Living with Heart

Archive for the Psoriatic Arthritis Category

Creating connections…nourish, harvest, repeat

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“Get up, dress up and turn up”.


You can take that quote anyway you like. Sometimes it’s achieved by just getting out of bed. For me, it’s about turning up (sometimes when I really don’t feel up to it) to social events whether it’s a small coffee catch up or a BBQ with friends/family.

For others, turning up may mean keeping in contact via text message, WhatsApp, Facebook, FB message or even a simple phone call – any means that keeps you connected to others in a positive and meaningful way.
 

I know that if I stop turning up, those precious connections could over time wither and die.
 

And I can’t let them wither. They keep me grounded here. They give me an escape from ‘being unwell’. They give me a chance to talk & think about ‘other things’. They make me feel like I am offering something to others. They fill my time. They allow my mind to work. 

So friendships are the plants that I nourish, I look after, I give attention to. And these friendships I can then harvest when I hit a low spot. 

Last night I was amazed by a discussion that I had with a long time friend MM and her husband D whom we’ve known for 20 years. It started in an innocuous way and ended with her saying some of the most beautiful words I’ve heard. I’ll try to paraphrase.

 “D and I know that when we book dinner with you guys it’s early in and early out because you’ll be uncomfortable sitting in the one spot for too long. In winter we never book an outside table because its just too cold. Michelle – you always make an effort to turn up – whether you’re feeling crap or not. The least we can do is make it as comfortable for you as possible.” WOW! Like really WOW!

Ok, it was a simple statement but what lay beneath was soooo important to me and so powerful. For years, without me even realising it, without it being a “thing”, without it being an inconvenience, MM & D had been taking my health into consideration. They had been making it as easy as possible for me to be part of ‘going out’. I must admit to a slight tear in my eye. But I also felt a little uncomfortable – which surprised me.

I’ve shared with most of my friends and family over the last 9 years as much or as little information about arthritis as they want, need or ask for. I rarely post anything on my private Facebook page and generally try to ignore my pain/discomfort when I’m out and about (which you all know is pretty damn impossible at times). I occasionally talk with friends about how I’m really going but only if they ‘really’ ask. 

But there is a heck of a lot of management in the background that makes it possible for me to have that elusive ‘energy peak’ to flat out dazzle my friends with (My name is Michelle and Im a Dazzler). I time my pain medication to maximise my socialising time. I rest before and after. I plan my week in advance. A fabric expedition on a Tuesday might mean I have to rest on Wednesday to catch up on exercise that I’ve missed. I also always keep Thursday low key as I’m preparing for the weekend when I love to do things with HotY. 

But every single day I “get up, dress up and turn up”. Now, whether I actually flat out dazzle my friends is probably a warped construct of my own mind – but I’m holding onto the dream!! The reality is probably more like a faint fizzle and pop… but hey – I’m the one writing this.

I am an extrovert and I gain sustenance and a certain amount of energy from spending time with friends. Thats my mind that gains energy, my body – well that’s another story totally. My friends may not realise that having a coffee with them might be the only thing I’ve done that day – and they don’t need to know. I like it that way.

So, if you haven’t made any connections lately I’d love for you to pick up your phone and text someone, message someone or make a connection – even leave a comment below if you need a connection right now.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

Pain – living with but not suffering from

Pain – living with but not suffering from

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The language we use is a powerful thing. The talk in our heads, the talk from our mouths, the talk from others. We all use language as a fundamental part of living and this constant chatter internally and externally takes up an immense space in our mind. When you have a complex health condition this language becomes even more important.

I’ve been thinking a lot about this lately and there are some words that I, personally, am not comfortable using.

The word ‘disabled’ is one of those words. It has such power behind it and such imagery. Even on my worst days – when I’m not fully able bodied or in a high level of pain – I will never use the word ‘disabled’. I have often heard people say they are disabled by their health condition and I feel strongly that this label can be harmful. It puts the focus on what you can’t do, what you can’t achieve because you are somehow ‘not’ able. I’m talking here about the emotional and psychological power of the word.

The word ‘suffer’ is another word that I actively stopped using many years ago. When asked about my Psoriatic Arthritis or Fibromyalgia I always say that “I live with PsA”. I never say “I suffer from PsA”. Again, this word conjures up images of immense burden, pain, trouble. As my condition is one that will be a part of me for always and forever I have made a conscious choice to live with it. By doing this I decide not to make it a burden or even attach any negative words to it. I make a choice to fully live with my condition. I’m not giving in. I’m facing reality with positive words – or at the very least neutral words.
I also don’t particularly like the word ‘chronic’ as it also implies burden and ongoing suffering.

Now, this is easier said than done. Actively changing the language and words we use can take constant vigilance until it becomes second nature. Or it might be a light bulb moment that totally changes your perspective.

For me, my lightbulb moment was a process. I started reading books on meditation and mindfulness. I started reading about the concept of ‘pain’. Our culture has a lot of negative associations that go along with ‘pain’. If you’ve got a headache – take a panadol. If you’ve got a cough – take some cough syrup. There can be no pain and if there is it is not good but see as bad.

But pain is simply your body sending messages to your brain about stimuli – your brain/mind then decides how to deal with them. For survival of the species there is an automatic ‘pain is bad’ response. What if you changed this response to ‘pain is neutral’? WOW! This concept has radically changed the way I think about pain and my PsA. I now embrace (Ok – well more like accept) that pain is part of my life now. I choose not to ‘suffer’ from the pain. I acknowledge it and move on.

Now, obviously, there is pain you should never ignore. If you have a new or sudden onset of pain then please see your doctor immediately. But for people with long term pain then this can be a helpful way to think about it.

My feeling of pain is present regardless of my activity. Whether it’s my spine, wrists, my holy shit left heel or my neck. I make a conscious and considered choice everyday to live around and with this pain.

I would love to hear your thoughts on pain and how you process all the stuff that goes with it?

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

Trekking, 21st’s & a Grand Admission

Trekking, 21st’s & a Grand Admission

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Thank you for joining me as I view life through the lens of living with inflammtory arthritis – recently updated to Psoriatic Arthritis.

Today two monumental things happen. My daughter, my precious Gem dives into 21. We had the party a few weeks ago because of the other monumental thing – my Husband of the Year (HotY) is going on his first overseas holiday without me.

 
I’m feeling happy, heartbroken, hopeful, worried and a type of sadness that I can’t really verbalise.

Celebrating a 21st is a fabulous thing – its that magical period in your life when anything still seems possible and there are bright green rolling hills before you. Gem has brought a depth to my life that has been profound. She was 11 when I was diagnosed with Inflammatory Arthritis and has had to learn early how to navigate public transport, cook a meal and basically  – be organised. There were times early on when I couldn’t drive and my pain was almost overwhelming.

It breaks my heart that she has witnessed this, absorbed this and that it has shaped her. She is studying Pharmacy now and she approaches her degree with a slightly different view than her peers. She has seen the good, the bad and the ugly of medication. 

I look back and feel a strange amount of guilt – I mean, surely I could have done something to stop my illness touching the lives of my family, or maybe I could have stopped the illness. Is my arthritis my fault? Have I done something so wrong that this is my punishment? Illogical thoughts. Irrational thoughts. However, they are there and they deserve their place within me.

But I sit here right now – in this moment – feeling such joy at the young imperfectly perfect woman that Gem has become. Pride, accomplishment, fear, hope.

Also, today my husband travels to Nepal to trek to a remote mountain village in the Lhi area to help in rebuilding some of the devastation caused by the earthquake of 2015. Lhi is not on any tourist map and it will be a tough 6 day walk to get in there and a rise in altitude to about 3,500m.

This is the first overseas trip that HotY will go on without me and I am bereft. I’m not bereft because he’s going. I’m freakin’ bereft because I’m missing out!! This is my absolute FOMO moment.

My heart and mind are with him. My body is not up to the task. My sadness is a physical thing and has its place nestled deep inside me. Under different stars I would be leading the Trek. I would be proudly squatting to wee on the trail. I would be braving the broken down bridges I’ve seen in photos. I would be in awe of a place different.

I love travelling but it takes a lot out of me and requires months of planning. Lucky I am a planner, a thinker, a doer. So the planning is part of the journey for me. I am planning my husband’s trip – even to the extent of going to the travel doctors with him to ensure he got the right injections. 

This is where I make a grand admission – I am freakishly controlling. Like a serious control freak. My family are constantly driven crazy by how much I want to micromanage. The worse my health is on any given day will increase my need to control my environment. I’m not alone in feeling this. Many people who have a chronic pain condition feel they have lost control of their body, (you bloody dirty, rotten traitor), so start to exert control in other areas. Yeah, Yeah – I know the psychology behind it, but it’s a hard thing to control. It is a beast that niggles, finds fault with others and sets rules that are too tight.

But I am learning to loosen myself, slowly, like a tangled roll of barbed wire that needs some straightening out.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 

Michelle

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