Potatoes, Chickens and Half-naked Royalty

Helloooooo summer weather! 

Wow, what a difference it has made to have had some decent weather. I am VERY much in full Tom and Barbara mode (of The Good Life fame, hence the blog title). 
The potatoes are merrily growing away, the greenhouse looks like day of the triffids after being packed full of tomato seedlings and the onions are now free from their "cat-proof netting" after Callie dug the first lot up. Pesky cat. 
As ever, I have not been the most sensible gardener and I have refused to throw any of the seedlings that have sprouted, none of this thin out the weak ones, nope. I know that this doesn't make economical sense (and the 250L of compost that I bought last weekend and got through rather quickly seems to back this up) but I don't like to kill anything off intentionally - it's made the effort to grow after all! I may regret this when I have eleventybillion things in pots to water in the summer and the veg patch looks like a forest.

Second step into the world of Tom and Barbara is one that I wasn't quite expecting. Jonny has recently decided that he wants to keep some chickens in the back garden and is planning on building a coop. I'm not totally sure how I feel about this, mainly because a) we have a cat with a penchant for anything that has wings and b) because I'm not sure I want to share my veg patch, which will inevitably get munched on. If the buggers eat my potatoes then they are going straight into the pot with any remaining veg! I will concede that the lure of fresh eggs from the chickens is great, but the cleaning out of the coop is less favourable. Although I am relieved to think that next February it'll be round 2 of Lemtrada and therefore I get 3 months off cat litter tray duty and potential chicken coop cleaning duty due to the bacteria risk and zero lymphocytes. Oh what a hardship!! I've got to have some perks though right?!

I'm off to see my MS nurse tomorrow, I have no idea which one it is, but both Chris and Pete are lovely and very knowledgeable; it's more like going to see a friend than a nurse. It will be nice to report that so far, everything is going pretty well. I've just started exercising again, I'm back to full working capacity including Woodwind repairs and I'm generally feeling positive. I think energy levels have fluctuated a bit more recently so I'm going to ask about supplements and diet etc. but it does seem to be a bit hit and miss as to what works. Also no one can agree on what the correct dosage of vitamin D3 is, not even the neurologists which is a little unhelpful. 

My current supplements are:
Vitamin D3 3000iu
Biotin 1000iu
Evening Primrose oil 1000iu

I'm not totally convinced that anything is doing much at the moment, but I did feel a big difference when I first started taking them so I either need to up the dosages or sort my gut out. A friend of mine suspects that I may have a leaky gut so has suggested cutting out sugar and yeast to help improve absorption. I crave sugar more now than ever before so I'm reluctant to do this but suspect it's probably worth a try. I think the shock of cutting out alcohol may genuinely turn me into a psycho though. I'm fairly sure I'll set out with good intentions at the beginning of the week, get to Tuesday (where I'm tortured by teaching 4 hours of Y8 and Y9) and end up seeing off a bottle of White Zinfandel whilst binge watching Suits on Netflix. Speaking of which, I can't quite get over the fact that Meghan Markle is frequently seen in a variety of compromising positions - argh! Half naked, nearly royalty! Nooo my eyes!

I will not be watching the Royal wedding this weekend as I have been given permission to attend the D of E practice expedition run by school. Hurrah! This is big news as at the present time of writing, I've been pretty much banned from anything related to extra-curricular activities because I'm "not well enough". In fact, I'm fairly sure I'm probably not meant to be on this trip either BUT as you might gather from my tone, I'm not impressed about being told what I can and can't do and as my return to work notes only specified music related extra-curricular activities... I'm going to misbehave and deal with the consequences later.

More on being told "no, you're too ill" by a variety of people and encouraged to fight back by my fantastically supportive occupational health therapist in the next post...

Over and out

C x

Retraining my B and T cells

My second lot of blood test results are in and things are looking good. My lymphocyte levels were at 0.04 for the first month and have only increased to 0.3 this month. 

My understanding of this so far is that this is good although as I will explain in this post, in the UK it's harder for us to tell compared to our US comrades.

To explain, Lymphocytes are a type of white blood cells. They are part of the full blood count (FBC) that will show up on your blood tests, normal lymphocyte levels are between 1.0-4.0. 

The tricky bit to explain is that there are different types of lymphocyte called T and B cells and then within this there are different types of T cells all of which have different jobs! If you're really interested in the science behind it then the following YouTube video explains T and B cells very clearly from about 4 minutes in. 

I found this video through a post by another Lemtrada blogger called Tracey 

In a nutshell, I translate that to mean that the slower the B and T cells repopulate, the less damage being done! 

The drug company website for Lemtrada/Alemtuzumab has a very whizzy graph to show what the suggested rate of lymphocyte repopulation is. However this is where things get complicated as in the UK we only show the general Lymphocyte count, in the US they split it into the specific types of B and T cells (CD4+, CD8+/CD19+) on their blood test results so it's far easier to track your recovery: 

So essentially, this graph just frustrates me as I don't know the individual levels for my Lymphocytes! GRR. For me, knowledge is power. Yes I'd probably fret over my levels on a monthly basis (and I have another 5 years of monthly blood tests to endure, I can just hear my veins crying!) but at the same time, I LIKE knowing what is going on. One of the most interesting things for me so far has been seeing my MRI scan pictures and understanding exactly what is going on in my brain and my spine. I find it fascinating! 

Based on the general Lemtrada patient population in the UK, it seems to me that aiming to stay under 1.0 for at least the first 6 months is a good thing and I've seen lots of Lem patients who only reach normal levels of 1.0 by their 11th/12th months of treatment. On the  other hand, (tricky balancing act that this Lymphocyte malarky is!) there are also reports of Lemtrada patients having their second round of treatment postponed because their lymphocyte levels were too low after a year, several of these patients had peaked at 0.6 and were denied treatment until their levels rose. So here's hoping my lymphocytes continue to do what they are supposed to for the next 12 months!

C x