Pregnancy, Auto Immune Disease, Anxiety and other fun stuff

So this is a topic I have been avoiding, but feel I really should share this journey. To date I have kept my pregnancy pretty quiet and there are a number of reasons.

I am scared. I am scared that at my age (39!) a normal pregnancy is fairly high risk, and this is anything but a normal pregnancy. I have a heart condition (that I knew about & accepted that risk), I am overweight, we HAD a blood clot between the placenta and the uterus (its resolved itself now thank God), I have Gestational Diabetes, I have auto immune disease that can affect my unborn baby....yeah, the list goes on. And so I am scared that my precious little baby won't make it and it will be my fault.

I am aware that this pregnancy, without any intention to, is hurting some very close friends of mine. They don't begrudge my pregnancy, they don't say hurtful things, they don't ignore me, they at least on the surface celebrate the small milestones with me. But regardless, for one friend this baby is due right around the same time they gave birth to their beautiful angel sleeping at 38 weeks, for another friend, she should also be going through the same milestones as me as she was due just 4 days after me, but sadly miscarried at just 8 weeks. After years of struggle to have a child of their own, it is, it must be, incredibly painful to watch us have yet another child. 

I don't blame them for feeling the way they do. If the situations were swapped, I would no doubt feel the same way. They are beautiful and gracious and tell me not to hide my pregnancy.....but I can't help it. I hate that something that is filling me with so much joy, is hurting them so deeply.

To put it like any 2 year old (or teenager for that matter!)...

IT'S JUST NOT FAIR!!!

To add to my mixed and confused emotions, people seem to have suddenly forgotten I have an illness. It's like the pregnancy cancels out everything else I have been dealing with in the last 12 months. Sadly, the opposite is true. Sjogrens, possible Lupus, and certainly anxiety and depression do not stop because you are pregnant!! 

I still have pain, lots of pain, pretty much all the time. Certain joints are worse than they ever have been, but given how blessed I am to be pregnant, I feel like I don't have the right to complain about it. The dryness, particularly my eyes and my skin, is the worst it has ever been, and I can't take most of the medications that keep the symptoms under control as they simply are not proven to be safe in pregnancy. So, while most people in the second trimester are partying with the news they are past "the danger period", they have endless amounts of energy, they have that "pregnancy glow", I am finishing each day by collapsing into bed and wondering how I will do it all again tomorrow! 

The Sjogrens gives me an antibody in my blood known as Ro+. This antibody can affect our babies heart at any stage from 18-36 weeks and interrupt the electrical impulses, causing heart failure. This is a constant source of worry as there is very little we can do unless we catch it in time, and the time window is small. So prayers and regular scans is really all we have. 

And depression. Wow. The worst of my depression and anxiety was sparked by Antenatal and Post Natal Depression, so of course things are worse. Pregnancy hormones do not do nice things to my brain chemicals. Thankfully this time we are prepared. I have not stopped my anti depressants and my amazing husband and friends and even employer are supportive, understanding and accommodating to the "bad days".

So is this post all just one big whinge? Am I looking for a whole heap of "poor you" comments?

NO!!!

I simply want people to understand. 

I am beyond THRILLED to be pregnant. I love this baby so much already, that at times I cry from happiness. I feel blessed, not burdened. Despite all these odds, all the hurdles, I am carrying this little person I am honored to be mummy too! I am, all things going well, going to be a Mummy one last time. And that makes me the happiest person alive! 

So PLEASE, do not confuse my bad days, my cries, my whinges that things are hard as me saying I don't appreciate the blessing I have been given. I appreciate it more than you can imagine. Each and every day this baby is a part of me, a part of this family, is a blessing. But the pain is exhausting, and the exhaustion is never ending. Sometimes it overwhelms me, gets the better of me and I crack. I am just a human!

And PLEASE do not confuse my seeming lack of excitement or silence about this pregnancy with disinterest. On the contrary, I am bursting with excitement at each and every milestone! I share with my husband and family the joy I feel at every little kick, every scan that shows things going well. I choose not to blast it all over social media, simply because I love the people who are suffering watching this pregnancy. I want to protect them, although I know I can't. Any little thing I can do to lessen the pain, I will do. Not because they want me to, but because I care about them so much, I can't bare to continually hurt them.

Sjogrens Syndrome

Sjogrens Syndrome.

It sounds like a bad Swedish Band name, except its pronounced *sho-grins*.

Which makes it sound like something you need before you go on stage on Broadway.

"Make sure you all have your Jazz Hands and Show Grins girls".

I never realised just how much hope I put in having a name for what was wrong with me. I thought once I had a name for it, a medical term, suddenly it would be like 

"what's wrong with you?"

"I have Sjogrens Syndrome"

"Oh, I understand" or "Oh I see" or even "Oh you poor thing, no wonder you feel like crap all the time"

The reality is, when people ask what's wrong with me and I tell them, they still don't understand. I still have to explain everything. I have to rattle of a list of symptoms, all of which seem to have nothing to do with each other. They just seem like random complaints.

It just feels like one big excuse with a name.

For example, at the moment the Sjogrens is causing severe joint pain, which comes and goes, so one day I will seem fine, the next day I can barely move. I have constant sinus infections/throat infections because my body now has issues producing saliva, or any sort of bodily fluid, meaning infections occur easier. Also, because it is auto immune, my body is constantly attacking ITSELF. 

Oh, and fatigue.....You know that feeling after you have been struck down with the flu for a week straight, barely able to get out of bed the whole time, then you get up and start moving? You feel bone weary, in your muscles weak and shaky? That is how the fatigue feels to me. On a good day I am fine and I can go about life normally. Go to the gym, go to work, come home and do the housework, run around after Mini Miss and feel fine. On a bad day I can barely get out of bed at all. Most of my days walk that middle line, the one where I'm not great, but not bad enough that I can't get out of bed. That limbo, where I look and feel like crap, but manage to keep going.

Some days I run on sheer will power, which is funny, because my will power is not so great. If it was, I would certainly be a lot thinner!! 

Knowing there is a very real possibility that there is more to it that just this one thing, and that, in reality, while I may find a treatment for some of the symptoms, I will have to live with this for the rest of my life? That is beyond overwhelming. The urge to just give up is strong at times. It seems too hard. It's too much. I HATE with a passion feeling like this all the time. I hate the disease and I hate the excuse. 

I want to be normal again. I want to be well again.

I don't want a name, I want a cure. 

Having a name for it feels just the same as using the term procrastination. It just gives what you are doing a name. Its still being lazy, but it has a name. 

And as long as people don't understand that an illness can leave you perfectly fine one day and crawling out of bed just to pee the next day, it will be no different. The name is just a term for the excuse. I can see people thinking "oh, so the doctor gave you a name for your excuse, good-o. Now you can complain about your symptoms, which for all I can see are really just in your head, and have a term for it. It's still just excuses and complaints". 

Except it isn't. 

I don't want to feel like this. So badly so that I push past what I am capable of. I push through the pain, the tiredness, and I end up where I am right now. At the end of my tether, looking for any way out. Any way to escape what I feel, what I deal with everyday. I become emotional, depressed and feel completely useless. I feel like a burden on everyone, especially my family. I feel like a waste of space. 

Suddenly, I can understand with clarity why my Mum gave up her struggles. 

Thankfully, in a way I guess, I have lived through the aftermath of that "giving up", and I refuse to do that to my family, ever. So, I will "sook" for a day or two, and then brush myself off and keep fighting, keep on going. My family need me, and no amount of looks, dismissive "oh, i see"'s, no lack of understanding stops that from being true. 

My girls NEED a mother, and I, for better or worse, am what they are stuck with, so I best make sure I do as good a job as I can!