3 weeks to go…

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!

MS Fatigue (and an apology)

My Dad always told me when I was feeling tired, to “go out and be active. Energy breeds energy.”

I can categorically say that this is not true with MS. Or at least not for any longer than about half an hour. When I first started personal training with Sam 4 years ago, I had half hour sessions on a Friday after work. I’d go home after and be asleep by 8pm. I was so inactive and unfit at this time in my life, that it was no surprise I was exhausted after our sessions. But then it just became the norm. It never occurred to me to question it, or think that maybe it was abnormal.

Saturday morning’s used to be the time for Poppy’s play date. We’d be home for 10.30 ish and by midday I’d need a nap. I’ve never been a napper, but I just accepted somewhere along the way, the week just caught up with me by Saturday lunchtime.

I don’t have enough fingers to count how many times I’ve told someone that I’m feeling exhausted and that it’s followed with “yeah, me too”.

I bear no hard feelings towards these people at all. They’re trying to empathise. They’re trying to relate and make me feel less alone. That is “no bad thing.” I get the kind of tiredness they’re talking about. I also get another type. Fatigue. Fatigue that can be so bad, that I read the other day that they’re coming up with a new name for the type of fatigue that you get with MS.

“MS Fatigue” is different to the kind of tiredness that an afternoon nap, or an early night might fix. On it’s best days, it just feels like a constant need to yawn. On it’s worst, it feels like having a really bad hangover and a bit of jet lag, with the flu chucked in for good measure. It’s like having a solid night sleep, and waking up feeling like you could go back to sleep for another eight hours. It’s a feeling that it’s impossible to get enough sleep.

As with everything with MS however, it feels different for everyone. Let me tell you what it can feel like for me…

1: Elephant Legs

Yep, you read that correctly. What does that mean though? When I refer to having “elephant legs” I’m talking about my legs feeling so heavy that they should belong to an elephant. Not to me. They feel ridiculous and even just moving them one step feels like a huge use of energy. When I feel like this, I struggle to walk quickly. There’s been occasions when I look at a stair case I need to climb, and I can’t see how I’ll ever make it to the top. I live in a three storey house, and sometimes, on these days I need to have a little sit down on the step to recover from getting to the top.

On a really bad day, elephant legs can become an elephant body. And the prospect of putting on make-up, having a shower or doing my hair seems like an unachievable task.

2: “I can be in the middle of a sentence and… …. …what was I saying?”

Sometimes I’ll forget what I was talking about. I don’t mean that I lose my thread. I mean full blown forget what we were talking about, who you are, who I am and where I am. If you know me well, you’ve probably been on the receiving end of this. You’ll more than likely be met with a blank expression.

3: Vaccuum Head

Sometimes my head feels like it’s in a vacuum. I feel like the contents of my head is being compressed and all of the air is being sucked out. This one is an odd sensation, which stops me thinking properly and generally makes me feel spaced out.

4: The Sober Alcoholic

This one is when my fatigue is more severe. When this happens it’ll be like I’m drunk. My spatial awareness goes out of the window, closely followed by my ability to balance. I’ll trip over my words and even slur them on really bad days. They’ll come out in the wrong order and I’ll probably call a “laptop” a “cabbage”. Or something like that.

5: Focus

My eyes decide to not focus on things properly. I’ll look up at the menu in Starbucks, and it won’t make sense (not a huge issue – I almost always have a caramel latte with almond milk!) It usually sorts itself with a second glance.

6: Too Tired to Care*

You: “What are you having for tea tonight?”

Me: “Yeah.”

You: *blank expression*

Me: “I’m sorry, say that again, I have no idea what you said.”

Sometimes, I just struggle to be present in a conversation. I’m too tired to listen, or think of a response when I do manage to listen. I’m too tired to keep concentration and ultimately, I’m too tired to really care.

It’s important to realise that the severity and number of these symptoms can vary daily, and it certainly links to how well I’ve managed my energy levels for that day. I’m not keen on the label “spoonies”, but “spoon theory” does go some way in explaining management of energy levels. I’ll write about it in another blog, but if you’re really interested in the meantime, Google can help you out 🙂

*I am so so sorry if I’ve ever done this to you. As you can see, it can’t be helped, although that’s not an excuse. I feel terrible when it happens, because I’m just not listening. I feel ignorant. You are speaking and I’m trying (badly) to make you feel like I’m engaged and I’m not. It’s not that I don’t want to be. I just can’t. I literally zone out.

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.