Living with disability and chronic pain in Ireland. Ehlers-Danlos syndrome, chiari malformation, hip dysplasia, dysautonomia, hiatal hernia/ GERD etc. Taking part in the campaign to reclaim the word cripple as a positive. Ex cancer patient (Hodgkin lymphoma). Very pro-choice #RepealThe8th. Atheist/ sceptic/ scientific thinker/ anti dangerous woo. Love art, photography, animals and vintage toys. Trekkie in between all that... May contain sarcasm and crappy puns.
As some you probably know, if you follow me on Facebook or Instagram, I'm currently pregnant. It's been a very tough few months, trying to navigate not being on my usual wonder drugs that keep some of my worst symptoms at bay, while adjusting to the increase of symptoms that the pressure of pregnancy has placed on my body -as well as all the pregnancy usuals. We are delighted though, and cannot what to meet are little muffin.
I'm lucky enough to be in a maternity hospital and under a team of doctors, as deemed a bit higher risk than average. I won't go in to all the nitty gritty of how my health has declined throughout the pregnancy in this post, and what my doctors are taking in to consideration, but I might do a video for the #EDS4IRE YouTube channel outlining my personal story further. Here's just some of the increased issues I have faced to date, and indeed you may face too if you have these conditions. Just remember, even if your health profile mirrors mine, everyone is totally different! So take with a pinch of salt if you are wondering what to expect in your own pregnancy.
I
was inspired to write this piece because of the brave and harrowing tales that
have come out of late, on the Facebook page In Her Shoes. This is a marvelous
page, and the perfect way for those who don’t understand the complexities of
the 8th Amendment to see how it has affected everyday Irish women. When you’ve
never been in a situation yourself, it might be difficult to grasp others stories
-especially when each case is so different to the next. It’s also hard to
understand how the 8th amendment effects far more than abortion laws
and has had detrimental results on the health and lives of wanted pregnancies,
and the women involved.
For those who wish to learn, In Her Shoes highlights these stories perfectly.
If you live in Co. Louth and have a story to tell, please contact Dundalk4 Choice and we will write it up on our page.
CW: Miscarriage, foetal tissue, trauma.
_________________________________________
“I can’t detect the heartbeat” -A dreaded sentence. It still hits me in the
face.
I was 23 and pregnant -unplanned but I knew I didn’t want to have an abortion.
I had been using contraception, but these things happen. Shortly after we found
out I broke things off with my boyfriend as I didn’t see a future with him anyway,
and decided to go it alone. It was going to be tough, but I knew it would be
the best thing to do for me and my future child.
My first appointment went normally, the nurses were nice, and I filled in the
usual forms. I looked a lot younger than my actual age and I was very aware of
this, it’s always been something that has worked against me. As there was a query
over gestational ageing I was sent for a scan. I think I had missed at least
two periods, but was unsure if more. The doctor had guessed I was about 10
weeks along.
Going for the scan by myself everything happened so quickly. “I can’t detect
the heartbeat” was all that was said at first, that sentence ringing in my
ears and hanging in the air for what seemed like an eternity. As utterly
devastating as that moment was, I knew there was no hope. I knew I was far
enough along for a heartbeat to be detected. They estimated the foetus to be
around 8 weeks or so, meaning the pregnancy had ceased about two weeks prior to
my scan. I waited, shocked, to hear about how they would go about a D&C.
But it was not mentioned. Instead they hurriedly tried to tell me “there’s
still hope as you aren’t bleeding”, and “we just have to wait and see, but
there’s nothing we can do”. I was confused, even more confused and lost than I had
been at hearing the news I had miscarried. What did they mean, was the scanner
broken? Even still, they knew the growth should have been more than 8 weeks along…
[Originally written in August 2017. Updated December 2017]
By now most people have probably watched Amnesty International's video regarding Ireland's 8th amendment and why it should be repealed and what issues it currently causes (if not, watch below).
25 Annoying Things About Being Pregnant
For me it brings to mind of when I was diagnosed with cancer, back in 2013.
It's probably best to start with a personal story.
No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed. One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over very vaguely, and only when I tried to bring the subject up. A simple "I'm sure you'll be ok" was all that was given in this respect. Something I realised later was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren't granted free by the HSE, and perhaps some doctors just see it all as a bit "icky"? I really have no idea. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow (sorry lads, not sorry) was a good sign at least.
No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment. Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time -obviously, that would be irresponsible. But as we all know, even with all the contraption in the world -shit happens.
I became friends with Sarah around 2003 as we were part of a wider group of friends (scup the dirty AOH grungers, haha) and we later lived together.
I inherited the semi-famous Tubby cat (AKA Tubbz) from her, spent Christmases together (AKA St. Spickets), became godmother to her beautiful son Cian, and later devastated by his untimely passing. We've also been through many a carton of wine, mountains of white tights, bottles of Bucky, buckets of bobble hats and a million different hair colours between us!
Q. How do your illnesses effect pregnancy and child birth?
This January marks a special time in my life -it marks mine and my beloved's (known as Bicky on the blog -Bicky and Blanky being nicknames we gave each other in the early days) anniversary. Seven years together. Seven fun, dramatic, wonderfully adventurous years spent getting to know each other, and discovering ourselves, too.
As mentioned before, I've been working on and implementing a five year mini bucket list -To complete from ages 30-35 (I'm now 31). I like the idea of a short, temporary list, rather than one big, long list...
Being ill means I don't always have the luxury of knowing what's around the corner, and planning anything can be hard. Life is very much on a day-to-day basis. So no laughing at some of these rather silly, and small hopeful accomplishments! Or nuggies all round! They may not be a big deal to a healthy person, but as I sometimes need help to the toilet these days, they are milestones in comparison.
It was reeeeeally therapeutic writing this! I suggest everyone does one.
