Round 2: FIGHT!

After two years of fighting, I finally had my second dose of Lemtrada on October 24th. Now, you’d think that after getting what I wanted I’d be happy. Well, I am and I’m not all at the same time. Let me explain…

Firstly, what is Lemtrada? It is a disease-modifying drug that gets rid of your immune system temporarily in order for it to return without the “faulty coding” that makes it attack itself. It’s used for people who have very active MS and is highly effective. It’s not without its side-effects though. The most serious include: overactive or underactive thyroid gland leading to thyroid disorders, idiopathic thrombocytopenic purpura (ITP), a serious disorder which prevents blood from clotting, and kidney problems.

I had my first round in 2016 and I haven’t had a relapse between then and now. Before I went in for my second, and hopefully last, round I asked around to see what people had experienced. The general consensus was that the hospital stay was easier, but the recovery was harder. So, I went in to Salford Royal on my admission date with this in mind. However, the first day was incredibly hard. I felt dizzy, nauseous, and my legs were burning with pain. The last two days were much easier, as all I did was sleep, eat, and sleep more. Unlike round one, I didn’t need the nebuliser or develop the steroid rash.

I was released on Friday 26thOctober with my sack of medication, which included two types of antibiotic, antihistamines, and a cream that would soothe the dreaded steroid rash if it reared its ugly head. These medications were to be taken alongside the suitcase full I already take for various MS-related symptoms. I sometimes think that if I fall over you would hear the pills rattle inside me.

tom and jerry drugs GIF

The first week after I left the hospital was unpleasant, to say the least. I spent most of it on my mum’s sofa watching Four in a Bed. On the plus side, I reckon I now know how to run the world’s best B&B. My temperature was up and down, sometimes at the same time. I felt like my top half was in a sauna and my lower half was in the fridge. I couldn’t really hold a conversation, as whatever my mum said fell out of my head seconds after she spoke. To my mum’s credit, I have never known her to have so much patience! I’d ask her to get me something and I could see her having to stop herself from saying, “Get it yourself. What did your last slave die of?!”

angry wrestling GIF

Once the week was up, I asked to be dropped off at home. I missed my dog and double bed. This was met with some resistance, as my mum was worried that it was too soon. But, I was adamant that I wanted to go home, as I wanted to start trying to return to normal life.

Since then, I have had good days where I’ve been able to get up and do a few things (a bit of reading, colouring, washing, watching TV). I have bad days too, where I can hardly keep my eyes open and where showering felt like a HIIT workout. I’ve been taking each day as it comes and making no big plans. If I’m capable of doing something, that’s great. If not, I’m certainly not going to berate myself for needing to rest.

tired tommy wiseau GIF by The Room

The worst thing about the treatment for me is being stuck at home and not really being able to go anywhere. I walk the dog twice a day, which is a much-needed activity as it means I get to move around in the fresh air. But that’s where my outside life stops. Normally, I am a very busy person, splitting my time between work, gym, socialising, running errands, doing other fun outside things. Not being able to busy is killing me. I’m living vicariously through my house mate, taking a genuine interest in his work life for the first time since I met him!

500 days of summer cool story bro GIF by hoppip

Even though I’m exhausted and riddled with cabin fever, I don’t underestimate how lucky I am to have been treated with Lemtrada. It’s not something that is available to everyone with multiple sclerosis and, if it is successful, it will mean that the disease doesn’t progress and I get a better quality of life.

I’ve got another couple of weeks left before I return to work and I’m still going to take each day as it comes, while also planning a career change to become a world-famous wrestler.

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The never-ending Lemtrada saga

In 2015, I made the difficult decision to swap from the MS treatment I was on (Tysabri) and move to Lemtrada. My neurologist was concerned that Tysabri was becoming too dangerous for me to continue on, which was hard to hear given how well I was doing on it. However, the statistics attached to Lemtrada were incredible, with 80% of recipients not relapsing after 5 years post-treatment.

On 10thOctober 2015, I went into Salford Royal to begin the first round of Lemtrada. It was a trying experience that resulted in a painful rash and periods of chest tightness. The recovery afterwards was also unpleasant, as I didn’t have the energy to blink and felt very weak. Around two months after, I began to feel great. I still had the odd flare up and the pain was still there, but I had no new symptoms and no relapses.

In 2016, I went for a regular smear test and was told it had detected abnormal cells. As this is very common, I didn’t worry. I was invited for a colposcopy, which found I had pre-cancerous cells that needed to be removed. I had the laser treatment and was told I had to wait around 3 months before I could have a follow up smear. Within this period, my neurologist made the decision that it would be too risky to go ahead with the Lemtrada, as it is destroys your immune system. If I had gone ahead, I might as well have laid out a welcome mat to cervical cancer.

The follow up smear came and went, and I received an admission date for my next round of treatment. Two days before this date, I got a mangled letter in the post – damaged so much, it was in a plastic bag covered in apologies from the Royal Mail. The letter stated that the pre-cancerous cells were still present and the gynaecologist would be recommending to my neurologist that I didn’t go ahead with the Lemtrada. I was devastated, so upset that I collapsed in a heap on the kitchen floor. I felt like my life was on hold until I got this treatment out of the way, so I begged my doctor to let me go ahead, but she wouldn’t take the risk.

So, I had the laser treatment again and waited 3 months for a follow up smear. The results came back in August, stating that there were still borderline cells present, but they were not concerned. My neurologist was happy to go ahead and booked me in for 3rdOctober.

I got everything in order – getting someone to look after my dog, printing off the dietary requirements for post-treatment and informing work I’d be off for a month. I arrived at the hospital at 9am and at 1.30pm the doctor told me that the bloods they’d taken in the morning had come back showing a severe infection and I would need antibiotics. Nothing she said sank in until she told me that I wasn’t allowed the Lemtrada.

Once again, it had all come crashing down around me and I began to sob, so hard that I couldn’t breathe. I am not a cryer and I rarely get emotional, especially not in public, but I couldn’t hold it in. Something that I had fought hard to get for almost 2 years was once again snatched away from me. I went home and spent the following few days getting drunk and feeling sorry for myself. I kept asking myself “what’s the point of life if I can’t move on and I’m stuck in a rut”. I couldn’t see past this roadblock.

Yesterday, I decided to take back to back some control, and try and make sure that I wouldn’t be turned away for a third time. I booked myself into the blood clinic a week before I’m due to go back in, to see if the infection is still present. If it is, I have decided to push back my treatment until after Christmas, as it’s my 30thbirthday in December and I intend to start my 30s the way I want to.

I am angry, but completely understand why my treatment has been cancelled twice. While I understand, it doesn’t make me feel any better. However, I refuse to let MS dictate how I live my life. I live on my terms and not at the beck and call of MS or Lemtrada.

 

It’s time to clean house

What happens when you compartmentalise so much your boxes start to overflow?

That’s how I feel right now. Like my brain is about to burst out of my skull and all the things I’ve been trying to cope with will start to pour out of my head.

Last Monday, I was getting myself ready to go into hospital on Wednesday. No one ever really looks forward to going hospital – unless you’re treating yourself to something like a boob job, I suppose – but I was ready to close this chapter of my life. I was getting ready to have the last round of my Lemtrada, which means I might never relapse again and I could finally get on with my life.

I came home to a letter that informed me the cancerous cells that were found in a routine smear test last year were still there, even though I’d had the laser treatment. I knew what was going to happen, even though I didn’t want to accept it. My neurologist was going to tell me that she wouldn’t risk destroying my immune system with the Lemtrada, as that could provide the cells the chance to turn into cancer.

Until I heard her say that down the phone the following day, I’d tricked myself into believing that it was going to be my choice. I could be allowed to decide which was worse: an MS relapse (which could cause irreparable damage to my body) or cancer. All I could think about was the fact that I’m not even 30 yet and I’m having to make decisions like this. In the end, I didn’t have a choice. I suppose I’m glad, but it felt like I was losing even more control over my body.

Disease is so invasive and isolating. It feels like your illness dictates what happens in your life, all choices are taken away from you and all you have left is a seat in the passenger side of the car. You can see what’s happening, but you can’t change it.

I had to take some time off to think about this turn in the road, to digest it, I guess. I spent the week getting drunk, crying, swearing, sometimes screaming. All I kept thinking about was how life had fucked me over, yet again, and how all I have is bad luck.

We make our own luck. Bad stuff happens, and that sucks and can feel so overwhelming that it feels like you are drowning in your problems. But, you can’t spend your life wallowing and thinking about what could have been. Life moves forward and you have to move with it. If you don’t, you’ll be stuck in the past, reliving all the wrongs that have been done to you. What kind of life is that?

When your boxes are full, you clean house.

 

What have you done for me lately?

Body hate is an easy trap to fall into these days. We’re bombarded with images that have been heavily photoshopped or use clever lighting ticks to lure us into a false sense of belief that the “perfect” body exists. We look at these photos and hold them up against our bodies for comparison – something that just leads us to tear our own appearances apart.

I’m guilty of this damaging behaviour, particularly when I have been at my lowest points. I’d look at my reflection and tell it that it was too fat, my stomach was too wobbly, my thighs too thick, my chin to angular, or my face too blotchy. This self-hatred escalated into actual harm against my body when I was younger and eventually developed into me spewing vile, toxic hatred at my own image. I said things that I would never let anyone else say to me, not without punching them!

I felt like I didn’t have any value or worth, a feeling that worsened when I was diagnosed with multiple sclerosis in 2013. I genuinely believed that my body had betrayed me in the worst possible way. I became even sourer towards myself, berating my body whenever it failed to do something that I wanted or needed it to do. On top of being fat and ugly, I was now disabled. The disgust I felt kept bubbling up my throat, poisoning my perception when I passed a mirror. This continued for years and it took a real tragedy to force me to change how I viewed myself and my body.

In September 2015, my relationship of seven years suddenly dissolved – which actually turned out to be the best thing that’s happened in my adult life – and then two months later my Nan died. She was one of the pillars of my life, a constant source of love and support and one of the best people I have ever known. I felt like someone had kicked me in the gut and pushed everything in my life into a shroud of insignificance. A few months later, I looked at the mirror in my bathroom and realised how much my body actually did for me. This body that I believed to be hideous and useless was stronger than I ever could have imagined.

Trembling legs that felt that they were filled with burning hot lava stilled carried me every day. Arms that twitched, lost feeling and hurt still allowed me to lift weights, making me feel stronger than I ever have. My eyes still let me read and my hands let me hold cutlery, allowing me to do my two favourite things: eating and reading! My mind was still inquisitive and hungry to learn, even though I sometimes felt that I was forgetting important things.

My wobbly stomach and jiggly thighs just didn’t bother me when I thought about how much my body had done for me. It had kept me going through some of my hardest and darkest times, meaning I was doing it a disservice by being so cruel and negative towards it. I love myself and the skin I am in, and having MS has made me respect by body in ways that I never knew I could.

I’m not saying that it takes tragedy to make us see that we are fine the way we are and I’m definitely not suggesting that you can just switch off the negativity. It’s a process and it takes time, but you just need to keep telling yourself that you are enough, you have worth and you are stronger than you know.

Ready for round two?

The last month of 2017 was terrible. I was waiting for important test results, my drink was spiked on a night out with my best friend, and then I was involved in a car accident that saw my beloved Mania being sent to the scrap yard.

It was an ungodly trinity of crap – but then things took a turn for the better. My test results were clear, my claim was finally settled, and I finally had a date for my next round of treatment.

Everything was coming up Leigh!

It hit me today that in five weeks I’ll be in hospital getting my last (hopefully) round of Lemtrada. I told myself that this was great and could mean that I never have a relapse again. In the past, MS blinded me in one eye, semi-paralysed my left side temporarily, and stopped my hands from working properly. These relapses came and went, but they were terrifying. I constantly questioned whether this would turn into something permanent.

I’m not going to lie, I am scared of the treatment itself. There was no waiting with my first round, as I came back from a holiday on the Friday and found a letter telling me I was booked in for the Monday. I now have five weeks to sit and stress about what the three days in hospital could be like.

The treatment strips your immune system down and allows it to rebuild, hopefully without the MS niggles. I can’t help but remember what the first time was like, how hard it was on my body, and how I just wanted to give up half way through. There were times were I couldn’t breath and there were times that my body was covered in a rash from the steroids.

However, I am determined to not spend the next five weeks worrying about what could be. I am going to appreciate how incredibly lucky I am that I have been given a treatment that could change my life in ways I couldn’t have imagined a few years ago. Once this round is over, I can go anywhere and do anything.

Lemtrada has opened my world, and I am truly grateful.

It’s OK to be scared of things. The trick is to stick to the facts and take comfort in the numbers.

Lemtrada has reduced relapses by as much as 70% in patients over a five-year period. I have been relapse-free since 2013 and I am damned sure I want that to continue.

Over the next few weeks, I have plans to see some of my closest friends, get drunk and be silly. My house mate has a plan of action for when I get out of the hospital – involving a Blu-ray player, an Xbox and lots of homemade chilli.

I am ready (kinda) for the next step of my journey and I’m going to take care of my body, the way it has been taking care of me since my diagnosis.

 

 

Stop the ride, I need to get off!

I’ve slipped into a cycle of waking up, telling myself today will be a good day, having a shit day and then berating myself for not having the good day I wanted. You may recognise this as something you do every now and again, or every day. This kind of mindset is damaging because it causes us to attack ourselves for not being perfect, when the truth is that no one is.

We live in a world that is photoshopped, edited and manipulated to make us feel that we’re not doing our best or trying hard enough. Behind the filters, celebrities are just people that have been shaped like Play-Doh by publicists and the media to appear to be super-humans. These demi-god like creatures have no apparent flaws and we are left in awe of them, wishing we could be just like them. But their public images are not real, instead they exist in a reality based on a suspension of disbelief.

When our lives don’t measure up to this false reality, we start to attack ourselves, believing our bodies aren’t good enough, our careers are moving fast enough or that we are missing something in our lives to make us truly happy.

You are never going to achieve perfection, because it doesn’t exist. Happiness can happen even if every part of your life doesn’t match up to what you see on Instagram or in the Daily Fail. You can be happy if you have stretch marks, if you have a disability, if you don’t have a job that pays a six-figure salary, if you’re single, and if you have kids or if you don’t.

The trick is self care. This means taking care of our minds and bodies, and carving out time in our busy lives to look after ourselves. Today, I woke up and realised that I couldn’t face going to work because I am having a bad mental health day. I realised that I needed to take some time out for myself and focus on boosting my mood. So far, this has involved eating a good breakfast and sitting on the sofa in my pjs watching Law and Order.

I’m not chastising myself for needing this time, which is what I would have done a few years ago. I used to be incredibly cruel to myself, critiquing everything I did and telling my reflection that I wasn’t good enough, pretty enough or smart enough. Those days are gone, but bad habits creep back in when I’m feeling low. These habits push me back into negative cycles:  wake up, tell myself today will be a good day, having a shit day and then berating myself for not having the good day I wanted.

The difference between now and a few years ago is that I recognise these cycles of negativity as damaging to my health and I take the time out I need to reset and get back to feeling like the happy, confident woman I am. There’s no shame in feeling like shit and you should never feel guilty about investing time in your own mental or physical wellbeing.

Flora’s story is important, but it doesn’t speak for everyone

Flora Lormier’s life and death has opened an important discourse about a person’s right to die, but her experience shouldn’t be perceived as something that everyone with multiple sclerosis will have to live through.

In case you didn’t catch it in the news, Flora’s family released some heartbreaking images of her ravaged body to try and get the government’s attention. They want the law to change so that people who have no quality of life can decide when to die, allowing them some element of control when they lack this over their own body.

Flora – who’d been diagnosed more than four decades ago – became paralysed from the neck down two years ago and slowly withered away to just skin and bone. There is no doubt that she suffered and that her family were left helpless against this horrendous disease.

I 100% support the right to die argument and I feel like she should have been allowed to end her life on her own terms. At 28 years old, I’ve already told my mum that if I deteriorate due to MS that I would want to die and I would encourage anyone who feels the same to make their wishes known while they can.

While Flora’s story raises some important questions that need to be answered, I feel like someone had to say that her experience isn’t indicative of the life anyone else with MS will have. I know that if I had been newly-diagnosed and had seen her story on the news I would have been devastated for both her and myself.

I would have been convinced that I was seeing my own future in her and I think the shock would have been extremely hard to move on from. Just as every person it affects is unique, the toll MS takes on your body is different for everyone. There will be people who experience a single relapse and the disease never rears its ugly head again and there will be those that never recover from that first relapse.

We don’t have a crystal ball that we can look into and see where we will be in five, ten or fifty years. All we can do is take the time to accept our diagnosis and then carry on with our lives just as we intended to. As clichéd as it sounds, we have to take each day as it comes and be grateful for the days when MS isn’t bothering us.

It’s vital that we don’t think of our lives in terms of just our illness. We have MS, the MS doesn’t have us.