Side Effects

I have an undifferentiated connective tissue disease since 2007. You might have read about my issues in some early blogs. This has been a trying journey and has changed me as a person. I think for the better but I will let others be the judge of that. Chronic illness and pain have been constant companions particularly in the early days. Not knowing what is wrong and if there is ever going to be an end to this pain shakes you up at many levels. The inability to even move your eyelids without excruciating pain was the nadir of this hard time. This led to loss of self-worth and self confidence too. Acceptance came with some understanding of the disease and a diagnosis. Strange how people get hung up on the labels. I am not bothered about the label so much as understanding the reasons for my symptoms and that the treatment was totally symptomatic right now. Thus, irrespective of the label the treatment remains the same. Having accepted that this is for life unless there is a miracle got me to the next step of identifying what to me and my husband is an acceptable quality of life. We certainly never wanted to be stuck in bed in constant pain unable to self-care.

This started what I think was a hard journey to taking the scary and dangerous drugs. People say they have side effects and will kill you and I quip back that my body is already killing me so what I am looking for is quality of life and not quantity of life. I wanted to be able to self-care, do house work, cook, go to the shops and even occasionally go out as the minimum I look for in life. My husband also identified that doing everything like caring for me, house work, cooking and full-time work was hard without any help. We made massive changes to our life – moved to a warmer country as now cold weather is very hard too bear for me. Gave up the idea of working as that reduced a huge amount of stress. With that I had to rebuild my self-worth and confidence – it was akin to phoenix rising from the ashes.

I will not bore you with the details but I gave this background as I want to tell you about the good things that came with this illness. I reconnected with the inner child, rediscovered my sense of humour and reconnected with people both from the past and new ones. Spending a lot of time in bed and within the bedroom I made good use of the IT skills I had developed for work. I learnt the use of social media to create a social world that would keep me from being isolated. Social isolation is a reality no one ever talks about and we just pretend all is fine. That is so wrong as we hesitate to ask for help and others hesitate to offer help. As our life gets reorganised around managing the health issues, we are not the party animals we used to be. Hell! I am not even the same person I used to be, I think.

I have a Facebook account and I use as my profile photo one from when I was 21. People recognise that and find me. I have over the last 10 years reconnected with school friends from St Anne’s High School, neighbours, childhood besties, batchmates from College of Nursing AFMC, who I lived with for 4 years. All who got lost in the rush of life, work and families slowly were searched for and contacted. I thoroughly enjoy talking and catching up with all of them. I have a positive and happy approach to life, and just laugh at and about everything. It is a good coping mechanism. I have also learnt patience, mindfulness, learning to balance activity and rest, weighing up the worth of activities that I choose to do as the price of pain should be worth the pleasure I get. Go with the flow attitude was achieved with perseverance. I am not saying all is well in my world but that I am able to cope better with the slips into anxiety, depression and pain which though a normal white noise now, can flare. I have learnt to recognise the signs of the downswing and at once start pushing myself to do what it takes to get the mood back up as that enables coping with the pain. So, you see now that chronic illness while devastating has not been without its positive side effects. 

During this time, I joined a UCTD group on Facebook. For a long time, I was an admin as well in the group. I spent a lot of time talking to people who are all at the different stages of this disease and also different stages of grieving for what is the loss of self. I spent time not just monitoring as an admin but also befriending people and sharing my experiences with them so that they can learn from my mistakes and make better choices regarding all aspects of their care, being able to advocate for themselves and best of all be able to reach acceptance ….. as well as know that there is a light at the end of the tunnel even if it was a long way off right then.

So I invested a lot of time with people who needed someone to talk to … to vent.. to grieve with… to laugh… to share and to just be with…… And I am so grateful for the people I met as I learnt from them just as much as they learnt from me. Friendships have been forged across the world and across cultures and across languages that remain strong even when there are gaps in communication due to flares or personal problems. We slip right back into the grove as soon as we touch base. If someone is not around and you are not aware of any problems, we make the effort to reach out to ensure they are ok. There are generally no topics that are not talked about as this illness is all pervasive and we are not coy or shy any more. We will give advice from our experience, help research the issue if need be, contact others who may be able to help, have slap up virtual pity parties with cakes and cocktails. We rally around the one who is feeling weak and vulnerable and invoke the UCTD gang to virtually go sort out the people bothering one of us. The weapons of choice can be walking sticks, wheelchairs and anything else we can think of and carry. This venting and humour are so useful in coping for example we laugh about and at one or two of us who constantly fall over, or who have issues with gas – I think at one point we were talking about maybe starting our own bottling plant! LOL

So I was surprised and touched when in a messaging conversation one of my friends wrote this to me:

“Hah! I learned from the best! Seriously you’ve been such a good teacher and friend since I got sick. You’re my favourite side effect lol!!”

I was astounded to say the least and got very emotional about this – that is another side effect – getting emotional. This is one of the best compliments I have received in my life as it came from the heart spontaneously. When I laughed and said oh now I am a side effect my friend quickly said it just came out I did not mean to upset you. I said no no I like it. I have never been called a side effect before and am proud to be one. So, you see we find our side effects in every situation. May all your side effects be positive ones too.

Visit to Leura

We made a small side trip to Leura on the way back from The Gully which is the next town from Katoomba and is on the tourist trail but we have never managed to get to it. This was an ideal chance as we were not rushed as we normally return by motorway and would be well in time to avoid any traffic jam.

We stopped at the car park in the local Woollies and took a walk up and down the high street, looking into shops as fancy took us. There was a Australian Alpaca Barn selling items make from Alpaca wool. Such soft and warm things – socks, gloves, caps, scarves, jumpers, coats – colour everywhere. The woolly cap which I liked and thought would serve me well in winter turned out to be pretty pricey. Maybe I will come back another day and get it as now we are moving into summer.

The next shop had knickknacks, jewellery, clothes (you know the hippy floaty kinds of clothes) and I saw some good dresses outside so popped in to have a closer look. Of course, I get drawn to these sheer silk kaftans like dresses – so light, so colourful, pretty prints which were kind of familiar. The shopkeeper seeing my interest said they are made from Indian saris. I said yes of course they are Kashmir silk saris as that silk is very fine and light. Another one which is pricey but I definitely will go back and get one after I have worn the dresses I have right now. Since I got the dresses out the weather has turned cooler – just my luck.

The next shop ‘Leura Fine Woodwork Gallery’ was selling carved wood products. Such beautiful bowls, pepper mills, photo frames, show pieces, sculptures, little boxes, tables and much more. I am definitely going back to buy a couple of frames, as I need to check on the size of the photos, I want to put in them. There were beautifully carved kookaburras and puzzle type boxes. All so tactile and I now really miss my collection of wood sculptures and bowls etc that I had to leave behind when I moved to Australia.

On to the next shop, just a deep breath made me feel giddy with the chocolate perfume in my nostrils. Josophan’s is a chocolate heaven and I have no words to describe the fabulous concoctions.  There were different kinds of hot chocolate and we got a chilli hot chocolate – maybe I can have some this weekend as it is going to be cold and dreary. It should cheer me up. Have a look at their webpage to see all the goodies. They also had a number of chocolate shoes, beautiful ones and also a chocolate corset with lacy design and all. Who would want to destroy and eat it? But the best thing was the new Ruby Chocolate. It is the first chocolate to be discovered in 100 years. Click here to find out more about Ruby Chocolate. It is every bit as smooth, fruity – raspberry kind, sweetness more like the dark chocolate. Definitely worth trying it. I got some little buttons and also slices with cranberry and pistachios. I must say since it is a thin piece of chocolate the cranberry tends to be dried up and pistachio does not seem to marry well with the chocolate as hazelnut does. I also got some individual pieces that shall be savoured soon enough. Walking back to the car we were happy with the purchase and mindful that the next trip would have to be planned soon.

A visit to The Gully

Going Places with Ernie Dingo – my current favourite TV series on SBS.  Ernie Dingo explores Australia's iconic destinations from the Kakadu National Park to the Great Barrier Reef. He introduces the people who live there in a symbiotic relationship with nature. Ernie is a native Australian who is very attached to his country. He meets people who share his passion with the land. He visits natural treasures and has conservation with locals and explains the tradition of aboriginal people. It is very well done, never over the top, informative and beautiful. Ernie knows a lot of stuff, especially about wildlife, history and plants and he actually connects with people. It is a gentle programme and I thoroughly enjoy the views, conversations and learning about the Aboriginal People and their culture.

The Gully

View of the valley

A couple of week’s ago he was in the Blue Mountains and that was even better as some of the places are familiar. He went to a place called The Gully (to give it it’s Aboriginal name) and this was a place we had not visited. So next week inspired by that programme we found out exactly where it was and made tracks. It is just on the edge of Katoomba. It is called Catalina Park. The traditional owners of this area as the Gundungurra and Darug peoples and they used this area as summer place. It has a water source with wild life and plants for food and medicine – an ideal place to spend hot summers. After white settlement they were forced to settle permanently here. The history states even some white people settled here but it was hard life specially in winter. Houses were made of flattened tins and any thing else they could find. Winter time they used newspaper to keep warm. I have immense respect for them as I would never have survived such conditions.

The Gully Walk

Then, in 1957 some local business men decided to make a race course there to attract tourists and forcibly removed the people. The trauma caused to the land and to the community of people who were living in and around the Gully was profound and still reverberates. The construction of the race course which actually failed to generate the expected tourism devastated the area.

Lake

Duckling

Mother keeping an Eye

On 18 May 2002 it was declared an Aboriginal Place. Today the racecourse track still exists but nature is slowly claiming back the land. There is a lake in a big depression with a path around it and a creek flowing along one side. The creek area is also swampy and the vegetation is low and covers the water to keep it from evaporating in the heat. There is a grassy area with a few benches for sitting and enjoying the peace. A perfect place for a picnic. Now there are plaques in place along ‘The Gully Walk’ around this special place depicting the tragic story of life and times of the people who lived there both Aboriginal and the white. Some of those people and their descendants are still about locally. The traditional owners along with the local council are to look after this place and conserve the area.

Flowering Grass along the race track

Flowers on the grasses

Buds on the grasses

That was the background of the place. The visit was a surprise sprung by my husband. Instead of the usual Saturday morning shopping trip I was expecting he said let’s go see The Gully. We packed some ginger beer and water in the cool bag and stopped to buy sushi for the picnic lunch. We went around the back way, that is to say not by the motorway but via Old Windsor road to Windsor, then Richmond, Kurrajong, Bilpin up Mount Tomah and then Mount Victoria, Blackheath and Katoomba. On the way we stopped to buy some fruit from the shops around the orchards in Bilpin. Some lovely apples and pears were got as well as some local honey.

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We found The Gully pretty easily and parked. Seemed there were only one or two other people there as ours was the third car there. There was quiet and the silence only pleasantly disturbed by the birds chirping in the trees. The feeling was pretty peaceful but reading the plaques about the sad history was poignant. One can almost feel the emotions due to hardships faced by those long gone. And yet there seemed hope as those people were resilient. The walk was a fairly good path with bushed and trees. I saw many which were new to us, so of course photos were taken. The lake in the middle has a pair of ducks with 6 little ducklings floating about enjoying the warm air. After a walk we sat down on the bench beside the lake to have the sushi. But by the time we had eaten one we realised there were small clouds of tiny black flies everywhere and so we decided to move to the car so as not to get added protein in the meal.

Wild strawberries

Wild Strawberries 

Flowers along the creek

Pretty blue flowers 

These look a lot like honeysuckle but of course they are not

Fern in the swamp

Finished lunch and had another little wander outside and looked at the tall trees. Then started our way back.

Beautiful Flowers

A closer look

Three shades of of green with yellow in between

Colours contrasting

Close up of flowers