30/05/2015

MEAM: M.E. & Passing On.

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.

a page from the book 'Badger's Parting Gifts' my teacher gave to my Mum when my great-grandad died
I never know what to say, 'death' just sounds so horrible. But then, 'fluttering away' sounds waaaay too poncy! So, i'm going with passing on. Anyway, onto todays post (the second to last post of M.E. Awareness Month btw!). Death is not something anyone likes to talk about, yet it's a natural part of life that every single one of us goes through. It doesn't matter if someone dies young or has lived a full and exciting life, we all feel the heart wrenching pain of grief. But, waht about when you suffer from a chronic illness, that already leaves you completely drained, and you lose someone you love?

Last year, my step Nan died, I'm going to call her Nannie Beard as we always did, and i think it's obvious how she got the name. She had been feeling ill for a while and all of a sudden it got much much worse, she eventually collapsed and got taken into hospital where they told her she had lung cancer and that it had already spread nearly everywhere. But, we thought we moght have a little time with her before she left us. Unfortunately, we were so so wrong. She went into hospital, found out she had cancer and within 3 weeks she had gone. At first we thought she might come home for a bit and my Step Mum and Mum would care for her, then we realised this wasn't possible and we thought she might go to a hospice, and then we found out it just wasn't going to be possible and within a few days she had gone. I'm so glad i didn't leave it and say i'll see her when she comes home or in a hospice. Yes, when i went to see her she was completely out of it and couldn't put a sentence together, but i'm glad i got to hold her hand and tell her i loved her. Now, i really pushed myself to do this, and Mum told me i didn't have to worry about it, that she would understand, but, me being me, i just had to see her. Unfortunately, there wasn't time for any of us to really tell her how we felt about her and i wish that i could have so badly. But, i know it was even worse for my Step Mum. I think that was the hardest thing for me, not being able to help. I know i couldn't have done much but i've always been the one to try and make things better in our family and just making a cup of tea would have made me feel better. 

Now, my Step Grandad (not married to Nan) has just been told he has incurable lung cancer. Fortunately, he's got at least a few months so the family can go and visit him and spend time with him. Obviously, this just isn't possible for me and i am really struggling with it. But, this time, i have learnt that there are little things i can do to help and to have that connection. So here are a few little things i'll be/have been doing:
  • Send Cards - All of us spoonies love sending little notes to eachother so i'll be putting this habit to good use and sending little notes and cards. Not just to Grandad though, but all the family, in the hope it might make them smile and they'll know i'm thinking of them.
  • Send Little Presents - I know how much it cheers me up when i get a little surprise in the post so i know that he'll love to receive just a little something that will be relevant to him. Like this Box of Sunshine made by my lovely friend, we're also giving away one.
  • Share Your Unique View - Us spoonies have a unique view on coping with day to day life, especially those of us who are severely ill. They say that M.E. is similar to Cancer in many ways and i plan on using that to help out. For example, Grandad is having trouble just eating anything so i'm writing down all the things i find easy to eat, ways to sneak things in and extras that will help give him a little boost. It's given me a way to help and something to focus on.
  • Find Ways To Cope - It's obviously not going to be easy and you will get upset, but we can all find our own ways to get through it. With Nan last year, i found that just offering little things like watching the dogs or just sending little texts made it a little easier but this year, my severity has increased so i'm finding new ways. Last night, i was finding it hard and getting a little upset so i phoned my Mum (though this is extremely tiring) and just asked her about how Grandad was and how my Step Mum was feeling and just had a chat and it really helped. I just think it's so much better to let it out, if you hold it all in it will only get worse.
  • Tell Them - This one's a little tricky and it depends on your circumstances, but if you have that chance, tell them how you feel, talk about good memories and make sure they know you care. I'll be writing a little card for Grandad, as it's unlikely i'll be able to see him, telling him a few things and then he can read it when ever he's ready.
  • Try To Make Light - God, we're pro's at this! Last year, i missed all but 5 minutes of Nan's funeral because we got lost, in the same place, to the same place, twice. Yup. But, as my Mum told me, she would have been laughing her head off at me. And, when Nan couldn't remember the word for boyfriend when she was telling the Nurse who Michael was, Michael lept in and said body guard and it got a smile. And, last night, i said to my Mum and Michael that everyone's just trying to get out of coming to our wedding! The little things help.
  • Don't Feel Stupid - This is something i have real trouble with. 'What if they don't know how i feel?' 'What if i'm not really their grandchild?' What if no-one understands that i can't be there?'. I feel damn stupid all the time and feel like i'm not part of the family. But, as everyone tells me, everyone understands and i'm always a part of the family.  Most of all,  just want to give my Step Mum the biggest hug in the world and it's stupid that i can't just get up and do that.
I know that this has been directed at people who haven't died suddenly as i don't really have experience with that, but i think that most of these can be applied to that situation too. And, my main point is, don't hold it in and be there for eachother. Oh, and Macmillan Nurses are absolutely incredible! There will be two seats reserved at my wedding and they better bloody well be there.

1 comment:

  1. I love this, spoonie mail was such a simple way to stay connected with the outside world, and something that put a huge smile on my face when I was at my worst. It shows people you are thinking of them, and small kind gestures like that really do mean a lot to people.

    xxx

    ReplyDelete