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 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!

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 🙂

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!

My MS Story (Part 9)

Today, I have woken up feeling the best that I have in a good few weeks, possibly even months. The things that particularly aggravate me daily, aren’t there. My head is clear and doesn’t feel like it’s stuck in an airless vacuum. I feel more awake and alert (surprising since I got less than six hours sleep last night). I feel present. The usual tingling in my leg has been at a real minimum all day.

My last blog post, as I said at the time, was not one I ever planned to write. This one here is the next part of my story. I got a lot from writing my last post though, and it definitely cleared my head. I was even able to find my “Why Me?” just a day later, which is a story I may share another time.

Two days after I had been in hospital and been told that I might have MS, Dave and I flew out to Athens for our holiday. That meant that I had two solid weeks, away from reality to come to terms with what I was facing.

I’m not going to lie – I spent close to the first three or four days flinging myself about crying. If Dave was asleep, I’d spend the time googling, trying to understand what MS actually is. This would set me off on a totally new wave of worry and hysteria and on a number of times during that holiday, Dave woke up to find me in floods of tears.

I just had so many questions. Was I going to be in a wheelchair? What happens next? Is there a chance that it’s something else that’s far less serious? What even is MS?

I learned very quickly, that forums were not my friend. They were helpful for about five minutes, but once you start trawling through posts, it gets really tough to read. It’s full of negativity and people discussing their struggles. It frightened the life out of me. The thing is, people only turn to a forum when they feel rubbish. They don’t do it when they feel good do they? No – when they are symptom free and feeling good, they’re out there, enjoying life.

I discovered a couple of apps too. One was called MS Buddy (remember the name of this. I’ve got a brilliant story to tell you about it some time). I liked the look of this one – it paired you up with someone who had the same type of MS as you. It also kept sending me these fab notifications for news stories about medicine progression. The only snag was, that I couldn’t actually read the articles as I wasn’t signed up to it yet. In order to sign up, you needed to have a diagnosis of MS.

Like the forums though, by and large, these apps were unhelpful.

I found reputable sources in the form of the NHS website along with the MS Society, MS Trust and MS-UK sites though, and I learned so much. What I write next is by no means the medical dictionary answer. There’s a possibility that parts may not even be quite accurate, but this is MS as I understand it…

MS is a neurological condition which affects your brain and spinal cord. The “insulation” that protects your nerves (myelin) gets damaged because your immune system mistakes myelin for a foreign body and just attacks it. Your body can repair that which is great, but it leaves behind scarring, lesions or signs of inflammation on your brain and spinal cord, and you may not recover 100%.

About 100,000 people in the UK have MS, so I’m certainly not in a tiny minority. About two-thirds of sufferers are female. People tend to get diagnosed in their early twenties, up to late thirties, but you can be diagnosed at any age. Nobody knows what the cause is, and there’s no cure.

There’s a number of different types of MS. Relapsing Remitting (which I have, along with roughly 85% of people with MS) is where you have obvious attacks of symptoms, where everything gets more severe than it usually is for a few weeks. Quite often, you’ll see new symptoms in these “episodes”. The good news is that with relapsing remitting MS, you can take medication, called a disease modifying therapy (DMT). It stops the relapses and prevents progression, or worsening of symptoms.

Progressive MS takes two forms, primary and secondary. In primary progressive, right from the start of developing the illness, symptoms just gradually worsen, without respite. Secondary progressive occurs when someone with relapsing remitting is no longer recovering between episodes as the nerve damage has gotten so bad.

There’s also progressive relapsing MS, where symptoms slowly worsen, but in additioin, there are attacks, or episodes along with gradual deterioration.

MS affects everybody that suffers with it in a different way. You can get symptoms in any part of your body. This means that if you know someone else who has MS, my experience is likely to be quite different, but there’s some things that are pretty common for all.

This great diagram shows what percentage of people with MS experience each symptom

Through researching, I learned that the optic neuritis I’d experienced is one of the obvious early symptoms of MS. I wouldn’t say it was an early one for me, but it was certainly the “concrete evidence” needed to go through with making a diagnosis. Neurological symptoms such as tingling, are perceived to be a bit vague, so doesn’t tend to lead to being tested for MS.

As I looked down the list of symptoms that I’d found, the whole previous six years fell into place like a jigsaw puzzle. I knew in my heart at that point that I would eventually be diagnosed with MS. I couldn’t see how it could be much else. They were all there:

  • Balance, walking and dizziness
  • Bladder/Bowel problems
  • Eyes and Sight
  • Fatigue
  • Loss of control of limbs
  • Memory
  • Spasms and Stiffness
  • Speech

Things that I’d not even tried to explain away and just thought were normal, were even coming up. I get this weird cramp and stiffness in my left leg from time to time, which often leads to my knee buckling. I imagine I look like one of those toys that I had as a kid. You know the ones – you pushed up the base and their legs gave way, and then as soon as you released the base, they would stand up normally again. I never really read too much into these. That happens to everyone. Right? (Wrong!)

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I googled “conditions misdiagnosed as MS” as well during this period of time, and although there were things that were similar to the symptoms I had, they just didn’t feel right.

After four days on an emotional rollercoaster, I had learned as much as I possibly could about MS. I resolved that I couldn’t ignore the fact that the ophthalmologist had pointed out “abnormalities on my brain” (yes I know what you’re thinking. I’ve heard that joke 100 times!)

I’d be naive to think that this was all something of nothing.