Rebecca North

@rebecca-north-1 | contributor
A former middle distance runner who now struggles to put her own socks on. Developed severe Psoriatic Arthritis in April 2016 at the grand old age of 27. Diagnosed in August 2016. Also suffers from joint hyper-mobility and psoriasis. Aiming on somehow running the 2018 London Marathon with PsA. A full time worker and a part time student in the North East of Scotland. Enjoys good cups of tea, good books and good sleeps. Blogs at www.sensibleshoesociety.com
Rebecca North

Why It's OK to Not Be Strong All the Time When You're Sick

How are you today? OK? All right? 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 “all right” 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 all right, thanks! On a day when 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 all right, thanks! Those of us with chronic illness often think 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 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 call “chronic illness anxiety.” It’s a condition 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 have chronic illness anxiety, caused by my 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. Doctor’s 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 that it’s 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 all right,” because I am. I’m all right. And so are you. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by fcscafeine

Rebecca North

What It's Like Having a Psoriatic Arthritis

“You have what? Sorry-attic arthritis? Don’t you mean rheumatoid?” Well, good meaning but misguided work colleague – no, I do not mean I have rheumatoid arthritis. I’m sure most of us with psoriatic arthritis (PSA) have heard similar comments when explaining to people what our condition is. We’ve all seen the blank stares looking back at us from people who don’t know what psoriatic means. The confused look when they try to get their heads around the fact that there are more types of arthritis than the two most famous ones, rheumatoid and osteoarthritis. Granted, it’s not the easiest to explain. Even now, 10 months after I first developed PSA, I can’t answer the question of, “What is it?” much better than saying, “Very annoying and very painful.” It is usually, but not always, an unwanted side effect of having another stubborn auto-immune disease, psoriasis. I find sometimes the best way to describe it is to say that it’s like the psoriasis on my skin (at which point I roll up my sleeve and show them my red and scaly arm), but instead it is damaging my joints through inflammation. It makes my joints swell so rapidly and to such a degree I often look like a misshapen version of the Hulk. They usually get the idea. “You have arthritis? My Grandma has arthritis.” Whilst I’m really sorry to hear that your grandma has arthritis, it’s unlikely to be the same kind. It’s not impossible, but it’s unlikely. Mine hasn’t been caused by years of wear and tear, nor from generally getting a bit older. Mine came out of the blue at the tender age of 27. “I slept funny last night and have hurt my shoulder, I know how you feel.” Thanks for the empathy, but sore bones aren’t just what I feel. Psoriatic arthritis also has a lot of hidden symptoms that people can’t see, and sometimes it’s easier to not mention them to people at all. For example, all 10 of my toenails have become riddled with psoriasis. They have lifted off of the nail bed, they’re thick and crumbly and very very painful. So, I’m having each of them permanently removed. It’s grim, but necessary. The second toe on my left foot has fused in a bent position and will require surgery. It has no movement and means that I can only wear comfy sneakers with enough room to accommodate it. Another hidden symptom is that the two toes next to the fused claw toe are starting to bend over each other towards my big toe, which will also require surgery. Who knew that something that is generally thought to just make joints hurt could cause such disfigurement and devastation? I’m sure many of you also suffer from the horror of plantar fasciitis, and also have to use orthopedic insoles. Psoriatic arthritis is so much more than painful joints. Don’t even get me started on the fatigue. Psoriatic arthritis can be a lonely condition to have. Those with PSA often feel left out because we can’t join the bigger club of rheumatoid. Sometimes I’m left feeling like a fraud in arthritis support groups online when I’m the only one with PSA. Meeting people who have arthritis or who have someone very close to them suffering from it, but it isn’t PSA, and they’ve never heard of it. I’ve very briefly met one other person with it and it was a bizarrely happy moment. I’m not alone! Others like me exist! I’m not making it all up. But maybe that’s the beauty of having PSA. There aren’t that many of us. We’re VIPs, specially selected to join the club. Sure, it’s not a club any of us would want to join, but membership is free so we might as well join and make the most of it. Chances are we’re the only person with PSA that a lot of people in our lives are ever likely to meet. It’s our duty to stick together to teach the world about PSA and banish those blank confused stares forever. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Rawpixel Ltd

Rebecca North

To My Boyfriend: How You Can Help Me With My Psoriatic Arthritis

When we met, I was the life and soul of the party, and a young woman in her dream career. I loved you from the moment I met you. Over the next four years we had some amazing times. We travelled, we had adventures, we grew together. You supported me and my passion for 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. They said it was psoriatic arthritis. 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, 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 them 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. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: thanaphiphat