Day 4 – How did your family and friends react?
Today I am writing from a different location *wahoo!!!* Look!
Sadly the move (after 4 solid days in bed) isn’t because I’m feeling better (I have a lovely virus that Wildchild decided to share with me). Its because I’m waiting on a technician from adult social care to come over and see if they can provide me with anything else to help me/Chris or give me a tiny bit more independence. Here’s hoping. Anyway mini change of location celebration please *yippeee* okay done with that, onto the challenge.
I am VERY lucky, my friends and family reacted mostly very positively. My dad and Chris always believed me from the start, they saw it, all of it, all the time. They are the ones who fed me, who took me to the toilet, who were confronted with the harsh reality of chronic illness all day everyday.
My mum and my sister weren’t living with us at the time, so it was slightly different for them. I honestly don’t think that they disbelieved me at any point, but they definitely didn’t understand it automatically. I still think that sometimes it’s difficult for them, as they’ve never been my careers and I do really try and hide the bad side from everyone I can (at least I used to, but it’s not helping anyone really, which is why I’m trying to be more upfront and honest, it’s a process though so bare with me). It’s easier for them when I’m iller-than-normal (like now) when I have no choice but to “act like I’m sick” (if that makes sense) or when I look sick (even if I happen to actually be having a very good day) then they KNOW. I think sometimes when I look “normal” or I make an effort (usually because without make up I look like I would scare children) it slips their minds. Like I can do everything a normal person can, like I’m not in pain, like it isn’t difficult, like it doesn’t cost me so much more than them to do simple things. I don’t think it’s deliberate, but it’s hard nonetheless. But they do do their best to look after me and are wonderful people.
Friend wise, my best friend has been my best friend since we were both 4. We met in reception class of school and that was it. We’ve spent time apart, she went to a different high school from me and even moved a 6 hour drive away at one point. But we’ve never been distant from each other, not really. When we have gone a long time without seeing each other we can just pick up where we left off. Both of us will drop everything if the other one needs us. She is Wildchild’s godmother and I am godmother to her kids too. Although I got sick first she has a chronic illness collection of her own, which (I believe) has strengthened our relationship further because we both know but, more importantly UNDERSTAND what it is like to have such limitations in phone calls and social activity. She is, in my mind, my sister and I love her to peices!
Other friends, I’ve been lucky and I can still chat online to friends that I would otherwise be out of touch with, through no fault of theirs (or mine I suppose). When you lack the ability to go out and socialise or talk on the phone things like that tend to fade, sadly.
There are two more groups of friends that have really helped me out and one, shall we say, extended family. People I don’t think I could do without.
Firstly school mum friends. I’ve made some very good friends simply because Wildchild is in the same class as their kids, especially with Wildchilds best friends mum. It really helps that we share our religion too so our kids can do holiday clubs and church events together even though we are on different branches of the same faith. It’s little things like being able to ask for a lift to pick up Wildchild when I’m not well enough, or to collect Wildchilds best friend when it would be hard for her mum, it really is something I am so thankful for. I very much see me and my best friend in Wildchild and hers, I hope their friendship is as special as mine is.
Secondly ONLINE FRIENDS. Without them I would be stumped. They are so wonderful and have organised acts of kindness for me, like when my tax credits prescription exemption was suddenly taken and I was faced with £60-£100 prescription fees every fortnight, they clubbed together and paid for a prepay certificate for me. Another bought me a new wheelchair when I ended up having to be in mine most of the time and lost my independence due to my inability to push myself. This friend used to be a real life friend, but sadly moved a little further afield and then went on do develop his own chronic illness collection, including ME. Such kindness and support is invaluable. Not to mention if I’m stuggling I can turn to them, no matter the time of day (or night) there’s always someone online to talk me through things, to virtually sit with me and hold my hand when things are all too much.
Finally the extended family, my church family. I’m Christian (Church of England), but I don’t talk about it unless asked and I don’t force my faith onto people (I don’t like it when people do that to me, so why would I do it to them). I grew up within the church, but made my own path with my faith that led me (eventually) straight back into the arms of the church family I grew up in. It’s like having loads of aunts, uncles, grandparents, brothers and sisters. I know if I need thoughts, prayers or kind words, either for myself or for others, I can just ask, I can just ask so many people. They’ve seen me on good days and bad, asked after me and prayed for me when I was at my worst and I know that I’ll never be alone because of them.
So yeah, friends and family wise I am SO lucky. Dad and Chris between them are my care team so they deserve a special mention as they are the ones in the front line of what is sometimes utter misery for them I’m sure. And, of course, the wonderful surprise that is Wildchild, she gives me strength, love and light and makes each day (even the most difficult) that little bit easier with her cuddles and smiles.