Caring for the girls is something I don’t give a second thought about – they are my everything and I strive to do all I can, to be the best advocate, mother and friend to them. Mostly I am perfectly happy in my bubble and these four walls.
However, just every now and then it hits me how isolated we have all become and how much the girls illness has affected life for each and every one of us. Most evenings by 6pm I am desperate for the time to arrive when I can crawl into my pj’s & snuggle down under a blanket with The Dave, sitting in quiet, comfortable silence. I’m not a social butterfly, a party goer or the life and soul of a gathering. I like being with people who understand our situation, who will ask briefly how the girls are, to acknowledge their illness and then knowing how limited my conversational topics are, to spend the rest of the time chatting about completely different topics – sharing their lives and adventures with me and making me feel included and involved. We have a couple of wonderful local friends who we see when we can who do just this. They know we can’t plan to meet in advance and so are happy to socialise on a short notice basis.
However, as all carers out there will testify to – caring for others can put a huge strain upon relationships with your extended friends and family. It’s understandable, they get fed up asking you to meet up or go places with them to have you reply, “I can’t I have to take X to a medical appointment”, or “I can’t X really isn’t well enough for me to leave her” then of course sometimes it’s simply “I can’t, I’m just too tired and have so many chores to catch up with”. So invitations soon dwindle and stop, messages and phone calls soon drop off and before long you feel that you are no longer part of the family or friendship circle but now just an stranger with a familiar face who is looking in from the outside. A living memory to everyone within but just not quite included, just thrown a cursory nod every now and then.
I have found some exceptional friends on-line who I have met through the closed forums providing support and advice to me as a carer of children with chronic illness and the fact that both myself and The Dave are suffering from stress related illnesses too. These wonderful people have helped me to feel connected to life outside our walls again and their love and support is unconditional, always forthcoming and more importantly they fully understand if you are absent for a while or don’t reply for several days. These friendships I cherish and who knows, one day we may get to meet in person, face to face – that would be wonderful.