No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday
A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.
Picture of me ready for church wearing my Aspen collar to been help support and straighten my neck
I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.
Off to church. Scarf ‘hiding’ my neck support
My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections
Damon and I had always said right from the start of our relationship that we envisaged having three children. We both came from fairly large families, with him being the eldest of three, and myself the eldest of four children, so it seemed natural for us to imagine plenty of tiny feet running around creating havoc in the way only kids can. As my conditions were fairly well controlled when we met, the only issue with our forward planning was the fact that I had been told many years before at the age of 19, that I had severe endometriosis; to the point that they suspect I would be unable to conceive naturally and would need medical assistance to do so.
Common symptoms of Endometriosis
We have been fortunate to have been able to have our son Stefan Elijah, now three, and our daughter Evie Maise, now 18 months, without any assistance. Their existence to me feels miraculous. When we fell pregnant with Evie we discussed frequently trying for our third child shortly after her first birthday. It was exciting, and something I was really quiet fixated on. Physically I had managed to get back to a good place after having Stefan, and it seemed wise to do it close together, before my health started to go downhill. My pregnancy with Evie was a rough one however, and I spent multiple periods as an inpatient in my local hospital. We had hoped that after Evie’s arrival that my body would improve again as it had following Stefan. However, this time round it took months to get back in to the Botox system and once again I ended up in the hospital for over a week needed an NJ, constant fluids, unable to swallow, or really communicate. With each day the idea of a third was slipping further away, I refused to talk about it for awhile. It really affected my mental health.
While I have had periods of better health over the last 18 months, it has generally been a downhill, to the point where I’m now essentially blind in one eye, reliant on an electric wheelchair outside of the house, and being assessed for demyelinating diseases on top of everything else I already had going on. My hands are full to say the least. So Damon and I sat down and agreed that it would be unfair to even consider bringing a third child into the family; he was also concerned if my heart could physically take a third pregnancy as it has struggled with the last two. It was an extremely hard conversation to had. Even though we both knew it be the right choice to make, it didn’t make the biological want for another child any less.
Stefan aged 3
Evie 18 months
I often get asked a mix of questions in relation to children. Sometimes people will ask “So when do you think the next one will come along?” It’s a well meaning question, that I always answer with a light hearted “oh my hands are full enough with two”, but it stirs the emotions, the want for another that is so strong since our daughter started to so much more independent. Other times it’s the slightly harsher “How you can even consider having biological children when you know some of your conditions are genetic?” Generally I don’t answer this question in public, mainly because it catches me of my guard. However it is fair. My Ehlers-Danlos Syndrome has around a 50% inheritance rate, its slightly more prevelant in girls than boys. Yet there is every chance that both children have escaped without developing it, there is also a chance that if they do have the condition that it’s not as severe as mine. There is no way to know. It’s also worth bareing in mind that mine is made worse due to other conditions that impact each other. I would say that before you ask anyone about kids really think; if they have a medical condition perhaps stay away from the topic until they bring it up. In can be a sensitive one.
Dystonia and Me 