Here’s to many “better” tomorrows………

tumblr_wallpaper_vintage_quotes

I don’t know about anybody else with chronic pain or illness, but I find mine can really knock my self-esteem. For years I tried working full time while I struggled to accept that my approach to working hours needed some modification. What followed was knock back after knock back, where I took my inability to work full time hours (at a time when “management” of my condition hadn’t begun to occur, and when I was going through a different surgery or procedure every 6-8 weeks), as direct consequence of a general inability or fault of mine. Each and every time I had to quit a job because I couldn’t cope with the hours and/or the sitting/standing requirements, another little piece of my self-esteem was lost. After a couple of years of this, and many many roles, my partner sat me down and said something that simply hadn’t occurred to me. “Why don’t you look for something part time, minimal hours, and assess carefully whether the sitting/standing ratio is right for you?” He pointed out that I was setting myself up for failure each and every time I took on a role I wanted (so very badly) to be able to still do, but which was unrealistic given my current situation. That this may not be this way forever, but that right in that moment, I was being unkind to myself and putting myself in unfair positions.
Now, I know a lot of you out there are probably thinking this is obvious. But to me, while I was still learning about my condition, what “management” meant, and struggling with acceptance, this was a shocking concept. Could I do that? Would it mean accepting defeat? Would I be a failure?
I think my partner is a very intelligent man, with amazing commonsense and logic. However, in hindsight, this concept of being realistic about my new situation wasn’t as mind blowing as I first thought. I was simply in too deep, and I was fighting acceptance of my situation with every bit of my being. I needed someone objective to point this out to me. I thought that accepting (instead of fighting) my condition was giving in to it. I felt I had to fight it head on and not let it defeat me. Boy how wrong I was!
Accepting doesn’t mean defeat. It doesn’t mean giving in to a life of pain. It means accepting that this is my state of health at this point in time, and it means doing whatever I can to make living a full life still possible. Because essentially, defeat to me is when the condition takes over your life. When you cease to enjoy life and all its amazing pleasures. By fighting my condition I gave all my energy to the fighting. Other areas of my life seemed to slip away and become non-existent. The pain became all I could think or talk about. When I decided that I just needed to modify things a bit, my world opened back up again. I returned to part time work gradually, started volunteering and returned to study. My social life became alive once again, and I resurfaced from the depths of fighting. I was relieved to not be fighting anymore…..it had been thoroughly exhausting. Don’t get me wrong, it was a long adjustment, but my quality of life is greater than it’s ever been despite intense pain. Even better than before the pain began.
Recently I found that a volunteer role was becoming impossible due to the amount of sitting involved. Once again, even after all these years, I found myself thinking of it as a failure on my point. Something I wasn’t able to do. A chip at my self-esteem and some tears were shed. By recognizing the pattern I adjusted my way of thinking once again, and began a search for some volunteer work better suited to my situation at present. It wasn’t hard to find something and my self-esteem remained intact. I now volunteer in a role that allows me the ability to get up and move around as needed and with shorter shifts. My approach enabled me to change course and modify rather than to allow the situation to get me down.
Even in my dark days, when leaving the house was impossible, I studied online for a period, and wrote creatively (which turned into a novel or two) during another period. I needed a sense of purpose to feel good about myself.
I guess I’m writing all of this because as we all know, everyone is at various stages of their condition. I guess if this idea could help one person to keep their head above water, I’d be over the moon. It’s so easy to slip into a situation that makes you unhappy. I’m also aware that there are people whose situation will not allow an approach like this. It won’t work for everyone. I’d just like to help and feel frustrated that I can’t.

Advertisements

Make the most of today……….

IMG_209235338697863

This week I pushed myself outside my comfort zone by returning to university to try my hand at my own research. In my undergraduate study it was all coursework and no research, and in order to be able to take the career path I would ideally like, I need to do some of my own research. Something I am not comfortable with at all! It’s unlike anything I’ve ever done before, and daunting to say the very least. I am not comfortable with statistics in any way, shape or form, and yet this is to be a huge part of my life for the next little while.
As anyone with a chronic illness will know, juggling your health in this situation with careers and study is a hard one. Some days I can’t make it in, and some days I do, but the brain fog and distraction of the pain is so great that I’m near to useless. However, there are good days too, and days where I feel so amazed at how far I’ve come and what I’m achieving. I look around the lab and think…..this is me, this is who I am, and I’m very lucky to be able to adapt enough to be able to juggle.
You see what makes me get up and find a way to adapt each day is the feeling that I am lucky. I am lucky that what I enjoy most in this world is to study and learn, and to be able to create a career where I can help others, and that is still possible. I feel thankful that my brain (other than the brain fog) isn’t affected by my health condition. That I can still use it to create a career and a purpose for myself that is so fulfilling.
I remind myself that things could be worse, and that for some people it is. For those people I get out of bed and look at how to make the most of the day. How many times have those of us with a chronic illness or condition heard someone complain about doing something we only wish we could do? And how you’d like to shake them and tell them to make the most of it?
Only the other day, a good friend of mine genuinely complained about how she didn’t want to have to exercise to stay in shape. I literally wanted to shake her and tell her how much I’d give to be able to go for a run without excruciating pain. How I’d love to feel strong and healthy again. While at the same time, a good friend of mine is paralysed from the waist down and is unlikely to ever run again, but who finds different fulfilling outlets without ever complaining.
So, for all those people whose condition stops them from finding ways to adapt, I get out of bed, continue to adapt, and get creative with finding ways to do the things I’d love to do. I carry on.
Today I am thankful for my little ol’ brain. What are you thankful for??

Taking a leap into the unknown…….

everything-is-a-miracle

This week I stepped out of my comfort zone by dusting off my novel and sending it off to literary agents. Now this isn’t anything unusual, I like to write, and have piles of short stories, essays and even a novel or two tucked away. The difference here is that previously I have always kept my writing to myself. I don’t allow anyone to read it. I just enjoy writing it. It has been incredibly therapeutic in times past when I was recovering from surgery, or limited physically by a pain flare. Up until now that’s been its purpose. So to finally be taking that leap and seeing what comes of it is new…..it’s exciting and nerve racking at the same time.
You see, I have a horrible fear of failure which I regularly have to keep in check. While this is easier with more…..private endeavors, the thought of failing publicly is like torture to me. I have avoided taking that risk until now. Now here we are, discussing my leap into potential failure, or maybe, just maybe, potential exciting prospects.
Now, don’t get me wrong, I don’t have my head in the clouds. I don’t imagine that it’s likely to be picked up immediately, if ever. And I’m sure if it was to become successful in any small way, it would be after many rejections. I hear the stories of struggling “authors”, just as you guys do. But for this very moment, I will enjoy the feeling of taking a giant brave step into the unpredictable unknown. I will enjoy the fact that I was brave enough to put it out there. How deliciously exciting. 
G
P.s. What brave thing did you do this week? No matter how big or how small….I’d love to hear it!

An open letter about chronic pain or illness……..

frankl

It’s funny. I don’t feel I fit in with anyone. Some people with chronic pain or illness (certainly not all) find me irritatingly positive in my attitude and approach. Which is understandable when you consider we are all at different stages in our experience of chronic pain or illness, and that some people are still struggling to come to terms with it as I once did. This would be fine, but those who are fit and healthy find me very different to them in my limitations and strange adaptations to doing things. Healthy people want to feel sorry for your pain or let you know that they are aware of it. But I choose not to make a big focus, and my healthy friends seem to feel uncomfortable doing the same. Which is completely understandable! I imagine that it feels unusual to play down someone’s health concerns.
I guess I’m a bit of an odd mixture. I have such a complex pain condition which affects my lower back, bladder, pelvic region, right leg, and hip, and over the years it has started to have an impact on the function of some of my organs. Now, as I said this is a cheerful blog, I only say this to show my understanding of how difficult that makes playing down my health.
The way I see myself is as a young woman who has this little niggle of a health concern. I give it the attention it deserves, but nothing more. I have such a full and enjoyable, with so many other facets to it that are just the same as other peoples. I study, I work, and I volunteer (albeit all of these involve adapted hours, adapted practicalities, and regular rest). I have a partner, amazing friends, and I travel and push myself to try new things healthy people often don’t try. Those are the things I like to focus on day to day. Those are things that give my life purpose and fulfilment. And those are the things that I love to talk about with people, just as they do.
I am happy. Be happy for me and enjoy joining me in my explorations and adventures. 🙂

Exploring the mountains……

So this week I pushed my comfort zone by riding in a cable car 270 metres above the valley floor while exploring the Blue Mountains in Australia. While heights are not a problem, small spaces definitely get my fight or flight system going! I’m so glad I did though, it was an amazing view and I got to watch the Three Sisters gradually appearing through the mist. It was such an amazing atmosphere, and it even had a glass bottom in places which only added to it. I would never have seen these views without doing something that made me a bit uncomfortable….and it’s times like this that make me glad I approach things this way.
I also swung my legs over, and sat on the edge of a huge cliff overhang and looked out over the Blue Mountains at Lincoln Rock. Some people were terrified which only made me more determined I’d enjoy it!
On a pain note, I’m having a bit of a flare, and so things like this really make me appreciate the good things. My pain is only one part of my life, and by having a full rest of my life makes it seem so much less important. Sometimes when you focus on something, more than it deserves, you can give it more weight than it deserves. You can allow it to become bigger than it needs to. I hope to continue to give the pain only as much attention and importance as it needs and deserves.
Today I’m grateful for scenery that makes me feel tiny. 🙂

View of cable car from part way down

View of cable car from part way down

270 metres above the valley floor

270 metres above the valley floor

View of the Three Sisters appearing through the mist

View of the Three Sisters appearing through the mist

View through the glass bottom of cable car

View through the glass bottom of cable car

Views from the cable car

Views from the cable car

The edge where I sat and looked out over the Blue Mountains

The edge where I sat and looked out over the Blue Mountains

So here we are………

So I’ve been meaning to start this blog for a while. I kept thinking, “when I’m more in a place like…..” or “when I’m feeling more adventurous”. I guess I’ve realized that that time and headspace isn’t going to magically materialize on its own without a little prodding. So here we are.

Let me tell you a little bit about me and what I hope for this blog. I’m a woman in her 30’s who has been living with a chronic pain condition for the last 13 or 14 years. Now, don’t stop reading! This is a cheerful blog and is not about negativity in any way. In the early days I didn’t understand what was happening, and I assumed that as soon as the doctors found the cause they’d fix me and I’d go back to normal. Ahhhh the naiveté! Instead what happened was they found multiple physical consequences of the pain and no specific cause. It was all going to come down to managing it. Now, that’s a lot to take in for a gal in her early twenties, and I moped around and allowed the pain to dictate the things that I would do day to day. It took a good while before I realized that just because I was in pain, it didn’t mean the world would never be the same for me again. It didn’t mean my world had to become small and unadventurous. Prior to all this happening I’d been a carefree spontaneous young woman who loved travelling, meeting new people and trying anything new. I didn’t want to lose her to the pain and so I had a choice to make. While the doctors could help me with the physical elements, and counsellors and psychologists with the mental elements, nobody but me could decide what attitude I’d take towards it. As Viktor Frankl once said “Everything can be taken from a man but one thing: the last of the human freedom—-to choose one’s attitude in any given set of circumstances, to choose one’s own way” (Viktor Frankl, Man’s Search for Meaning, p. 86).  So I had a choice, to sink or to swim. I could allow the pain some control, or I could learn to adapt to it (not fight it) and learn ways to manage it best so that I could still live the life I wanted. To me the answer was clear. I had to live with the pain regardless, but I could choose to live with it happily and in a fulfilling way, or I could let myself drift along. I was going to swim. Now don’t get me wrong, this wasn’t something I could immediately put into place. With the help of doctors I learnt what did and didn’t work for me, and I began to be mindful of what helped, and hindered, the pain on a day to day basis. I learnt what I could do to make it easier, what to avoid altogether, and what I needed to do if I wanted to push the boundaries a bit. I had to reevaluate what I was going to do. While I may work full time in years to come, if my pain decreases or if a new management treatment becomes an option, I had to admit that I would be more likely to only be able to work part time in the foreseeable future. So it was with a giddy heart that I returned to university to finish off the studies I had always returned to after travelling but never finished. With a degree, and a career path, I would hopefully bring in a higher part time wage, making life that little bit easier. I found studying blissful. I had a purpose again after years of trying to work full time and failing. And I was good at it. It was a strong reminder that with a little adapting, life could still be fulfilling. I was on the right track.

Fast forward a little while and I find myself here, writing this blog. In an effort to create the fulfilling life I’d had pre-pain, I found I was pushing myself to try new things and see new places. They weren’t necessarily in the same vein as they used to be, but they were just as exciting, just different. I was adapting. What I found that followed was surprising. I don’t have a lot of friends who are ill or in pain, and I am surrounded by healthy friends and family who are able to do all the things they would like to. What became evident though, was that even those healthy friends weren’t trying new things or ensuring their life was fulfilling. They started to comment that I was inspiring them to try new things and to push the boundaries. I made an effort to do at least one brave thing each day, no matter how small. To try something new each day. To push myself out of my comfort zone.

And so here we are. This blog is born to document at least one brave thing I do each week, and to hopefully inspire people to do the same. Both those whose lives are challenged by health, and those who are fit and healthy. The world is an amazing, exciting place, and it’s as big or as small as you want it to be.

So please, try it. Go forth and be brave, no matter how small. And please don’t forget to let us know about it!

G