Month: May 2018

Life just goes on.

Being diagnosed with MS was a funny old thing. All hell broke loose because I’d lost the sight in my eye. I had test after test and appointment after appointment. Waiting and more waiting. As I chose to be open about my diagnosis, every question of “how are you?” was accompanied by a sympathetic, concerned head tilt.

I was on a roller coaster of emotions. Some days I found the whole thing really surreal, whilst on others I’d be cracking every possible non PC joke at my own expense. One day I felt particularly indignant whilst I was out for breakfast and overheard some older boys whinging about all the seemingly able-bodied people parked in a disabled bay outside of Sainsbury’s. Not all disability is visible you know (oh God, the sense of entitlement!) Fortunately it was rare, but I also had days where the tears wouldn’t stop and I’d find myself in quite a dark place.

I wrapped myself up in cotton wool a bit. I stopped going to the gym. I tried to explain every personality trait or ailment as MS, as I struggled to work out the difference between Jo, and Jo with MS. I read far too much into it. But I also felt like I needed to live up to the “label”. Because quite frankly, it felt ridiculous that I was now technically disabled. Sure, I’m in pretty much permanent state of exhaustion, but people are always tired. A few simple “adjustments” to my life, like taking the lift instead of the stairs because my legs weren’t working properly today became a huge deal to me. I became the opposite of suffering in silence, as I had done prior to my diagnosis. Suffering feels like a strong word, I just dealt with it. I’m not sure what stopped me just getting on with it like I had done before. I guess I felt I had a licence to be honest about how I was feeling, but also all these things that I’d made insignificant before were suddenly something I should be taking far more seriously. The pendulum swang way too far though! I felt like I was making a huge noise about the changes.

Somewhere along the line, people stopped asking me how I was doing. They had realised that physically, I was more or less ok. The world hadn’t ended. I didn’t have the “bad type” and I’ll probably be lucky and not end up in a wheelchair.

I wish I could have caught on as quickly as them!

I’m almost in that place now. Where it’s just part of who Jo is. Not something that I have to get my head around co-existing with every single day. I’m having a lot fewer bad days, and they have reduced to fleeting moments. I’m back in the gym and I’m making fewer jokes in bad taste. Some days I don’t even think about the fact that I have MS, although my impending treatment is kinda making that tough for the time being. But I can see that I can get there.

I can see that life just goes on.

Me, getting on with life and not letting anything wipe the smile off my face!

Re-brand!

Tomorrow, 30th May, is World MS Day and it felt right for me to honour it.

I’ve decided to do this by re-branding my blog. I’ve changed the website address to something that’s a bit more reflective of what I write about. I was keen on the play on words which reflects both the fact that MS is totally misunderstood but also nods to the fact that my blog is about me making my MS, understood.

I’ve also decided to try out a new theme, although I can’t say I’m convinced by this new one. But perhaps I’m just having a bit of an aversion to change!

Either way – I’m trying out a new look!

 

I like driving in my car…

Something that’s been hanging over my head since January, when I was formally diagnosed (which I’m now referring to as “D Day”) is my driving licence.

During that appointment, I was told to do two things aside from come to terms with my diagnosis:

  1. Tell my employer (assuming I was comfortable to do so)
  2. Tell the DVLA

The first one was easy. I had already been open about my health with my line manager and quite a few colleagues too. The second seemed OK too. My consultant told me that I would need to complete a form and send it back to the DVLA who would  then write to my consultant for her opinion on how my condition affects my driving. She reassured me that she had no objection to me continuing to drive.

I duly found the form online and set about completing it. I ended up waiting to my first appointment with Danny before completing it. I had a couple of questions to ask him before sending it. I knew that I would soon be meeting a specialist to find out more about medicating, and at this point I was expecting to be on a daily medication rather than the aggressive treatment that I’ll soon be starting. I wasn’t sure whether I should wait until that was decided, before informing the DVLA as they do ask questions about how you manage the condition.

Danny urged me to send the form off as soon as possible so upon arriving home from that appointment, I did so.

In spite of my consultants assurances, it was just one more unknown thing and something to worry about. What if they did take my licence away?

Within about six weeks of posting it off, I received a letter saying they were still awaiting information from my consultant and that they would be in touch in due course. A further three weeks later, I received another letter that made my heart sink.

“In addition to MS, we have information to say that you have another condition. Please complete the attached forms in respect of your Optic Neuritis.”

I was furious at first. I can see! My eye sight had come back and that was no longer an issue. I completed the new forms but I was worried sick. So worried, I included additional information although I wasn’t asked for it so that I could provide additional context. I couldn’t see how I would cope not being able to drive.

So for the last three weeks or so, I’ve been waiting with baited breath, half expecting my licence to be revoked. Yesterday I finally received confirmation that I can retain my licence, but I’m to be moved to a medical review one. Simply put, this means that right now, the DVLA are happy for me to continue driving but I’ll be reviewed every three years for any deterioration in my health. This is so significant as MS can really affect the eyes, as I have experienced with double vision and blindness.

I’m trying to see (yes I know!) the positives in this. They’re looking out for the safety of me, and everyone else. I don’t have to pay driving licence renewal fees anymore either. For some reason though, this is one of the things that comes completely out of left field and reminds me of just how serious what I’m going through is.

 

I’m a f*cking badass!

There’s a moment where you realise that this disease isn’t going to beat you. I had that moment this evening in the gym.

Prior to being diagnosed with MS, I was a reasonably consistent gym goer. I found a love for lifting heavy shit and I didn’t really look back. But then it all just stopped. I couldn’t face the gym. I was mentally exhausted trying to come to terms with the hand that I’d been dealt.

In a bid to reignite my passion, I switched gyms in April, leaving X4L (which quite frankly had really taken a downward turn) and moved to DW, which has now merged with Fitness First.

I was still at X4L though until April but nothing seemed to motivate me to go. That was until the day I somewhat dramatically had a complete melt down and realised that perhaps the only reason my MS wasn’t particularly showing itself physically, was the strength I’d spent the last four years building. Then I got really hysterical, or rather irrational and realised that if I didn’t go to the gym right this second, I would have a relapse tomorrow that would put me in a wheelchair.

Melodramatic as this was, it was probably the gigantic kick up the proverbial that I needed. I found my “why”.

I tentatively began dipping my toe back into the gym in early April, but I couldn’t face the free weights area on my own. I was terrified! I always had so much confidence at my previous gym, but I knew it and I knew lots of the faces. It was familiar. To help combat this, I dragged Lou to a couple of Body Pump classes, but then Clare told me that she wanted to start lifting weights.

Brilliant! This was just what I needed! I needed a project. After four years of having a personal trainer, I no longer need one. I know what I’m doing. So using everything I’ve learned, I have developed a training plan for me and Clare. Having someone to go to the gym with, makes it harder to not bother. I wouldn’t hear the end of it if I skipped a session. Believe me!

So this evening, as Clare and I trained back and arms, I had that realisation.

I don’t lift the heaviest weights in the gym. I don’t have the body of someone that lifts weights in the gym. I don’t count my macros (I’ve learned that it’s ok to just eat whatever you want and it balances itself out anyway!)

But do you know what I am?

I am a fucking badass

I had no idea that I have MS and I lifted all the heavy stuff. Why stop now just because I have a “label”?

So I’m not stopping. Sure, my goals have changed; I’m less bothered about hitting certain personal bests or targets and more bothered about just remaining strong and consistent. My grip has always been a struggle for me. Quite often my grip has hindered me before my strength has. It comes with the condition so it’s time to accept that that will always be a pitfall for me.

Just because I have MS, I don’t have to stop. In fact I can be less tough on myself when I don’t hit that personal best anymore. It’s ok. The fact that I’m even in the gym and lifting stuff that’s not exactly light, is pretty damn awesome.

***According to Urban Dictionary, apparently the first rule of being a badass is not talking about being one. I’ve clearly broken that rule, therefore I’m probably not a badass. But never mind. Because I’m a badass I don’t care what Urban Dictionary says.***

3 weeks to go…

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I’m extremely conscious that I’ve not written for about two weeks again. I sort of feel like there’s not a lot to say at the moment, despite the fact perhaps the biggest thing to ever happen to me is imminent!

The countdown is very much on for my trip into hospital. It’s three week today until I’m in hospital starting my first round of Lemtrada treatment. In preparation for this, I’ve taken a couple of days off work to “declutter”. Although not 100% sure where I want to spend my recovery time yet (Essex, with Mum and Dad is an option), when I am at home, I want to have as little “stuff” around me as possible.

Last Monday, something strange happened. I didn’t wake up with my first thought being “I’ve got MS.” Ok so that being my first thought is perhaps a slight exaggeration, but I’d be lying if I didn’t say that over the last 8 months since I got told that I might have it, I’ve been very conscious of it. There’s been an MS cloud. Not necessarily a big grey cloud, but a cloud has been hanging around. But now it’s gone.

It got me wondering why this might be the case. I have a theory that I’ve toyed with for a while now. Had I attended my appointment with the specialist back in March and been sent home with a prescription, that would have been it. Something would be being done about my condition and life would have to go on. I feel as though whilst waiting for all stuff to happen, I’m back in Limbo again (and we all know how much I just LOVE it there!) Now I have a date that yes I am waiting around for, but it feels more proactive. So I’m getting on with life as much as I can.

So cloud gone! Yay!

I couldn’t believe how quickly my date came through following confirmation that I was agreed as suitable for treatment. I spoke to Danny last week and he explained it. I was on an urgent list! It seems insane when I have no real disability in terms of my mobility. I think that’s the point though. Nobody wants me to get to that stage.

Now I’m in the throes of hospital bag planning. I’m so well prepared based on everything I’ve read in the fab Lemtrada group on Facebook. Apart from the obvious stuff, I need to be prepared with mints and cordial. Apparently you need to drink copious amounts of liquid (easier with dilute mixed in) and mints help the revolting taste that steroids leave.

I’m taking my laptop so I can continue my current binge watching of Grey’s Anatomy (no spoilers please – I’m only on Season 6), and I’ve got plenty of other things on the binge watch list! I’ve got books to take, journalling to do and of course I’ll be continuing blogging and writing to my fabulous pen pals.

Now all there is to wait for is the big day itself, which from what I hear, is a massive anti climax!

Watch this space. I’ll definitely be keeping you posted!

Reading in Heels – April Box Review

I’ve regularly talked about my love for letters, so it’s no surprise that I love a subscription box. I’ve never quite found the right “fit” for me though.

My first subscription box was “Gin Explorer”, a gin subscription box that was sent out by the same people as those behind the “Gin Festival”. I loved this, but quickly realised that four 50ml Gins a month was hard to keep up with. I have a reasonably large collection of gin anyway as well as not being a huge drinker. This left me in a space where I had enough gin to swim in! Gin Explorer actually stopped a year ago now, which was a blessing in disguise for me. I didn’t want to cancel through fear of missing out on the “Perfect Gin”, but I knew it was getting too much.

When it ended, there was a gaping hole. I needed that little treat through the post every month. I tried out Birchbox, the Look Fantastic Beauty Box and Glossy Box. Again, none of these ever really grabbed me. I liked the packaging more than the contents! I’m not mad keen on beauty products. My “going out” make up is exactly the same as my work look!

Then just a month or two back, I saw on Instagram, “Reading in Heels”. Now this sounded RIGHT up my street. I’ve found myself reading less and less in our era of Netflix and social media. Maybe this was the thing to get me back into reading!

I subscribed on the 4th March – so I had to wait until the beginning of April for my first box. And I couldn’t wait! They promise that you will not receive a book that’s a chick lit or a crime novel.

After a slight delay due to the 1st of the month falling over the Easter bank holiday, my box arrived and it didn’t disappoint!

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So what’s in the box?

The first thing I found was a guide to what’s in the box. This covered a bit about the different products, plus instructions on how to win your next box (post on social media!) and the hashtag for that month’s box. There was also a postcard asking me some questions about the book which served as a mini review card. This was SUCH a nice touch!

I’d not even into the contents and so far, so good! Once, I opened the tissue wrapping, here’s what I found:

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There’s not much to say about the raspberry marshmallow bar. That got devoured whilst I perused the rest of the contents! It tasted really good and I’ve since found them in Starbucks (and may or may not have purchased one). I’d highly recommend if you want a sweet treat that’s a little lighter.

Next up is the tea. The tea comes from “Lola’s Apothecary”. It just sounds cute doesn’t it?This one was called Clementine Calamity and is billed as a “relaxing wellness tea.” Now if you know me well, you’ll know that any kind of herbal or fruit tea is right up my street. Whilst I love a regular brew, it gives me the worst stomach cramps, so I tend to avoid them. I can’t say it particularly calmed me, or relaxed me. But I drank it with a book in hand which usually means I’m feeling pretty chilled out anyway. It tasted really good – if you like a tea that packs a fruity punch, this one is definitely for you.

So onto the fragrances. These Miller Harris fragrance samples are both lovely, but I definitely have a preference for “Rose Silence” over “Tender”. Tender is a unisex, oriental floral fragrance, whereas Rose Silence is also a unisex scent but has more floral tones.

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The last “treat” before I get on to what this whole box was about, was the face masks, from Opitat. Both are sustainable, vegan and organic. You know the “buzz” words. Today I have finally gotten around to trying out the marshmallow root, english hemp and activated charcoal one. These facemasks are a powder which you have to mix with water to form a paste. I definitely made this more watery than paste like. There was no real instructions though around quantities of water. I added about 10ml in the bottom of a cup, when really it probably only called for a drop or two. The smell is lovely, and I did somehow manage to get it on. You only need to leave it on for ten minutes (so brilliant for impatient souls like me). Watch this space for whether it was worth the effort. Initial reaction suggests it was, but we’ll see how my face feels tomorrow!

Finally, the book. This is not a book I would have picked up in the shop. “The Party” by Elizabeth Day is a book that kept me in suspense. It was one of the quickest reads for me in a while as it kept me on the edge of my seat!

The book centres around Martin and Ben, two best friends. One is from a privileged background whilst the other is not. We first meet Martin as he is being questioned by police following events at a party. We later go on to meet his wife, Lucy. As the tale unfolds, we find out exactly what happened at this party, with lots of reminiscing on Martin and Lucy’s part. We learn how Martin’s friendship with Ben began and then evolved to what it is now, along with what lead to the events at the party. It’s a compelling read and I did not see the twist coming (although that doesn’t say much – the only thing I can predict happening, is the events in Coronation Street and that’s never exactly subtle is it?!)

I gave the book 3.5 stars. I was most disappointed that I didn’t really “connect” with any of the characters and I didn’t feel as though I got “closure” from the book. Something in the ending was missing for me. Having said that, I would consider it a recommended read and have already passed my copy on.

I’ve already received this month’s Reading in Heels, and I will definitely review that once I’ve made it through the contents!

Overall, I highly recommend this box to any book worm 🙂

If you fancy it yourself, Just stick “Reading in Heels UK” into Google – you’ll find them!

I’ve got a date!

Well – I’m blown away!

I mentioned just earlier this week that I have been approved for Lemtrada treatment, and today I received a phone call from one of the MS Nurse’s at Salford Royal with a start date for Lemtrada of 11th June. I am so happy at
how quickly I’ve been given a date to start.

So that’s it. The countdown is on!

For the first time in my life, I’m going to be an inpatient at hospital. I feel a real mixture of excitement and nerves at the moment. The adrenaline is definitiely pumping as I think about what this means. It’s moments like this that I
realise that even though I feel mostly ok, I’m not. The treatment I am having is really aggressive. There’s a reason for that.

I think I’ve talked about what Lemtrada is before, but here’s a quick recap:

  • Four weeks prior to treatment I start the Listeria Diet (basically can’t eat/drink unpasteurised products, uncooked meats, pre-prepared fruit and salads, Mr Whippy, soft eggs and
    cheese)
  • Inpatient in hospital. The treatment is five, four hour infusions. One a day. The treatment basically wipes out my white blood cells as they are what’s causing the demyelination / attacking
    my nerves. Think of it like a system reboot of a computer!
  • Following last infusion, sent home with all the antibiotics and a sick note
  • Four weeks later, start monthly blood and urine tests to monitor possible delayed side effects
  • Six weeks later, finish Listeria Diet
  • 12 months later – go in for Round 2!
  • Five years later – finish monthly bloods

That’s a real whistle stop tour of the treatment, but it gives you the general idea.

This is exciting. It’s huge. This treatment could halt my MS, or at the very least slow it right down. There’s even evidence to suggest that it could reverse some symptoms (although this isn’t common).

I’m excited. This is going to be a long five and a half weeks!