Id started writing this in my journal, not really sure if I wanted to share it with you but the more I was writing the stronger I was feeling that it should be a blog post. Not sure why yet, it’s incredibly personal and it’s me speaking at my rawest. Here goes.
It’s about 2 am right now, and I’m on the edge of tears consumed with guilt. The infection, the sleep routine and energy levels are having a riot with my system. For me it means I can’t be the mom I want to be or should be. It means you are left to your own devices when I should be with you the most. It means I’m expecting you to pull my cart when I can’t and it means that because you do things different to me and prioritise different to me my heart a nd mind becomes more conflicted because I get it. I get that you are not me. Your role in this family is not the same as mine. I feel like I am losing mine though and it’s the only one that makes me feel worth anything important. It’s about this time of my thinking that I get frustrated and irritated, I snap at you then internally kick myself hard b/c I’ve just seen the hurt and confusion on your faces. It’s not my job to cause hurt to you, to offload my inabilities on to you and mentally demand you become me.
I am the person that gave you life, I pledged my life to you for every day I air in my lungs, no matter how easy or hard it got. It is my job to love you, help you grow and develop, to mature into fine adults and stand strong no matter what life throws at you. I should be teaching you to find solutions to problems, to nurture your caring natures and become independant for a future life away from home. I should instill self worth, confidence and a secure knowledge of your reason for being here. I do not have the right to break your heart, to cause you pain or doubting moments on your being. I do not have the right to expect you to become me when I can’t be.
My arthritis sometimes knocks me sideways. It does not care that it’s only 11am and I need to go shopping or I have two older children I would like to go and visit. It doesn’t care that the beds need making or my hair needs some tlc.
My specific symptoms of arthritis, the secondary conditions I’ve gained and the side effects of any of the above have no respect. They have their job to do and they’re going to fight to do it no matter what I want or say or feel. It has no care that I’m a single mom, trying to work, trying to raise my 11 yr old son, trying to be a support to my daughter who’s become a mom for the first time. It has no care that I miss my granddaughters so much it hurts to the point of tears. It has no care that I want to be independant or want to go and make someone else smile. It has no care that my car needs cleaning or my pool needs hosing.
It also doesn’t care how I feel. It tackles my seratonin levels regularly meaning that no matter how strong minded and faithful I am, the chemical imbalance in my system will always drag me down so I need anti depressants. It’s an easy word to use, depressed, and that’s not what I am, my heart is full of gratitude, love, happy and joy. Yet the attack on the seratonin is another way for the beast within me to drag me under. It tries to change my thinking, sometimes it wins and I could kick myself for allowing it, but the tablets control it now and that means the real me can fight for all I’m worth.
I have this fear. It’s with me every day, it’s almost like a thorn that jolts me when I let my guard down too much.
I fear that my life is all it is ever going to be. That I’ve reached my goal limit quota. I fear that I’m all I’ll ever be. Given all I will ever be able to give. Done all I am ever able to do. I fear that this spot right here, where I am now is the final destination and from here on I am nothing more than a spectator.
You see, my diagnosis meant I had to say goodbye to my old life and the one I was creating and learn to live a new one, what I didn’t know at the time was the one I was building doesn’t have the longevity of my former one. After a long time and much support I learned to live a life that looked normal. I learned to pretend. I learned to cry in private and wear a new mask outside. I devised a theory to give people around me the ok to not value me, because I stopped valuing me. In doing so I taught you have to lose value in me too.
I live most of my life sitting on the sidelines, being an onlooker. It’s sometimes a lonely place to be.
I refused to be a victim, to lay down and take it. I refused to be a statistic and be a complainer. I refused to quit and feel subhuman. What I actually done was learn how to be two shades of me. The inner me and the outer me. I learned it to an art.
I’m so sorry I gave you false information. It’s never been ok for me to tell you I’m feeling useless or out of my depth, it’s never been on for me to tell you I can’t do it because I never wanted you to learn that from me, the world will teach you that and help you to manipulate it all you want, but I want more for you than that.
I’m sorry that I’ve taken my finger off the pulse. My attempts to get and keep us organised and self reliant are sometimes too much for me and then I fail to remember they were my methods, not yours. I’m sorry that you are both at an important part of your life and I’m barely present, even if I am in the same room.
I wanted us to have a simpler life, to have an easy access to get out there, relax and enjoy being together whatever we did so I bought a caravan. Epic fail that has been. I bust a gut to get us booked to go to Florida, then my dislocated knees meant I couldnt get the medical clearance to fly, which I needed to have because of needing to take my medication with me. Another epic fail. I know my worth is dependant on what you find my worth to be. Thats my measuring stick. I know there is much more to me as well but let’s face it, that’s had to go now b/c I am just not able to have the life I worked so hard to get. I have to be ok that and maybe one day I will.
Today I’m more concerned with what today holds, today I’m concerned with keeping it together when all I want to do is scream at my Rheumatologist to get the pain the heck out of me. Today I want to pick up the rubbish bag and put it in the bin outside.
Today I want to be me. Just me. To feel a little bit normal, just five minutes.
Today I would like someone to just hold me tight, not speaking, not promising just hold me and let me cry till I’m dried out. Then look at me and say ‘so what’s next?’
Arthritis doesn’t care about me.
It doesn’t care about you either.
But I do. With every fibre of my being I care. Whether you are with me or not I think of you, all four of my kids. I miss them. I ache inside and wish I could be more for you all. I’m sorry you got stuck with me.
But no matter how bad my day gets or my body, there is not one second I don’t love you. There is not one second I’m not thinking of you.
Then I have my own parents in my head. Again my heart hurts. How can I be a better daughter to them? They are no spring chicks now, they have supported me through everything I’ve ever done in my life, even the mistakes, the long distances and the sheer low times. Never really asking anything of me other than to be a good person and to be happy. My heart has so much regret, so much missed time that I’m acutely aware of, a growing fear that I may not be able to be the daughter they deserve, God knows my body is not what it used to be and everyone around me is affected by it.
To my parents I say this:
I love you with everything I am. Thank you for trying so hard to understand me and my craziness over the years. Thank you for never saying ‘I told you so’ or ‘well that was stupid’. Thank you for having my back when I probably just needed a kick up the butt. Thank you for not laying a guilt trip on me. Thank you for letting me be weak when all I needed was you to hug me. Thank you for seeing my good sides and drumming them into me when all I’m seeing are my faults and weeknesses. Thank you for not being perfect but being real, being open and trying so damn hard to not fall apart yourselves, at least to me.
Dad: You always told me I have it in me to be whatever I want to be, even the Prime Minister! You made me fly without even knowing it. At my worst you made me feel like the only person on earth you wanted to speak to. You made my heart feel calm when it felt like it was breaking on the outside. I know your heart hurts, I feel it too especially where the grandkids/great grandkids are concerned, I admire you trying to understand even if it’s just words most of the time. You always have my back. You are my hero.
Mom: We certainly know how to laugh, don’t we? Always the one that lets me vent, rant, cry and fall apart and always the one that gets up and hugs me tight, giving me the safest place in the world to be. You fill my cup when I have nothing to put in it, whether I ask or not. You do it because its who you are, because you want to and because you love me that much. We’ve had are share of arguements too, eh? We so alike in so many ways it’s inevitable we’d clash now and again but we’ve grown from it, matured and learned. I’ve seen you at your hardest and your best and look where we are, I am what I am b/c you showed me how. You are my best friend.
I’m sorry I instigated the geographical break up of this family all those years ago. I’m sorry for all the times I wasn’t there. I’m sorry for all the times I can’t be there in the future, oh how we take life and our health for granted.
For years before my diagnosis I had osteo and rheumatoid arthritis, it was just not detected, on looking back it explained many things that happened over the years, some that I got in seriously hot water for! If only I’d known then what I know now.
Kirsten: When you told me you were pregnant and I hit the roof, actually no I didn’t, I was like a Ninja Crazed Woman! I hit you hard with the reality of what was happening. I threw all my tough times at you in one 45 minute time frame. My heart broke for the path you were walking. I didn’t see the gift of your child for a good 24 hours. I knew the extra difficult challenges that would arise with the father and his family. It was a car crash waiting to happen. 9 months on I look at my precious grandson and my heart melts. I look at you feed him or hold him and I remember that feeling when I held Jaymie, Scott, you and Charley and I realised that you had probably just come into your own and I had to support that. You asked me to raise Jensen in the Gospel, take him to church and encourage him to live the principles we all live by. Let me tell you more about that.
It’s been a long time since I was able to go to church. It’s not a choice to not go, far, far from it. Charley goes with a church member who lives nearby, Trevor. Trevor is also his Sunday School Teacher. He is a man of faith, a foundation and a man of love, dedication and all things I want my son to be. Trevor is the closest we have to a Priesthood in our home. He never gives up on me and never on Charley.
When I get up with Charley and watch him get ready for church my heart skips a beat when I see him in his suit, his scriptures in hand and eager to go. I also feel my heart drop b/c I want to go with him. I want to hear his excitement from what he’s learned in Primary and SS. I want to see his face shine when a principle has clicked in his head or when another ward member has taken the time to shake his hand and ask how he is, how school is going or how his testimony is. I want to sit next to him in Sacrament and answer his questions when a speaker says something he wants to understand more. I also want to feel the sweet feeling of the spirit again and again and again on each and every Sabbath. I want to sit amongst like minded people and feel that I am part of something wonderful and loving. I want to listen to the teachers and understand more about the Gospel we’ve had in our lives for the last 16 years. I want to get up off the sofa and give myself one last check over in the mirror then head off on the drive to renew my promises, to feel the love I know Heavenly Father has for me as well.
Instead I see Charley off and shed a little tear. You see, I’m a little bit jealous at that moment, jealous that Charley has the opportunity to go where he belongs for three hours solid and re-learn his place, his meaning and his faith.
For me it’s a little different. I can’t just get up, get ready and go.
Do you know the spoon shortage theory?
By the time I am ready to get out the door I have all but done myself in for the day. Energy is on a timer from the minute I wake up, on countdown without a break. The continual process of getting myself through the doors of the chapel means I have used up approximately 8 of my 10 spoons that day, not to mention getting from one class to another, being polite and speaking with people and getting home. Also factor in dinner, bedtime routine and actually getting to bed. My body can no longer do that all on its own. I’m constantly told there are plenty of people to help but the truth is, who? How do I know if there is someone there that day who is happy to lift my wheelchair out the boot, set it up, push me round and then help me back to the car afterwards? That’s like going shopping and being sure there are plenty of people who are willing to help, perhaps there are but without prior planning I have no certainty of that. Everyone has their own agenda. Yet again I am one person, one. Then there are the times that my knee has dislocated and I can barely move, be it standing, sitting or laying down. My car seat is an issue, just going the 1 mile to the school or 1/2 mile to the shop. I drive a larger car, automatic which makes my life easier but whatever day of the week it is I have the same challenge. On a school day you will always find me hobbling to the car in my pj’s. Always. That’s b/c I have taken out the getting ready part b/c I come straight home, I drop Charley off at the gate and that’s it. That’s enough. I also fractured my back recently, the pain comes and goes but a lingering ache is always there. Pressure when sitting is beginning to affect me more as time goes on but it’s one more thing to add to the list of woes in this mortal body.
I will never be a burden to anyone. I never expect anyone to take on my challenges. If I have help, great. If I don’t, that’s ok too, I’ll find another way.
However, as Charley reaches his 12th birthday he’s not only working hard preparing for his SATS and then the transition to high school in September but he’s also about to start a new journey in Young Mens. A place I know he will thrive and have his heart broken all at the same time.
I so badly want Jensen raised in the Gospel, it will give him his purpose in life, his self worth and a guideline to being the man he is intended to be. He will walk with honour and integrity, just like Charley and many, many other boys I know and it will keep him grounded. I fear that I may not be the right example for him, the one to lead him into consistency and steadfastness. I worry for my lack of presence with Charley, I worry for the lack of Priesthood in our home and in his life. So Please consider coming back to church, help me raise up our boys to be the men they deserve to be.
Arthritis: A non terminal but life long condition that spends its time destroying the one thing God has given us to get through this life, our body.
Faith: A free for all, 24/7 line to the one man who can get us through the darkest moments, reshape our faults and love us unconditionally, regardless.
My journal is a little longer than this because I’ve wrote little notes to my three boys and my three granddaughters but I’ve kept those parts out.
As I said at the beginning, I have no ideas why I felt so certain I should blog this but if this helps just one person then you are the reason, and that’s good enough for me.