The Shell

Against what I was told to do in order to “get better”, whatever that means, I just don’t have it in me today.

Not today. And I’m sorry… I’ll definitely “ruin my journey story collection”. I’m in the corner and don’t see a way out.

Today all my demons, the demons that I am trying to go through so I can start living again, are coming at me. Not a few of them – a few I can handle. All of them. And I simply don’t know what to do.

For the time being I chose to “hide” so my children can’t see me, which means I left again my husband to deal with everything that requires looking after our children. That includes putting a “mask” that everything is ok, “mummy just doesn’t feel so good today so she needs to rest”; cooking for them, feeding them, giving the little one a bath, then putting her to bed, while the older one is doing what a ten-year-old boy does best without even knowing he is doing it – trying to peel off that mask of his dads’ face. Not on purpose, of course, he is just a child. He knows about some of my issues, there was no way to hide some of them, but even so we can’t expect from him to act like an adult. Because he is not.

So I hope his dad will hold his ground for the next two hours or so. If not, I’ll have to force myself to try and put on that damn mask. And I will, I just hope I wouldn’t have to as I’ll inevitably snap at someone, which would then add up to my enormous amount of guilt I already have and deal with it whenever I can and if I can at all.

I’m a shell of myself. I am not the person who I was and I will never be again. I am not the mother who I was and I will be. And right here comes the moment that I am told that “acceptance” is the way…

Well, I’m not build that way. Acceptance doesn’t come easily to me if it comes at all. I tried, trust me.

I’m not dying (well, I will one day but not in the near future), I don’t have a cancer and this was what one of the many doctors I had the pleasure of meeting told me so I can understand that, in fact, I should be grateful, it could be so much worse. And they are right, I understand that, I’m just not grateful today.

So, the shell… I’m sorry, there will be no humour here, unfortunately, and I shouldn’t be writing this as “I should go through the healing process”, probably self-pity, ungratefulness, anger, but no humour. I need to scream and to break things (not that I can, but just thinking about it makes me feel better). But I won’t – I will never allow my children to see me or know here I am right now.

Life is not fair. And I know what everyone would say – yes, it is, so put yourself together! And I will, I don’t have a choice, but because I can’t scream or break things I’ll be ungrateful and unleash all my anger here…

I’ve been through hell, truly, physically and mentally – and now when everything I wanted is here, life decided that probably I didn’t take enough hits. So let’s throw a few more at her and see how she’ll handle them, she seems pretty good at doing this so she’ll be fine.

Well, I hope someone somewhere knows why I’m here, because I truly don’t know – what the hell I did that was so bad that I deserve this? Yeah, I know… “That” stupid question. Never mind. I don’t care anymore.

I was diagnosed with rheumatoid arthritis two years ago, a few months after my daughter was born and was told if I don’t start treatment right away I’ll be in a wheelchair in six months. Before that I had five miscarriages. Not the easy way, the hard way – no matter how early or late was the lost pregnancy I always had a full blown fucking labour. Hours of contractions, spent on all four on the floor or in the hospital. I had to go through the process of “extracting the product” as one specific pregnancy I lost at 14 weeks. No anaesthesia again. We were in a different country, where, let’s say healthcare is somewhat different than the one in UK. Which means all this was done with one nurse holding a phone between my legs for more light so the doctor could do his job, while my husband is trying to hold me still. I had to tell my five-year-old son that that his brother or sister would not be joining our family as I had the stupidity to tell him quite early in the first lost pregnancy. And I couldn’t face him, I just couldn’t, so his dad did it for me. I had to watch him cry and comfort him – no hiding from this. My son knows that I lost one baby, not five. And he’ll never know. Amazing memories…

Somewhere in between these my husband had a close brush-off with cancer. Before that one of my lungs just decided that he’s going to take a day off. Quite a few times at that with no apparent reason. Before that I had a horrific experience giving birth to my son, which was followed with 3 mastitis and 1 breast biopsy with no anaesthesia to extract the breast milk before my breast exploded. Then I had to give up breastfeeding, no matter how hard I tried not to, or I could lose a breast. The guilt that you are not able to breastfeed your own child for whatever reason was and still is killing me. No matter how I try to reason with her (the guilt) she refuses to go away.

I could continue but I don’t want to anymore… All these demons are charging at me right now and my mind and body are not equipped with whatever tools I need to handle them. Although I supposed to wright about all this step by step, putting my demons, my journey on paper, from the beginning of the fucking now, today this simply doesn’t help.

I couldn’t pick up my baby that I waited for for so long, because my hands are not mine anymore.

I couldn’t breastfeed her due to my medical history.

“Daddy” was her first word as mainly daddy is taking care of her for the last 2 years. Whenever she needs comfort of any kind she is not looking for me. She is looking for daddy. Sometimes she even screams at me when I try to help her in any way. She doesn’t want me to touch her or hug her or even talk to her most of the times – if I do the screaming comes. The screaming, which only daddy can fix. She knows I’m “mum” but that’s it. “Mum” is spending most of her time in her bed. “Mum” doesn’t really spend a lot of time with her so that’s that.

Yes – all this is stupid, I know, but any mother can understand that there are moments that my feelings are taking over the rational though that this is completely normal (after all daddy has been and still is her primary care-giver) and it crushes me down so hard it takes me days sometimes to put myself together.

Instead of being over the moon that she is with us I had to bite the bullet and fight depression. A real one. A very mean one. Not post-natal. I know that one. This one is quite different.

I am no longer adequate partner to my husband and adequate mother to my children. And I have to find a way to re-define what “adequate” is. But all that pain, all that constant pain, for the last two years, is not helping.

Yes – I am alive. Yes – I have two beautiful and most importantly, healthy, children. Yes – I have an amazing husband. Yes – I achieved so much more then I even wanted to.

Yes, yes and yes. I should be grateful.

But I’m not. I’m supposed to be learning how to be grateful and I am trying. It just not happening. Perhaps I’m just an ungrateful bitch and that’s why I deserve all this. Again – whatever – no one can answer that question. 

Here is the truth.

My body is no longer mine. I am not the one who decides if I’ll play with my kids or go for a walk or anything I can think of. The RA decides. Although I tried to “shut him up” the next day he fights back brutally. I keep trying sometimes as I simply cannot accept the fact that I don’t “own” my body. For an ex-sport gymnast, for a very active, physically active person, for a runner, for a mother of young children that's supposed to teach and show them all the exiting things that they'll experience, for a wife that can't even undress herself sometimes and for a person who never, ever, admits needs help - this is a very hard hit to take.

What I “own” is the shell of the person I was two years ago.

The fact that so many people have lost so much more than me does not comfort me right now. Not even a bit. I was told all people with RA go through a process that finally leads to acceptance and live a happy and meaningful life. I don’t know where I am in the process and doesn’t even matter.

Wherever I am does not change the truth.

So in a few weeks I’ll be starting medications that would “manage my symptoms” (as I refused to do so when diagnosed), while wrecking my immune system, my body and everything that refers to “my health” in the near and not so near future. Because I have no choice. I tried every single possible way to “handle” the symptoms the healthy way, it simply doesn’t work. So in order to avoid the wheelchair and be somewhat “capable” or “adequate” I’ll start attacking my immune system so she stops attacking me.

I don’t expect comments, I don’t expect replies, I’m not writing this as part the fucking healing. I’m not even sure I’ll be allowed to post this. I just have to say it, have to brag and moan or in other words "admit and accept my vulnerability" not just to me, but to everyone who asks "how do you feel?". So that's why I'm posting this - somehow I have to learn how to admit, or answer that question, without feeling guilty about the fact that I have a life-long health condition and I'll be on meds to the rest of my life. I can't imagine saying out loud any of the above, but I was told I have. If not - it will eat me up from inside out.

Not giving up. Never. Just angry. Very angry.

My family needs me so I’ll have to find a way to live in my new “shell”.  

There it is. I’ve said it, I bragged, I was ungrateful (and still am), I admitted the truth with no mask on my face and I have it on paper. Now I wait for the moment when “I’ll feel better” just because I talked about my demons not just in my mind but allowed other people to "hear" my monologue too.

I’ve read somewhere that live truly starts in your 40’s. Whoever said that for whatever reason does not want to meet me right now as I would really like to know what the fuck that really means. I had my fare share (or at least I think so) of ugliness and pain and I truly believed that as soon as I recover from my daughters’ birth (another horrific experience and another emergency C-section) we could finally start enjoying being parents again, enjoying our achievements, show them everything we can and everything we know. So I though “that’s it, from now on mostly good and happy things will happen”.

Applauds to the stupid believer…