My surreptitious squatter conundrum!

I have been somewhat absent in the virtual world since the beginning of the year. It wasn’t my plan, of course, but life rarely goes as plan. Actually, life has a way of not just surprising me, but outright astounding me - not to mention everyone around me too. Turns out, while I was getting my replacement neurostim surgery and all the dramas in the lead up to, and during; my body had a little squatter hiding away deep within - my little dutch kraker. I was also pregnant! I didn't even know it was possible, and yet.... 

I spent the greater part of the year trying to get my head around it, the marvellously ordinary miracle of growing a new life inside of me. And the sheer terror of being woefully unprepared and perhaps a shade too incompetent to be entrusted with a new little person to keep alive. Honesty, I’ve never really been the maternal, nurturing type who dreamt of marriage and kids from childhood. I wanted to see the world, experiencing the adventures far from the mundane. Though I always had an open mind, for the majority of my adulthood, having a baby was not even an option. I was embattled with Pain, finding my way in my new body and fighting through the workers compensation case. Most of the time just being touched was unbearable, I could barely see beyond the Pain. I was too busy hiding its presence from everyone else.

At 20 weeks....

The big choice to go with the neurostim in the first place nearly 4 years ago was to allow the possibility of pregnancy. Getting older, it seemed, made me not want to lose that chance at normality. Getting so severely sick just six months later, and spending over a year recovering from that threw a spanner in the works and put any baby plans firmly away. When you firmly put something out of your hear, it can ultimately become the reality without even trying. The universe has a sense of humour! But yet, even in all this - the crazy and unconventional - I’m fairly confident I’ll manage in the same way I always do: taking all the craziness as it comes. What other choice do I have? Life is like a box of chocolates.... 

This was no ordinary pregnancy. It is a high risk pregnancy from the get-go for both baby and I. The CRPS; the implanted neurostimulator, for which pregnancy is one of those “not recommended for pregnancy", to "Ah, no idea if it’s safe - can’t test on pregnant women - *shrug* no guarantees!”. Even though my neurosurgeon said they had not had any previous patients who had a full pregnancy with an active neurostim, they didn't anticipate it being much of a problem. I am disabled, which in itself is not the issue others make of it. It wasn't going to make it any easier. I don't even know if I can even anticipate the problems I will need to figure out solutions for just yet. I have ‘difficult to manage’ asthma that doesn’t always respond to treatment and flares for no reason. I hope it behaves itself. My partner and I are over 35, which isn't really old in the scheme of things and the least of my worries. 

A bigger issue was my medication list. It was not going to be possible to come off, or change, any of my medications. It took quite a while to go through the whole medication list, looking at any alternatives and consulting with my other specialists. None of them were able to be changed, it was too risky to meddle with the combination when there was so much at stake. I am certainly not the first woman in this situation. Many women need to continue taking medications while pregnant, but it is far from ideal. The difficulty too, was if one was tapered off, could it be the one that would make the whole jenga block tower completely fall apart. 

My mobility is already quite limited, and it would became more so as the pregnancy progressed. I knew that, but what could I do? Women who have far more issues than I are able to give birth every single day and manage, albeit with good support networks. Mobility itself becomes more limited just in the normal progression of normal pregnancy. It is possible that my asthma could get a lot worse in the third trimester, as all those wonderful natural anti-inflammatories released by pregnancy hormones dip lower. Which is why my pulmonary specialist ("longarts" - lung doctor in dutch) didn't want to change any of my medications, even the newer 'untested in pregnancy' ones. It might not even happen - why always think of the worst? What is the point of catastrophising, dreaming of things that might not even come up. All these things can happen even when I’m not pregnant, though perhaps not the ridiculous hormones and large belly! 

They did a LOT of extra testing throughout my pregnancy, which was far more medical than the vast majority of pregnancies here in the Netherlands. The Netherlands is a country of midwive-assisted home and birthing center deliveries, not the medicalised hospital birth that we are used to back in Australia (or the UK, USA and many other countries). But even for a medicalised pregnancy, I spent most of my third trimester in waiting room seats, 2 or 3 appointments at that hospital a week! I felt like I was already living there. All the testing, all the scans, all the medical care I received - all showed a very healthy baby. It wasn’t, however, an easy pregnancy by any stretch.

Pain not always the biggest problem....

And then at 28 weeks... yikes!!!

While it was a very different pregnancy than usual, I can’t say that it is all the more difficult than anyone else's because I have Pain. Pregnancy, by definition IS difficult: you are literally growing a whole new human being inside your body, one that must not only displace and squish your internal organs to accommodate it, using and taking from your power and energy reserves; then for it to somehow depart and crash its way out from the confines of your body after it has sapped all that it needs. One could call it the best kind of parasite. On the good side, I was fortunate to not have had morning sickness. Which was a good thing - I hate throwing up! I didn't even know I was pregnant for the entire first trimester. I got the shock of my life to see an actual baby floating around inside during my first scan. 

During a sizing scan around 28 weeks however, they found I had way too much amniotic fluid, called “Polyhydramnios”. During this period, I had ballooned from a respectable pregnant lady to the size of three houses and was struggling to actually fit into my tiny dutch kitchen and bathroom. This diagnosis was quite alarming, a frightening period for us. Having either too much, or too little amniotic fluid can be a symptom of a whole host of scary things. Things that were of my nightmares. The unknowables of my long medication list and the neurostim (or age, let’s be honest). That it could be my fault... the guilt I felt during this time was immense; hating that I could have put this tiny little person at risk because I was defective. I thought I had left those emotions far behind, but they emerge out when I least expect. That self-blame and self-hatred of having CRPS.

Turned out, I had been gifted with gestational diabetes. This may be something huge and scary for other women, but for me it was the biggest relief. Though a somewhat surprising occurrence, as I had already been through the joys of a fasting glucose tolerance test and passed. Hormones are funny things though, and the universe found it so amusing  the first time around that it wanted to give me another crack at it! And, so this fasting glucose tolerance test was a failure, something I knew already as I lay there on the paper-sheeted bed wanting to die in a pool of my own vomit! Often with gestational diabetes, being careful with diet and taking a brisk walk is enough to keep the glucose levels under control. With me, and the other lucky ones, the diabetes proved too unstable without insulin. I ended up needing to inject insulin 4x a day, before meals and bed, for the rest of the pregnancy. Injecting myself was far less difficult than it sounds, or even as I expected it to be. To be honest, by this point I hardly cared. Without insulin, I couldn't really eat anything. Outside of the diabetes I got some dizziness, weird sleep patterns (and dreams!) and lots of peeing, but those are normal symptoms that come by normal pregnancies. And the swollen feet and ankles... like CRPS, but not!

I do have more pain, even now. Normal people pregnancy pain, normal pain from walking funny because I have extra weight all concentrated on my front. Normal pain from my fluid-filled pregnancy ballooning swollen feet! And the inescapable: my normal CRPS pain in my legs and arm all turned up a few notches. Thank god I have that newer high frequency neurostim IPG! I think without it, I would have had a far more difficult time during my pregnancy, with the suicidal pain like I had before. Maybe more has changed in me than just having the SCS and time. When you survive what was the worst pain, what is the pain that comes after? When so much is at stake and so much to gain?

I knew that my experience: how I chose to process the pain could cause more stress on the baby and me, which is not healthy for either of us. My insomnia from Pain too, nearly drove me into the dark place. But pain that is Pain cannot be simply ignored, nor medicated away. The conundrum. It was also hard to ignore the upcoming risk of pregnancy and delivery (whichever way it happens) could cause further spreading of CRPS into new sites. I might be cold and pragmatic about it all, but I'm not completely divorced from my emotions and fears. The ever present catch-22. At the time I cannot afford to have an asthma exacerbation, it is it the time where I am most at risk. Keeping active is even more important for someone like me, but also all the more difficult when I have more weight to carry....

Nonetheless, I found an excellent physio. I often find that all types of manual therapists are very much a luck of the draw. Sometimes I just happen to find the absolute best for a particular situation or time by the stars and fortune (or hunches!). I think most are doing their best, but some rely upon outdated models with their biomedical limitations which prove to be ineffective and unproductive for pain. And for me personally, I was way too exhausted to even fight to get heard. I need flexibility; an ability to think outside the box to find unconventional solutions. I need someone who is willing to learn with me, to guide, but also who can brainstorm fun and quirky solutions with me. Someone with a sense of humour too, is vital! And that someone was a bubbly, enthusiastic girl named Sophie, who became my invaluable ally, and someone to whom I shall return to post-pregnancy.

So yes, it is a very complex and complicated pregnancy! But you know what? Making and building a tiny new person IS a complex and complicated business. But it is also the most supremely normal and natural thing I have ever done in my whole life. For all the weird, wonderful and downright abnormal things I’ve had going on. Internally, in the micro and macro worlds, past and present; this... well, this is something I will gladly experience. I have always wanted to live the most out of life, to gather the most experiences as I could in my short time on this planet. This is extraordinary - I've felt more normal than I have for most of my life. Even in the pregnancy-related oddities were still wondrous in their normality to experience. On to this new and grand adventure! 

Regarding work, and the greener grass...

Sometimes, people make thoughtless comments which affect me somewhat unexpectedly. I'm pretty thick-skinned now, so i'm not running off and crying about it. While i know there's no malice in these people's intent, i find myself going over these statements in my head. Pain has been playing havoc with my sleep lately; so going over shit in my head while i'm trying not to give attention to Pain isn't really helping me sleep. 

I've been feeling very strong in who I am. I've found my voice again, reaffirmed my power. I accept my disability more than I ever did before: it's not that I like being disabled, but what's the point of wishing for something that won't ever be possible? I made friends with Pain, Disability is just another member of this odd social group of mine. Pain is the whining, whinging, screeching complainer of the group that never shuts the hell up; Disability is the pain in the arse who always needs accommodating. It is like the one who can't just order something off a menu, but insists on ingredients being omitted, others being added; food prepared in a certain and annoyingly exact way and sent back if it's not. Disability is the Sheldon of my group! I hate being that one, I hate drawing this type of attention. The only attention I want is for that which I worked hard, or for the fun and lighthearted things in life. I wish my disability was my secret: invisible, hidden - my own business, not for others to see. Because it is not, all I can do is shield myself behind brashness and laughs; deflecting my own deep shame and embarrassment, as well as unknowingly offensive comments from well-meaning people.

Anniversaries and celebrating how far you've come!

 I always acknowledge my anniversary of my accident, celebrate it even. I know this is hard for some to understand, but i think everyone should have at least one day a year where they look at where they are: where they came from and where they want to be. New Year also works well, birthdays have their own issues! This is how i keep focussed in what i want out of a life i just happen to share with Pain. I was a little overwhelmed by the response from my friends and family - people who have travelled at least some of the journey with me. Some of those people didn't know, which is a good thing. It means that i am living a life worth living. That i am not just KJane in Pane; disabled KJane; helpless, suffering, tortured KJane in Pain. I am KJane the dancer, the artist, the traveller! LIVING... An annoying Pain patient who exceeds expectations; who is extremely hard on herself, suffers no fools, no matter where, or who, they are! I like who i have become, with all my eccentricities and faults. I trust in my own emotional strength to overcome adversity. Everything has a solution if you work hard and think outside the box. This hard perfectionist has learned to embrace imperfection! 

Updates and excuses PART III: The Name Game...

The name of Pain may be CRPS, but it doesn't automatically mean that any and all other unexplained pain would always be CRPS too. Logically, we could reason it as follows:

a) CRPS can spread beyond the original site in some people; (true)
b) I have CRPS in my arm and new Pain in my legs - my Pain has spread beyond the original site;
 THEREFORE - These new Pain symptoms in my legs must be CRPS (logically true but it is based on the assumption that there are no other causes to Pain)

It is an easy assumption to make, but to rely on this assumption would be dangerous without evidence. What if there was a life-threatening problem that ends up ignored because it mimics symptoms of a condition you have already? You can see the danger. It's such an easy one that even I made it. Granted, it felt very similar. This new Pain was largely untouched by pain medication. I slept without covers on my legs because it was too painful, and showers were becoming more uncomfortable - and dangerous until I got a shower stool. I started wearing lots of skirts and stockings instead of my usual jeans, and was thankful that it was coming into summertime. I wished I could go barefoot in public without fear of stepping in glass, dog shit or being impaled through the foot with a stiletto! Being touched was enough to send me through the roof, and my usually sparsely-haired legs took on a more hirsute hippie vibe. This was rather annoying, especially with the very pale skin tone (I never had much colour variation, not being fully caucasian I don't even turn a proper red when sunburnt), it stood out even more. I couldn't do a sugar wax or even run a razor over my hypersensitive skin. Yes, Pain and disability, and yet we still have time to be vain! Actually, it's not all about vanity. I discovered with my arms years ago the exact reason we as a species used to be more hairy - because each one of those hairs can pick up and read sensation from our environment. Each hair follicle could pick up minute changes in the same way as cats' whiskers, or the way insects detect movement close by. For me, each one of those hairs were made of tiny fire ants, biting the living blazes out of my legs while they were crushing them to a pulp from every dimensions!

It sure felt like CRPS!

Updates and excuses PART I: THE SHAME GAME

And yes... the shame of making this post some 2 1/2 years after the last, my biggest shame of all!!!

It's strange how fast time passes, especially after you hit 25! Pain and I have been together for 13 years now, though it feels like yesterday I was celebrating 10 years. A theme of this piece is relationships that come and go. Strangely, of all my relationships and friendships over the years, I have probably had a relationship with Pain longer than I have known many of the people I know now - Pain and I seem married for life now. Brings a whole new meaning to being shackled to the ball and chain...

 These past few years have been some of the biggest challenges I've faced so far. Perhaps not as difficult as the early years of CRPS, when I didn't really know anything, nor had any experience to draw upon. What I had hoped simply never would happen, has now happened and has become the biggest challenge to my own sense of self. Losing the battle with CRPS. It has spread to my legs now. And I have felt like a huge failure at times, for letting it take over so much of my body!

As someone who values independence in the same way as I value necessities such as water and food; I've needed to adjust what I define as “independence” in order to continue being, well... me. In the early years of having it in my arms, no matter how horrible it was, I still could run away. Maybe not from the pain, but in the physical sense of moving my legs in order to get me somewhere away from wherever I was standing. Now I have CRPS in all four limbs; though it presents more severely in the right side, I seem to have run out of spares!