Posted in Archive, September 2021

‘Learn to live with it’

After over a year of my follow up gyny appointment being rearranged and cancelled repeadedly by the hospital due to Covid, I finally saw the consultant. I arrived with high hopes, a notebook full of the requested data they’d asked me to log, and a very grumpy daughter who would have preferred we’d stayed on the bus.

After reassuring staff that I’d contracted Covid at the start of the month and hadn’t escaped isolation, they took my temp which was border line high. Feeling thankful that a quick round of begging and reassuring them that I felt fine, I was allowed to stay. Two hours later, I was seen with grumpy toddler who was vocalising her unhappiness in tow.

Normally when I have a female gyny the appointment goes slightly better. I explained that my periods were getting worse 48 days long on average but 73 was getting more frequent. That they left me physically sick and due to the change in hormones increased my eds symptoms. She brushed it to one side.

“You will have to learn to live with it”. I’m pretty my face was a picture. My emotions were not in check as I was desperate for this appointment to go well, having last time discussed albation with me. Meds are no option for me due to my EDS, I understand that, hell we had even tried that. I queried the more radical surgical and was told not untill I’m forty, at the moment I am 28.

I can’t get my head around it really. I’m lucky to get more than two weeks between each cycle. It leaves me in pain, sick and exhausted. But yeah sure “learn to live with it”.

Posted in Archive, January 2021

Hormones and Chronic illness

Hormones, they hit us out of the blue in puberty and never stop showing up no matter how much we hope they may just skip a month. Even before my diagnosis of Dystonia my monthly visits from the witch were awful.

During my teen years my periods were unpredictable; sometimes not showing up for months and sometime arriving every two weeks. They would leave me doubled over the toilet in the night throwing up from the cramps, and going through a pad in under an hour over and over again. I spent years visiting my then GP who told me all this was normal and that I needed to learn to deal with these symptoms. It was only then when I was studying for my midwifery course that I had the courage to go to a new gp who recognised my distress and referred me to gyny. One operation later and I was diagnosed with Endometriosis.

Quote from Camran Nrzhat, ND.

Now my periods are worse than before and on average last 72 days. Yes you read that right. They last 72 days. Now normally they’d treat with a hormonal contraception to stop the period. Here’s where my health comes into play. My spasms, now I don’t know whether this is my Dystonia or EDS, but I can’t use any intrauterine device as the spasms physically reject it from my body which is fairly uncomfortable. The pill*/patch/injection all work on giving you progesterone however I am unfortunately one of those rare Ehlers Danlos suffers who can not tolerate this. The increase causes a dramatic increase in dislocations body wide.

*I am aware there are pills that are not just progesterone based however due to the fact I get daily migranes with aura I cannot take these as it increases my stroke risk.

Between the prolonged bleeding which leaves me severely anaemic (currently 3.1), the increase in spasms, dislocations, fatigue, it’s fair to say hormones really screw me over. So gentle hugs to all who also experience this. Remember chocolate always helps!

Posted in Archive, Novemeber 2020

Family Planning When Chronically Ill

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.

Posted in Archive, January 2017

“Just Stay Positive”

I have spent the majority of this week at varying hospital appointments, today is my rest day before heading back to the hospital for more testing tomorrow. Frustration and disappointment has been my main response so far to these visits. Part of this is most likely because I am under the care of several different specialists who are experts in their respective fields and generally wonderful. I’m quite lucky to have them as my doctors. However, every now and then I meet a new Dr and have to fight the same misconceptions and preconceived ideas from scratch; it’s exhausting, emotionally draining and depressing.

I’m quite good at finding the positives in being chronically ill,  I’ve been known to be in agony, hospitalised with spasms and dislocations and still be giggling away at whatever ridiculous manifestation my symptoms have appeared in this time. That being said I’m aware of how important it is to be completely honest with my care providers about how I’m managing and asking for help when I need it.

I had been counting down to yesterday’s appointment to see the local obstetric consultant as I am really at a loss with what to do to help myself. The advice so far has been plenty of bed rest and to use my wheelchair if I have to go out. This makes sense and I’ll admit I was unreasonable hoping the Dr yesterday would wave a magic wand, but university restarts at the end of the month, my fingers dislocate when I push myself and I’m pretty sure turning up to uni doesn’t count as bed rest. So I sat in front of the consultant asking if there was anything, even the smallest suggestion, that he could think of to help me help myself. “Just stay positive” was his advice. It was also the last thing I wanted to hear. 5 minutes later he admitted he didn’t have a clue about any of my conditions, so I walked him through them briefly. His advice changed to just come to hospital every time you have a fainting episode so we’re aware of you; my episodes are at the moment generally occurring over 10-20 times a day, so I’ll just move in shall I?587860e5ecea791e83ab995d35b2d52a

This whole appointment got me thinking about my array of conditions, which are confusing and do overlap, so for those of you who are curious here’s a brief introduction.

  1. Generalised Dystonia – this trickly little brain alien causes painful and often debilitating spasms in my eyes, jaw, neck, left arm and torso. It’s not curable, and every patient presents slightly differently. It’s currently playing up as I’m off treatment for the rest of my pregnancy.

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2) Ehlers Danlos Syndrome Type 3 – Unlike my Dystonia, unless I have dislocated or subluxed you cannot tell I have this condition. It causes fatigue, brain fog, pain, dislocations, allergies amongst many other symptoms.

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3) Postural Orthostatic Tachycardia Syndrome and Dysautonomia- This is a relatively new diagnosis for me. Currently this means I can’t even sit up without my heart rate shooting through the roof and my blood pressure plummeting. It’s pretty bad at the moment, due to blood pooling when I eat I pass out during meals. I also pass out if I get too hot, move too quickly etc. My autonomic nervous system is basically a bit temperamental and therefore many different automatic functions can malfunction.

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4) Non Epileptic Seizures – Previously my care providers thought these were pain related but now they think my PoTS may have something to do with it. Often Drs misunderstand these seizures and presume they are either psychogenic or part of drug seeking behaviour.nes.jpg 5) Endometriosis – I fought for years to have this investigated, constantly being told that it was simply bad period pains.  Many drs ignored the fact that they were every 2 weeks, extremely painful, and very heavy. By the time a diagnostic laparoscopy and treatment was carried out extensive damage had been done and I was told that my chances of unassisted conception were very low. This make me all the more grateful for our little miracle.

6) Chronic Lyme Disease – Lyme Disease is a bacterial infection that if caught early can be treated easily. When it becomes chronic, like in my case, it is extremely hard to cure. It affects multiple systems and therefore is frequently misdiagnosed.