When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.
I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.
It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.
I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.
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.
Since my latest flare up began I’ve been taking extra care to make sure I acknowledge my accomplishments no matter how small each day and attempting to redefine my pacing parameters. This is a key tool for me to keep in mind at all time. Mainly as it enures I acknowledge my further limitations during a flare up and act accordingly, but also as it keeps me focused on the positives and prevents me getting tuck in a emotional rut which often occurs in flare ups.
I had a wonderful opportunity as part of my publishing internship yesterday to direct and film an interview with an author signed to the publishing house. It was a fantastic experience that I thoroughly enjoyed. However like all things it required spoons, and far more than I had anticipated. Despite my lack of spoon saving preparation I got through the day relatively intact and the repercussions didn’t kick in until today.
This is where I feel like I’ve made leaps and bounds in handling life with chronic illnesses. I didn’t attempt to struggle through the pain today, or go to the other extreme and do nothing (although sometimes this is needed); instead I decided we would go about our day as planned but I would use my wheelchair the whole time, with baby snug in his sling against me, and Dame pushing me rather than me risking dislocating a joint or three by self propelling.
We only nipped out for a short while as avoiding over stimulation is key on days when I feel my health is on a downward kilter. So a relaxing jaunt to the local coffee house and then onto Waitrose was our plan. I was quite overjoyed to find a wheelchair friendly trolley. A rare treat, that has quiet made my day.
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