Tag: lemtrada

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!

My Big “Why”

I have been obsessively on a diet for as long as I can remember. I wouldn’t say I have an eating disorder but I’ve certainly had an unhealthy approach to food at times.

Last September I decided to put an end to that after reading “The Goddess Revolution” by Mel Wells. I highly recommend it to anyone that’s struggled on diets or has a love hate relationship with food. It’s a fantastic read and helps you to see how you can change your attitude towards food . You ditch the diet mindset and focus on intuitive eating. Trouble is, as I’ve not been banning pizza and chocolate, I’ve intuitively just eaten a lot of that stuff.

Not great!

Luckily, I’ve only put on about half a stone as a result. But it’s time to heal that.

Mel works on you finding your “BIG WHY”. Why do you want to heal? It’s got to be big and something that you emotionally connect with. It’s got to be big enough to make you want to stop and truly look after you by eating good, nourishing soul foods. And no, I want a sexy summer bod, ain’t enough!!!

For some people, it’s so that they can get a body that will give their unborn child the best start. For others, it’s so that they can lead a happier life filled with vitality and adventure – where they truly love and respect their body and don’t let it hold them back.

For me it’s something else. For me, my “why” is so that I’m strong enough to fight this battle I’ve got. My strength that I’ve built in the gym in the last four years is something I will eternally be grateful for – I seriously question if I’d still be as mobile as I am if I hadn’t built my strength as much as I have done.

This realisation is the immediate kick up the arse I need to get back to training and eating well.

In the spirit of this, I’ve spent the last hour prepping Buddha bowls and I’m off to a new gym tomorrow!

My Buddha Bowl! Wild rice, sweetcorn, edamame beans, roasted broccoli, squash and peppers, carrot and crunchy chickpeas. Topped with a nice cajun chimichurri dressing 😍

Unfortunately, the 10K that I really wanted to run for Wigan MS Therapy Centre this year, isn’t going to happen – there’s no way with going in for treatment I’d be able to be fit enough in time.

For now however – I’m just going to do me, without a diet plan and without setting myself stupid goals that I obsess over and then feel crap for because I’ve failed at them. They make me unhappy and they do not nourish my soul, never mind my body!

Here’s to strength and vitality!

Today, is a good day!

Following my last appointment, where my Specialist and Danny told me all about my treatment options I’ve had a lot of thinking to do. My decision hasn’t changed from what I had decided in my last post.

Today, I confirmed to Danny that the route I want to go down, is Lemtrada.

In the time since my last appointment, I’ve been in touch with Ana, a patient of Danny’s who has responded well to treatment. Ruth, a new friend who also has MS, added me to a group on Facebook for people who are thinking about Lemtrada as a treatment option, or already going through it. I was a bit wary of this at first as we all know my prior experience of forums kind of sucks. I’ve found it a very real, balanced environment though. It’s not full of whingers. It’s really supportive and feels far less “toxic” than some of the other forums that I had previously come across. If anything it’s helped me confirm my decision.

So that’s it.

Next steps are my case going to an evaluation panel where my Specialist applies for funding. From what I gather, this is more of a tick box and with the story that my spine is telling with so many lesions, it’s without question that he’ll be successful. After that I’ll hear from my Specialist, with a date.

Then it’s just sitting tight and waiting (yeah, waiting again!) for a date to go into hospital. The challenge is waiting for a bed, but Danny thinks that I should be in by June.

I need to start thinking of all the questions to ask him, because here’s how good my questions were today:

– Can I travel to Essex if I decide to spend some of my recovery down there?

– Are you going to put me in a cotton wool house?

– Can I still hang out with Poppy (the dog)?

– Can I still drink gin?

No. I don’t need to be wrapped up in cotton wool, and I can live a reasonably normal life in the period after treatment within reason (i.e. keep away from “germy” folk). I can have gin, hang out with Poppy and go to Essex if I decide to do that.

Today, I actually feel elated. I feel like I’m getting somewhere. And as I said to Louise the other day:

“Bring it the f*ck on!”