As some of you may already be aware of from my other social media channels, we are delighted to announce that we are expecting our second child this summer. I had many concerns at the start of my pregnancy due to my previous poor experience in having my health insufficiently managed whilst I was pregnant with my son. This naturally left me with many worries as it was not an experience that I wish to repeat. My current GP is incredibly supportive and refreshingly up-to-date with his knowledge on my mix of conditions which has meant that so far *touch wood* although the pregnancy is complicated it has gone much smoother than we had expected.
I decided to take a few steps back from my blog in the beginning months. My health was really not great and whilst normally I would process how this was impacting me by writing about my experience here I didn’t want to blog about the pregnancy until we were past the halfway point; nor did I want to write half stories. Over the next few weeks, I’ll be posting blogs reflecting on the different things I experienced in this time. I’ll be touching on being your own advocate to doctors, the emotional trauma/impact of going through surgery without anesthesia or pain relief, and acceptance when doctors tell you your the worse case they’ve seen but there’s nothing more they can do for you. The last few months have been easier than my first pregnancy yet extremely hard in their own way.
I’m currently awaiting the results of further testing as once again my cardiac problems have reared their ugly head. I spend most days with a resting heart rate of 130+. It’s uncomfortable, to put it mildly. We recently discovered that the type of EDS I was originally diagnosed with was incorrect and that I actually have Classical Ehlers-Danlos Syndrome which may explain my current cardiac complications. I have a few more tests to go before we know more.
This has been a very quick overview of the last few months which I apologize for, but there’s a whole series of posts coming soon.
Last Tuesday marked the 6 year anniversary since Dystonia made a joint shattering (literally) entrance into my life. Previously I’ve marked this day by reflecting on where my life is in comparison to where I had planned it to be; not a great way to spend it and usually resulted in a lot of tears. This year was remarkably different, for the first time in six years I didn’t spend the day in tears and focused on how truly blessed I am.
The reality of my conditions means that as I age my body gets deteriorates a lot faster than a healthy person would. I already need a double knee replacement but have agreed with the surgeons to delay this until my son is in school full time. I’m told its inevitable that I will end up reliant on power chair in the future. The time frame for this is unknown, so I’m focusing on doing what I can to strengthen my body against the battering it takes from the too frequent dislocations and spasms. I’m starting by shifting the weight, it’s slow progress but I am making progress. I’ve found some local HIIT classes for mums and babies that are happy for me to do what I can whilst my son plays beside me. A month ago I signed up to the body coaches 90 day plan, which unfortunately I’m only just starting as I dislocated both my knee and shoulder and needed to let my body recover. His workouts are harder than my body can cope with right now but I’m adapting them and feeling great.
6 years ago if you had told me that I would be OK with living with a mile long list of debilitating conditions I would most likely have bit your ear off. Now I can see how my experiences are shaping me, I’ve learnt to grasp every opportunity with open hands and jump feet first. Whilst the idea of a further 6 years living in this pain is not one that I can even start to wrap my head around. I know that I have the strength to battle it and succeed.
At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.
Happy in our new home
Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.
I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.