This morning I felt great. Things were looking up. I was happy. And then suddenly everything changed….Why? I don’t know. But suddenly my world shifted and the wind was knocked out of me. That’s the thing about depression. You can’t predict it. Sometimes you sail through stressful situations that you’ve been dreading. And other times an ordinary day sends you to the pit without warning.
Grief. It is grief. That crushing feeling deep in your chest. You can’t breathe…you don’t even want to. You can’t cry, because in order to cry you need to breathe, and you can’t. You can’t move. You can’t think. You can only feel. A pain so deep and rending that it’s almost exquisite in its agony. Perfect in its torment.
You now understand why artists struggle to capture this pain. Words are ineffective…words are blunt instruments, and you can’t put them together in a way to make anyone understand how this feels.
Sometimes it’s a song. Sometimes it’s a poem. Sometimes it’s a sculpture, a painting. Something reminiscent of… a teardrop, a heart, an embrace.
If it’s grief for a child, there is no hope. Your soul will mourn forever, and these attacks will always come. For nothing can return that piece of your soul to you. There is only hope that the gods will reunite you one day.
If it’s grief for a romantic partner, there is hope that one day you might love another person more than the one you have lost. But you don’t want to. You can’t imagine how. You can’t imagine to even begin a search…because you are faithful to your love, regardless of the fact the he doesn’t love you. Because you love him as deeply and utterly and completely as he rejected you.
If it’s grief for a life you used to have, a body you used to control, an existence where pain was not the overwhelming, controlling feature of every day and night, there is hope of sorts. Hope for remission. Hope for a cure, even. But the longer the life of pain continues, the more that hope fades. Pain changes you. Pain has changed you. And there is no going back.
If I were pain free now, and forever, I would still never be the same carefree person I was eight years ago. Because I know what it is like to lose everything. Your love. Your friends. Your people. To be abandoned. To be left behind. To have all that you gave, reduced to rubble. Because you got sick. And they didn’t believe you. They didn’t support you. They only wanted the ‘other’ you. The healthy one. The one that fetched and carried and kept them smiling with silly jokes and surprise dinners and those special moments where you thought you were carving your love into stone.
Instead it was all built on sand…that shifted and lost strength as surely your body did.
You are different now. There is no going back. The hope now, is that you can find a life where you can be happy along with your limitations….and forgive the unforgivable.
And while it has been many years, and logic has overcome most of the hurt, sometimes that familiar pain intrudes uninvited. And crushes me. And I can’t breathe.
I try to live my life as if what I want most in this world was never a part of it. I banish it from my thoughts whenever my mind dares wander there. Even while I do all of this, sometimes, out of the blue, my heart breaks all over again.
Today was one of those days. Why today? I don’t know.
Sometimes I know why. Sometimes I run into people I used to know and talk about things we used to do. And then I am desolate for days while I pull my senses back into equilibrium, and wait for logic to reassert itself.
Sometimes I don’t know why. Perhaps a dream that disappeared on waking, leaving just a shadow in my heart and on my mind.
Whatever the reason, the searing, hot pain has followed me all day. I have forced myself to try and DO something. Anything. NOT stay in bed and wallow. NOT stay in bed and dream. NOT stay in bed and remember.
I went to the hardware store to try and take care of a few ‘fix it’ jobs that need doing. I bought some screws and something metal. I think I may in fact be a man, because I felt slightly better after doing all this…lol.
Walking through the endless warehouse of all things home improvement, my body started to ache in that familiar way, and I knew the fence would not be fixed today. But at least I had gathered the necessary equipment. By the time I had paid I was wishing I hadn’t come at all, because the 15 minute drive home (to my couch) seemed insurmountable. Turn up the car stereo and play ‘Roar’ by Katy Perry.
My children are both going out tonight – dinner with their Gran, for her birthday. I very much wanted to go. Because even though I am now the ex-wife, my (ex) inlaws still treat me as one of the family and make me welcome at family functions. It would have cheered me up to be with them tonight, but arthritis pain means that I am home on the couch. Alone. With my thoughts.
At least I can cry now. I can breathe…the ache is duller, the torture just a twinge. But tears need to fall, this wound needs to be cleansed yet again. How many more times? I don’t know. Perhaps writing these words will make it one time less.
The narcotics that work so well at taking the edge off the physical pain also numb emotional pain. So tonight I will be very careful not exceed 40mg of oxycodone. Numbing physical pain with oxycodone is appropriate. Numbing emotional pain with narcotics is the first step to addiction, and a world of new problems.
I do not need more problems…certainly not ones of my own making.
And so I will put on the song that broke my heart this morning, and the tears will flow. And perhaps I will try to draw, to sketch. And I will read this back, and decide whether I have the courage to post it.
I decided late last year that I hadn’t been honest enough in my blog. I am so focussed on being positive, I didn’t write about depression. Only telling half the story is only sharing half my life, half my experiences, and while I believe we are all entitled to privacy, if I am going to put out there that I am living successfully with autoimmune diseases and trying to be positive, it is a lie to say that I never get down, that it never beats me, that I am always able to smile.
I hate liars.
So, unsure of what people want to read, I lost my way. Now I have resolved to tell more about the hard days but still, I find it absurdly difficult. To find the words. Perhaps my positive attitude is a manifestation of my denial. My refusal to admit that I am ill. That I am suffering. That I will never again be that fit, healthy person who could run and run and run, and work full time and raise two beautiful kids…and…keep my husband happy.
I still have two beautiful kids.
Please don’t worry about me. I will be OK. I have people to call if the sadness becomes overwhelming. I have a wonderful psychologist and general practitioner and I have 24 hour support lines to call. I will be OK. I wanted to write this down…but I don’t want to make other people sad. But maybe if you’ve felt this too, you’ll know you’re not alone. maybe you could try writing it down too. I think it has helped.
Thank you for being so honest, I can imagine how hard that was to write. I too feel the sudden drop in my mood, even with medication and I find it so hard to explain that I don’t try. I’m lucky my husband understands and just lets me be. Reading what you have shared with everyone has helped me to realise I’m not nuts after all 🙂 Hang in there, you are an inspiration!
Thank you Kim. I’m glad your husband understands enough to just let you be, but still be close by. Medication can help, but sometimes is just so intense you can only ride it out. Hoping for less of those days for all of us.
Wow. Thank you. I’m not writing about my depression at the moment, although, I’m very aware of it looming behind me… This was a wonderfully brace and honest post.
Looming is the perfect word…you can always talk here, on on the fb page if its starting to catch you. Take care Karen xx
Thank you for your honesty. Yes the physical and emotional pain of it all can be a rollercoaster. I have suffered with it for many years and recently my husband was also diagnized with severe atrhritis and it has taken a big emotional shock realizing how severe this pain can be. All we can do is pray for medical breakthrough as no one likes to be on heavy meds that are addictive and leave you with other side effects
Hi Liz, yes the treatments are as bad as the disease sometimes. I’m sorry to hear about your husband. In a way, he is lucky because you understand what he is going through, but I can’t imagine how hard it would be when you are both flaring at the same time! I hope you both have meds that help…and people that understand and will pitch in to help.
Thank you. You put what I feel all the time into words. I have RA and OA and try to get through one day at a time. The loss I feel some days is almost unbearable. But the people around me dont understand that. There are days when I do nothing but sleep all day. Dont change, dont shower, dont really even eat. After trying every medication and nothing working there are just some days that are too much. Thank you for writing and giving us a place to vent.
I’m so sorry, Shannon. Its a long road and most people do find a treatment regimen that at least helps. Then there are those that don’t. I know it sounds trite to trot out the ‘there are always new drugs in development’ and its true. But I’m so sorry you are in so much pain right now. Do you have a partner? Family? Please vent here anytime! Thinking of you. xx
[[gentle hugs]] Coming to terms with RA is very much like–no, EXACTLY like–the grieving process. And every time we go through a flare, we start the process all over again. It’s wearing. Hang in there!
Exactly, Carolan. After each bout of deep depression I tell myself I am ‘over it’ now. I have dealt with it. I have accepted it. Until the next time 🙂
Thank you for your post, your honesty and deep awareness. I am holding it all in and have been for a long while…but I can feel the walls crumbling and soon great big chunks will break off. Its 12.30 at night here in Australia and once agin the RA pain is making it hard for me to sleep. The physical pain is one thing but the deep spiritual pain is getting so much harder. I feel lost and lonely even though I do have a loving partner. I have just turned 50 and am wondering what my life is for.
I’m sure after a nights sleep the day will shine brighter and I will smile again at the lovely sky and the birds singing outside my window. I wanted to send a message to say thanks. Thanks for reminding me, in such a loving but powerful way, that I’m not alone in feeling these things. I wish you peace and laugher and joy and strength. xx
Thank you Deborah – I wish all of those things for you too. I was lying awake at 12:30 as well…there is some comfort in knowing that we’re not the only ones. I’m glad you have a loving partner and I’m sure he could tell you how much you add to his life. Today is a beautiful, sunny day in Canberra. I guess we’ll both be starting the process of picking ourselves up and trying to enjoy it. Take care xx
OMG. Yes yes yes…. Thank you for sharing.
I feel a little less alone in my thoughts and feelings. You really nailed it with this post.
Thanks Shauna xx
Thank you, thank you, thank you. This describes exactly what my last couple of days have been like. Instead of articulating it, I’ve been bursting into tears. Bursting into tears when my daughter came to clean my house because I could not, bursting into tears because the Orthpoedic Drs answer is to double my pain med and send me to physical therapy instead of working a miracle. Resenting my new normal and everyone who walks on two healthy knees, that doesn’t appreciate it. You never appreciate it until it’s gone.
I still wish for the miracle too Karen! Send myself off to a new doctor in the hope that he’s thought of something that none of the others have…its kinda crazy…but very human 🙂 Some days I’m intensely jealous of everyone that can move around without hurting! And sometimes you just have to cry…not that its much fun, but it helps me some.
Thank you for your honesty, it just made me feel so much better. I called in to work yesterday and today because of a horrible flare of my RA. My rheumatologist prescribed prednisone and I have my hydrocodone, so I am better than yesterday. I have had the symptoms for 4 years and been diagnosed for 1 year. I gave up doing so many things that I enjoyed doing due to my hands, but I changed it around and started working out on the elliptical machines. At my last rheum visit I was in a great remission. I felt “normal”! My hips, knees and feet still worked…until this flare. My toes and knees feel as if someone is drilling holes into them. My doctor told me yesterday on the phone that he is worried about disease progression, so I will be seeing him very soon. I thought it might just be the drastic cold temperatures. I feel alone and like no one cares to really understand. I am married to a wonderful man, but he would rather ignore it and act like everything is the same as it always was. I’m just scared and depressed today. Sometimes it helps to hear that you aren’t alone and that someone else understands. Thank you for writing down your true feelings.
Thank you Pam. I hope you can get in to see your rheumy soon, it definately sounds like its time to change your treatment plan. The cold surely doesn’t help. Can you talk to your husband? Just a little bit? I’m sure he’s scared as well. Sometimes its easier to just pretend it isn’t happening. I know I pretended there was nothing seriously wrong for years…but at some point you can’t pretend any more. Good luck…I hope you get this flare under control and back into remission.
I think sometimes the strain of pretending makes me feel worse, most people look at you and think “you look OK,you seem happy, how can you be in pain?” Sometimes i just want to scream at people or burst into tears. Thank to everyone on here for sharing their feelings, it helps to know others feel the same, although I wouldn’t wish it on anyone.
Well said, Kim. It helps to know we’re not alone…but so sad that so many of us are in the same boat. At least we all have eachother!!!
I found my 25 yr old son dead in his room march 2012, I try and fake it but I am spiraling fast.
I’m so sorry Kelly. I can’t imagine pain like that. Do you have support? People to talk to? You can talk here anytime. I wish there was more I could do for you. xxxx
I don’t think I can find the words to tell you how much I enjoyed reading that.
Thank you Lisa 🙂
Thank you. I feel less nuts, less out of control or weak and a hell of a lot less alone!!
thank you for this. I was struggling and found out that with having Ra and get depressed. I wish we can show everyone this entry that suffers from this. thanks again. Gentle hugs.
Thanks Detje. RA (or any chronic illness) do go hand in hand. Especially when you’re talking about invisible, but unrelenting pain. Hang in there, and know you can always find support here 🙂
Thank-you for writing that painfully honest blog – it’s important to address the emotionally ‘hard stuff’ too, despite the pull to be up-beat and positive. I hope that writing it out was therapeutic for you.
Hi Cece, it really was therapeutic…tho its hard to even acknowledge some of those feelings, and be that vulnerable, I think it has been an important step forward for me. Thank you 🙂
Thank you for your honesty………I have never had the words…..you gave it voice for me…..Thank You!!!!!
[…] to five days post injection, starting 24 hours after injecting, I get the most intense anxiety and depression. It feels like grief. Crushing pain in my chest. I can’t breathe. I have the most awful […]
[…] Depression is Sneaky […]
😀 You haven’t made me sad. You made me feel not so bad 😀
I was on treatment for Psoratic A. I saw a new Rheumy and like in your pain management article I was questioned in a circular fashion . Leading questions were asked and my answers flipped-when I clearly restated what I said and what the R said I was talked down. I was also told my treatments of mxt-which had really been helping to the point where I took Mobic and rarely even a panadol-were irrelevant as I now had osteo A and I could take Mobic for that and 8panadol a day. Every day. Forever. As we have no further treatment to offer you there will be no need for you to come here again.
I was severely depressed after this. My doc is checking out some moral efficiency
Thanks for being honest. IMO, useful optimism is built on the cold steel of “what is” rather than carefully fabricated fluff.
—fellow RA’er who also lost a marriage
Thank you…. I am in tears as I have been reading your various posts on here. I am a fellow arthritis sufferer (psoriatic docs are currently suggesting) who has also been struggling to deal with the loss and grief of it all, alongside the “managing” (?!) the pain, the meds, the side effects, the depression…. As well as managing to hold on to my sanity during the roller coaster ride that we all will have been on when you think that at long last you have found something that gives you relief only to have another flare, or for me, another joint that succumbs to the inflammation.
I too have left my husband as I could no longer deal with the rejection from him and what that was doing to my sense of self on top of everything else. I too came to the conclusion that my kids also deserved more than living in an environment where resentment and emotional detachment were becoming the norm. I am now working toward being friends. But have a way to go.
I guess I just wanted to say thank you. Thank you for sharing your experiences, your feelings, your soul. I know this post is from a long time ago now, but the value of reading that and other posts and realizing I am not alone in this struggle is immeasurable. It is ironic at a time in my life, when dealing with disease, that I need that connection and support from other people. But that connection is the very thing that I can’t do in the way I used to. I let people down. I have to flake on arrangements because by the time it gets to evening, when my friends are ready to socialize, my body just says no. And I need to listen to that regardless of how much I am desperate to drive to see them. So the isolation is as devastating in some ways as the illness itself. Your blog and the comments from others has helped me see I don’t need to remain disconnected. There are others out there going through the same. So Thank you. And I know, as you do too, that I will be able to reconnect with myself, though that self is a very different entity now that all this has happened. F
Hi Fi, I’m truly sorry we have so much in common. I believe you’re right – the isolation IS as devastating as the disease. And what we need most – people, support, love, companionship, inclusion, belonging somewhere or with someone – become so very hard to find. But it is out there. And I hope and pray that some of it is coming to you. You definately are with friends here. And thank you for being here Xxx