Month: April 2018

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!

“The Fear”

Ok. Confession time.

I’ve gone from being a 3 or 4 time a week gym goer to not going at all for two months.

Wanna guess why?

Nope. Not because I have MS.

Want another guess?

I’m shattered? Yeah well that’s true but it’s only a small part of the reason.

How about, I’ve been too bloody scared!

I’ve been a member of a budget gym for nearly four years but very recently, I cancelled. Sam hasn’t been personal training there for nearly a year (at a rough guess) and despite it’s recent facelift, the place is tired. It lacks a buzz. Although I don’t do many classes anymore, preferring to train on my own, the timetable has gone pretty naff too. If you like spin and boot camp, fill yer boots. Anything else and you’ll be disappointed.

So this year, through our employee benefit scheme, I moved gyms. Incidentallty, this is one that Sam teaches a couple of classes at, and she’s been selling the place to me for months!

I’ve been a member for 17 whole days and today I took the plunge and went.

The point is, why has it taken me 17 days though? I’ve been so excited about joining there, I should have been banging down the door at opening time on April Fool’s Day!

I got “The Fear”. And then I started thinking too much about “The Fear” and ended up in tears after thinking all the irrational things last Wednesday.

It all started whilst I was writing the “My Big Why” blog post. I came to the realisation that I’m probably still as mobile as I am from the work I’ve been doing in the gym for the last four years. I never saw myself as physically strong, but in the time I’ve trained with Sam, I’ve lifted weights I never imagined possible.

Then I started thinking how I needed to get back to the gym. I’ve been in a lot of pain over the last month. By a lot, I mean quantity of pain rather than level of pain. I’ve been getting stiffness and pain in my left knee, sometimes extending to cramp in my thigh. I’ve been feeling a LOT MORE spaced out than I usually do.

It can’t be a relapse, because these symptoms aren’t exactly new. They’re just more pronounced at the moment. Just because I’ve been told I have MS, it doesn’t mean that I’m suddenly in excruciating amounts of pain. Nothing’s actually changed.

Except it has. I stopped training.

So then I started thinking about “The Fear” and that I need to get back to the gym and that’s the thing keeping me physically strong and mobile. Then I got REALLY upset and I couldn’t get past ending up in a wheelchair but I still had “The Fear” so how was I ever supposed to stay strong?!

(Are you following? I’m exceptionally confused myself now, and also getting mad at how ridiculous and irrational I was being!)

Anyway, “The Fear” was replaced by another fear. Fear of becoming immobile (we’ll call this “The Real Fear”).

Because “The Real Fear” had set in, it was time to get over myself and drag myself to the gym. For one reason or another, I had booked this afternoon as annual leave. My original plan fell through, but I decided to keep this afternoon booked off so that I could go to the gym whilst it’s quiet.

So today, I “announced myself” at the gym. All it involved was giving them a number that I’d had emailed to me. Well that was easy enough. I gave her the details, and she let me through the door and promised me that a welcome pack would be waiting by the time I was finished. She directed me to the changing rooms, but apart from that, I was on my own!

Gaaaahhh! This bit was my “Worst Fear”. Wandering around aimlessly like someone who didn’t have a clue. All my usual words of encouragement to others who are first time gym goers went out the window! I ended up tentatively taking two steps into the free weights area and then running a mile, quite literally on to a treadmill instead.

I hate running (that’s how big “The Fear” had set in again), but all the same I ended up doing 25 minutes of HIIT sprints. Urgh. What did I do that for?! It’s enough to put anyone off!

The main thing is, Day 1 is out the way and I feel good. I’m extremely happy that I successfully didn’t fall over my own feet (which is likely to happen at snails pace on a normal surface, never mind on a treadmill), and my legs felt the strongest that they’ve felt in ages. I’d felt really sceptical about them to be honest as I’ve been feeling so weak in that area over the last couple of months.

Today was a huge win and hopefully it’s the start of me getting my mojo for the gym back, if only for two or three days a week.

Next stop, Zumba with Clare and Lou. I bloody hate Zumba and I last time I did it, I fell over my own feet (of course I did!) so this ought to be good.

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 MS Buddy (and why you shouldn’t download it)

When I’d first found out that I might have MS, I went on a mission to find out as much as I can about it. This involved researching all the reputable websites possible (you know, like MS Trust and MS Society and the NHS).

I also found my way into a couple of forums. Shift.MS seem to do so much for people with MS and have loads of great resources, but after a couple of days on that forum, I just found myself terrified. People were only turning to it in their “dark” periods. It was awful. Fortunately, I was pretty quick to realise the damage it had already started doing, and unsubscribed from it.

I found lots of apps too, which connect you with people around you. Again, these seemed like a good idea at the time but I rapidly went off them.

One looked pretty good though. MS Buddy. MS Buddy is an app you can download and it matches you with someone else with MS. That bit wasn’t the appeal to me though. What really did tick the box for me, was that you receives regular push notifications telling you about advances in clinical research and stuff. Having that info coming to me, hugely appealed to me, rather than having to go searching for it.

Trouble was, everytime I clicked on one of those push notifications, it took me to the sign in page. And I couldn’t sign in.

As part of the sign up process you have to say what type of MS you have. There was no option for “awaiting diagnosis”. Even though I knew deep down what I had, it felt wrong to put something that was yet to be confirmed by a medical professional. It just didn’t feel right. A bit like sending the wrong message to the universe!

Anyway, as I was getting fed up with receiving notifications for information I wanted to read, but couldn’t access I just decided to delete the app for the time being.

After I’d received my diagnosis, it took me a few weeks to remember about MS Buddy. I did eventually remember it though, and deciding I wanted to have the medical research information come to me I quickly downloaded it and signed up.

Within minutes I’d received my first match. She was in America, was a similar age to me and had been diagnosed with MS two years prior. I was lacking the courage to message her first, but only another few minutes later I received a message from somebody else.

“Bubbles” was a 31 year old, married male from Plymouth. He had relapsing remitting MS and had done so for quite some time.

His first message to me was a long the lines of “great to see a fellow Brit on here”.

To which I replied by agreeing, that there didn’t appear to be many Brits at all based on my initial glance.

This didn’t bother me really – as I’ve already said, my driver for using this app was the news stories on medical advances.

He then replied with the following message, which was absolutely LOADED but in my usual way of wandering obliviously through life, didn’t get it at all!

“You’re from Wigan I see. Is it true what they say about girls from Wigan?”

I replied (which was my first mistake)!

“Well I wouldn’t know seeing as I’m not from there, I just live here. Are you referring to the pie thing by any chance?”

Him: “Aah it might not apply to you then!”

Me: “What exactly?”

Him: “That girls from Wigan have big boobs!”

Me: *deletes app, but not until after shrieking eww, and sharing my disgust with my friend Kat*

So me and Bubbles didn’t hit it off.

It gave me and the girls an excellent laugh though and an excuse to whinge about how some men have no shame and will try to pick up women ANYWHERE!

One of my friends had immense fun coming up with dating site names but they’re best placed in a game of “Cards against humanity” so I’ll spare the details so that she can remain a decent human being!

**EDIT** The more I’ve reflected on this story, the more I’ve realised how awful it is. Sure, I see the funny side, but some people sign up who perhaps aren’t. in a great place when dealing with their health condition. They could be signing for genuine support or answers. It’s a scary time and SO overwhelming. To for all intents and purposes “prey” on people in that way is quite frankly, abhorrent.

8 years ago, I moved.

Today marks eight years since I took the massive step from living with my Mum and Dad in Essex, to starting out alone in Wigan, just outside of Manchester.

At 23 years old, I knew everything and nothing. I never anticipated that my brother and sister would also stretch their wings and fly so far from the nest (sister in New Zealand, brother in Andover). I never anticipated that as I got older, Mum and Dad would too, and I’d start to worry. I never expected to be facing my current challenges.

These things overcome me at the strangest times, but I wouldn’t change my decision in a month of Sunday’s. I’ve very much found my happy place!

I am a planner. I am the maker of lists. But you can make all the plans and lists you want – some things are just out of your control. None of that matters though anymore. Whatever happens you just crack on and do it. And who knows, the life that you end up with could be better than you could ever plan. Moving up North is the best thing that I ever did. I can’t see me ever regretting my choice.

In Essex, I was unhappy. I had few friends. I’d had shit boyfriends. Unbeknown to me, when I made my decision I would have been made redundant from my job if I’d stuck around.

Having the opportunity to start again in the way that I did was just what I needed, and I really believe it all happens for a reason.

I now have the most incredible bunch of girls around me, I have great work colleagues and I have an awesome boyfriend with the most lovely family. I’m still in the same job, in which I’ve grown and developed. The vast majority of the time I thoroughly enjoy it as well, which isn’t something I take for granted.

Dear Northern folk. Thanks for having 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!