Skip to main content

As The Leaves Turn...

Hi everyone!
It's been a little while so I thought I'd check in and give you an update...from my sickbed. BUT not Lemtrada related, I promise. Actually, I think so far that's actually been going brilliantly. The most noticeable difference would be the change in frequency of experiencing fatigue. I'd say the intensity and how often it happens has really improved (fingers crossed), though as the days grow shorter, I do become sleepier sooner, but that's still pretty good for me so I'll take it.

I've caught a bit of a cold as of late and a tummy bug, but I think that is just what's going round and as I work at a school, it wouldn't be unheard of. Loads of germs flying around will eventually equate to some suffering, but I genuinely wouldn't put that down to Lemtrada. What I will say is that with a rising temperature or a really rough episode during catching a bug, I have felt incredibly weak and like I have been on the brink of relapse. So far, this has gone almost as quickly as it appeared but my goodness has it felt scary. My initial relapse symptoms were visual and made it incredibly hard to process movement alongside other stimuli. Sometimes, that's occurred with a sniffle or when I'm worn out, but over the weekend I really did think I'd be heading back down that slippery slope.

The funny thing is, I've spent two years now processing all of this so that in the event of an inevitable relapse one day, it wouldn't emotionally hit me so hard and I'd, to some extent, be able to control my cognitive processes in order to talk myself down and recover more quickly. I found myself getting incredibly upset (bearing in mind that I haven't actually relapsed, just having funny turns with my vision) and getting caught up in the negative self-talk that can drag down the best of us. What that made me realise was that this isn't just about learning CBT techniques and mindfulness and getting handy with it, it's about self-compassion. I've said it to myself time and time again to get in top of it, but I shouldn't be beating myself up to be kinder to myself. Contradictory statement or what?!


I am ever a work in progress and, all things considered, things are going pretty well right now. My lymphocytes are low but are steadily climbing, which is where they should be at right now. I'm good with my food so that helps. I've been keeping up with yoga which has been a total godsend (don't knock it 'til you try it) and it has really helped with pain management and soothing my nervous system. Thanks to God, I think I'm doing just fine and hopefully once I see this bug through, I'll be back to my normal self.



 A little photo of the ginger tea I've been sipping to get me back on track. Check out my daily mindfulness page on instagram @trail.of.light





Comments

Post a Comment

Popular posts from this blog

3 Years

When I got the letter through the door, it struck me how once this very small intrusion would have made my heart stop. I would probably feel sick, be filled with trepidation and probably just let my mum open it. Then that would cushion the blow. Nearly 7 years post-diagnosis, I'm a little calmer about those formal envelopes that follow me into my home a few times a year, taking the approach that there's nothing to deal with until the letter is completely read. On the letter; after another annual MRI, 3 years after my infusion treatment (Lemtrada), there's been no worsening in my lesions and no new ones. And I just thank God. The optimist in me wants to jump up and down, and bounce off the ceiling cheering. The realist in me tells me this was really lucky and it's a miracle and this will change one day, that this is temporary. I'm working to sit somewhere between these two voices; being grateful and working to keep myself well. Stress levels are the main reason I was...
4 comments
Read more

Under the Knife

Hello! How  I’ve  missed writing and how crazy this last month has been. So much has been happening globally, as well as personally.  I’m  not going to go there with the politics but all I’ll say is love and peace to all. On a personal level,  I’d  say it’s been a lot of juggling and coasting but hopefully things will calm down soon (well, because they are going to have to). Where to start…firstly,  I’ve  spent time with my friends prepping for our other friend’s wedding. She may be on her honeymoon/just got back home as she reads this, and if  that’s the case, a big HELLO to you and I hope you had the best time ever. This was a lot of fun and loads of time and effort went into making the day  absolutely spectacular . I think I speak for us all when I say, well done team and it was all worth it. From there, it has pushed me into my own wedding planning  and that has been  hectic, though I think  I’ m  doing wel...
Post a Comment
Read more

Update

Here's a little update on how things are going and overall I'd say they are going a lot better than I anticipated. I woke up after the operation on Friday feeling pretty positive; the consultant had found what needed removing pretty quickly and didn't need to open up the left side of my throat to go hunting any further for another parathyroid gland. I was out, operated on and awake again within 90 minutes. The anesthetic was a total Godsend and I didn't realise quite how much pain it was keeping at bay until last night. I'd say that was a bit of a shock to the system and along with incredibly persistent nausea and drowsiness, yesterday and last night were very rough for me. I'm trying to keep optimistic and busy (when I'm not falling asleep into my cups of tea). So far, the relapse symptoms have left me alone! There was a little tingling in my hands after taking some Oramorph (that wasn't as much fun as I had anticipated) but other than that, nothing ...
Post a Comment
Read more