Chronic Friendships!

It seems like forever since I’ve put up a post! Probably because it has been forever and I have to say I’m not proud of the fact that I haven’t found a way to make time. This blog is more than just putting words down to express myself along with the experiences that I’ve had to live through. There’s a relationship that’s been established with some of you out there and it means a lot and always will! As I’ve walked through this journey over the last ten years, I’ve realized that I’ve gained some amazing friendships along the way. Its made everything just a bit easier to manage over that period of time.

First let me just say this! The support I get from family and friends is simply amazing! Since day one my family has been there for me in taking on this giant of a disease called CRPS and for that I am extremely blessed. God has placed so many good people around me and for that there are no words. I wish I knew what to say to each and every one of you because the love and support you show me day in day out through this journey means the world to me!

Over the past few weeks things have been really tough physically for me, not to mention just how exhausting its been mentally! My pain hasn’t been easy to control and there have been all sorts of times where I could have just as easily given up.  That’s when my extended family as I like to sometimes call them steps up to the plate to help. These are friendships that have been established in the chronic world with others who are chronically ill. Without fail they support me and I’m right there for them when they need me. We are a support system for each other that doesn’t judge but rather tries to listen to one other and motivate each other through all levels of adversity. When things get tough we push each other to get through what seems to be the impossible!

Sometimes you just need that support around you from people who are going through the same things as you are! When you make friendships within the chronic world there’s this common bond that you share with one another, and so right away you can identify with one another. I don’t think there is any need to explain what that common bond is! There’s no need to validate yourself or everything your going through, unlike when your trying to talk to someone who is healthy. Borders and boundaries that often stand in the way come down and it can be easier to open up to one another. You share in each others victories and support each other through the adversity.

I can’t tell you how many times I’ve found myself discouraged and one of those friends shows up in my inbox with a kind word of encouragement. Or a text that inspires me to push through a day where the pain is super intense and I’m getting down on myself. What sets these friendships apart from others is in the ability to understand what each other is going through so very well. There are so many shared experiences in living and dealing with our chronic illnesses. Even when the illnesses are different there is still that common thread in what we’ve experienced, or what we have to walk through on a daily basis.

When I started this journey of mine ten years ago I never knew how important this community of friends was going to be. They motivate and inspire me to see past the roadblocks and barriers within my disability, and instead see that I can make so much more out of my life. So I want to take a moment to say ” Thank You” to any of you who have played a roll in any way. You have lit a fire under me to pursue advocacy for my illness CRPS, and chronic illness in general. 

Today I want to mention four individuals who I think we need to recognize for their leadership that they display within the chronic community. I want you to know that you are true leaders and that the tireless work that you do in raising awareness, breaking down barriers, or even helping others through their journey’s leaves me with no words! You are all very unique individuals that have been given amazing gifts to do great things with in your lives! I want to recognize you not only because of the amazing work that you do within your communities but around your country. You lead by example and when push comes to shove you are in the trenches fighting with all your heart and soul.

So those four individuals are Julie Cerrone ( itsjustabadday.com), Britt ( thehurtblogger.com), Anna Evangeline (sixhipsandcounting.com ), and Charles Mattocks ( charlesmattocks.com ). If you have a chance drop by their sites and get to know them a bit better then please do!

I could speak about each of these people and not run short of things to say about who they are and what they do for chronic illness. I’m also quite sure that there would be many who would back me in making this statement. I could get into each of their stories but that in itself is an entire post on each of them. Their experiences and own personal journey’s are amazing and will inspire you!

In closing I just want to say this! If you are fighting a battle with a chronic illness and have nobody to talk to then look around you and reach out to someone like me or one of the others I’ve listed above and we can connect you! You should not have to go through your illness on your own. Never say that there isn’t support because its right around the corner. You need to fight and be that person who never lets their disability stop them from accomplishing the hopes and dreams that they have in life!


 

 

 

 

 

 

 

 

 

 

 

 

 

 

What’s A Spoonie?

End of the school year is always such a busy time of the year for us. To try and find any energy at all to write is difficult. I know it might seem funny when I say finding energy to do something as simple as type and think of the words you want to write! For someone who lives a Chronic Life though basic choices can be so difficult to make every day. If all my energy is being used up just to do the things necessary to get through the day then it leaves nothing in the tank! Which leads me to what I wanted to post about today.

Often you might hear people who live a chronic life throwing around the term “Spoonie” saying to one another that they send spoons to one another. There are all kinds ways that those of us with chronic illness use the term but what does it mean? A Spoonie is someone who is living with chronic illness. The term being a Spoonie derives from a post that Christine Miserandino wrote in 2010 called the Spoon Theory. She suffers from Lupus and I would strongly suggest that you go to the post and read it to understand what the theory is all about. The theory itself is was created while Christine was out with a friend for lunch. While at lunch her friend asks her what living with Lupus is like. What followed was the creation of the “Spoon Theory”!

Most people who are healthy start out every day with all kinds of energy to so whatever they want to do. A person living with chronic illness doesn’t have that same energy and has to make choices that result in the use of what precious little energy they have. So to better explain that to her friend she grabbed a bunch of spoons off the table and handed them to her friend saying you now have Lupus. Count the number of spoons you have and that’s all you have for the day. With every choice you make in a day it uses up the spoons. She wanted her friend to have something physical in her hands to hold and then have taken away as she made those choices.

I don’t want to go through the entire theory so you really do have to go and read it for yourself. Its a great way to demonstrate that our daily life is about making choices, and that we only have so many spoons any given day to make those choices with. The spoon theory is an excellent way of showing people on the outside looking in just what daily life is really like living with Chronic Illness. So when you hear people talking about how many spoons it took to do this or how many it took to do that, you’ll have a better understanding of what we are talking about. I guess in some ways its a bit of a secret language but people need to understand that it isn’t something to laugh about. Its a very real way of us talking about our illnesses and how we manage each day!

I know it might sound funny me calling someone a Spoonie but when you understand the theory and what its really all about it doesn’t seem so funny anymore. Once again its about understanding and educating others to see the reality of what we live with every day. I know this doesn’t seem like very much of a post for today but someone emailed me asking what a Spoonie was! I also think that in order for me to explain the term, I need to refer it back to who created it all in the first place!

 

Passion For Change

I’m back! Did you think I was never going to write another post? I needed to take a bit of a break from all the writing to take care of me! I’ve been trying to focus on getting better, and so I just needed to take a bit of the extra stress off my plate. Slowly I continue to get over my surgery. When I was at the neurosurgeons office a few weeks ago, he told me that I can expect it to take until Dec or Jan to recover. Good days are mixed with bad but when your fighting chronic illness and CRPS in particular that’s to be expected. I’m taking it one day at a time and doing only what my body wants me to do!

Its been a long road to this point and I’ve been doing a lot of thinking about the direction I’m headed and where I’m at in this very long journey. Recently I was asked to write my story by a friend Victoria in the UK at “Burning Nights” and all that I’ve had to go through in living a chronic life. If you get the chance go over and visit her blog at http://chronicpaincrps.com. As I wrote my story though I began to think of where this road is taking me and how I’m feeling at this very moment. Without a doubt I’ve been through some pretty tough times and gone down a few dark roads. Gods been there however to put me back on the track and keep steering this ship in right direction.

I know I’ve mentioned how I was feeling at the start of my diagnosis so I won’t get into that story. All I’m going to say is that I’m in a different place with my CRPS right now than I was back then. Even trying to push through this healing of my most recent surgery is different because I’m not letting the mental side of things distract me. I push forward and try to make the most out of what I can at this point in time. Something has shifted inside however and I really can’t put a thumb on it. I feel different filled with more fight and passion than I’ve ever had. Passion for what? Passion to bring about change! From the basics of how we live with chronic illness, to the perception of those of us living with it. I’d also like to see government make changes in how they support and care for those living a chronic life.  The only way to do that is to be a part of that change! Fighting through advocacy for my illness and other chronic illnesses.

It isn’t that I’m not still dealing with a full plate battling CRPS because believe me I am. Something however won’t stop tugging at my insides, telling me I need to do more and try and make more of a difference in fighting for CRPS and Chronic Pain. I wake up in the morning and go to bed at night thinking of ways in which I can help to make a difference. I am now involved with a Spoonie Comunity that not only supports each other but advocates to raise awareness and drive change! I have now made friends with people living with chronic illness from the all over the world who are fighting for the same cause. If you don’t know what the term Spoonie stands for its a group of people that live with chronic illness. Like I said at the beginning of this post something is shifting and I believe its only for the better. I also believe Gods hands are all over it!