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!

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!

My MS Story (Part 11)

As I came into the new year, and I still didn’t have an appointment of any kind, I found myself getting more and more frustrated with the lack of communication from the hospital. I’d been putting on this brave face, but it was wearing thin. I say putting on – I wasn’t. It was real, but cracks were definitely starting to appear. Limbo and I weren’t really getting along very well.

I’d been quite open with people about what I was going through. I’d talked a lot about losing the sight in my left eye and never really thought that it would end in such a serious diagnosis. People inevitably asked how my eyes were doing, which then resulted in a conversation about what had happened since.

I’d more or less become accepting of my unconfirmed fate, but then equally I started to worry. What if there wasn’t anything wrong with me, and there had been all this fuss for nothing? How would that go down when someone asked me how I’d got on, and I’d be saying “oh that? I was just being melodramatic and it was nothing!”

During the second week of January, I was at work and Deb asked me how I was getting on and where I was up to. Every emotion that I’d stopped myself from feeling came tumbling out. See, so many people had told me how brave and strong I was being. I felt the need to live up to that, and I made it so it wasn’t ok for me to feel what I perceived to be, the less positive emotions. But all it took was one person to ask the right question, and I couldn’t hold that brave facade.

After a bloody good cry, Deb helped me set myself some actions (I know that’s so transactional and “work like”). I needed to feel like I was in control somehow, and having a “checklist” of things to do helped that.

  • See my GP to sort out my Vitamin D (my prescription hadn’t been right and I needed more tablets)
  • Call my Neurologist’s secretary for an update
  • Contact our employee assistance programme at work. I didn’t think I needed to speak to someone, but it was probably worth sounding off to someone before it became something more serious

My GP was easily sorted, as was contacting our employee assistance programme. The bit I struggled to do was contact my Neurologist’s secretary. It wasn’t that I was trying to bury my head in the sand. I just didn’t want to be a pain in the arse.

With a bit of a nudge, I did call the hospital. When I told them my name, before I’d even said what I wanted, she told me she’d been dealing with trying to get all my records from Liverpool just that morning. I couldn’t believe it had taken that long! How hard could it be to just email over some files?

She told me that she had managed to finally get all my information together (I forgot to mention before, when I went to my first appointment with Dr Tyne, she had nothing except my referral letter. She couldn’t get access to the MRI’s and all the rest of my records without my permission). Now that they had all my information , although Dr Tyne was on annual leave that week, she was confident I would hear from her by the end of the following week.

What a relief. I had another appointment in sight.

The secretary must have sensed my stress and need to see someone for more answers, because the following Wednesday I got a phone call from her asking me if I could come in the following morning to see Dr. Tyne.

Dave had a day’s holiday he needed to use by the following Wednesday, so he was able to take the day off, and come with me to this appointment.

The best news that Dr. Tyne was going to give me that day, was that I didn’t need a lumbar puncture. She showed me the brain and spinal MRI scans, and pointed out wispy areas of white on both. These were signs of inflammation, lesions or scarring (these words seem to be used interchangeably). She had all the information that she needed.

I had MS.

She confirmed that it was relapsing remitting, and discussed next steps. I would have an appointment with an MS Nurse, and I would be referred to a Neurologist who specialises in MS, based at Salford Royal. This specialist would be able to discuss how I could medicate to prevent the progression of the disease. Dr Tyne said it would likely be oral, or injected medication, either daily or a number of times a week. She said there was a good chance that my MS wasn’t aggressive enough for anything more full on.

I left in reasonably good spirits – instead of feeling like a weight had landed on my shoulders, I felt like a weight had been lifted from them. It was bittersweet to hear my diagnosis. Deep down, I’d had a pretty good idea that that’s what it was for four months. If we include the time from when I went blind, I’d had problems for seven months. That’s a long time. I was so relieved to know that so much about how I am, was now explained. I knew I’d have more waiting to do, but the diagnosis and confirmation was the key piece of information that I needed to be able to completely come to terms with everything that was happening to me.

I called Steph to tell her the outcome of the meeting. She asked me if I was taking the rest of the day off, and the Friday off. I decided that I would, even though I wasn’t sure if I needed it. In hindsight, I’m glad that I did. I needed that time to process the information more than I appreciated.