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

I can’t get no sleep... (as Faithless once said)

Anxiety levels are at an all time high at the moment in the world as Covid-19 takes over our lives, and that’s without MS to add to the equation. But, with all this going on, a totally surreal and sickening situation, it has almost made me feel like everyone is going through an unknown territory along with me and it’s dare I say, good to be in the midst of something that we are all going through together at the same time, it felt quite lonely for a while and I can’t believe this has happened in parallel.

Whether it’s added to the mass stress I already have (and in no way am I belittling this situation or taking anything for granted about the seriousness and the horrific consequences we are seeing very close to home), I couldn’t be sure, but in a weird way and somewhat selfishly, work, Neil being at home and everyone feeling on edge, is kind of how I’ve felt since I’ve found out and now it feels a bit like we’re all in it together as a team, and it’s actually bringing people together more and more. Many people have reached out to me and for that I thank you.

Unfortunately at the time of writing this, what I do know, is that I haven’t been able to sleep properly and that in turn has made every health issue seem a million times worse.

I have swapped and changed drugs what seems a million times already, one seems to counteract the other, and these are not even the actual MS drugs, these are for symptoms around MS, whether it’s the jaw, the eye, the sleep, the anxiety, the bladder, the bowels. They (the drugs) apparently are all essential and I must find the concoction that works! I have been getting so confused and forgetful, trying to remember even a few seconds after what I have taken (yep the mind has still gone atm and sure i have accidentally taken 2 of the same on at least one occasion), Neil has bought me one of those weekly plastic tub things, split up by day and time. Joy, this is what it has come to, although I prepared and chopped all yesterday, and has been a delight today - I’m just wondering whether I can ‘swallow’ perhaps 5 at the same time just for fun  (I do like to be efficient) or whether that is ill advised. Well was thinking they are all going to get mixed up once in anyway, but perhaps I should wait and ask the nurse that in due course...

Going back to ‘Anything mentionable is manageable’ that is how I’ve felt again, chronically fatigued, and unable to sleep despite myself. 

Today is the first day I’ve felt like I can bring pen to paper, “despite CrossFitting in the morning?” i hear you all scream, BUT that kind of feels like something I don’t need to think about it, whether that has been making me worse in the afternoon physically, I am declining to think about, I am sure CBT, Lyn will tell me off, Sorry! I just know mentally it makes me more stable, being able to do it and a sense of being ‘normal’ is massively what I need at the moment.

Day 1 Lockdown - 24 March 2020

Fast forward a few days from when I wrote the above we are now in shut down following Borris’s announcement last night. I actually haven’t left Sherfield Park since last Thursday or left home apart from thehangar or the local Nisa.

We take things for granted, the shops being open, the pub there for you when you fancy a glass of wine or a pint, the bin men coming, nail salons, hairdressers, everything, society just works. Now what happens? Everyone goes into panic mode, our grey roots appear (even when the hairdresser is your best friend they can’t sort out the horror via FaceTime and TBH the consequence would cause us both too many nightmares I agree Sarah!) , nails get grubby (god forbid we have to do them ourselves), Tesco is emptied of essentials by 8am with everyone fighting for the last toilet roll. Last week pre apocalypse was actually told by the shop assistant I was only allowed one pack however many was in it (we genuinely needed some, I had 2x4 as that was all that was on the shelf) luckily she then nicely found me a pack of 8 - taking away from me both 4s - that she had confiscated before me!

Now, having changed drugs and the time of day taking them yet another time, and having taken Neil’s US melatonin he brought back from the last work trip, I have managed to sleep (you guys are lucky!). Although am in slight panic mode as I write as have now taken them all, and the ‘good stuff’ is not available here, so am now awaiting (it’s a 5 day wait, I’m on day 3) the doctor’s prescription to be ready at Boots for collection (if I’m allowed)! We can talk medicinal weed next time..... 

Anyway...

@EdJackson8 reached out to me last week, an inspiration to all, a former pro rugby player, who had a horrific accident leaving him quadriplegic. Ever since he has been proving everyone wrong and literally been ‘climbing mountains’ mentally and physically. His words to me were “Life has a funny way of testing us, but overcoming these challenges that makes us who we are” I think that is relevant to all of us at the moment, we need to find ways to cope in a new situation, it’s not forever. We need to be kind, to think about our peers and find new ways to entertain ourselves. Staying at home at the moment, WILL save lives, not ours perhaps, but the more vulnerable, the weak and we need to think about our savours in the NHS. We are lucky to have this in the UK, we can’t take anything for granted. 

My dad’s locked up in Italy, singing on the balcony in a Prosecco fuelled Casperia, my mum in Pembrokeshire, an equally beautiful Wales but both on their own and love to you both and see you very soon. 

Here in Amazingstoke @all.sarah29, @boylaaaa @zoec196, @flobroughton and I have a great 7.45am online WOD gang going on, a Zoom sesh of either #NC60 or #CrossFitBasingstoke me @ thehangar, Flo in her fab garage gym, the others in garden enjoying the sun or lounges keeping the neighbours happy - it keeps our daily morning sessions and coffees going, without the expense of Starbucks! Also, I am attending the brilliant @CrossFitBasingstoke online training at lunch, I love it and it’s great to keep up with the gang, as well as saving on the petrol!

If anyone is feeling isolated, sad or just needs some fun, we all do, please reach out we are lucky enough to have the internet - imagine if we didn’t! This is a time to come together and what better way to do it than over a few burpees - you love it you know it Neilly!

Love to you all - stay home - sort out the drawers!

Han x

Anything mentionable is manageable....

Following the doctor last Friday and the sick note reluctantly delivered to work, I started on some more medication, basically an anti-depressant called Sertraline to add to the cocktail, this was to replace the Amitrptyline I was already on for my painful jaw, stress induced. That weekend, I started feeling queasy and sick and by the Monday was really feeling dreadful and had been unable to sleep properly all weekend. I had had a hectic one with the family and too much wine, so thought it was probably self induced, however my head was definitely on a different planet on my drive home from the gym still by Monday morning so booked an appointment  to speak to the online doctor (luckily i can speak to someone from Bupa quite quickly online and not the 10 day NHS wait). They confirmed it was OK to stop with the Sertraline, restart with the Amitriptyline as had not been that long. They also let me know that some people do have a bad reaction, and probably considering the other MS drugs I had recently started it was unsurprising. In hindsight it probably wasn’t a good idea to start pill popping everything that weekend like I was back in 1999, not thinking, and expect no consequence as well - oh the memories!

That drive back from the gym on Monday reminds me of the ‘double v’ I got en route from a driving instructor too in Chineham Business Park, I mean regardless of whether I deserved it, is that the right road rage message to give to your pupil whilst your teaching too?!

Anyway back to the drugs, I was in turmoil as originally was on this Amitriptyline for my aching jaw, I didn’t realise until starting the new one last week and properly researching the side effects of each, that that drug was making me constipated (I had been for months) but the new one was now making me an insomniac, I decided (with a little help from my friends) I choose sleep (over poo)! 

Honestly I can’t explain how awful I felt, I still went to the gym in the morning and was probably lucky it was a 7am class as by later on I was feeling like a dead person and pretty much looked it.

During all this my mum was also staying and sort of felt an obligation to do something so booked for the cinema Tuesday afternoon. We didn’t really know what to watch so sort of off the cuff chose ‘It’s a beautiful Day in the Neighbourhood’ with Tom Hanks, I’d seen him on Graham Norton and he’s usually good for a ‘good un’. I will admit, I’m not the best for a cinema experience, having been compared to a small child having the inability to stay still for the duration. However, I thought, if nothing else, it might be a good way for me to have a snooze for a short while (memories of that really shit James Bond one stood me well!). Watching that film, I mean I had never really heard of Mister Rogers, but the music somehow was massively calming, his voice was so soft it made me really emotional and by the end something had really resonated with me, if not just this quote that I had to write down and look up straight after:

Anything mentionable is manageable

“Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.” Fred Rogers

For my fellow Europeans (don’t mention the B word) and bear with us our American friends, Fred Rogers was an American television personality, musician, puppeteer, writer, producer, and Presbyterian minister. He was the creator, showrunner and host of the preschool television series Mister Rogers' Neighborhood, which ran from 1968 to 2001.(courtesy of Wikipedia)

I think his words kind of relates back to a previous blog, ‘get comfortable with the uncomfortable’ the more we speak about something the more we understand how we can deal with it. For me, I’m still learning, and the more I learn at the moment yes the more scary it is, but I guess that’s the point. Believe me I am getting some tough love in my sessions, and some real awakenings as to how I’m ‘not’ going to be able to carry on exactly as before. I can’t admit not to be upset by this, but over the last few weeks am now following more people living with a chronic illness, and I am through everyone trying to learn how to look at this more positively, how I can change my mindset to looking at how I can live rather than how I can’t. 

I have spoken to inspiring people over the last few weeks and people who have had their own traumas, I have done more yoga and meditation (something i have struggled with being a manic, I haven’t got time for this, kind of person). I have been told that eventually I should see MS as a gift and use it for many positive changes (not quite yet!). Speaking to the lovely yoga lady at FF, she recommended I tried to ground myself and said to try standing in the garden in bear feet and go straight into a Epsom salts bath. I did try this, however it was pi**ing down, so got completely soaked before getting in the bath and did feel slightly daft, in the garden trying to look contemplative at Sherfield Park! But do understand how the outdoors and nature can make everything a little better, so will definitely try again!

Just returned from a lovely long weekend in Pembrokeshire with Neilly with nature and beauty in abundance. Watching the tides, and feeling the wind so wild it will knock you over in an instance puts a few things into perspective, we don’t really have a choice! 

Many thanks to CrossFit Basingstoke for member of the month. Humbled and  appreciate the love and support from all. I’m not worthy! Thanks Chris and Nigel. 

Oh and I got my Southampton hospital appointment - April 17th!

Have a great weekend everyone and see you next time. 

Suicide or tea today?

OK so it’s been a week (and now longer as it’s almost another since starting this) I have written, and I don’t know what it is about Tuesdays but they make me blue at the moment. Somewhat ironically I was born on a Tuesday - full of grace and all that, anyhow that’s not the point, a couple of key subject matters I flagged over the week. 

I wanted to get a GP appointment, our local surgery is particularly busy it seems. I phoned and asked for an urgent one. Firstly I was told to ring back and press a different option after a 10 minute wait (it’s hardly a call centre in Chineham but OK fine) did that and after being on hold for even longer listening to some alert about Coronavirus, I finally get through to someone. I ask for an urgent appointment, she says some date in March, given that it was the 12 February when I called, that hardly seemed urgent. Anyhow I explained that it was not an option, and she said someone would call me back later. So later when the nurse called, I mentioned my diagnosis and really need to speak to someone. She offered me a date 10 days later, but I if I was suicidal to please ring back sooner! 

Do you think that was the advice Caroline had? What If I had been suicidal, do you think I might have thought oh I better phone them back to check today is OK

Anyway, I won’t get all morbid, and truly still feel sick about poor Caroline, our media and social trolls, have taken away a young and talented lady. As she says, “in a world where we can be anything, be kind.” RIP.

Let’s talk wee. Over the last week, I did do my 4 day input and output measuring,  I got so used to peeing in a measuring jug that a couple of times during the last day I went to the effort of aiming for the jug, but then flushed it straight away without actually looking how much was there. Luckily I had also got use to knowing about how much was coming out, so made educated guesses where needed!

I’ve been gyming as normal, usually 7am before the day starts. Some have felt better than others. Box Jumps/Step overs always seem to be shaky on the leg balance, I haven’t dared to double under, sticking with the ski urg. I was worried about Friday’s workout, which included the dreaded skipping, but actually felt quite good with the replacement and by the end was reasonably happy - something I am quite reluctant to be with myself!

This week also saw my first CBT session, I was worried as have tried counselling once before and it really did not work, I did not feel comfortable talking to a guy twice my age and only managed a few. Anyhow this Wednesday with Lyn was good, she already has given me some practical brain advice, advised I have what’s called Generalised Anxiety Disorder (GAD) with low self esteem and high self-expectations in her follow up email and promises to shed some more light as to why I am addicted to exercise next week!

So work. I guess I am still living in denial, have been going about gym and work as normal really up until now, and then cursing myself for being tired and emotional by the afternoon. Although I have been working at home, giving me the ability ‘to measure’ and to take breaks when needed I think the doctor yesterday was concerned that any small amounts of stress were being intensified at the moment and could be detrimental to my health. She was worried that until I get the call from Southampton and start the drugs any amount of stress could make things worse, and given the drug only promises to stop it in its tracks rather than help current problem she wants me to not work at all over next 2 weeks and concentrate on accepting things in my head first. I very reluctantly sent the certificate to HR yesterday and promised not to look at emails for a while.

Neil and I are looking forward to a trip back to Wales at the weekend, sea and (no) sun will always help put a few things in perspective.

Anyhow, back to the title of this blog, I choose tea. 

Try and talk to your family and friends if you are feeling down. #Love

Get Comfortable with the Uncomfortable

Get comfortable with the uncomfortable (title word credit to Sarah Allcock, available for weddings, funerals and general get togethers, if you’re lucky)

I have had a few days to think even further on this, this being that word(s) MS. 
Now, I have expanded the list of people I have told (and believe me the first hit of send on social scared the shit out me), it got me thinking and worrying about whether I should tell people/anyone in general, and whether by saying that word(s) I am making people uncomfortable and perhaps they don’t know how to react when me saying I have just been diagnosed. I mean, what do you say, if you mention that C word as well? “Shit mate, sorry, life sucks” ?

I actually don’t have the answer, as yet indeed it can suck, we can all draw the short straw in life at any given moment. Illness, infidelity, death (not in that order) in fact the list is far too long for me to even start - so looking at the here and now, who should we tell and how do we stop people from feeling uncomfortable and sorry for us?

So, it seems normal practice to tell someone you have a cold/the flu, a bad head, but not to chuck in the M.S.or C words in there too...Should I shake someone’s hand, and say ‘Hi i’m Hannah from Sherfield Park (too posh to call Basingstoke but really it is), I have MS’ just like someone says ‘Don’t come too close to me I have a cold’ ? Probably not, but it’s a thought! 

I say this, as this week I have been attending the local CrossFit box in Haverfordwest, where really I don’t know the athletes from Adam, as lovely as they are. But after the initial, I am visiting my mum for a few days, i’ve been adding in the ‘oh and my double unders are fucked as I now have MS’. Probably not the normal greeting, but nevertheless my anger on my legs not working properly, has at the moment still got the better of me. 
A couple of ‘oh shit’ faces i’m sure but did I really need to add that in there? Do I want people to know I am normally better at this shit, but now i’m defined by my disease? Probably, but that’s my problem and have indeed been referred for 10 CBT sessions by Bupa’s health doctor - oh and for people who are not sure what that is, it stands for Cognitive Behavioural Therapy (TBH I wasn’t sure either until I was told I needed it). I worried about mentioning probably even more so in my own CrossFit gym at home last week, sorry guys, I just don’t want to make an excuse for being shitter than before. It was OK, when it just involved a hangover!

This afternoon I have come into a lovely pub in Little Haven to look at the sea, a place Neilly and I love, and the bar man Alfie, a nice young man, starts up a conversation whilst ordering my wine (yes I’m allowed wine). This somehow involves him telling me (in probably the less than 5 minutes we were talking) that he has been banned from driving for 15 months, following him driving his un-MOT’d car at speed away from a police car in Cardiff, being chased for a while but getting away (I think he was showing off on his driving skills there, but that’s irrelevant) but that he ended up handing himself in the next day. I did find this funny, although I probably shouldn’t, and he does indeed as promised come up as the first hit when googling ‘Alfie Young Police Chase’ which he told me I could check. He did also add that he never had been in trouble before, and the 15 month ban, and 6 month suspended sentence seemed a wee bit harsh! 

Anyway, the point i’m trying to make, is that as humans, we have a preconception about what is normal chitchat and what isn’t. Perhaps I look trustworthy (or dodgy on my own on an iPad in West Wales) and perhaps it is the British in me that thinks such things aren’t talked about, so sorry I don’t mean to be presumptuous as i’m not suggesting we start all sorts of inappropriate conversations (Brexit included!), but maybe we need to change that. Maybe given I am stuck with MS for life and so are the other 2.3 million people in the world (that stat is from nationalmssociety.org but can’t believe that’s it) this is something we should talk about, we can joke about and something that we should bring to the table - along with the wine and the police chases!

Just a thought. 


WOD today was:

3 x 10 Min AMRAP in teams of 3

1.
30 consecutive DU or 50 singles (I struggled with these, so managed about 30 singles at a time)
10 x Synchro Thrusters (stuck at 25kg)

2 min rest

2.
30 Pull ups
10 x synchro OH Squats (stuck at 25 too)

2 min rest

3.
200m Row
10 x synchro power cleans (30kg)

Felt a little conscious in a team WOD today, not being able to work full capacity and quite leg intensive , but was good.

Well done to my CFB hero’s for hitting Karen today (to everyone else, don’t worry they are all now in custody)

Now for Ireland v Wales rugby tomorrow! C’mon Wales!

Han xx