Wednesday, 11 September 2013

Pregnant with Disabilities: My Experience

I’m well into my pregnancy now, almost 6 months. Before I became pregnant the thought terrified me, how would I cope? How would pregnancy impact my pain and mobility? Would I further damage my spine? And then of course, how the hell would I cope with a baby? I was 8 weeks pregnant before I found out, which was a blessing and terrifying. I’m 36 (almost 37) and everything you read tells you that your fertility drops drastically after the age of 35 so luckily we didn’t go through the anguish of trying for months, I think I would’ve found that unbearable. It was terrifying because I was taking pain medication and the early weeks are when damage to the foetus is most likely. I had to wait a further month before the first scan. The longest month of my life. Thankfully everything was developing as normal but I was still worried. 

I was taking duloxetine for nerve pain. It’s still a relatively new drug so the effects aren’t particularly well documented. To be on the safe side I decided to stop taking this medication. I’ve now had my 20 week scan, also known as the anomaly scan, and everything is fine and developing as normal. This is great news as I’m still taking some medication. I take dihydrocodeine ,or DF118s, which help makes the pain more manageable. For some women it’s just not possible to stop medication completely. Your doctor will weigh up the pros and cons of the medication you take and depending on your own circumstances you may be closely monitored. I’m receiving extra care. I’ll soon be seeing an Obstetrician who’ll oversee my care and arrange any extra scans etc. to check on baby’s progress, if needed. I’ll also see an anaesthetist to discuss pain relief during labour as it might not be possible to give an epidural due to scarring on my back.

Let me explain what my disability is so you can draw comparisons/ differences with your own experience. When I was 18 I was in a car crash. I suffered a nasty compression fracture of my lower spine. I also fractured and dislocated my right wrist, handily the one I write with, and I managed to smash most of the bones in my left foot and lower left leg. Now while these latter injuries cause me pain the overriding problem I have is my back. After the initial healing I suffered severe spondylolisthesis, or in other words, my lower vertebrae collapsed. To repair this I had to have spinal fusion surgeries. This is without doubt the most painful thing I’ve been through, and apparently childbirth pales in comparison, so I suppose that’s good! 

My spine continued to heal itself after these operations, which on the one hand is really good. It means my lower spine is solid and mostly stable. The downside is that I have a large bone mass in my lower spine which is rigid and puts pressure on my upper spine. As well as the pain I have from this I also have pain from scar tissue, nerve and muscular pain. Walking is difficult and limited, so is sitting, in fact staying in any position can cause incredible pain and discomfort. 

Chronic pain also brings its own delights. It becomes pathological, meaning it becomes its own disease. The human body’s amazing eh? *sigh* Anyway, those of you with chronic pain will know just how exhausting this is. It gnaws away at you, leaving you feeling like a husk of your former self. Chronic pain affects mood and pretty much seeps into every corner of your life. 

It’s understandable why we might feel a little bit trepidation about becoming pregnant. The body goes through a huge amount of changes which puts pressure on pretty much all your body, especially the spine. My 3rd-4th months were the most difficult (although the nausea wasn’t the great either). This is when my spine moved to allow space for my expanding womb. I didn’t think I could cope, I cried and I was exhausted. The fatigue was overwhelming. But then I adapted. I had to rest more and take time out to relax. It’s the only time I’ve been thankful for not being able to work. Some days I have to take more painkillers while on ‘better’ days I try to reduce them a bit. Luckily, I’ve also taken part in a Pain Management Programme which included Mindfulness. This has been without doubt been one of the things that is most helping me get through my pregnancy. It not only helps me deal with the pain but it also helps reduce the anxieties surrounding this. 

Other ways I cope with pain is swimming, or rather, floating about in the water. It takes pressure off my body and is incredibly relaxing. I also do stretches in the pool to keep my body as pliable as I can. During pregnancy your body will release a hormone called Relaxin. Relaxin helps your body to become looser and can be beneficial for those suffering from muscular pain. Unfortunately I haven’t experienced any benefits myself but I know others have, and their pain remained reduced until 5-6 months after birth. 

Rather absurdly, having a disability has actually been helpful while dealing with pregnancy. It’s prepared me for limitations, pain and uncomfortableness. It’s HARD work. I expect in the later stages of my pregnancy I’ll be able to do even less than I can now and all the extra weight and pressure will take its toll on my spine, but so far it’s been worth it. Seeing your baby at the scans is mind-blowing and knowing that everything is progressing normally is one of the best things you’ll hear. Then there’s those little movements in the womb. At night when I can’t sleep despite extreme fatigue and pain, I’ll lie there in amongst all my pillows and feel baby squirming and popping about. IT’S THE BEST THING EVER.

Something to bear in mind when considering pregnancy, instead of letting your fears and worries frighten you, think that you already do a remarkable job at adapting to your life. You’ve probably developed a whole range of different skills and coping techniques to live your life day to day, you may also be able to adapt them to being pregnant. So, while pregnancy is a huge challenge consider that it’s probably in your skill-set to achieve it. It may not be easy, but then again it might be. 

Let me summarise my advice:

Speak to your doctor about medication or ask to be referred to an Obstetrician or someone who specialises in your own disability. And do your own research. Things like Google Scholar should help you find academic and peer reviewed research.

Try to get to a healthy weight, if not already. This will make your life easier as well as reducing any complications during pregnancy like gestational diabetes.

Relax! Do relaxation techniques and mindfulness. These are invaluable. Read, listen to music, do whatever you enjoy to get some relief. It can be *very* stressful and these things will help to take your mind of your symptoms. 

Exercise, if you can and do whatever you can. It’ll help prepare you for labour and help your overall well-being. Somedays keeping active means for me a walk down the garden path and back which is roughly 30-40 metres, so it’s all relative. 

Plan! If you have doctor/midwife/hospital appointments make sure you give yourself plenty of rest time in between. My midwife has been excellent with this, she staggers appointments so I’m not doing too much at once.

Ask your partner/family/friends for help, you'll need it.

Oh and enjoy it! It’s hard but it’s also pretty damn amazing.


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