‘I was very private about my health challenges and MS,’ Trina says.
‘I wouldn’t tell people that I had MS unless they absolutely needed to know and always with the promise that my privacy would be respected and protected.
‘That was sometimes to my detriment as well because people cannot help you if they don’t know you are struggling.’
‘I resisted joining the NDIS at first, as it was another way I would have to admit I had a disability. I agreed to see Support Coordinator Sue Egan, who helped to connect me with the NDIS and helped me with my application, which was successful. In 2020, I officially entered the NDIS,’ Trina says.
‘Sue has been invaluable to me in her capacity as my Support Coordinator. She is always available to provide with advice on whether using my NDIS funding on a support is appropriate, and always gives me as much time as required to talk through an issue. She is excellent in providing context as to how the ‘practical application’ of the NDIS works.
‘Sue recommended an simple strategy to easily identify if NDIS funding is appropriate for a service, assistive technology or household item. I ask myself ‘If I did not have MS, could I wash and change my bed linen without the pain and fatigue this simple chore causes, do I need this particular desk lamp because optic neuritis have caused deterioration in my eyesight, will this household modification or device, such as a mobility rails, can opener or electric knife, help with strength, balance and dexterity challenges.
At first, Trina found accessing external support services stressful, until Sue helped guide her in the right direction.
‘I became completely overwhelmed trying to use support worker portals such as Mable, finding someone who was available at times I needed assistance, negotiating rates, etc., so I stopped getting support. My home was a mess, bedding was dirty and I was eating baked beans because I did not have energy to prepare healthy meals.
‘Sue directed me to an agency who could act as a recruiter for support workers, so I only had to deal with one person to get all the supports I needed, from home maintenance and household task assistance, to help preparing garden beds and planting vegetable seedlings.’
Trina says without the support she has received from her Support Coordinator, would have struggled to use the My Gov NDIS portal and self-manage her funding. Trina is very independent and it was important to her that she be involved in the self-management of her funding.
‘Sue is also amazing with supporting me through my plan review meetings.’
Trina says she experiences high levels of anxiety when she has to explain the effect MS has on her body and her life.
‘This anxiety takes immense energy and the resulting fatigue would impact my cognitive ability to think through the questions and find the right words to answer the questions from an NDIA LAC during a plan review meeting.
‘These difficulties would increase my anxiety and I would be completely wiped out from a one-hour meeting. Sue would “grease the word wheel” for me during these meetings, and often remind me of other important information when I forgot,’ Trina says.
Ultimately, after finding it hard to ask for help for a long time after her diagnosis 30 years ago at age 24, Trina has learned how important it is to reach out when you need.
‘MS has taught me that vulnerability is not weakness. It takes incredible strength and courage to show people what I fear, where I am most vulnerable, and to admit that “I can’t do what other people my age can do’ Trina says.
MS Support Coordination can support you with strategies to manage your symptoms and succeed at achieving your goals. To access our MS Support Coordination, phone Plus Connect 1800 042 138 or email [email protected]