Miscellaneous
I know my husband never expected to be my primary carer – does anyone! So, what really happens when your partner suddenly finds themselves looking after someone who is now chronically ill? They were not given a choice; we didn’t have a choice and our partners are expected to cope with the complexity of ME – Myalgic Encephalomyelitis!!!! How do they cope with our daily fluctuating limitations and should we be encouraging them to safeguard their own mental health? Should we be concerned about the mental wellbeing of our partners, our children our family and friends. They may struggle to understand and accept our illness, but this doesn’t mean they don’t care – they too are fighting the invisibility. Yes, they are angry, resentful and frustrated, but do we need them to feel comfortable and supported when telling us how they are feeling. This illness impacts everyone’s, and we need to learn to nurture these relationships whilst our partners, our children learn to cope. It’s not easy, it’s a struggle and our lives may never get better, but we can try to learn to cope by listening, acknowledging, believing, preserving and hoping one day things may get better. Key takeaways No one really had a choice This illness has no manual or there isn’t an instruction book We need to overcome the doubt by belief, by having the courage to overcome the fear Our partners experience isolation, doubt and fear Our primal instinct is to Push – but does this really help, we are all helpless – we need to understand each other Learn to encourage and accept we need to stop and rest, it is OK… to press pause and rest Help each other feel included and we need to stop blaming each other – we are no longer in control Encourage each other and encourage our children to discuss openly how they are feeling without the fear of retaliation – we need to share Can we help change and develop their mindset – we need to remember this illness isn’t easy to live with We need to remember they are still proud of us – we have the renewed strength to keep trying At times they will not know what we do and find themselves helpless, we know what it is like to be helpless and we will need to offer them our support to keep trying – to carry on They need to learn to ask for help and learn more about the illness so they can understand With time, we may learn to heal and find peace with this illness, but they may always resent this illness and may never find peace, and we need to accept they may never heal This is our journey unlocking our visibility! Together we can still make a difference. Valuable resources: Action for ME and the NHS Connect with me on Facebook Visit our official website www.jak-group.co.uk With thanks to: Jamie York and Rob Moore Oli Corse (Intro and outro) purple-plant.com (Music) braydesign.co.uk (Darren Bray – Graphics)