Still an avid writer, but have not been keeping up on counting what I have sent out the last few years. If you would like to become pen pals please feel free to drop me an email to get things started. You can never leave a love of fountain pens and fine stationery behind.
Suffering from chronic pain is not something I would wish on anyone. Well okay maybe one or two people but I always remember what we do can come back on us three fold. In my life there have been those who do not understand chronic pain. I am lucky enough to have cut most of them from my life (for other issues then just that) but it doesn’t mean it isn’t hard for others in my life to understand. Chronic pain is not like other pains, it can’t be seen and you can’t point to some scar, or cast or something to explain the pain. This is why many don’t understand it. You either get those who tell you to get over it, or those who treat you as though your an invalid and may break any second. Neither is fun. For years I have tried to find a way to point out to others how chronic pain feels to me and how I manage to still manage to solider on as best as I can with it. As good as I can be with words this is something I have failed at. So I was very happy to find this come across one of my online feeds. An open letter from a person with chronic pain. This explains things better then I ever could. I am going to post here as a quote but I am also linking my SOURCE for this letter right here.
Open letter from a person with chronic pain
Having chronic pain means many things change, and a lot of the changes are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or not extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome to.
Please understand that being able to stand up for 10 minutes doesn’t necessarily mean that I can stand up for 20 minutes, or an hour. Just because I managed to stand up for 30 minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can’t move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting “sitting,” “walking,” “thinking,” “concentrating,” “being sociable,” and so on; it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (and for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to “get my mind off of it” may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder.” Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking, or the cleaning. I may need you to take me to the doctor or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
Oh yeah I am so behind on doing things that I should, like catching up on my Saturday Sanc, but I do plan on actually doing that later today. For the moment however I am just going to put up this Monday’s song and let people take from it what they will.
While I do not yet have my own story for the Saturday Sanctuary written up I thought I would make sure that I got it posted right away so anyone who wishes to join in may do so. I will add my story later tonight in an edit. Happy Saturday everyone here is to making it through another week together. Mr Linky will be set up next week (I hope) so folks can link up if they actually wish to.
I missed Musical Monday last week I was just not in a place to post about it. I lost another one of my beloved babies. My Cubby my sweet sweet Cubby also of course why there was no Saturday Sanc this week I did not want to leave another depressing prompt idea for anyone to follow, if anyone is also doing the Saturday Sanc, I really should start a Mr. Linky. I still can’t really process all of it, but I am working on that. I think sitting down and writing a proper post about it will help me eventually to start dealing with it better. For now however, I am just going to do what I can and allow myself the time to move slowly as needed. This week we have a song that is helping me feel a bit better over things that have been going on. My friends and family kinda giggle at me because I say Josh Grobin music makes me feel conflicted. There are a lot of songs of his that I really enjoy. I know he is a Christian singer and so as a Pagan some find it odd I like his music. I always say that music can be uplifting in ways that aren’t always so obvious. Yes the obvious go to in many of his songs is that he is referring to his God, but often times it is not specifically stated and even if it is music is still open to be interpreted. So I choose to interpret and still feel uplifted by the songs I like, you know even if he makes me feel conflicted sometimes. * LOL *
I really can’t think of a song at the moment that fits things for me right now more then this one. A true anthem for the day, the week heck the entire part of this year so far.
Just as I got my feet under me and started to work forward from losing my Pasha the universe took another stab at me and knocked me down again. My Cubby was taken from me. I am sorry that I seem to be depressive again but that seems to be the hand I have been dealt this month.
Here comes Monday again. Not a fantastic week last week and in all honesty I am fairly sure that this week is going to be a little bit of a pain in the rear end too. Sorry to be a bit depressing folks, I really don’t mean to be sometimes that is just how life is. That said, music can sooth the savage beast right? Or maybe the savage Amby. Today I am enjoying the tunes of Wicked.
Today’s writing prompt is this picture with this phrase, or without and even the phrase on its own. The phrase is:
Building on the fact that I am embracing that a writing prompt here does not have to be for fiction again this week. I know my last weeks have been a little bit sad and maybe even emo, but I am the first to admit I have not been dealing with my grief well. Things have been rough and my stress is still so far up that I can’t really explain it well enough. However, yesterday a force that has given me a boost arrived and brought that bit of sunshine I needed. I won’t pretend I am all rainbows and unicorns and such, but progress is happening, so I have chosen to work on moving forward. I have chosen to find happiness in what thing’s I can, I am choosing to work my hardest not to wallow in my grief. Won’t be easy but one minute at a time.
I know I would have come to this conclusion in time anyways. I am not the type of person who sits and sees only the negative in everything. Sure, I have my moments, but more often than not I try to find at least a small thing to be happy about. Yesterday my sweet departed Pash Pash ensured that another life would be saved and join our family. This sweet new little life applies a band-aid to my wound and allows me to take the first easy breaths I have since Pash Pash passed on. You can never replace a loved one and that is the same for loved animals, my animals are my family. You can make more room in your heart though. Allow the love you have to share to expand to that new sweet baby and slowly the pain will dull. New life is always something positive and it is hard not to smile as you get to know the quirks and amusements of a new cute little friend.
This is the little guy who showed up to be part of our family. He looks similar to my sweet Pasha, less white on him and his face is thinner, but there are similarities. This sweet boy has black socks instead of white like Pasha had and his little jelly bean paw pads are black too. For some reason I am completely enamored with the fact that his paw pads are black. I have had cats with pink pads and a mix of pink and black but never just black.
This little guy has been dubbed with the rather long name of Misha Castiel Pasha, yes, I am a complete and total nerd and that has never been in question right?
He is an interesting little fellow so far and is settling in well. I know we will see more of his true self as he becomes part of the pride and pack in the house. He is a fairly laid back little guy and he LOVES attention. He purrs very loudly and meets Dutchy’s tough standards for cleaning. This kid has already power bathed himself 4 times since he has been home. The rest of the residents of the house have accepted him pretty well with very little hissing, snarling or anything else. It makes me feel like he is indeed the piece that was missing with the loss of our Pasha, he just slid into that spot and fit in like the perfect puzzle piece. I am going to truly enjoy the next week and watching to see how his character unfolds. So far he does seem to be named properly, he is a little odd in that sweet adorable and fantastic way. Who wants normal right?
I also just noticed this morning that his tail is different, I seem to get kitties with different tails. It looks like at some point in his young life (he is about 5 months old or so at present) his tail was broken. It doesn’t hurt him at all and he doesn’t seem to notice anything odd about it, but the top 1/4 of his tail is kinked over and held so it is almost like his tail forms an L shape. I didn’t notice this right away as most of my cats purposely hold the tips of their tails over to make kind of an S shape and I thought maybe he was trying that and not doing well with it. A closer look and full body rub showed me however that yes indeed at some point his tail was broken. I don’t mind at all to me that just gives him extra character and makes him even more a part of the family. Dutchy has half a tail, the rest of it was taken when she was but a tiny kitten by what we don’t know. Callie has an extra long tail that seems to be a tail and then the missing half of Dutchy’s as well as her “special”. One of Callie’s legs broke while still growing in the womb and never grew past that point. It healed folded over and smaller and doesn’t both her her one bit. Several vets have told me that if it doesn’t pain or hinder her and they didn’t think it was, there was no reason to put her through the stress of a big amputation surgery. Those are just some of the unique things in this family, so Misha fits right in.
It truly is nice to part some of the fog. I can see a path out and I can see the beautiful light coming through the forest trees. I will get better eventually. I will start to feel less stress. Although I do have to say I think a vacation is going to need to happen before I can feel totally refreshed and recharged.
Monday is here again. I am starting to feel more and more like Garfield about Monday’s although the rest of the week hasn’t been peachy keen either. Anyways enough with the melancholy in text form. On to the music for today.
For a second week, sadly I just am not feeling the inspiration to restart this meme in a fictional sense. I am badly blocked and I know exactly why that is. My heart is still broken, sometimes it feels as if I can barely breath. However, as Superman (yes dear readers, I use code names and letters for folks in my life cause not everyone likes to be all over in random blog posts. So I respect that and getting back to the point) reminded me a writing prompt does not always have to be for a fictional story. A writing prompt can be for a personal story, or a poem or anything really even a song. I have sat and thought about this for a while and you know what he is right. So here is the writing prompt for this week Saturday Sanctuary and hopefully next week I will have Mr. Linky set up again.
For better or for worse, we all are going to go through a grieving process at some time in our lives. I think 2016 was full of ,so much grief for many in the world, it is hard to think that we can hold anymore within us. I think that is one reason I am having such a hard time currently. 2016 was a hard grief filled year for me as for many others. Don’t get me wrong, there were some fantastic, wonderful moment’s as well, ones that I wouldn’t change for the world. However, it is very hard not to focus on all the loss that happened. I swear whomever gave George R.R Martin the pen to write 2016 needs to be eaten by Ramsay Boltson’s dogs. Hopefully someone kinder has the pen this year, my year didn’t start out well though. My year just rolled on keeping with 2016 and losing my sweet boy has just ripped me into pieces. I am trying to say it was the last gasp of 2016 because I still want 2017 to be a great year, I really do want to try and hold things together and see 2017 be an unforgettable year for all the right reasons.
At the moment, though it is all I can do to hold the ribbons of myself together as they fray and unravel. It seems the second I grasp on to one end, another one starts going and the effort all seems futile. It would be easy to give in, easy to just lay down and give up. I really want to do that, I am so tired, so very tired in so many different ways. But taking the easy way out and giving up has never been my way. So I am going to keep grasping at those ribbons, keep trying to hold them together. Eventually, they will start to mend. Eventually I will have enough tape and hot glue to get the ribbons to hold together. Then from there I can start applying gold to the cracks. I have always found the art of Kintsugi interesting, since last year and now going into this one I have become a little bit obsessed with it. Kintsugi art gives me a little hope, it makes met remember that eventually this too will heal. It may take time and you have to be patient, but in the end you will be stronger and prettier for having survived.
If you don’t know Kintsugi is the Japanese art of fixing a broken piece of pottery with potter clay or enamel mixed with gold dust or other precious metals. I suppose some of the richer people may have used pure stuff instead of the dust ect. At any rate this art form believes that you work the breakage into the art, that the piece is stronger and more beautiful because it was repaired and broken than before, rather then try to hide the breaks. Something inside of me really feels a pull towards that idea, it really does.
I know it will take time, I know I can’t rush things and I should be gentle with myself. It is one thing to know these things it is another to put them into practice. For the moment I am just getting through the day one breath at a time, one second at a time. Hopefully it will get easier soon, I hope so, I really do. I know I need a vacation from pain and well a regular one from so much work. For the moment, though, one second at a time, one breath at a time I will keep slowly going. Until I can rise again like a Phoenix.
There has been such a shift in things since last week. It feels like it has been a century, it does not seem like it could only be a week. I miss my Pash Pash so much and can fully admit that I am not coping very well without him right now. I know this too shall pass, but for now it really doesn’t feel as if it will. This song is a little bit comforting to me and it was one that Pash Pash enjoyed listening to with me when it came up in rotation. He was such an expressive cat you could see his eyes light and his tail twitch when he enjoyed a song.