Why I’m Running the London Marathon

I have always wanted to run a marathon. But not just any old marathon (though I wouldn’t mind being fit and quick enough to qualify for Chicago, but I love Chicago pizzas too much for that to ever happen) but London. My favourite city in the whole world. The city so close to where I grew up. The city that holds so many happy memories for me.

It helps that I love running. I’m not fast, but I can run and run and run and run and never get tired out. Running was something that I lived for. Coming in after work, changing in to my running gear and getting a quick and easy 5k out of the way before dinner. It helped me to get rid of any stresses I had, and just gave me time to relax. Getting fit was a nice bonus!

I started by only running 1 minute, and worked my way up to running 10 miles without stopping.

I always wanted to run a marathon before I turned 30. Time is now ticking.

When I first applied to run the marathon I wanted to get in on a ballot place, but was unsuccessful. This is a mighty shame, as this was pre my diagnosis and I could have easily completed the 26.2 miles.

But then of course, disaster struck. Arthritis came to me and I had to stop running overnight. I was so devastated I don’t know how I managed to drive past runners without opening my car window and throwing something at them. I’ve managed the odd run, and really hope that I get back to it.

So what better way to get back to it, than to actually do it.

Easier said than done, we know. My body isn’t playing ball. Methotrexate hasn’t had the dream results I was hoping for, and I’m always bloody tired. But I still believe I can do it.

I’m going to start ‘small’, running the inaugural Great Aberdeen Run 10k in August. No longer aiming for a sub 55 minutes, I’ll just be grateful to get round in one piece.  A few weeks after this I have a place for The Great North Run, which I hope to do a little quicker than last years disaster (but again, will be pleased to get round and survive.)

Which leads to The Ultimate. London.

Why do I want to run it? A few reasons.

  1. Because it’s a dream
  2. Because I want to prove to others I can do it
  3. Because I want to prove to myself I can do it
  4. Because I don’t want my arthritis to beat me

But also

5. Because I want to raise much needed money for Arthritis Research UK

And that’s my main motivation. I want to give back to this charity that have helped me immensely. When I was first diagnosed, their website and the leaflets available at the hospital were a lifeline for me. Even now I still access the website to provide me with my information on everything from fatigue to exercise. When I see my rheumatologist next week, I know that when I am offered new medication the first thing I will do is access ARUK website for the reliable information on it.

6. I want to run it for all of those who can’t. I want to run it for other runners who have had to give up running or up on their dreams because of the devastating effects of arthritis.

I won’t be fast. It won’t be pain free. But every single step will be worth it.

If you feel obliged then please take the time to visit my fundraising page and help me to support a charity that mean so much to me:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=RebeccaNorth2

 

 

I’m not sorry for not saying sorry.

Before I go any further I should state that I will still be apologising for when I have done something wrong, like for all the cups of tea I have knocked over and blamed on the cat (sorry Fluffy) or when I have a poor attitude and moan to my boyfriend about being too good to do the dishes. Sorry for my terrible attitude towards domesticity Jack. I may even apologise for saying that I’ll be somewhere at 10am and rocking up at 3pm. It takes a lot time to look as bad as this and I am sorry for my poor timekeeping, I really am.

But I’m no longer sorry for anything to do with my arthritis.

I’m not sorry for being in pain.

I’m not sorry for being a bit slow and limpy.

I’m not sorry for feeling unwell because of medication.

I’m not sorry for taking time off of work to attend medical appointments.

I’m not sorry for staying home instead of going out.

And I’m not sorry for being tired.

Well. That’s not true. I am sorry for being tired. Always apologising for it. Sorry for yawning at work. I’m sorry for saying I’m tired in front of the man with the young baby who looks at me like I Have no reason to be tired. Sorry for being a bit later to work than I anticipated. Sorry I can’t stay up and watch the movie. Sorry I don’t want to drive today.

I’m tired.

I feel like I have to justify my tiredness every day.

Sure, I got enough sleep last night. Lots of sleep in fact. But it’s never a restful sleep. I never wake up feeling refreshed. I go to sleep tired and in pain and I wake up tired and in pain. So the cycle continues.

Over the last one year I’ve been getting a lot better at not apologising for being in pain. I try to medicate accordingly to keep the aches and pains at bay but sometimes it’s just not enough. It’s not my fault that I hurt, so I’m not sorry. But being tired? I’m really sorry. I’m sorry I’m sorry I’m sorry.

I apologise almost every day for being tired. I can’t seem to accept the fact that not only am I allowed to be tired, I am expected to be tired. Fatigue is one of the main side effects of both inflammatory arthritis and methotrexate.

Over the last 6 working days, I have phoned in sick to work on 3 of them. Why? Because I am too tired to come in. Not in a ‘I went to bed a bit late last night and I’m now a bit sleepy’ kinda way, but in a ‘I can’t even lift my head off of the pillow let alone be trusted to drive my car to work because I might fall asleep at the wheel’ kinda way. It is an all-consuming fatigue. Brushing my teeth feels like the hardest most tiring job in the world, so on days like these, I don’t even bother. I’d rather spend the day fuzzy mouthed than have to take a nap from the exhaustion brushing my teeth can cause me.  Plus if you drink enough cups of tea you won’t even notice after a while.

The day at home isn’t spent with my feet up watching Phil and Holly on This Morning. It’s spent asleep in bed, curtains drawn all day, texting my Mum to ask her to come and look after me because I may be nearly 29 but I can’t cope with life (Mum, when you read this, thanks for everything. Now, go put the kettle on and make me a cup of tea woman!)

Fatigue has become such an all-encompassing part of my life, yet I still find myself apologising for it. I can’t accept it so I don’t expect other people to. But they do.

Not only have my family accepted my fatigue as a part of who I (temporarily) am, but so have people who I don’t know particularly well.

My work colleagues over this last week have been INCREDIBLE. Sure they like a laugh at my expense (who doesn’t. My life has become a sitcom) but they have rallied together and offered me support that has been so overwhelming it has bought me to tears. Not even just little drops hovering on my eyelashes that threaten to fall but can be dabbed away before anybody notices, but actual tears. Wails. Sobs. A big, loud, nose dripping kind of cry. I don’t need to justify to them my decision to take the day off. To take a half day. To try and work from home only to fall asleep 30 minutes after logging on. They get it. They know. I don’t need to apologise to them and more than that, they get quite angry when I apologise. I’m tired and they know it. They don’t judge me. They constantly tell me to put myself and my health first. Frogmarching me to my car, telling me to listen to my body and go home and rest.

Why, if these men at work can accept that I suffer from fatigue can I not? Why do I feel like I’m letting myself down? If I could see my fatigue would I accept it then? I wonder what it would look like? Probably a big angry bear that punches me in the face with his big bear paws when he wants me to feel fatigued. But I’d accept the angry bear because I could see him. I can accept the pain when I walk because my feet are mangled and my ankles swollen. But foundation covers a whole multitude of sins, tired eyes included.

I may never fully come to terms with how fatigued I am. My luck means that the day I fully embrace it in a big friendly bear hug, my medication will change and fatigue will be a thing of the past.

But from now on, I’m not going to apologise for my big angry fatigue bear, and neither should you.

 

It’s ok to not be ok

Hey everyone, hope you’re all getting on ok. I’m about to have my third piece published on The Mighty! I don’t think it will be on the website for a few more days, but here it is below for you. I’m sure that a lot of you can relate, would love to hear your thoughts on it.

 

It’s ok to not be ok.

How are you today?

Ok? Alright? Fine?

But what if you’re not ok today? Would you feel as comfortable replying to that question with “actually, I’m pretty down today, I had a terrible night’s sleep filled with pain and I’m on the verge of tears?” Probably not.

I’m guilty of simply replying ‘alright’ every time I’m asked how I am. On a day with good mobility, minimal pain and with a high level of energy? I’m alright thanks! On a day where I can’t walk very well because of my psoriatic arthritis and my ankle has become so swollen so quickly I’ve had to cut the bottom off my trouser leg so that it fits? I’m alright thanks!

Those of us with chronic illness often think that we must be strong all the time, that we need to show the world a brave face, to make people believe that everything is ok with us. It’s easier that way. It saves us from having to answer questions about what is wrong with us. It saves us from having to explain for the 100th time what we’ve been diagnosed with. It saves us the blank stares from people who don’t quite understand what’s wrong with us and who think fatigue is the same as being tired from a lack of sleep. Saying that we’re ok is the easy option. But it’s exhausting having to keep up the act. We’re all exhausted enough as it is without having to pretend that everything is ok.

Here’s the thing. It is ok to not be ok all the time.

I shouldn’t feel guilty for hurting and for being in pain. I shouldn’t feel guilty for feeling a little bit low sometimes. I shouldn’t expect to be ok all time. And neither should you.

There is no shame in admitting that things are hard. There is no shame in asking for help. There is no shame in not managing to go somewhere or managing to do something. It’s even ok to sometimes feel that life is falling apart. A chronic illness is life changing. It took me a very long time to come to terms with this, and truthfully, it’s still a battle. For every one good day I might have where I feel super happy and confident about my life and my future, I have two other days where life feels a struggle and I am fearful for where my life and my body might be heading. But it’s ok to feel like that.

I have also developed what I like to called chronic illness anxiety. It’s a condition that I have totally made up but one that I’m sure lots of us can relate to. It’s the anxiety caused when thinking about how your chronic illness will impact upon a certain activity or social situation. Before my diagnosis I wasn’t a particularly anxious person. Sure, I had the odd worry like everyone else, but I enjoyed a generally anxiety free life. Now? I suffer from chronic illness anxiety, caused by my crippling arthritis most days, especially on bad days or during a flare. It’s often the first thing I think of in the morning and the last thing I think of at night. From trying to work out how many hours I can manage at work based on how good a sleep I managed the night before, to trying to establish if I should go out with friends on medication day or if I’m better off staying at home to rest up and sleep it off. Everything seems to worry me. But it’s also ok to feel overwhelmed by it all. I have two diaries. One for general day to day activities and one purely to keep on top of my medical appointments. I don’t know if I’m coming or going most days. Blood tests. Consultant appointments. Physiotherapy. Podiatry. Doctors appointment. More blood tests. Not to mention trying to keep on top of taking all my numerous medications at the correct dosages. But it’s ok if it takes a while to get your head around everything that is going on. It’s ok if things seem overwhelming. It’s ok to have the odd worry here and there.

On my down days, I often wonder why I occasionally feel as low as I do. I feel guilty for not feeling ok and for feeling a little bit sorry for myself. I forget that I am ok to feel like this sometimes. My body has drastically changed and with it, my entire life. I like to think of these low moments as ‘situational sadness’. I feel this way because of what is happening to my body and what it is putting my mind through. I feel this way because one year since I developed arthritis, I’m still trying to come to terms with my new body and my new life. I am sad and a little bit low sometimes because of the situation that I find myself in right now. I don’t know for how long I’ll feel like this, but what I do know, is I’m ok to feel this way. It won’t last forever. I will be ok.

So, the next time I’m asked how I am, I’m still going to reply ‘I’m alright’, because I am. I’m alright.

 

Open Letter to my Boyfriend

Hi all, so today I’m going to posting the first piece of writing that I had published on The Mighty, and the first time that I went public on my facebook with how I’ve been doing and what a terrible struggle the last year has been. Sure some of you can relate….

An open letter to my boyfriend on how he can help me face my ongoing battle with psoriatic arthritis….

When we met, I was the life and soul of the party. A young woman in her dream career. I loved you from the moment I met you. Over the next 4 years we had some amazing times. We travelled, we had adventures, we grew together. You supported me and my addiction to running and you drove me across the country to take part in races. We had our whole lives ahead of us. Until that one morning when I woke up and I had a pain in my toe so severe I couldn’t walk. Over the next few weeks the pain got worse. All of my joints below my hips rapidly began to swell. I was signed off work. I couldn’t stop crying.

Psoriatic arthritis they said.

I want to thank you for all that you have done, and continue to do for me, but also to tell you the areas that I need a little more help and understanding.

You have remained loyally by my side, throughout the bad moments, the terrible moments, and the occasional not so bad moments. You are patient with me. But sometimes I need you to be a little bit more patient. I can’t walk as fast as I used to, and I feel a little left behind when you forget this and walk ahead, innocently forgetting that I can no longer keep up. You understand that sometimes I don’t have the strength to get out of bed. So you cover the bed in blankets and cuddly toys, and we stay in bed watching movies. But I need you to understand that sometimes I don’t even have the emotional strength to tell you how I’m feeling. That even talking feels too much. As much as I love you, and value your support more than you can imagine, I need you to stop asking me what you can do to help when I’m in my lowest moments. Not because you can’t help, but because sometimes the best help you can offer me is just to let me cry it out. I don’t always have the words to explain how I feel. Thank you for still making sure that I enjoy life. But please understand that the chronic fatigue I feel afterwards can leave me out of action for the next few days, even weeks.

Most importantly, I need you to keep talking about my condition and our joint relationship with it, because I believe it gives hope to others who may find themselves in a similar situation. That love can survive arthritis. That love can thrive with arthritis. That our relationship has become unbreakable because of arthritis. To tell other people that there are men and women out there who see past the creaking joints and the painful nights. Who will love and support you regardless. Who will even love you enough to help you clip your psoriatic toenails!!

My arthritis has become your burden to bear as much as mine. Let’s continue to walk on our journey together (slowly!) and see where it takes us….