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!

“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.

Life after the diagnosis of MS

The diagnosis didn’t really feel as life changing as I expected it to. It was a relief. Don’t get me wrong, I knew that I was in for a tough time over the coming months, but that confirmation made me feel better, not worse.

I started this blog soon after my diagnosis, and just writing it, regardless of anybody actually reading it, was more therapeutic than I could ever have imagined. Getting my story down gave me a sense of clarity in my mind, beyond anything I could have imagined.

If there’s one thing I knew that I wanted more than anything though, it was for my diagnosis to not be in vain. I wanted good to come from it.

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I’d been in touch with Pete since I’d arrived back from holiday. Pete is someone that I’ve followed for some time on Twitter, as a fellow Wigan Warriors fan. We had met on one occasion, just a matter of months before at the Post Office. I didn’t make the connection that it was him. He held the door open for me and as I passed through I noticed that he was wearing his work uniform, which was incidentally for a rival company to the one that I work for so he stuck in my mind. Later that night I received a tweet. The awkward “was that you, or wasn’t it?” tweet that I’d sent myself on a couple of occasions!

So why was I in touch with him?

Well, he is the chairman of Wigan MS Therapy Centre. His wife Karen, also has MS. I knew about the centre as he talks about it regularly on his social media. He works seemingly tirelessly to raise funds for the charity. A number of people had mentioned his wife Karen to me since getting diagnosed – plenty of people in the rugby community know them, and everyone has such amazing, positive words to say about them both, but Karen in particular. I could see what people mean – they always look like they’re having a whale of a time in their Facebook posts!

How inspirational is that?

A few weeks back, Pete had shared a post asking for volunteers to help out with some bucket collecting for the Centre on the Saturday before Mother’s Day at the Big Tesco near us (is it just me that refers to them as ‘little’ and ‘big’ Tesco?!) As Dave was having a nerd out at Comic Con in Liverpool, I was at a loose end and volunteered myself for a couple of hours.

Always got my eyes closed in a photo..bloody useless!

I’m so so glad that I did. Finally meeting Pete and Karen, and other people in my shoes was a breath of fresh air. Being around people that “get it” is something I completely under estimated.

I’ve also finally gotten around to visiting the Centre (which incidentally Dave’s brother, Mike, has recently done some work on the roof of). It’s awesome! There’s an accessible gym for those who can’t workout with ease at a regular gym, as well as a therapy room. You can get a great variety of treatments such as Swedish, Indian Head and Hot Stone Massages, Aromatherapy, Crystal Therapy, Reflexology, Reiki Energy Therapy and Hopi Ear Candles. I’ll tell you now – I’ll definitely be getting involved in this!

Most importantly, during it’s opening times, there’s always a brew and a friendly face around for a chinwag! I can definitely see me spending more time here when I’m off work in the future 🙂

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!”

My MS Story (Part 12 – Present Day)

It’s been difficult for me to write this blog, hence why this one has taken a little longer to come compared to the others, which have more or less been churned out. The difficulty being, that my most recent appointment didn’t really go as I expected it to go, with a combination of both good and bad news. This has lead to a lot of questions and some huge decisions for me to make. It’s definitely easier to write these blog posts once the dust has settled a bit!

It’s been a blur of appointments since I first stepped into the Optician’s back in June. Following my last appointment where I was diagnosed, I’ve had a further two. Early March, I met with my MS Nurse, Danny. I like Danny. He definitely knows his stuff!

My first meeting with him wasn’t much more than an initial introduction and confirmation of what I already knew about the condition. He talked me through what I could expect from him, which included three monthly appointments. He also shed some light on my next appointment, in a further 10 days, with an MS Specialist. Last Friday I had that appointment with my specialist.

My appointment was at 9 am at Salford Royal. I was a bit miffed as it’s a bit of a trek (my other appointments had been in Wigan), but the way the dates fell, Dave was working a Saturday so was able to take Friday off to be with me, which was a huge relief. I was really struck at what a lovely, warm hospital Salford is. I get the impression that this is fairly recent, but compared to my experience of hospitals historically, this one felt far more fresh and modern.

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I was called in for my appointment by an MS Nurse, Danielle, who sat me down and told me she needed to get me to do a couple of tests prior to meeting with the specialist. I was used to being prodded, poked, liquids taken from me and liquids added to me as well by this point so I wasn’t phased. But it wasn’t those types of test.

You know the show with Philip Schofield, The Cube? It was like that! I had to put all these pegs into holes and take them out again with one hand, and then do it with the other hand, all the while Danielle was sat with a stopwatch in her hand. Oh the pressure! She explained to me that she was just testing how long it took me so that a benchmark was set. That way they could test how long it took me next time, and check for degeneration. She also timed a 25 metre walk, again, to set a benchmark for next time I was in.

Following a ten minute session in The Cube, I was then sent to wait to be called in.

If there’s one thing that sticks in my mind about all the medical professionals I’ve encountered, it’s how kind, friendly and reassuring they are, and this specialist was no exception. I went into the consultation room, and took a seat. He asked me to give him a timeline of my symptoms and everything that had happened (I was getting very well rehearsed in this by now!) and reviewed my scans.

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Here’s my brain, just to prove that I have one! See that big white dot in the middle? Now look just to the right. The wispy kind of cloudy bits are the lesions. Scarring left behind from a relapse.

He looked through pictures of both my brain and spine, then asked me to sit up on the bed. He did all the reflex tests just like Dr. Tyne had. He tested my eye sight (then started laughing at me for making the letters up when I couldn’t see them!), and did the tuning fork thing as well. This one was particularly concerning, as he’d whack the thing that looked like a tuning fork, then touched it on my foot asking me to tell him when I couldn’t feel it anymore. Within roughly two seconds I could no longer feel it. This didn’t really bother me until he repeated it on my hands and lower arms and I could still feel it about 10 seconds later. Definitely something wrong with my lower limbs there…

Once all the tests were finished, he sat me down, made notes on what had just happened and then told me that I’ve clearly had this going on for a very long time. He said that my brain wasn’t causing him any concern, but there were so many lesions on my spine that it suggested that my MS was very active. One more relapse, could result in irreversible damage. Equally, that might not be the case. But I may not continue to be as lucky as I have been. He even said that he was surprised that in spite of all the lesions that I had, I was still as mobile as I am.

He then went on to tell me, that in terms of medication, he wanted to hit it hard and aggressively.

This came as a shock. Perhaps even the toughest blow I’ve had so far. I was almost expecting to go into that appointment and be told that it wasn’t bad enough to medicate (you only qualify if you’ve had two relapses in two years and I thought that I might have missed that slightly). Having read all sorts of horror stories on forums (bloody forums!) about them, I thought there was a chance I’d even make the conscious decision to not medicate. But not this.

He presented three options to me. Mavenclad, Tysabri and Lemtrada. All come with their own risks and varying levels of effectiveness. There are pros and cons to all. Mavenclad for example is only about 60% effective in terms of halting progression. Tysabri is about 80% effective but it involves a day in hospital for an infusion every 28 days. Lemtrada is the one that medical professionals seem keen for me to go on. It’s intense, but it’s also the one that although on paper it’s the same level of effectiveness as Tysabri, in practice it’s a touch more.

I was really overwhelmed with all the information. This is something I’ve struggled more and more with – if I can get the same information by reading it somewhere, please just stop talking to me, and give me the written stuff! I asked if there was any written material, leaflets or websites available. Anything with everything I needed to know in a written down format so that I could digest it at my own pace.

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If only it was as easy as picking the option on the prettiest branding!

As it happened, Danny was at the hospital that day, and not out and about visiting patients. After he took some of my blood (they needed to prove that I’ve had chicken pox and apparently my word isn’t enough!) he grabbed a free room and talked all the options through with me. Dave and I probably could have made a decision there and then that Lemtrada was the option that I wanted to go with, but in spite of the urgency to make a decision, he still wanted me to take a week to reflect before confirming what I wanted to go with.

I’d planned to work from home that afternoon, but honestly, my brain was a mess! I didn’t have a flipping clue what I wanted to do. I was in shock from finding out my MS has caused more spinal damage than anticipated. I was scared, but equally reassured by the treatment options available to me.

My Dad is the absolute voice of reason so although through discussing it with Dave and Danny, my mind was pretty made up on Lemtrada, I needed his opinion. I sent him an email detailing the basics of each. He read through it but ultimately felt that we needed to go with medical opinion.

So Lemtrada it is. I’ll be confirming this choice to Danny on Monday.

Lemtrada works by killing off your white blood cells – your immune system. I’m being switched off and on again! The idea is that the new white blood cells don’t do what my current ones are doing (which is attacking my nerves). You have two rounds of it, 12 months apart. Probably within the next two months, I will be an in patient for five days at Salford whilst I receive my first round of infusion. I’ll get sent home with a sick note from work for about six weeks and all the antibiotics as I won’t be able to fight infection. Then I go back again in another year for round two, which only goes on for three days this time.

The only other snag is that I’ll have to go for monthly blood and urine samples at Wigan Infirmery for five years. This is just to keep on top of the more serious possible side effects such as thyroid problems, clotting issues and kidney failure. I can stomach a needle in me every month though to keep on top of that!

And in amongst all of this, the good news is that I still don’t need a lumbar puncture!