Tag: lemtrada

5 more sleeps.

Less than a week to go!

It’s gone so quickly. Hopefully this time next week Day 3 will be complete.

I think I’ve got everything on my “hospital packing” list now, so I’m ready! I had to make sure I had some respectable pyjamas – you honestly don’t realise how much of a slob you are until you need clothes to go into hospital 😂

I’ve been warned about this vile rash that you get as a reaction to the infusion on Day 3 or 4 so I’m loaded up on Eurax cream and Aloe Vera gel. 1 in 10 manage to avoid it, but I’m not counting on me being one of the lucky ones! I’ve had warnings of offensive tastes from the steroids too so I’ve stocked up on mint imperials. I also succumbed to ordering a Love Island water bottle too- hopefully it’ll arrive before I go in. If I’ve got to drink about 10 gallons of water a day, I might as well make it sassy!

This week when asked about how I feel, I’ve answered that I’m just looking forward to a really long break from work and a lot of sleeping. Dave’s fuming – he thinks it’s a huge waste that I’ve been signed off work for the duration of the World Cup as I’m really not a football lover. I can’t even find it in me to be slightly patriotic towards my country. Not a fan.

Yesterday I thought I was going in to see Danny, so I was armed with a tonne of questions. Turns out I was just getting some pre-Lemtrada blood tests. I dunno what they were for exactly but as usual, they took loads.

Having caught up with Danny today I’m feeling really reassured now. He said he’ll pop in to see me next week, so I know I’ll be getting at least one visitor.

As it turns out, they’re really flexible on visitors which is good. I’ve told Kat and Steph to come on Thursday so that they can laugh when the sexy rash appears!

I’ve got more of an idea of what Day One holds now. On Monday, I need to be at Salford Royal for 8 am. They’ll start off with some blood tests and a urine sample followed by sending me off to the cafe for an hour as they wait for the results to come back. Then providing they’re all ok, they’ll request the lab to mix the Lemtrada and then I’ll be hooked up to an hour of intravenous steroids before they move onto the Lemtrada. I’m bracing myself for a LONG day.

In the meantime, I’ve got a nice a weekend planned with a Poppy play date on Sunday and Dave and I are going to an Evening with Eddie Hall Saturday night.

The next time I blog, Day One will probably be done! Eeeekkk!

Me and my Girls! We went out for Pre Hospital cake on Sunday 😊
Said cake.

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!

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!

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!

Little Update!

I’ve not blogged for about ten days, which for me is quite a while! I’ve felt like there’s not been much to say over the last couple of weeks.

So what’s been happening?

Last Sunday, my lovely friend Karen ran the London Marathon for MS-UK. As she had a charity spot, she had a £2000 target to hit, which I’m pleased to say she did. She didn’t have the race she’d been planning because of the heat. But she did it! What an absolute champion!

Lou dragged me to Body Pump on Monday, then I spent the subsequent five days not being able to walk. I found this particularly amusing as I’d shared my story on our work intranet in aid of MS Awareness Week. All I could think was that people will have read my story, then seen me walking really strangely. Then put two and two together and ended up with five 😂. It certainly gave me a little chuckle!

The last couple of days, Dave and I have been glamping! When I found out about going for Lemtrada this year, I knew we’d have to get a break in sooner rather than later. We had thought about trying to get over to Athens for a couple of nights, but it’s just not going to he possible. So instead we’ve found ourselves in a “Pod” on a campsite between Blackpool and Preston.

Although the weather was abysmal, it’s been so lovely to just recharge. I actually prefer the bad weather to it having been roasting. Plus, as the weather was bad, it was nice to not feel compelled to do something just because it was nice. I think I needed to just more or less stop!

I’ve had increasingly itchy feet again – you know what I get like when I’ve not heard from my specialists for a bit. Today I came home to some fab news though.

I’VE BEEN APPROVED FOR LEMTRADA!

This is such a relief. I know I got told that the evaluation panel thing is “just a tickbox exercise” but it was still worrying me a bit. So now it’s just a case of waiting (oh there’s a change!) for a date.

On the plus side I’m still avoiding a lumbar puncture, YAY!

Finally, I’ve started reading a book called “The Unmapped Mind.” It’s written by a guy who has relapsing remitting MS, and has also had Lemtrada. It’s a combination of his memoirs along with everything he learned along the way. I’ll be giving a full review once I’ve finished!

Forget me not.

The hardest thing I have to cope with day to day, is waiting around to hear from my medical team. I always get itchy feet when I’ve not heard from the hospital for a bit. It’s now a month since my last appointment and 3 weeks since I confirmed to Danny my treatment choice.

3 weeks isn’t very long really, but when this is the biggest thing in your life, and you’re waiting, 3 weeks is bloody ages!

Today I came home to blood test results. Which I don’t even understand (but for the confirmation that YES, I have had chicken pox), but I couldn’t be happier to have them!

The immense relief I feel when this happens, is huge.

YAY! The NHS hasn’t forgotten I exist!

You know what this reminds me of? Boyfriend’s in my early 20s.

I kid you not.

In my 20s, my insecurities coupled with rubbish boyfriend’s, meant that when I wasn’t with them I felt as though I constantly needed to be in touch with them. Knowing what they were doing. Who they were with (yeah I know boys. I was one of “them”). I always got “the fear” when they were on a night out.

I remember one particular boyfriend, who would never commit to when he was seeing me next. I’d be expected to wait around, and wait in to see if today was the day I’d get to see him. Turns out that was because he was too busy planning when he was going to see his other girlfriend, and would just let me fit in wherever suited him.

On reflection that was such a sad existence. I look at 20 something me, and want to give her a hug. Tell her that he’s not worth it anyway. Not that I would have listened.

Anyway – back to the point! Receiving non descript letters from the hospital feels really quite reminiscent of those texts from a guy you’re seeing, at the point that you think he’s forgotten all about you. No, you haven’t the foggiest how to interpret that text he sent, but at least he’s thinking of you!

I’d like to think that I’d at least learned the art of patience from these experiences, but clearly I haven’t!

Today though, I take my mail as confirmation that no, the NHS hasn’t forgotten about me!