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.

 

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….

Acupuncture. Part 1.

Hello lovelies,

Today I am going to talk about my first acupuncture session.

Acupuncture is something that had been suggested to me by numerous different people but something I never really considered because I was incredibly sceptical. I also have an incredible fear of needles and I am an over thinker and worrier. So even just thinking about acupuncture was too much for me. I would imagine every negative scenario that could happen, from rolling off the bed and becoming a human pin cushion, to thinking what would happen if I was just left on the bed and the acupuncturist went home (Spoiler, neither of these things happened.)

However, on a particular painful Friday at work, I booked a session on a whim with a man who was highly recommended by everyone I spoke to. Expecting a long wait time (which would have allowed me to cancel the appointment when my fears got too much), I was given an appointment for the following Monday. Just 3 days later. No time to pull out of that one! What will follow is my summary of my first session, followed by my top tips for acupuncture.

Session one

My acupuncturist had a good look at my tongue, took my pulse, listened to my tales of arthritic woe and examined my dodgy joints. Before I had any time to think of it, I was lying on the bed, sleeves and trouser legs rolled up having the needles inserted. I had four in my left shoulder, which went from normal to incredibly painful and stiff just two weeks before. One in my right wrist, which often ‘seizes’ up, and I have to shake it out for it to click and feel normal again. One in each knee, which have both had previous bouts of severe swelling and steroid injections. One in my right ankle, which is perpetually slightly swollen, and 4 in my left foot. The problem foot. I had one between each of my toes.

Truthfully, I didn’t feel the needles be inserted. There was no pain. I was only mildly aware of the needles going in to my knees, and I think that was because he slightly moved the needles to get them into position.

I was then advised to relax, close my eyes, and try and have a nap. Easier said than done! I started to relax as the session went on but I didn’t get the nap I was hoping for. I think I was left like this for 20 minutes before he came back and gently removed each of the needles, wiping each area down as he went.

After the session, I definitely felt *something*. I don’t quite know what I felt. Relaxed. A little bit out of it even. I felt nice. I booked another session for a fortnights time, no longer quite the sceptic I was.

My only concern after session one was that the needles had left very blue bruising on my left foot. It wasn’t painful, but a visible after effect. In the week after the session, I definitely noticed I was having far fewer problems with the right wrist. I no longer needed to shake it back in to place. Coincidence? I don’t know. The only way to find out was to go back…..

My top tips for acupuncture:

1)      Do your homework. You must ensure that the practitioner that you see is a member of the British Acupuncture Council. Through their website you can enter your postcode to find approved clinics near you.

2)      Wear loose comfortable clothing – Depending on where the needles will be inserted, you may need to roll up sleeves and trousers legs. I wore a baggy tee shirt and jogging bottoms that were easy to roll up and comfortable.

3)      Go with an open mind. Leave any fears and assumptions at the door.

4)      Talk through with the acupuncturist your condition and all aches and pains. I filled in a form beforehand and thought I was going to need an extra page! When talking to him about my extensive list of pains, he was able to target my problem areas to ensure I got the most benefit from the session.

5)      Don’t expect to feel the benefits after one session. You might be required to attend a few before you’ll notice any difference.

6)      Finally….Relax! It’s easier said than done, I was so tense and so clammy I had to be given a towel to dry my hands off!

The London Marathon

So today I should have been running the London Marathon. My first marathon.

I have wanted to run London my entire life. I knew as soon as I started running it was going to be my ultimate target. Getting to this point was 2 years in the making.

Running is my favourite thing.

One year ago exactly today, I ran my first ever Parkrun. I wasn’t sure about going because not only was it chilly and hailing, I had a sore foot. However I went and it was a personal best by 2 minutes, and I was just seconds away from going sub 30 minutes. That sore foot was to be the beginning of my arthritis, and it was to be my last run for almost 6 months.

I did however manage a half marathon, The Great North Run. It was slow and I hurt a different part of my left foot, but I managed it. I felt fit enough, and crucially, strong enough. Just one week later though I came off anti-inflammatories and onto methotrexate and I’ve been on a downward spiral ever since.

Back in the summer of 2016 I applied for a charity place for Arthritis Research UK. I really believed I would get better and be back to my normal self in time. This hasn’t happened.

Today, on marathon day, I am at home, bedbound. Arthritis has taken my left shoulder in the last 4 weeks. I can’t dress or undress myself. I can’t open doors with it. On top of that, inflammation has spread to my top of my spine and my neck. If I turn my head even a little either side I feel like I’m going to be sick. That’s on top of the normal stiffness and swelling I have in both my hips, my ankles and my knees. I am in one of my worst flares for a while.

Watching the marathon on tv has been a painful experience emotionally. I should be there. There is no guarantee that I’ll be there next year but I have to believe it. I have my place for next year. It’s literally next year or never.

The comeback starts today.

If anybody wishes to support me in this impossible quest, please follow the link below

http://uk.virginmoneygiving.com/RebeccaNorth2

 

You suffer from what?

“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.

Welcome to The Sensible Shoe Society

Hello lovlies,

Welcome to The Sensible Shoe Society.

This is my very first post! I’ll try to keep it short and sweet, like me. I’m Rebecca. I’m 28, and I have some pretty terrible goings on in my joints. I have psoriatic arthritis.

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I will never be able to wear non-sensible shoes ever again. That’s a lot to come to terms with at such a relatively young age.

It has almost been one year since I developed PsA and what a year it has been. Some good moments but a lot of sad, bad and painful ones too.

I’ve started this blog as a way of connecting with you fellow arthritis sufferers, spoonies and fatigue warriors. As a way to document what life is like with arthritis. To talk about how to travel in pain. To discuss different medications and treatments. And to talk about what life is like when you have a totally invisible illness.

I’m also hoping that lots of you can give me some wonderful sensible shoe suggestions!!

Please feel free to connect with me and point me in the direction of your blog.

Until next time,

Rebecca.