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

Numb left thumb

To the left to the left (there’s a Beyoncé song there somewhere)

To be honest, the numb thumb is the least of my problems, but is something I seem to have had for a while. It’s a kind of a pins and needles sensation that doesn’t ever go and it is rather annoying. Just thought I’d mention - I read an insta post recently - about someone who’s whole MS journey started with a numb big toe, if only I knew!

I should probably start with my eye, again on the left. So a couple of weeks ago - post the starting and stopping of the new Sertraline drug and the lack of sleep - my left eye became blurry. I did put this down to the above and figured everything would be clear again soon, however 10 days later it was still no better. So amongst the Corona chaos I spoke to the GP again who asked me to immediately go and see him. This somewhat surprised me as I am pretty used to being fobbed off! Anyway half an hour later I popped back over to the Chineham surgery and there I was told by the doctor he thought I had Optic Neurosis (another MS symptom) and was urgently referring me over to the Basingstoke eye centre at the hospital. I was really upset, I’m pretty sick of the ‘names’ and felt totally exhausted I guess, not really knowing what it was or having any info. Last week I was still feeling pretty tired and down so yet another shock to the system. 

However that night and morning, I read up a lot more about it and was feeling positive the next day that I would see properly again! Basingstoke hospital then phoned me up on the Friday, 2 days later and went straight in there to see the specialist eye doctor. 

I had the start of a cold and sneezed so was made to wear a mask, something not that easy when putting your eyes into the eye device (whatever it’s called) and needing to breathe at the same time. The eye doctor confirmed the GP’s diagnosis and said that I would need to see a neurologist, and that she would send an urgent note to Southampton to bring my actual NHS appointment forward currently on 17 April. Apparently it needs steroids to hurry the healing process up. 

Fast forward to today (Wednesday) and still no word, so I phone Southampton, who say they know nothing, phone GP who can’t help but give me the number of Basingstoke hospital eye centre, phone them they say the ‘urgent letter’ was sent, I then re-phone Southampton who say yes was actually received and viewed but deemed ‘not urgent enough’ to bring forward the appointment and suggest asking Basingstoke to make the note ‘more urgent’. So, I then phone again only to be told she wouldn’t change as have given all the facts - so 6 weeks more of blurry eye I have. 

Note - not to get in touch with DVLA quite yet. 

Sticking with the left theme, it feels a cursed side, left leg, hip, previous running injuries, all problems seem to be worse on the left. It might be a co-incidence but when my legs go and they turn to jelly, it’s the left knee that jars. I’m going to reinvestigate my medical history, as bet the lump that was taken out was from the left boob and that the giant cyst that was growing on my ovary and removed 5 years ago was on the left - damn the left - although this I’m guessing!

I’ve been engaging more with the community around MS on instagram and within the charities, and whereas i don’t feel quite ready to join a real life group, it’s really nice to see the amount of different aged people there are with a similar diagnosis and the support everyone gives each other. It’s equally then pretty scary to hear a lot of their stories and symptoms and I’m really torn as to how much of myself to give to this disease or how much to just s*d it and carry on as normal! 

I’m sure at CBT tomorrow I will get told not to look at it quite like that, and that resetting somewhat with this diagnosis is vital - which I am trying - I promise - I mean even Sarah said yesterday that she was quite impressed with my scaling at CrossFit this week, choosing the novice versions over the RX, although wasn’t sure on my additional box step ups that I thought I’d add for fun. However would take that as a positive step forward (not up!). 

And I have of course added yoga, meditation and Pilates to my schedule - now I haven’t done Pilates probably since the 90’s (as you can imagine, it’s always been a slightly boring concept to me), however it’s apparently good for MS and on at DW (FF) so went yesterday with my new found free time. I actually quite enjoyed it, was pretty relaxing and we used this kind of circle thing (no I’m not up with the Pilates lingo) for some core and stability stuff, very Jane Fonda I thought - pulse, pulse, pulse she goes (the small things!). 

Another thing I noticed on @MS_trippingonair - a Canadian blogger who kindly reached out to me, was that her MS had made her colour blind, which seems quite mad, as I have always thought I was colour blind - joking to Neilly in the past that it’s supposed to be men that are. Not true in our case as he has always been able to advise me on fashion mishaps and mismatches!

Anyway, getting this one done early especially for Gary in our 7am CrossFit class, hi morning crew and see you tomorrow!

To the right to the right...

Han xx

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.