Summer’s End

I’ve almost made it through another horrid long hot summer! I am feeling the change of light on the breeze of autumn coming and it excites me!😍

I’m so tired. The heat depletes me. I’m not feeling well. My body hurts. But i must acknowledge that my migraines are not as bad as the past two summers😊.  I now have very low pulse, severe dizziness on standing and walking. I’m seeing a cardiologist in March. Im struggling with pain management and meds again. Im needing my walker inside and my wheelchair much much more. I am housebound and can’t really go out or do anything without help or carer aid. I’m needing more personal care daily.

Im going through some emotional hurtful stuff as a mother right now and it brings me down and affects my health. Im trying to be strong and compassionate with myself but Im feeling like a failure in so many ways.

Anyway, ive decided to commit more to my blog and less to ig and fb. I will be focussing on my illness and disability as it is such a huge part of my life but Im also going to share the things that truly enhance my being. The things i love bring me so much joy and give me hope and incentive to keep going every day. These things include spending time with my hubby in nature or the garden💕, hugging my girls, art, knitting, making things, chatting and sharing creativity with my mum,  catching up wiyh my sister, watching podcasts, and patting my bunny. Just listing these things bring happiness into my heart. I find joy in lots of things every day which helps with my feelings of sadness, fear and being a burden.

Brightest blessings to you 🐝🌸🌱🍁🐞



This hibiscus flower is a lovely part of summer. I love the flowers that summer brings. That is all I like about summer.

This gruelling weather is relentless. I can’t stand the heat. Don’t get me wrong, I am very appreciative and grateful for having an air conditioner in the lounge room and bedroom but spending day after day inside can be isolating and frustrating. I’ve been struggling with pain in swollen leg, aching back, neck, ribs as well as severe headaches and upper gastric pain, I think from Celebrex anti-inflams. I’ve started back on Lyrica as well and come off Endep, trying as always to reduce prednisone and managing pain relief and other meds. I can’t get an appointment with my GPs.

I am however finding inspiration and contentment in Instagram, Ravelry, reading and knitting. I also love looking at my garden through the windows and some evenings when it gets cooler, Hubby takes me for a drive to the lake. I am so looking forward to autumn. My favourite season. I can feel it coming and am impatient. Grrrrrr.

Blessings and kindness,



Let the Dust Settle

I’m here and doing ok. The thalidomide interacted with another medication I was taking and resulted in my pulse dropping dramatically. I spent a few days in hospital which was quite traumatic for me. I had to have another CT scan which causes me great anxiety as I have had so many scans in the last 10 years. I had a lot of anxiety while in hospital and don’t think I realised how much I was not ok. Sometimes I was having panic attacks but did not realise. I can see it now, looking back but at night and early in the mornings I would get severe shaking, heart palpatations, a feeling of dread and fear and headache. It was not a good visit. My specialist took me off the thalidomide thankfully but it took a week really for my pulse to go back up. I was extremely dizzy all the time and had nausea and severe ringing in my ears.

While in hospital i had a cannula in my arm for fluids. I told them that I had previously had a clot in that arm from a cannula in the past but they didn’t seem concerned and still put the cannula in. A week after being in hospital I had the symptoms of a clot and had an ultrasound. Yep. Another clot. So I’m on blood thinners now for two weeks and then I’ll have another ultrasound to check it’s gone. So basically it has been a horrid few weeks. The week I was in hospital and the week I came out I struggled terribly with feeling terribly low and sad and afraid. I am slowly feeling lighter every day.

One thing that has helped me feel a bit better has been doing some knitting. I am a knitter but this year took a bit of a change from knitting to weaving and art. I joined the Spinners and Weavers and did some weaving and designing classes. I love weaving and have loved learning different things however, returning to knitting after a big gap has made me realise just how much I miss it and how much I need to return. I will always weave now as I really enjoy the free creativity aspect of it and I love using my own hand-spun. However, knitting is really an important part of me. It helps me mentally and emotionally. I’ve finished a beanie (sockhead hat) and have started a pair of socks in a tonal green.

After my hospital visit I had to see my doctor for a follow-up. He suggested I
“let the dust settle” and give my body a bit of time to return to some sort of routine. I couldn’t agree with him more. I have decided not to try any new cytotoxic chemotherapy meds. Every drug that my specialist has convinced me to try has landed me in hospital in the last two years. My amazingly supportive and caring husband is such a source of strength for me. The last visit in hospital was very hard on him too.

Love and kindness Faeryfay


Embracing Fear



I started taking a new medication this week. It is a drug with a horrendous history. Thalidomide. My specialist has been wanting me to try it for months and I have been weighing up the risks and generally been putting it off. The possible side effect that I fear the most is possible permanent damage to the nerves in feet and hands resulting in possible loss of feeling. However, the possible outcome of taking it is feeling much better and slowing down the disease, hystiocytosis. I took the med two nights ago and have had one migraine so far, but that doesn’t mean anything as I get chronic migraines.

Along with the new meds, I have been following my anti-inflammatory food plan, doing my yoga and meditating up to three times a day. I am enjoying the meditating. My favourite one is a buddhist poem that I listen to while sitting in my garden with my bare feet on the earth. This is a beautiful grounding exercise and I feel the benefits from it daily.

I also love textile art. On good days when I have the energy I enjoy tapestry weaving and I have just started embellishing them with healing crystals. The one below I made with natural fibres and amethyst crystals. Creativity is an important part of my healing. It allows my inner child to experiment, play and be free.20171021_191830-445282621.jpgMy healing involves a lot of different things. Medication is just a small but important part. I also take a variety of supplements and drink loads of water.

Reading and learning is also integral too. I borrow books from the local library weekly on healing, spirituality, creativity, and much more. I love my library. I also buy books regularly on kindle, and real ones. I’m currently reading ‘How to be Sick’ by Toni Bernhard. I have read it before but it did not impact me as much as it is this time. Perhaps I was not ready for some of the concepts spirituality then. It is written with a buddhist perspective which I am very drawn to. I am also listening to two online courses at the moment by Pema Chodron and Sarah Brach. What brilliant authors they all are. I am loving learning about Buddhism.

When I was in hospital a couple of months ago, I had a dream where I was visited by the Buddhist goddess Kuan Yin. She was so beautiful and just her mere presence changed my feelings. I was not coping well in hospital and was feeling worried, anxious, lost and afraid. The night before a PET scan I was anxious about, She gave me strength and love. Since then I have been learning as much as I can about this gracious goddess of mercy and compassion. I now have several statues of her and pray to her daily.IMG_20171022_131157_377

I am struggling with pain still. Most mornings are difficult, waking with severe pain in my hips, knees, ankles and ribs. I take strong pain meds immediately when waking and wait until they take effect before I can walk to the toilet with my husband’s help. He makes me a very welcomed cuppa tea and oatmeal for breakfast. I love him so much for this. He does not know the happiness it brings me every day. In fact although the pain is sometimes excruciating, that first cup of tea he brings me sustains and heals me every morning.

Relationships are hard when chronic illness, disability and pain are involved. I am so grateful for the love of my husband and family. This is where I draw much of my strength and perseverance.

This week I am going to my second art class at a local gallery/art centre. My class last week was wonderful and I enjoyed it greatly although it cost me in energy. It has taken me all weekend to recooperate. It was my first time doing and getting to a class by myself. I travelled on a community bus for people with disabilities and I went in my mobility scooter. I felt so independent but also terribly anxious. I wrote about it on instagram. The teacher and classmates were lovely and I was nervous as it was a general public class. I loved it. This week we will be working with textiles. I am so looking forward to it.

So I will continue to take my new meds and hope for the best, along with all my other healing activities.

Love and kindness, Ilsa20171015_140848251370384.jpg




Creative Spirit

Being in nature, listening to the birds, observing the colours of the leaves, smelling the refreshing eucalypts and touching the bark, petals and seed pods connects me to Earth, to Gaia and to the Divine. That connection brings a vitality that I relish. I receive this connection from my own garden and from many places where there is growth, love, tranquility, plants and animals. Being in gardens and nature lifts my spirit, but more than that, it heals.
My body has an autoimmune disease of the blood. I am in pain and disabled. It restricts my activities and influences my mind and spirit. I am embedded in the large, confusing and overwhelming health system.I have multiple specialists, treatments and medications and have undergone so many tests and scans that I cannot count. I have had multiple visits to hospital. Yet still, I continue to have pain, inflammation and joint damage as well as anxiety and migraines. I continue to take my meds and see my doctors but I have realised that I am on a journey of learning. Having chronic pain and illness changes one’s perspective on life, love and the world. This perspective is sculpting a new state of being. My journey involves embracing and exploring creativity, art, textiles, faith, love, divine feminine, nature, gratitude, energy healing, kindness, hope, prayer, meditation and self-love. I plan to tend and care for each of these things in my Creative Spirit Garden and it is this spiritual journey that I wish to document in this blog.