given but there is so much more. And I wanted to find it. To them we are just another chronic illness. When they go home they enjoy life happy and healthy and forget about their patients. We are the ones who have to live with the problem. It IS our job to find the best for us. I found functional medicine and they found the problem and began to fix it instead of just letting me survive with as little pain as possible. I have begun healing since I found an alternative. I am not saying you should try to find a solution. If you have accepted the fact that you will die a slow and agonizing death, that’s ok too. We all see life differently. I am just telling you that those people that aren’t sharing about their grim present and hopeless future aren’t trying to be fake. They are optimistic because they have hope. I have a God who’s amazingly grand and he has guided me to a place of true joy in spite of the terrible disease that tries to live inside of me. I was told something similar to what your mom said. But in my case it was my nurse. She gave me permission to Feel sorry for myself for 5 minutes a day. After that stop. Move on. Enjoy life. I cried myself to sleep and suffered countless days because I couldn’t walk, breathe, or even talk. I felt sorry for myself. But only for 5 min. Then I lived. And that’s when I began to heal. Eventually I didn’t need those 5 min. I hope we can inspire each other through our blogs. That is what it’s all about after all. I mean no harm by this comment.
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I am guessing that this is the first of my posts you have read. It’s a guess, but if you had been reading for a while you would know that I am a totally positive person about both my health and my life. As I said in my post, it is the almost identical cloned styles that get to me, not the subject. I also said that I wasn’t getting at anyone who did spend their lives searching for a cure, but I simply don’t understand why, as I prefer to live, not search.
I don’t feel sorry for myself and never have as there is totally no point in that. My life is far from grim and my future anything but hopeless, but my posts are true to reality and written in my style, not a clone of any other. I think you missed the point, it was a plea to other blog writers to be totally truthful about their health in every way, not just live through the next alternative or even scientific discovery they have made. Life is too short to spend it worrying about finding something that doesn’t exist, a cure for an incurable set of conditions. With PRMS, COPD, Fibro and several others, there isn’t a chance of even making the slightest difference to my life, so I am going to enjoy it, not worry about it.
I said several times that we all think differently and are different people, if you read it again, you will see that. All I am asking is in the last paragraph, no one who is dying can have a sugary sweet cover all of the time. Reality just seems to be missing from far too many of them.
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I’M HAPPY THAT YOU’RE FEELING BETTER; HOWEVER,EVERYBODY IS DIFFERENT. FOR SOME OF US THE PRESENT IS THE””PRESENT””.EACH DAY IS A GIFT AND WE TRY NOT TO DWELL ON AN UNCERTAIN FUTURE.
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Actually, I’ve read up on medical options and solutions because my doctor doesn’t know everything and hasn’t the same interests as me, even though Pulmonology is his career path.
I read or study up on whatever is happening in order to calm myself, to teach myself, or to solve a problem.
Mostly, I find alternate treatments to consider that don’t have the side effects of many pharmaceuticals, and will often find old school styles of medicine which are much less costly and work just as well.
For me, it’s not about not accepting the diagnosis – it’s more about improving my quality of life for whatever time I have remaining.
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My doctor doesn’t know anything about MS either, he told me he had never even met someone with the condition. It wouldn’t have mattered if he did, my version is so rare, most Neuro’s don’t ever meet someone with it. I personally don’t believe in any alternative medicines and made a decision long ago that my Science is the only hope, but none of that is of importance.
I wasn’t writing about you, or how you live! I was writing about an attitude and style that I have noted in many blogs written by most people who like you search for a cure. There isn’t a refusal to accept the diagnosis, it is a relentless sugar coating of the reality of their conditions. The majority only write about the solution without even attempting to explain what the reality of the problem is. To someone without that condition, it is incredibly odd to read. The reality of life with any chronic illness isn’t sugar and roses every day, it’s a mix including vinegar with thorns. Those type of blogs don’t help the cause of the chronically ill as it make it appear as though there isn’t really a problem.
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Which brings me back to Part II of my comnent. You know you can obtain a modification kit to turn your manual wheelchair into a power model, right?
There are many options out there, but start with this one as a suggestion: http://www.frankmobility.com/about.php
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I am very aware of those kits, but as I said my chair is one of the ultra lightweight ones. This means that like the racing chairs, it’s wheelbase is wider at the base than at the top by several inches and has two extra stabilising wheels. Needed as with the chair being so light that it can tip backwards with ease. There are no kits that can fit a chair of this nature.
An electric wheelchair would have a narrower wheelbase and can turn within it’s own circumference, which my chair can’t. I have to make 4 to 6 manoeuvress just to turn and get out of a door, if there no space, the number increase. The sleeker style would mean easier passage through the house.
Also, the chair doesn’t belong to me, it belongs to the NHS. I would have to apply for written permission to change the chair in any way. I did enquire over the phone years ago, to be told this wouldn’t be allowed and never is. That’s just life with the NHS 🙂
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Butting out again. Be well.
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I have been reading your blog for awhile now and I like your writing style. I don’t have MS, so I have no idea how that must be. I do have fibromyalgia and moderate copd. At one point I was on so many meds for fibro I couldn’t think straight and spent most of my time in bed. I am the kind of person that needs to know all the facts, good or bad. If I understand exactly what is going on then finding a solution or accepting that there is no solution gives me some peace. I was sick and tired of being sick and tired so I started doing my own research and started trying alternative remedies and methods. I am down to only one medication for fibro. I am able to think clearly most of the time and I rarely nap during the day.
Am I recovered? Absolutely not and unless a miracle happens I never will be. But I feel so much better than I did a few years ago. I am in pain 24/7 but have found several ways to make it more tolerable. And I still have days when I feel exhausted and when the fatigue is bad I have brain fog.
I started blogging about fibro to share what I learn and give people with fibro some hope and encouragement. Not false hope, just hope. I try to be honest about my feelings and my struggle with anxiety and the pain. I spend a lot of time researching for two reasons. 1. There are new findings about fibro all the time that help explain the different symptoms and give clues to what may help. 2. When I write I want to be as accurate as possible. I do try to balance this out with doing things I enjoy so that my illnesses do not take over my life.
You are right chronic illness is not sunshine and roses. Be well.
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Hi Sue, I have read some of your post, and I also like your style. From what I have read, you too like to be honest not just about your research, but what it means to live with chronic illness.
If you have been reading long enough, you will know that I also tested every drug I was on and ditched loads. I didn’t feel better, but I didn’t feel any worse. Why fill yourself with chemicals you don’t need.
Everything in life requires balance, and as long a knowledge is balanced by reality, caring and personal experience then what is written is truly helpful to those following our path. I have though from the start found a number of writers who almost make it sound like a party. All you have to do is acquire a self-made medical degree, eat the perfect diet and life will be wonderful. One, that I will not name, really got up my nose the other day, hence the post. Although I did try, to make it clear, exactly the sort of people I was talking about, it appears not clear enough. 😦
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