What if you were called on to forgive something you can’t see, can’t touch yet it stalks you 24/7 year after year after year, never releasing its grasp?
Welcome to my blessing and my curse.
Dermatomyositis is a severe, systemic auto-immune disease where your muscles attack themselves and self-destruct. It also, as the name suggests, attacks your skin and can also cause fibrosis in your lungs. Treatment is available but can be tricky. My case is considered severe and has been somewhat resistant to treatment but I’m lucky that my doctors keep plucking rabbits out of their hat, coming up with something new. I have been in remission for 2 years and am currently doing very well for me.
As I said, dermatomyositis is my blessing and my curse.
My blessing because most of the time I live my life to the very fullest appreciating each and every moment. I know life is short. Although I get sidetracked probably more than most, I do know what matters most to me and I do try to put these people first. Not always successfully but I love my family and my friends but I also love my writing, photography and helping others.
This, I’m sure you’ll agree, it’s a complex balancing act. However, dermatomyositis doesn’t understand love, relationships, priorities dream or goals. It just stampedes over the lot of it and when it flares up, even the best time management in the world, can’t save you.
Hence, it’s my curse. Almost since the birth of my daughter, I’ve been haunted by dermatomyositis and we are actually surprised but exceptionally grateful that I’m still here. I can’t tell you how heartbreaking it is to have your two year old son look up at you with his huge blue eyes and blond curls and ask: “Mummy better?” Worse than that, I couldn’t answer him. We didn’t know. To fall at home and knock your 16 month old toddler over on your way down but not being able to reach her and also to strangely to find that you can’t get up again yourself, is perplexing at best. What on earth was going on? In the end, my husband was carrying our sleeping daughter off my lap and into her cot. He even had to help me get dressed and cover me with my dooner each night. My parents were stepping in more and more to look after our kids and even me… their 35 year old daughter!
It’s hard to believe that the same person who has subsequently developed a love of adventure (albeit within my limitations) was ever so sick. Or, is still affected by this snoring giant which is kept under control through medication. I have been left with 60% lung capacity and some mobility issues but these are no match for my iron will. I am incredibly determined and have the best inspiration in the world…my family, my friends, my writing and my life.
That said, I am lucky there is treatment. No amount of determination can help you beat a disease without treatment.
The life I am living is good, even if it isn’t anything like what I’d planned or expected.
I could focus on all that I’ve lost but going down that path, really is the road to ruin…just like unforgiveness.
Seizing hold of all the good in the life I have now…this is the road to happiness. Do we call it forgiveness? Acceptance? I don’t know but whatever you call it, it certainly took me a long time to get here. I was diagnosed with dermatomyositis 9 years ago and I certainly didn’t reach this point overnight. I was angry and didn’t know who or what to blame. God? Bad luck? Genetics? Indeed, it was only after I had chemo 2 years ago almost to the day, that I have let it all go and finally learned what it means to be a human BEING…not just a HUMAN DOING.
I still haven’t got it down to a fine art nor do I have all the answers. However, I’ve made radical progress possibly through letting go. I had to walk away from my job a few years ago but I am now at the point where I’m about to step out there again.I’m yet to work out where I’m going or how. However, that can wait. My kids are starting new schools next week and for the next few months, I make no apologies for putting my kids first. The rest can wait.
So, how have I been able to forgive dermatomyositis and move forward?
Fight back and don’t be a victim. This means doing what I can to give myself the best chance of managing the disease and trying not to make things worse. This also means taking responsibility for my health and not delegating my life to anyone else. I take my medication. Have regular blood tests. Exercise. Could eat better but could eat worse.
Have fun. Enjoy!
Extend my limits. If you can’t go through the front door, how about trying the side door? Think laterally and be resourceful. It can be very easy to shrink inside your shell where it is warm and cosy but do you really want to live the rest of your life at half-mast?
Everyone needs a reason to live. A reason to get up in the morning. A reason to go through all the tedious bits and pieces in life when the going gets tough, boring or too painful to go on. It doesn’t matter what that reason is but without that, how to you keep putting one foot in front of the other?
Find support. I’ve had considerable counselling over the years and that really helped. I had some training in mindfulness techniques which I really struggled to take on board at the time but probably use more than I realise. I also went on a low-dose anti-depressant during a serious setback a few years ago and stayed on them. I am looking at re-visiting this in the next few months. I’ve been on so many other drugs that I let it be but they’ve come down significantly so it’s time for a review. My life is no longer hanging on by a thread.
Find a way of releasing your anger. I have written journal after journal burning off angst, deep sorrow, anger and anxiety throughout this journey and it’s really helped…both through venting and also being able to look back and see how far I’ve progressed.
Get out of your box. Sitting at home alone, it’s too easy to feel sorry for yourself and focus too much on how things how gone wrong for you. However, you only need to step outside your front door to realise that everyone has their lot…the blessings and their curse. You are not the only one. Even if you have a rare disease like me, there are still people in the same boat. For me, that’s either other parents battling health issues or others fighting different auto-immune diseases. I am far from being alone.
Most of us know if our glass is half-empty or half full. If you’re a pessimist, you’ll probably need to work harder to maintain your equilibrium. Write down something to be grateful for everyday…your What Went Well or WWW Book. Focus on that instead of the bad stuff.
Help someone else. Helping someone else has been shown to do wonders for your mood.
I have always seen dermatomyositis and a separate being, not “me” or even a part of myself. This means I haven’t internalised it. I am still myself.
Watch your language. Never call yourself a “sufferer”. I don’t have dermatomyositis. I am living with it. It might have moved into my body but it hasn’t taken over my soul.
Before I head off, I just wanted to address forgiveness when it’s someone you love who is living with a chronic illness or disability, which is a very different experience from being the person directly affected.
From my experience, it’s much harder for those around me to separate me from the disease. So, when I’m too tired to listen, be attentive, play, join in or can’t go bushwalking, go to the shops or invite friends over, they don’t usually see dermatomyositis. It’s more a case of Mummy being asleep again. Mummy can’t be bothered or…Mummy doesn’t love me.
After all, while I might have an over-abundance of words, don’t we all know actions speak louder than words!
So, I also have to forgive what can be a lack of understanding and compassion by those who I love the most at times. Deal with their anger and disappointment that Mummy is somewhat broken and there’s a gap between the concept of what a mother should be and reality. As my health goes up and down quite significantly, this can also be the contrast between well Mummy and sock Mummy. They don’t need to look any further afield to make that comparision.
When my kids are angry about things and playing up, they’re actually needing more love, not less and it’s not the time for me to retreat, which goes against any concept of self-preservation but that’s what it means to be a parent. Somehow, you need to be thick-skinned and thin-skinned all at the same time but who is immune to being hurt, especially by those you love the most?
This all brings me to this point. It doesn’t matter who or what is hurting you, you need to forgive and quite often this forgiveness is all about the little things. Overcoming the everyday. It’s less about that big one-off apology. It’s a daily thing. Just like breathing, eating, thinking, we forgive.
This post is part to the 1000 Voices Speak for Compassion. Please check out the link to have your mind truly blown away by such personal journeys of grappling with forgiveness. Each month writers come together to post on compassion often within a theme. This month’s theme is forgiveness.