This month, we hear from two CCI Support members who have generously shared a bit of their journeys with us. If you would like to send a written piece for featuring in our blog, newsletter, and/or social media, please contact [email protected].
The morning of my appointment was always going to be stressful, my nerves were high and we live an hour out of town, so it was a reassuring sight to see the pink and orange streaks of the sunrise across the sea as my husband drove me to the 7.30am appointment. On arrival at the daycare ward, we were greeted and organised by an amazingly comforting nurse, who reassured and prepared me for the day ahead. After changing into the gown, I made myself comfortable in a wheeled chair, I don’t know if it was the warmth of the blanket or the heat pack the nurse had given me earlier, but it really struck me then, how the experience had in no way caused me the anxiety or stress I had feared. It may have been the fact that my chair had wheels, but it dawned on me that there were no expectations here, I was in good hands away from the stress and pressure of daily life, I knew it would be a productive and helpful day.
The support of my husband, sitting next to me holding my hand, was much appreciated as the other patients began to filter in, my occasional yawn seemed to set off a chain reaction, which seemed to break the ice and we all had a giggle further comforting me. During the appointment, I was sedated and remember a nurse rubbing my back comforting me, I learnt valuable tools and found the whole process engaging. Afterwards I sat in my bed and was brought a cup of tea and mini sandwiches that were quite delicious, it really was a moment of enjoying the small things in life, shedding the pressures of life and I could not help but think “Now this is just lovely”.
– Vicki, CCI Support Member
CCI Support have been such an important part of my healing journey. I have had ME and fibromyalgia since 1997, and functional neurological disorder since 2007. And when I came across CCIS, I didn’t feel so alone. They helped me get a disability parking permit, which has helped me enormously with energy levels and with just feeling recognised as having a disability.
I have had lovely, supportive group sessions, and I think the most helpful thing was a conversation I had recently with Annabelle. She talked about the importance of micro-breaks and small steps we can take to improve our health. Now, I have researched everything to do with health for decades, but it was so incredibly helpful to have the information be up to date, well researched, and all in one place. She emailed it to me afterwards, and I now use some of the things we talked about every day.
CCI Support is an invaluable resource. I would feel less seen, less heard, and more alone without it. Please know that people who are living with complex chronic illness, and often invisible illness, do tend to feel invisible. Not a lot of people actually understand and recognise that it can be an incredibly lonely journey.
I really want to see CCI Support continue. In fact, I think it’s crucial for a lot of us. A lot of people with complex chronic illness fall through the gaps because they don’t have a ‘concrete diagnosis,’ but it is every bit as important. And CCI Support fill a gap that no one else can fill.
– Anna, CCI Support Member