Wednesday 4 March 2020

Pregnant and Disabled

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.

Ehlers-Danlos Syndrome

With pregnancy and surge in hormones comes lax joints, this is true for every pregnant person. If you have a condition where your joints are already lax... well you get the picture. The increase of subluxations started very early for me, I knew to expect it but it was really immediate.

Often when new doctors ask me which of my joints sublux and dislocate, I usual start by telling them it would be easier to point out the ones that rarely dislocate. These would be my ribs, my jaw and the unstable neck (although I find it hard to tell when the neck goes if that is a real "sublux" or what is happening in there). These three areas have increased immensely, along with all the usual suspects.

POTS/ Dysautonomia

I remember reading that some people with POTS actually experience less symptoms during pregnancy, like wow how interesting... as I am chronically cursed though, I do not fall in to this category. Now in my third trimester, my heart is particularly bad. The increase in tachycardia has been hard to deal with, and I'm even less mobile than I had been. Even when not in agonising pain, I can't walk more than two minutes without feeling like I'm having a heart attack -on good days.

Chiari Malformation/ Neck Instability/ General

Without my medications (especially my beloved Baclofen), things have been VERY bad. Muscle spasticity, increased noise in my ears, pressure headaches, spinal pain, tense muscles etc. etc. - have all increased dramatically. There really is no way to sugar coat it, and I wouldn't want to lie here. Luckily I have a new wheelchair from the HSE (I'll do a separate post introducing her).

So that's kind of all the main craic in relation to my agonising pain lol... My mobility is probably the worst it has been in years, and we have had some tough decisions to make, but we know it will be worth it in the end and just trying to focus on that. It has of course been lonely (most the people I know are also Disabled or chronically ill, so there isn't a stream of visitors and there's been plenty of days where I couldn't even sit up in bed, even if there was).

My time inside alone has given me plenty of prep time as well as thinking time. I would love to attend parent/ baby groups if possible when our wee girl is here and I'm able to, everyone needs to see adults for there own sanity and online forums aren't as great for babies as they are for adults. It occurred to me though that there will be inherent and obvious differences between myself and Bicky and other parents, with me being Disabled and him being my carer.

With this in mind, and because I'm a real "someone should do that" type of person, I thought it might be worthwhile setting up a parents groups in Co. Louth for those of us who are disabled. Some of you might recall that I run a chronic pain support group on Facebook called Irish Painies. The parents' group will be an add on to this online forum. You can find more details and express interest here on the public page.

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