Monday, 21 March 2016

The Importance of Understanding ME

Do you understand M.E? Do you know what it's like to live with M.E? 

Since becoming unwell with M.E, finding a fellow sufferer to talk to about my illness became very important to me. I wanted to be able to talk to someone that got it, that really really understood it. 

I joined twitter, instagram and facebook in order to connect with fellow sufferers. I knew no one in "real life" with M.E but being in a virtual world with hundreds of others who knew exactly what I was going through, brought me great comfort. I was no longer alone in this. Chronic illness can be so isolating, no matter how many people you have around you. I was speaking to people that felt the same as I did, that experienced some of the same symptoms, they knew what this horrible disease was like to live with day in, day out. 

As much as people can try, unless they have M.E, they will not understand my struggles and my battles. I can talk to them, but they might not know what to say because they aren't living it. I firmly believe you have to experience something to understand it. So when people come along, with the same illness as you, similar age to you and are a really nice person, it's like a little miracle.

Recently a couple of my friends have been diagnosed/ going through the process of being diagnosed with M.E, and although I truly wish they weren't in the same boat as me, it's just so comforting to have people to talk to that are experiencing many of the same things as me.

One of my friends and I have met up a couple of times now and I realise that I feel like I don't ever want to leave her house, because I am in the presence of someone that totally understands me and I find that very rare to come by. She totally gets it when I say I can do this thing, but not that. Or, walking up and down the stairs is getting too much for me. She loved her job before she became too poorly to work, just like I did. We have a great deal in common.

We have a conversation, we don't just talk at each other, like it can often feel like with non sufferers, we connect, and I'm so thankful for that. 

I also feel like my newly diagnosed friends have given me a bit of a purpose. I feel like I can help these too young ladies. I want to help them. I have made hundreds of mistakes with dealing with M.E and I hope that I can pass some of my knowledge onto them now and hopefully stop them making some of the mistakes that I made. I want something positive to come out of my illness and if I can help these two, even in the tiniest way, then I would have achieved that. 

Having a person who I can discuss similar issues with is the best medicine for me right now. 

Take care and go and connect with someone,

Lots of love,

Rachel xxx

P.S My twitter is: @_Rachie_B and my Instagram is @_RachieB - Please feel free to follow me and chat to me!

Wednesday, 6 January 2016

M.E, my Grandad and I

My Grandad was like my king. In my eyes, he was the head of my family. I adored him completely. He was loving, caring, funny, kind and was such a character. 

My Grandad passed away three days before Christmas 2015. My heart is broken. He meant the world to me. 

Over the past four years, things have changed in my life, becoming ill with M.E, meant I could spend more time with my Grandad (see earlier post). I will be forever grateful to M.E as it meant I couldn't work but I could spend time with Grandad which I wouldn't have been able to do if I was still healthy and working. However, there are other times when I wanted rid of M.E because I wasn't well enough that day/ week to see him. My health has got worse slowly over the four and a half years that I have been poorly, and I ended up being at the point of being able to see my grandad once a week/ once fortnight maybe. I know that I am lucky to be even able to get to see him that much, but it didn't settle well with my instincts. My heart and instinct was telling me to look after him. My poor body just couldn't do it and at that point I would get frustrated with M.E. Grateful one minute, frustrated the next. 

Like all of us M.E sufferers, we want perfection, we want things done well, we want to do our best and in this situation, all I wanted to do was to look after my dear Grandad myself. It wasn't viable as I have carers to look after myself, but in an ideal world I would have. I wanted to show him how much I loved him and to just take care of him. 

My Auntie and Uncle and cousins really really looked after him in the last week of his life and I just know he would have loved it. Charlotte, one of my cousins, and I sang with Grandad one afternoon for a couple of hours. We had Adele - Someone Like You on loop, as he loved Adele and he still knew some of the words to that song. It was a magical afternoon that I never want to forget. 

My Grandad was so loved and so cared for. He was one of the best men that have walked this planet. 

Gone are the days we used to share, but in our hearts, you will always be there.
Rest easy Grandad, and you take care of Nanny now,

Take care guys,


Rachel xxx