Limbo land

Warning this is a long mildly ranty post. Sorry x

Some days I’m alright.

Other days it feels like I died too, they just forgot to bury me.

Or else I’m stuck in limbo land, it feels like I’m not really here, I’m not myself I’m just this other. I’m waiting for something, anything to happen to make me feel. 

Right now there’s mothers everywhere. The Mother’s Day adds are on telly and in supermarkets. Adverts and displays for flowers or meals out or chocolate flood the consumer market. Our in-laws, with their little bundle of upcoming joy. The adverts on tv complete with sets of artificially happy families.

Motherhood is sold to us as this great achievement, people tell you that there is no greater thing in life than having a baby- as a society we still see couples without children, women especially, as somehow lacking or broken. As abnormal. 

And theres this huge push towards everyone being able to have babies. Everyone knows someone who did this and it worked and look how happy they are, be that via  rounds of scientific IVF treatment or traditional Chinese medicine using ground up shark penis or some other bullcrap. 

If you say you can’t have kids the first thing people say is ‘have you tried’ such and such or ‘have you considered’… 

Or the worst one of all:

‘Are you sure?’

Well no, I mean, why don’t I take another look at my genetics. Maybe we missed something. No. Well whoomph. There it is. Unsurprisingly no change there then.

If one more middle aged effing woman asks me if ‘I’m sure’ as if just because I’m 18 and haven’t done the ’rounds’ – I think I may have to shove them, and their intentions down a very deep well. 

You don’t tell people you can’t have kids for the fun of it.  How would that be fun. I’ve had to deal with the knowledge that 

A. I  will pass on some, if not all aspects of my chronic illness to ny children. 75% – 95% + inheritability depending if the person I have children with is a carrier of hypermobility. My partner is, so subsuquently our children would have a 95% + chance of inheriting the more severe form of the gene mutation that I have. It’s something to do with the proteins, but I can’t fully get my head around the specifics bar the statistical probability. 

B. It is unknown how my unexplained ‘episodes’ of unresponsiveness to stimuli in the left side of my body and the resulting severe muscle weakness etc would effect a pregnancy or the development of the foetus.

C. There is already a 13% increase in the associated risk of miscarriage with one of my conditions. Meaning that even without having miscarried my baby I would have as high a risk of miscarriage as someone who had already had one. 

D. I am 4.7 ft. My tiny stature comes with it’s own risks.

E. I am under the desired weight goals set by the hospital. I’m 7 stone 6 at the moment. I should be 8 stone to 8.5, this time last year I was 7 stone, the summer before 6.5. Although my BMI technically shows at just above underweight I am supposed to try to chub up a little because I am frequently sick because of stomach issues related to medication damage and my condition in general.

When I was about 15 or 16 and I first had these episodes it was assumed that they were probbably neurological- either a bleed on the brain or some form of other abnormality. Scans showed clear so they sent me off for psychiatric evaluation and let me tell you that was class A bullshit

They don’t actually talk to you. You tick shit off on a form and they tally up and score your answers and then you get categorised. 

What I actually wanted was someone I could talk to because I was shit scared and very very sick. So it was around then that I started to ask questions. 

My old consultant was an out and out cow, she was convinced it was all in my head and repeatedly refered me for assesment. I would like to point out that she only gave up after I have seven. Seven!  Certificates to prove my sanity. She would not alter my pain medication from cocodomol and it subsuquently caused severe chest pain (I was told to take more) heart palpitations, sickness, stomach issues and has quite possibly caused damage to the receptors in my synapses although my new consultant says they can’t say for sure, but that could cause the ‘episodes’.

Not once were we told that these were common side effects. Our concern was brushed off. She did not believe in communication…

When I asked my old consultant how this would effect me in the future she said ‘it could affect your children’ but that was all I got. 

What I got from my new consultant, the nurses at the support group I attended (no funding available anymore), and the specialist physio was the specifics. The rest I know is hours of research and emails and reading up later.

My hips and whole skeletal system is slightly deformed. My knees and ankles are bowed inwards where there wasn’t the muscle strength in the last few years of growing  (not grown since I was 14) to hold them straight. My joints grew larger than normal to compensate for the fact that my ligaments were too stretchy to do their job, as a result you can see the larger joint size and crookedness clearly in my fingers. Less so in my hips.

I cannot straighten my legs out in front of me. If my feet point straight up then my knee caps are inwards as are my hips. If my knees are straight my feet are at odd anes and if my hils are straight then my legs and feet point out even further. 

The result of all this is pain. Chronic pain.

So no. 

I will not be having biological children unless I am ever in an unplanned pregnancy and by some miracle they survive the first trimester, and even then I don’t know if I could keep the pregnancy or if it would be considered too dangerous. I am not bringing into this already overcrowded planet a child destined to grow up in pain. I can’t. 

So can everyone just stop treating adoption like it is some consolation prize or last resort. I wanted to anyway because I knew what it was like to live in fear and wanted to make lives better for children who have it worse that I did. Now it’s my only option but I haven’t just jumped to this idea. 

I’ve been considering it for years, it’s just only now that I’m definitely doing it.

Love and support always, 

Surviving Miscarriage Together x

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