I guess that’s why they call it the (London Marathon) blues

It’s the night before what would have been the 2020 London Marathon. 

Actually I hadn’t planned to do it this year, instead was supporting my sister on her second marathon journey (rather than the other way round for a change!).

That being said, that ‘night before’ feeling is not unusual to me, and actually feels like somewhat of a norm. I have run London 9 times (or is it 10, I can’t remember) and is a marathon very close to my heart. Many an evening before, I have written something on social, be it as a tragic case of the last minute inability to run or as a comeback ‘fuck ya’ following surgery, or just as an opportunity to raise some money for a charity or to push for a PB. 

This year is off the scale mad, the Covid pandemic has put paid to everything for everyone. 

It’s that time of year I have Facebook memories pop up constantly of marathons past, each one with its own story. The most recent one I did 2 years ago. We think that’s maybe where the MS (unbeknown to us then of course) jelly legs really took off! It was the hottest on record, I remember struggling like no other and pretty much having to crawl to the end, and as a result and much to my massive annoyance didn’t get within the Good For Age bracket for the first time in quite a few years. 

Good For Age, for those that aren’t marathon au fait, is a bracket of allowed finish time for certain ages that means you can get a guaranteed place for a marathon such as London. It is notoriously hard to get in via the ballot, unless your Sarah Allcock who with a chance of 25 to 1, got in 2 years running - something a lot of runners would be extremely jealous of! Anyway you need to prove you have done a marathon in this specific time to get your guaranteed place. Something I managed to blag probably for the 8 or 9 times!

Even though my legs struggled to go forward towards the end of that marathon, rather than MS in the equation, we put it down to the extremely hot conditions, the fact that most others were way off their predicted times, and that I recovered reasonably fast again. In fact, I can’t be sure I even spoke about it massively to anyone.

Anyway, not here to talk MS really, I am talking about the lack of marathons tomorrow and to plea we get together and try and help the hundreds of charities that are losing out from the events that are currently not talking place, and the millions of pounds that they are down from us good people not putting ourselves out there to raise some money. 

TwoPointSixChallenge.co.uk has been started by the London Marathon, pleading with the country to do the 2.6 challenge to help save our UK charities. It can be any activity, from running to swing balling 26 times, just something to fundraise some cash no matter how small. 

Tomorrow, Neil and I, Flo and Michael will be doing a team marathon row in our separate homes. I can’t really run far at the moment, so will join Neil on his rowing adventure, and together we’ll hit 26.2 miles. I’ll be donating some money to the MS Society, feel free to join me or to choose your own. 

It’ll be a sad day tomorrow, not being able to even watch on TV, so please get involved with your own thing and I might even live feed a little bit of ours.

Well done to the ever incredible Ed Jackson, who walked Everest up and down his own staircase, 5566 flights (89,056 individual steps) raising over £41K and counting for Wings for Life (searching for a cure for spinal cord injury) and the Forever Friends Appeal in support of the NHS. And we all know about Captain Tom Moore’s 100th. Birthday walk - almost £29 million as it stands - so many inspiring people.

Tomorrow is 26 April like you’ve never had it before, it’s the ‘same same’ but very different. Do something amazing, even if it’s 26 burpees and a pound donation. 

I’ll be back running the London Marathon one year soon, giving MS the massive finger. In the meantime, we’re still “taking each day as it comes”. 

See you tomorrow fellow everyday warriors. :)

Han xx

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

The drugs don’t work (although they better bloody do!)

Pre-appointment 

I’m in the car on way to hospital, and no I’m not driving, that would certainly be cause for a few of the Vs if as per a previous blog. Neilly and I are on our way, despite having confused Southampton distance for Portsmouth, Great South Run hour journey and mass queues, rather than half an hour to Southampton and quiet roads, so we’re set to be 1.5 hours early (I hate being early!). My fault - I’ll take that - I don’t know why but I’ve very rarely been south on the M3 other than for the GSR, so automatically had that time in my head! 

Anyway we’ll be on time, shame there are no coffee shops open for breakfast!

Sleep

Having said that my sleep was getting better, last night it was dreadful. Gave up at 4.30, got up and had tea and read a mindless novel. The Running Man, Gilbert Tuhabonye, was definitely too hardcore for me this morning, and TBH it is at the best of times, sad and inspiring though!

Post-appointment 

Now home contemplating. 

So, at my initial appointment the neurologist had diagnosed me with Primary Progressive MS, a rarer form with only one drug legalised in the UK last year. However this morning, after a multitude of questions, re examining of the scans and notes and some physical tests, the doctor advised that he would not like to label my MS as just Primary and I had definite signs of Relapsing Remitting MS, a more common type. This is better news, as more research and drugs have been done and available for this form. 

He asked whether I would rather the “harder core” type available? Whether he used that phrase, probably not, but that’s what I remember, and that’s of course what I said I definitely would be interested in. Given the current pandemic there is a ban on certain types, as they massively affect your immune system, which includes the original one we were hoping for Ocrevus https://www.nationalmssociety.org/Treating-MS/Medications/Ocrevus however he did say there was one that I could potentially get authority for, and he thinks he could convince the panel who also need to approve it in the meeting he had this afternoon. 

This one is called Tysabri: 

https://www.nationalmssociety.org/Treating-MS/Medications/Tysabri-®

Tysabri® is a laboratory-produced monoclonal antibody. It is designed to hamper movement of potentially damaging immune cells from the bloodstream, across the “blood-brain barrier” into the brain and spinal cord.

https://www.tysabri.com

I had to sign my life away, and understand the this type of medication can cause PML - a condition which he said “you definitely don’t want to get” no cure and probably death, however will do a couple of tests for certain cells beforehand, which will show my chances of getting - hopefully it’s a 1 in 1500 - which will be a good enough odd for me I think! 

Anyway, I don’t want to think about the negative quite yet, am happy there is a drug I can take that can massively stop progression and hopefully improve symptoms somewhat. He said probably won’t make better than now, but should stop getting worse. It is taken by infusion, once a month back in Southampton Hospital. He advised a nurse should get in touch with me within a couple of weeks, just given current situation bear with. 

So we left quite positive today. 

In regards to visiting the hospital, it wasn’t quite as traumatic as I expected, found a car space easily and the hospital itself seemed relatively quiet. Masks on (and I can’t say I relish the mask wearing experience), a short walk and we were pretty much the only ones in the neurological department, seats all 2 metres apart, but we were in on time and back home by 11am. 

Thanks to my ever supportive husband for taking me and to you all for your well wishes, it’s really appreciated and we will beat this bloody disease. FMS :)

Have a great weekend, don’t go too far, stay safe and do a puzzle!

Han xx

No woman no cry

Thank you to the person that cancelled is all I can say. 

So after consistent calling to Southampton, by some miracle I have a cancellation appointment in the hospital tomorrow with the NHS MS neurologist doctor. That’s two weeks earlier than my original so really happy with that and to finally get the process started. I’ve been increasingly worried about it getting postponed due to the current pandemic, but the doctor phoned me on Wednesday to confirm he would still like to see me and to see in person how the MS has affected me. Of course, it is extremely worrying going into hospital at this time in history, and I won’t be doing it in haste, masks and gloves at the ready and in balance we agree it’s still the right thing to do. Thanks for the offer of the marigold loan everyone!

Our lives have been taken over by Covid-19, a craziness I never thought I’d ever see, and I hope that everyone is coping with their new found home life and surviving as best possible, keeping positive and healthy. 

TBH honest if we didn’t have TheHangar, garage gym the amazing handiwork of Neilly, I’m not sure how I’d be surviving, but as it happens I am OK, anxiety probably doubled on top of MS but I have come to be used to that! Our morning WOD and virtual coffee with the girls, lunchtime WOD with @CrossFitBasingstoke, the afternoon to do bills and sorting and a late afternoon walk with Neilly, followed by the daily Coronavirus update and a vino or two - well it’s getting us through! I’m scaling as much as possible though, given my jelly legs and annoying fatigue. A WOD could mean a yoga session, and I do try to have half an hour meditation lie down in the afternoon with Fizz. Well what I’m trying to say, is that we’re OK, I’m sure following the doctor tomorrow he might have a different way I should progress, but until told otherwise it is OK, we’re surviving, and I’m normally in bed before 9pm with a book! 

Oh and the camper van Lego set has been ordered for a new hobby, if I’m allowed by the husband to have a go!

My sleeping has been up and down, but in a better way for sure, and I seem at the moment to have found a slightly better mix of drugs though, and sticking with them for now. Although, I’m unconvinced by the Melatonin (although a lot better than the last), prescribed for the night, so have decided to take them every other day as a test. Whether that’s ‘the thing’ to do I’m not sure and I’m making the rules up as I go. Oh and update from last time, I can now successfully swallow five pills at the same time - one of my major achievements in life.

I have also bought a pipe and contemplating the medicinal MS solution of a spliff before bed and whether to take up an offer of ‘sorting us out’! Anyway, what do you mean it’s not legal in this country? Well I’ve tried CBD and not sure I’ve seen any results from that.....comments to my insta please! 

Quick one today and will let you know how it goes tomorrow!

Han xx