I have been feeling very ill these last few weeks, more than normal, I was scared that the ‘honeymoon’ period was over early (anecdotal feedback is a good or honeymoon period of 5 years post diagnosis before things really start to change) …. Then after 3 exhausting and long weeks I began to feel better, but why? What had happened/changed? ….. well let me tell you.
Let me start from the point I took the plunge and agreed to try yet another agonist (if you have read my previous blog posts you will know I don’t get on with these drugs very well!) ….. I started using a Neupro patch which I had to stick on each evening, just on an introductory dose of 2mg with the idea to increase to 4mg after a couple of weeks.
Well the first 10 days were not much fun. I felt awful, increased severity of symptoms – rigidity (didn’t think that was possible), aches and pains, musculoskeletal tension and pain, headaches, jaw pain, increased fatigue/lethargy and generally feeling unwell.
I then started to feel better for the following 2 weeks, even considering increasing the dosage to 4mg as I wasn’t quite sure if they were helping or not but as the side effects had subsided I figured it was worth a try.
HOWEVER, I suddenly began to feel unwell again, a lot of the above symptoms along with feeling spaced out/brain fog, literally dragging myself through each day, doing the bare minimum to survive and ensure my family were taken care of. Even though I ended up chucking a bunch of food out that I hadn’t been well enough to manage cooking (I hate wasting food!) – I get days like these all the time but not for this length of time or this many consecutive days/weeks, so I was worried!
Was it the patch? …. I decided to stop using them for a few days to see if that made a difference, I did feel a bit better for a day or 2 but then went downhill again! …. after a week I started putting them on again ….did I feel better or not? I didn’t feel worse, so?? ….. I was confused!
In particular last week was the peak, I was sleeping A LOT, for instance I volunteer at my son’s nursery on a Wednesday morning and granted it normally tires me out and I have to take it easy in the afternoon. But last week I finished, taking my son home with me, we popped in to see the in-laws, I ended up staying all afternoon, lay on their sofa feeling terrible, in and out of sleep until my older son finished school!
I was invited to a neighbour and friend’s birthday party last Saturday night, I had been really looking forward to it, I felt dreadful but being stubborn and determined to try and carry on I went. Only I ended up leaving after just an hour and a half as I was in pain, exhausted and feeling ill.
WHAT WAS HAPPENING??
Skip to yesterday (Tuesday) morning and today, I felt great in comparison to how I had been…..now I was confused!
So, I started to think about what had changed, happened or I had done differently over the last 3 weeks and why I had suddenly started to feel better.
I can now pinpoint exactly when I started to feel worse was the day I had started the process to remortgage and consolidate another debt in the hope to ease the financial burden. As the next 3 weeks unfolded we were back and forth with more information being requested and our advisor having to fight our case. Last week the Thursday before Saturdays party I sent over the final piece of information and had to sit back and hope the universe would make it happen for us.
Monday afternoon I received the good news it had been accepted, what a relief.
So why had I been so poorly and then suddenly started to feel better? …… STRESS!!
Yep stress and worry of a remortgage application had sent me into a spiral of worsening parky symptoms!! I knew I didn’t handle stress very well these days and had been told by my medical team to avoid stress as much as possible, but I hadn’t fully appreciated how severe an impact it could have.
I am feeling much better but still not quite were I was before, and I am not even sure I will fully recover.
Think I am being dramatic?
“Research suggests that stressful life events may increase the risk of Parkinson’s disease. In addition, animal studies indicate that stress damages dopamine cells, resulting in more severe parkinsonian symptoms. In humans, acute stress can worsen symptoms….”
So in summary I need a long exotic holiday, purely for medicinal purposes of course!
“Don’t forget to drink water and get some sun. You’re basically a houseplant with more complicated emotions.”
Take care and look after yourself – you matter x