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.

What is it you’ve got again?

Over the last week, I’ve had a cough that refuses to leave me.

I’ve been to see two shows and a film recently and at all three I was that annoying person who had a fit of the loudest and most hideously-sounding coughs there has ever been. I sound like someone is strangling me, which is obviously disconcerting, or more likely irritating, to other people.

I kid you not, one woman edged away from me today like I had the plague and there was a chance she could become infected.

So, I decided to take matters into my own hands and go to a Boots to get some cough medicine, but I came away empty handed. I walked up to the counter and asked the pharmacy assistant’s advice about which type of the sugary syrup would do the trick. She asked me if I was on any medication and I said yes. Now, I expected her to ask me what I was on, but she looked at me and said: “What’s wrong with you?”

I was quite taken aback by this, as you can imagine, but told her I had MS regardless. Firstly, she asked me if that had something to do with my blood pressure, to which I said no, and then she went to speak to the actual pharmacist. On returning she recapped our discussion, but somehow my MS had become cystic fibrosis and she told me I could maybe try a particular type of cough medicine, but I was probably best of seeing my GP.

On reflection, my response may have seemed a bit rude, as I just burst out laughing and thanked her for all her “help”. It just made me think of all the times I’ve told someone I had MS and they just look at me blankly, as they honestly have no idea what I’m talking about.

Awareness of what MS actually does is lacking and more needs to be done to educate people about what it is and how it affects people. As there is at least 100,000 of us in the UK alone, which is a fair chunk of the UK.

However, when someone has no clue what you’re talking about, it’s really tempting to have a little fun with them. Next time someone asks you what MS is or does, tell them it’s infectious, it can make your hands fall off or even gives you the ability to speak to animals.

You don’t know your limit until you reach it

It’s been a while since I’ve updated my blog, not due to the MS but instead I have been suffering from an incapacitating case of “I can’t be bothered” – a serious condition that consumes a person’s interest and ability to do even the most simplest of tasks.

At the beginning of March, I went on an amazing trip to New York and got to see some of the things I had only ever seen in movies before, including the Statue of Liberty (a very snow covered one), Central Park and Phantom of the Opera on Broadway. I had an incredible time, but it did take its toll on my health to some extent.

As you can imagine, there is a lot of walking to do in New York and we went out for hours at a time, sometimes trekking the streets of the Big Apple for more than ten miles a day. I bought a foldable stick before we went just in case I struggled and although I only had to use it once, my legs hated me by the end of the trip. For around two weeks after I came back, they were still achy and tender when I woke up and went to bed.

It made me realise that you don’t really know your limit until you’ve hit it head first. I didn’t know how far I would be able to walk every day and was quite worried that it would impact my holiday or, more importantly, my enjoyment of New York. I didn’t not want to let sore legs stop me and even, begrudgingly, cracked out the stick when I felt I needed to so I could carry on.

With MS – or any other chronic illness – you can’t spend your time worrying about what you might not be able to do, as you can’t see into the future and see the outcome (but if you do possess this power please give me the upcoming lottery numbers).

My trip made me realise that I am stronger than I thought I was and if I set my mind to something I can do it if I let the niggling “what if” feelings go.

Now I’m back at home, I’ve used this mindset to motivate me to be more active and get my fitness back on track. I know what I’m capable of and it’s only my own laziness that holds me back – but only if I let it.

Don’t worry about my battles, I’ll pick my own

At some point in your life someone will have told you to pick your battles, as you can’t fight on many different fronts without wearing yourself out.

In essence, this is true, as your mind and body can’t support you if you choose to stand your ground over everything. Let’s face it, we all know that experiencing crappy service in a restaurant is favourable to experiencing sexism or racism and maybe isn’t worth getting het up about.

However, here’s where I disagree with the old adage: It’s my decision what to get angry about.

If I pay for a hazelnut latte at Starbucks and end up with a peppermint hot chocolate, I’m going to demand satisfaction, as something as small as drinking my favourite coffee can make me feel better and sometimes a bit more human.

In the same vein, if something has happened in my personal life and I feel like I’ve been wronged, I will stand my ground. And it’s when something like a fight with my family or a run in with a less-than-understanding stranger has upset me that I’m told to pick my battles and think of my health.

Think of my health? I do every moment of every single day, so I don’t really need to be reminded – that is unless I wake up with amnesia, then you can feel free to tell me that I have a chronic illness and need to think about it.

It really irks me that someone thinks they can use the fact that I have MS to diffuse an argument or confrontation. Yes I am indeed living with a disease, but no you can’t tell me to shut up because of it.

Only I am allowed to use my MS as an excuse, for example “I can’t take out the bins today because I’m ill” or “you need to make me a cheesecake immediately as I think it can cure me”.

As much as I know that the people telling me to pick my battles love me, they can’t change the way I feel about things. I do have to be a bit more careful because I’m living with a chronic illness, but I am still the same person that I was two years ago and the same things still irritate me.