From zombie to fully functioning adult (ish): My Lemtrada journey

When I was having to use the nebuliser to relieve the tightness in my chest I thought I had made the biggest mistake of my life by choosing to swap to Lemtrada, but I was completely wrong.

In the first few weeks, everything was a little bit harder. When I got up off the sofa or bed – where I spent a lot of time and built some sort of fort – walking felt like I was trekking through thick custard. When someone asked me a question, it took longer than usual for my brain to process the words and I felt like my voice was slurred – all the symptoms of being drunk, but none of the fun bits.

I had to take four weeks off work minimum and my MS nurse gave me a lengthy list of restrictions to follow – such as following the pregnancy diet to avoid listeria, avoiding children (as are like taxis for viruses) and forgoing activities that involved being in confined spaces with air conditioning. This meant that I had to stay away from the cinema and the gym, as the ventilation system spreads bugs without you having to come into contact with other people. I’ll leave that there for anyone planning a cinema trip.

Avoiding the gym was hard, because exercise has done so much me for over the last 12 months. I’ve lost around 40 pounds and found a way to relieve some of the pain that the MS helpfully causes. It has lifted my mood and help me re-focus my life, after the horrendous time I had last year. As the nurse was telling me to not step a foot in the gym, I was imagining that I’d only need a few days’ rest and I could go to the gym when it was quiet – I mean, I didn’t really need to follow all the advice right?

Firstly, that was a pretty dumb idea, especially considering I managed to catch an infection before I left the hospital. If I could pick something up there, then I could definitely contract something from the gym. There are a few people that seem to wear the same gear day after day and I rarely see people wiping the equipment down, which actually grosses me out the more I think about it. So, my love of the gym was not greater than my love of being alive.

Plus, I was so tired that blinking felt like hard work. Actually, every thing felt like a struggle. Walking, talking, sleeping and eating – the latter is something I’ve never had a problem with. I felt like I would never feel normal again, that I would spend the rest of my life as a zombie.

However, it’s been seven weeks since I had my first round of Lemtrada and I honestly feel fantastic. I’m back at work, back at the gym and back to feeling like my old self – and by that I mean by pre-MS self. I haven’t had any flare ups, there has been minimal pain and I feel like the cognitive issues I was experiencing (such as jumbled words or being unable to find the words I needed) have cleared.

I’m not sure what the long-term effects of the treatment will be. Maybe this is some sort of honeymoon period that won’t last or maybe this is what life will be like from now on. I don’t worry myself with these thoughts though, I’m taking each day as it comes and I’m grateful for every ‘good’ day I have.

Everyone who knows me knows that I am a pessimist by nature and I don’t always see the good in things. But this is different. I’m looking forward to the future as a Lemmie (yes we have a name, maybe I’ll suggest biker jackets for us) and I’m pretty sure I’m prepared for whatever happens.

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My recovery is….zzzzzzzz

It’s been just over three weeks since I was released from the hospital and I think it’s safe to say that I’ve got cabin fever. I want to work out at home, but I’ve been so tired that even sitting on the sofa and trying to concentrate on the TV is proving to be hard work. I want to read the mountain of books that I’ve acquired, but I can feel my eyelids become heavy after reading just one line.

I think I completely underestimated the toll the Lemtrada would take on my body. I thought I’d be in hospital for a week and then back to normal at the weekend. Instead, I’ve been moping around my house and napping. I’ve become really good at napping. So much so that I can do it anywhere – in the bath, in bed, on the sofa, on the floor and even sat at the dining room table when sorting through my washing.

Before the treatment, I was hitting the gym regularly – around 5 times a week – and I was working out some aggression through MMA classes. I really miss working out, but considering I sometimes have to take a break when walking up the stairs I think my return is still a while off. I’ve been trying to do some yoga and it’s teaching me that I am as flexible as a piece of Blackpool rock. I’m really looking forward to getting back though, as I managed to lose three stone through hard work and perseverance.

This is me in March 2015 compared to September 2016

The plethora of dating apps that I’m signed up to are providing me with endless sources of entertainment, as it turns out I can still come up with responses to idiots that sting. I also started teaching myself how to play guitar again, but then I trapped my fingers in my car door. It would appear that the Lemtrada hasn’t made me any less clumsy.

I’m trying to stay positive, because even though I’m about to go Rear Window on the neighbours, if the treatment works like it should I will be able to get on with my life without fearing an MS relapse. Instead, I concentrate on important things like what food I can eat and drunken nights out with my amazing friends. I’m counting down the seconds until I can stop the pregnancy diet. I will celebrate with a block of brie.

A new beginning?

In 2013, I was diagnosed with rapidly-evolving relapsing-remitting multiple sclerosis after losing the sight temporarily in my left eye and then the use of the entire left-hand side of my body. The diagnosis was devastating to me, but I was lucky – it was caught early and I was able to start a treatment that could reduce my relapses by up to 65%.

That treatment – Tysabri (Natlizumab) – changed my life for the better. In the three years I had the monthly infusions I didn’t have a single relapse. The chronic pain and flare ups were still there, but I could handle that. As with all medications, there were side effects, with one in particular being pretty serious. I was at risk of contracting a condition called progressive multifocal leukoencephalopathy (PML), which is typically fatal.

It is caused by something called the JC virus, which is present in everyone, but is kept in check by our immune systems. You are either positive or negative, with the risk of PML only really an issue for the former. The risk is low until you are on Tysabri for two years, when it jumps to one in 100. While this statistic worried me, it didn’t compare to the uncertainty I felt about coming off the treatment. However, earlier this year, my neurologist told me that she was no longer happy for me to stay on Tysabri and I had to consider new options.

I often make jokes at my own expense when it comes to my health, as I find humour helps me deal better. But, I am in pain all the time, I have bladder problems, vision problems, I often lose the use of limbs for short periods of time, and I have limited sensation and dexterity in my hands. I tried really hard to think about what she had said logically, but all I could do was cry. Tysabri had given me a new lease on life. It had allowed me to find the strength to train hard at the gym, shed three stone and not let MS interfere with how I wanted to live my life.

But it could kill me or lead me to have an even worse disability.

The two treatments I was offered was a tablet called Gilenya (fingolimod), which still carried a small risk of PML, or an infusion of an anti-cancer drug called Lemtrada. I never really considered the tablet, as was less effective against relapses than the infusion and still had some PML risk attached to it.

Lemtrada only needed to be administered twice – over 5 days in the first year and three in the second year – its effectiveness against relapses was comparable to Tysabri and 65% of people who’d been given the drug had never had a relapse again. These were impressive stats, but, of course, there are side effects. It can cause liver problems, thyroid disease and a low platelet count, plus the infusions themselves can cause rashes and chest tightness. The drug basically destroys your immune system, allowing it to rebuild without the problems caused by MS (hopefully).

This process can take up to 6 months and for around 4-6 weeks after you are vulnerable to infection, as there is nothing really in your body to fight off viruses. You also must be monitored through blood tests every 4 weeks for 5 years, so that your doctor can look out for signs of the side effects.

All of this sounded horrendous, but those impressive stats kept creeping back into my mind. The thought of never having a relapse again filled me with a new hope, one that I hadn’t felt since before my diagnosis. It could help me regain ever more control over my body and life, so I decided it was a risk I was willing to take.

I had my treatment at Salford Royal Hospital, under the care of an amazing team of nurses who helped me at every step of the process. It took a tremendous toll on my physical and mental health, with some days seeing me use a nebuliser more than once to help loosen the restraint I felt in my chest. There were days were I couldn’t find the energy to sit up or cross the corridor to use the bathroom. Showering, eating and even blinking were exhausting tasks. I couldn’t imagine having to have this drug alongside chemotherapy, which is how it is also used to treat cancer.

The week sucked, but I knew it would come to an end and on the Friday and I could recover in my own room. However, I couldn’t leave until the following Monday, as I managed to catch an infection before I even left the hospital! This made me realise how vulnerable my body was and how I had to look after myself and let everything else take a backseat for a while.

I’m now at home, trying to rest and recover. I’m finding it hard to sit around and do nothing, so I’ve decided to journal the days and weeks after my initial treatment. I’m hoping that this helps other people who have been offered Lemtrada to make their own decision about their future.

You drive me crazy!

I have a complicated relationship with my driving licence.

Some people may feel like that’s an odd statement to make about an inanimate object, but bear with me.

I started to take lessons at the age of 17, mostly because my mother pestered me about it constantly until I agreed to find an instructor. I went through a few as the school I originally contacted kept sending new people. I would open the front door and be looking at a stranger every week, who wanted to see what I could already do before learning anything new – a ploy, I’m sure, to make more money.

Finally, I found an instructor who stuck with me – which he did for almost two years. Within this time, I failed my test six times and decided that I would never pass so I should probably give up. On my very last test, I got myself into such a state of panic that I had to stop the car and throw up.

So, I threw in the towel and decided to become a full-time pedestrian – except for short space of time I had a bicycle before it was stolen. Just after this, I got ill, leading to my diagnosis of MS in 2013. Even if I’d wanted to take it up again, my health became my number one priority, pushing eating cake into second place and driving to about 100th.

I also clung on to the fact that out of my parent’s four children, only two of us had passed our driving tests. However, this changed and I became the only one – and then I became the only one who didn’t have a fiancé or spouse (another story entirely).

In the three years it took me to decide to give driving another go, my mother had mentioned it in passing a few times. This changed as soon as I said I was interested again. Suddenly, she was on the phone to everyone she knew with kids, asking for the names of the instructors they’d passed their tests with. The intensity grew even more when I actually got back behind the wheel, as she’d asked me every week when my lesson was, if I was definitely having one and how did it go.

My very patient driving instructor was an irritating well of optimism, never once accepting that I felt I was crap at driving. But, he helped me pass on the seventh time. I think the nerves didn’t really hit me as hard this time, as life had shown me there are more important things to worry about that getting sent a pink piece of plastic in the post.

I quickly bought a car – he’s called Mania, as his registration starts ‘WM’ – and hit the open road.

Not really the open road, just the roads to Leeds, Sheffield and Manchester City Centre to be precise.

I can now confidently say that I hate driving. I mean really, really hate it. I can see the upsides (freedom, no public transport, sitting next to strangers and car-eoke), but the downsides are enormous (city centre driving, almost running over pedestrians and rolling into the back of your mother’s car while she’s sat in yours).

Here are the things I’ve learned so far:

  • Driving is lonely, as the only person to talk to is the breakfast radio DJ who can’t answer back.
  • Driving is boring. All there is to look at is the road, other cars and the occasional sheep.
  • Driving is scary. I almost ran over the same pedestrian three times in the space of 15 minutes in the city, as she kept crossing without looking and had headphones on. If her ears had been free, she’d have heard me offer to lend her my glasses to look where she’s going and possibly some expletives.
  • My favourite word to call drivers who cross me is ‘slag’, as in ‘YOU SLAAAAG’.
  • I don’t like having passengers, particularly my parents. My mum makes noises like ‘ooh’ and ‘argh’ because I’ve told her to shut up and stop telling me things are in front of me. I have my own pair of eyes, thank you very much.
  • Singing in the car is a positive. I like to belt out power ballads very loudly and I don’t mind other drivers being able to see, as I’m providing an entertainment service.
  • You can’t snack and drive. Eating a croissant will lead to your interior being covered in flakes of pastry – you have been warned.

Some things are fleeting

It has been a while since I last blogged and a lot has changed. In September last year, a month-and-a-half after moving in together, my partner of seven years left me. He said he “couldn’t deal with my problems any more”. I was crushed, completely unable to comprehend what had happened and it floored me. I thought that there was nothing in the world that could make me feel any worse, truly believing that I had hit the bottom.

But life has a way of putting things into perspective for you. In November, my wonderful and brilliant Nan died unexpectedly. The heartbreak I had felt for my dead relationship didn’t matter anymore because I had lost one of the most important people in my life. This person had been there from the moment I was born and I couldn’t imagine trying to live without her being at the end of the phone. All I could think about was how I had failed her as a granddaughter, as I felt like I hadn’t been to visit enough or called her as often I should have.

I can’t properly explain what happened from there, as people can never really put into words how they feel when they slip into a depression so dark and overwhelming that it feels like there will never be light again.

Funnily enough, my MS didn’t really bother me during this time. Any pain I experienced seemed fitting to the emotional agony I felt inside. I didn’t want to be me anymore as I couldn’t see the point in being alive. To me, I no longer had any value as a human being. I repeatedly told myself that nothing would change and that it would only get worse. And for a time, it did. I let myself feel this way for a couple of months until I decided to go and see my doctor. There wasn’t a ‘eureka’ moment where I had found divine inspiration to get better. I just felt like living in the dark was a strain, one that would continue to build if I didn’t confront it.

While the NHS has its flaws, I am lucky to say that I have a fantastic relationship with my GP. She recognised instantly how distressed I was and referred me for counselling. She also made follow up appointments to check in with me to see if I was feeling better. Eventually, I did start to feel better. It didn’t happen overnight and I didn’t wake up one morning filled with unbound glee. It was more like I was slowly roused from a deep sleep.

I can honestly say that things are better now. I finally passed my driving test (after six failed attempts), I bought a car, I’m going out with my friends again, and learning to enjoy life. I’m trying my hand at dating again, and while it’s not proved to be successful yet, it’s certainly being entertaining.

For the first time in a long time, I can say that I’m looking forward to what the future holds.

To tell or not to tell – that is the quesion

Trying to find a job isn’t the easiest of tasks most of the time, but it gets a little bit more complicated when you have an illness or disability. Do you tell them when applying, in your interview or once you’ve been offered the role? Maybe, you don’t ever tell them.

I feel like I’m walking through arrivals at an airport and can’t decide if I should go down the corridor marked “Nothing to Declare” or if I should head straight to customs and let them know I’m carrying something I shouldn’t be.

It’s times like this when it feels like MS is my dirty secret – something that would make others feel weird by discussing it. But, maybe that’s my own paranoia, which stems from the way people with disabilities are portrayed in films, TV and wider media – either as someone to feel sorry for or someone to fear. Last time I checked, I’m neither of these.

Would a company feel obliged to offer me the job if they knew or would they decide they didn’t want to take on the “responsibilities” attached to hiring someone with a chronic illness?

This MS thing is all a bit of a headache, adding extra complications to by life than there were before. But, it’s also made me stronger and more able to deal with things that are thrown my way, so I’m not going to let it make job hunting any harder than it has to be.

I think I’m going to say I have MS on some applications and not others, mention it during a few interviews and not all – just to see what happens either way. This could backfire spectacularly, but you never know until you try, right?

What are your experiences of job hunting with a chronic illness?

There is no turning back

When I was first diagnosed with MS, a lot of people tried to tell me how much cleaning up my act would help, but I just wanted to ignore the world and pretend that the doctors had got it wrong. It’s taken me more than two years to realise that they were right.

Now, I haven’t turned into a fitness bore – something I don’t think my friends and family would agree with – but looking after my body has made a huge difference. Around four months ago, I went to visit my best friend and I was stunned by her transformation. The most obvious change was the four stone weight loss, but it was clear her positive mindset had made the biggest difference.

On the train home, I had a word with myself and told me to have a good luck at my life and ask myself if I was happy? The answer was no. I was miserable, I’d gained a huge amount of weight –some of which medication was to blame for and the rest was me eating my feelings. All I could think about up until that point was how crap things were and how crap they were going to be tomorrow.

I began to make small changes and saw a difference pretty quickly. Instead of getting the bus, I’d walk 25 minutes to get the tram work. Rather than reaching for a Yorkie when I was peckish, I took advantage of the free fruit at work. And, I finally brushed the dust of my gym kit and actually went for a workout.

Just recently, I discovered this app called Headspace, which helps you find ten minutes a day for just yourself and whatever you’re feeling. It’s made a huge difference, as it helps me to balance all that’s whizzing around in my brain and understand that they’re just thoughts. Nothing more.

So, I’m 30 pounds lighter – losing weight physically and mentally – and for the first time in a long time, I’m feeling great. MS hasn’t really entered my mind in months, expect the infusion I have, but even that has become more of social event as I’m finally in sync with my friend’s rotation, so we just chat and plan our next dinner date.

However, the stress has been building lately. I’ve picked up a second job to help me save some cash, I’ve been house-hunting with my boyfriend (who, by the way, is truly amazing) and I have been having some problems in my job. It all got a bit too much on Friday and I went to the bathroom and sobbed – something I have never done before.

It wasn’t long until the pain was back in my thighs and calves, feeling like a fire was burning through my nerves. On Saturday, I couldn’t walk properly and my boyfriend ended up having to flag a cab for a five-minute walk, which was gutting. I felt utterly useless as a human being.

I was back to square one and started feeling really sorry for myself. How could this be happening again, after all the progress I’d made?

Well, it wasn’t, because I wasn’t going to let it. I realised that I can change my job, I won’t have to work so much forever and house-hunting isn’t something to get stressed about. I woke up today still in pain, but with the resolve that there was no way I was letting myself down by falling back into a dark place I’d worked so damn hard to climb out of.

I got up, got dressed and dragged myself to the gym. It wasn’t easy and I really wanted to collapse halfway through a class. I didn’t. I finished, red-faced and sweaty, but feeling amazing.

Four months ago, I made a promise to myself to keep going no matter what.
Martin Luther King said: “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” That’s just what I intend to do.