Happy Birthday Dystonia and Me!
Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources I have come to know and trust.
When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.
Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.
Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.
Here’s to another 5 years.
I’ve been toying with the idea of writing this post for a few weeks. It’s a tad on the personal side, but as I find blogging so therapeutic I figured it may help to write it all down. As you know almost four months ago I gave birth to my handsome smiley boy. It’s been a whirlwind few months since and I love being a mum. However I’ve been experiencing complications ever since and after my last doctor’s appointment I feel a bit shaken up.
With the exception of 5 days (spaced out) I haven’t stopped bleeding since I gave birth. At first I put this down to the fact I obtained a second degree tear during my labour that took a long time to heal. I frequently wonder if its related to my EDS but Mr Google hasn’t shed much light on that. I’ve tried hormone medication designed to prevent the bleeding but other than causing further hellish stomach pains it didn’t make a difference. I’ve now been prescribed a new medication to make me clot more whilst I wait for an urgent appointment with the gyny team.
It’s been decided that I need a procedure to look around and see if there is any obvious issue that hasn’t already been picked up on my scans that have been carried out over the last couple of weeks. My Dr’s advice has been that if the scan doesn’t show anything obvious that can be treated, then she recommends that I have a serious chat with the gyny team on having a hysterectomy. I find it hard to believe that at 24 years of age that a hysterectomy is my only option. In my mind that just isn’t an option and there has to be others.
I struggle with my conditions day to day as it is, throw in recovering from major surgery and the complications that come with that procedure and it doesn’t seem worth it. As you can imagine I’ve been quite wound up about it; I would love to hear from anyone who has had similar postnatal complications, and if you don’t mind sharing I would be curious to hear what treatments you tried.
The issue with being chronically ill is that when a new complication arises it can be hard to know whether it has been caused by a preexisting condition, and if so which one, or if a new condition has popped into the question. Over the last few weeks I’ve had increasing amounts of pain in my knees, calf’s and feet. I tried to brush this off but slowly and surely my feet and legs have started spasming. So now I find myself trying to work out if this is due to a spread of Dystonia or a relapse of Chronic Neurological Lyme Disease.
I had a long chat with my neurologist on Tuesday, he’s of the thought that my Dystonia has progressed as I’m still within the 5 year time frame for a spread of symptoms. Personally I’m hoping it’s Lyme related, as whilst still hard to treat, the possibility of remission again is real.
The idea that it could be Dystonia scares me due to the painful nature of the spasms; but I know I can get through it. I just have to take it one wobbly step at a time. I never thought I’d see the day when I would have to strap my leg splints on again but they’re worth the discomfort.
So here’s to crossing my fingers and seeing where the next 12 weeks takes us, by which point we will have a better idea to the cause and therefore treatment options.
I can’t believe we’ve reached 5 years since my battle with my Dystonia Alien began. I wouldn’t say time has flown by but I have certainly survived far better than I had anticipated at the start. In the beginning I struggled to picture a day ahead yet alone 5 years down the line. I was by no means depressed I just couldn’t imagine living with this condition for any length of time. Each hour was filled with pain, each month was taken up with ambulance after ambulance trip to the local resus department. If you had told me in 2012 that in 5 years time I would be typing this sitting next to my partner in our flat with a new baby I would have scoffed. It didn’t seem like a life I would ever be able to have.
Looking back on the first year of Dystonia I find myself thankful that even though I still have my spasms, my wonderful neurologist has found a combination of injections and medications that work for me. Life is in no way easy, pain is still a rather constant companion, but I have far more control over my limbs than I ever expected to have.
My bad days, pictured above, are thankfully better controlled
I’m happy to say I no longer struggle to imagine the next day or year coming, nor do I dread the coming days anymore. Now I find myself excitedly looking forward and making plans for life post university, writing my next book and jumping without worry at any opportunity presented to me. I acknowledge that I’m always going to have my struggles, but with multiple health conditions that’s to be expected. Despite, and because of my Dystonia, my days are filled with laughter and joy. What more could I want
Thanks to a wide variety of medications
life is generally more controlled!
It’s amazing I don’t rattle, but all these pills keeping me ticking along.
Last December at one of my maternity appointments the doctors sat me down and informed me that they believed that the damage occurring to my body throughout the pregnancy would be permanent and that they did not expect me to recover; any minor improvements they said would take at least a year to occur. I left, slightly terrified and trying to wrap my head around the fact that I had been advised to upgrade my manual wheelchair to an electric one.
10 weeks on from the birth of my son and whilst my body hasn’t completely bounced back to its usual faulty self, I’m doing far better than anyone could have expected. I’m getting out everyday and helping prepare meals, making sure we’ve chosen spoonie friendly meals and we cook in bulk to help make flare up days that bit easier. I’m balancing life as new mum with a home based internship, and couldn’t be happier. Each day I feel like I’m achieving and managing that bit more.
Naturally life never runs smoothly. Three weeks ago I joined Slimming World to help shift some of my pregnancy weight. Being plus size is detrimental to my EDS so I made the decision to make a positive change to help myself. Last night we decided we would treat ourselves to Slimming World Italian Affogato. This involves grating chocolate, something I figured I would be able to do fine. Instead clumsy as every, I grated my finger, in my usual manner I brushed this off, however after waking up to it still bleeding this morning my GP sent me off to the minor injuries unit to have stitches.
It was worth it!
I have never felt so embarrassed by my sheer clumsiness before. After having the stitches put in I fainted and broke the same finger! I don’t think the Dr could quiet believe it. Yet I left the unit with a spring in my step, this incident highlighted to me just how well I’m coping. Since going back on my medications my spasms have reduced and I’m getting out a bit more everyday. So whilst spending the majority of the day in minor injuries isn’t ideal, for the simple fact I got myself there and back with no issue is a huge achievement.
EDS = clumsiness
Today I reluctantly restarted several of my medications. This was quiet an emotional decision to make as for the last almost 7 weeks I had fought to preserve with breastfeeding; despite the hospital wanting to give him formula from the moment he was born. But I can’t deny that there has been a slight increase in my jaw and eye spasms, and it makes sense to hit this on the head now.
We had finally conquered breastfeeding
I know I have done well to get this far, but I still feel rather sad that we are now moving on, especially as over the last two weeks we had really got breastfeeding down to a much calmer event. The down side to having rare conditions is that not everyone who is involved with different aspects of my care has an in-depth understanding of just how my conditions affect me, despite my best efforts to inform them as best as I can. If people don’t want to familiarise themselves with the conditions there is not a lot that can be done about this. This sadly has meant that after a very short, under a minute-long eye spasm which I spoke through, a professional who witnessed the spasm presumed I had had a seizure (but didn’t think to discuss this with me) and contacted another member of my medical team causing a day of unnecessary drama and stress. Whilst this has all been cleared up now, I feel that this has left me with very little choice but to take my medicine again so I can prove I’m doing everything I can to prevent this my spasms.
I had a long chat with my GP yesterday as the whole thing left me feeling rather needlessly judged, after all people with epilepsy have children, as do people who are permentalty blind. Thankfully she is very familiar with all of my conditions, and although she would rather I continued to breastfeed she understood why I felt there was little other choice in the matter.
My botox appointment has come through for august so I’m looking forward to talking through my future treatment plan with my neurologist.