Insane in the brain

So the last week has been a mix of drug infused, home wod-ing, Corona mayhem. 

Following the initial appointment with Dr Furby in Southampton, I pretty promptly received a letter inviting me back to Southampton for my first Tysabri infusion. We were pretty ecstatic as it had never been 100 percent confirmed that I was going to get approved for the drug and was yet again a bit more of a waiting game. So to get the letter and appointment relatively quickly after the meeting having waited for what seems like (and actually is) months for anything or anybody to talk to me at all, was amazing especially during the current Covid situation and the pressure that the NHS are under. 

I was pretty anxious leading up to it, I guess not knowing what to expect or indeed how my body might react to it. I hadn’t been sleeping well again, but in reflection my subconscious was probably in fear and as Lyn, CBT says, your brain can put your worries to the back all day and then in the middle of the night if you haven’t dealt with it - BOOM!

An early start to Southampton last Wednesday, having been told not to have any caffeine or alcohol for 48 hours (decaf is not the same especially for our 7.45am WODs, although I will admit I did sleep a bit better!) 

Chief driver Neilly took me down, and unfortunately had to wait in the car the whole time due to Covid restrictions. The nurse did reassure me this wasn’t normal practice and he will “hopefully” be allowed in by my August appointment :( 

All being well I have one infusion a month, basically until further notice. 

On arrival at the hospital I had to quickly check in, go back to to wait in the car until I was collected, my temperature taken and then approved to enter the building! 

The infusion takes around 3 hours, on my first one I had a blood test which they are checking for the JC virus (something that lays dormant in us all), there is a chance if it is particularly active within you and you take Tysabri, it increases the risk of what’s known as PML (Progressive Multifocal Leukoncepalopathy) an uncommon brain infection, which I have been told in no uncertain terms, that I definitely don’t want to get - you can fall ill and possibly die - but not one to think about at the moment! The sample now has got sent to the lab in Denmark (so Nurse Carrie said, she added we’re not allowed to travel but my blood is!)

I’m OK with needles (I’ve got a great vein don’t you know), so that part didn’t really bother me, it was more the drug and what the hell is going on and in in there! 

This whole diagnosis has really got me thinking about how amazing our bodies are really, for the most part everything just does its thing in there without us really having a choice or even noticing. Then there are some things, that get confused, like my immune system. It thinks something is wrong in the rest of my body, so without my permission or even advising me in some way before the relapses, it attacks perfectly good cells in my central nervous system, thinking they need some help and that something is wrong, when really they are totally fine, and they just need to be left alone. By doing what they are doing they are causing internal scar tissue and nerve damage disrupting my body’s ability to send signals from one part of the central nerve system to another. The symptoms noticeably appear to worsen when tiredness strikes me (hence noticing initially after marathons etc) and then gradually over time get more regular and more severe. And going back to me having both relapsing and primary progressive, symptoms have both inadvertently progressed and relapsed!

I mean that’s about as far as my understanding of the whole disease goes, but Tysabri, the drug that has been swimming about my insides now for a few days, looks to create a barrier to stop the immune cells so they don’t escape and pass blood into the central immune system, where they can  attack and damage the perfectly fine ones. It sounds a bit like contraception when I think of it like that, and I mean I’m sure that’s not all it does or indeed not sure that I’m completely right, but I’ll keep it simple for my sake more than anyone else’s!

But, did you know your body did all that and more? Clever huh! Who cares about mastermind - our body’s whatever they are doing or not doing - win!

I thought I had got away with feeling not too bad after the whole first ‘experience’ of Tysabri until later on the next day afternoon, when I started to feel shaky, sick, shattered, and generally like I had done a shed load of drugs and was on the biggest come-down of my life. Not pleasant, but luckily has now eased and just left with a rash on my chin (which I read was a common side effect) and my normal MS symptoms!

On Friday I had a call from my local MS Nurse, Margaret, someone I didn’t know I had access to, so finally things appear to be progressing somewhat, what it all means for the future, who knows but at least I have someone to talk to. She is following up on a few other drugs and vitamins needed (sigh). She told me, I need to always ‘give in’ to fatigue and rest be it for 5 minutes or 2 hours and that it can’t be mistaken for a ‘normal person’s’ tiredness! She said I need to finish a workout 10 mins before I feel my legs going, something that I’m sure is going to need some practise and discipline with, but she assured me it will help massively. 

On the isolation and Covid front, Neil and I continue to lay low in Sherfield Park. Daily walks around in the woods and in amongst the beautiful bluebells which has been lovely. I’m doing nightly meditation, we’re drinking too much wine (isn’t everyone?!), morning WODing with my lovelies, Sarah, Flo, Claire and Zoe, which keeps the routine in check and gives us somewhat a sense of normality, despite the lack of Starbucks! Missing some real human contact other than just getting out the way of people on our walk BUT...... bringing some light into a somewhat darker world at the moment, we have a new arrival in the form of a Cockerpoo - Ralph! Currently 6 weeks old, we pick him up in 2 weeks and I’m sure will be a bundle of mischief. The cat, Fizz is going to despair, but he willllllll grow to love him! Teeing Fizz up already with laid out bits of puppy kit around the house and mass catnip!

Mentally I have been a bit better, more positive I think, whether that’s some acceptance, the fact that friends and family have more time to video chat at the moment or just that the anti depressants kicking in I couldn’t be sure, but will take it along with everyone else’s time! I worry that when things go back to ‘normal’ things will start to hurt again, but as I’m hearing a lot, we/I can only take one day at a time. 

Lovings

Han xx