I really feel like I have found my calling with my illness and the blog and YouTube channel, I feel like I am actually making a difference to the lives of other people living with chronic illnesses and hopefully raising awareness of HMS. There's so little on the web about what it's actually like to live with the disease day to day and when I first got diagnosed it's something that I really wanted to know.
I can't lie, it is hard being so honest with the world but I would be doing a disservice to everyone else that suffers with HMS if I didn't paint the whole picture. Innately I am a very positive person and my moto for the channel is 'Positively combating chronic illness' and that is my main goal in all of this however, I have to show every side of it no matter how hard that is for me personally.
Amelia-Rose goes back to school on Wednesday and I must admit I'm not ready to give her back yet! I know that a lot of parents have been itching for the new school year to begin for a good 5 weeks now but I definitely do not have my tent pitched in that camp! I am quite the opposite actually!
I thought it would get easier the second year but I actually feel more churned up this year then I did about her starting school! We are so incredibly blessed with the school that Amelia-Rose attends and she does so well at school but still, I do so love her company. I keep joking with her that I will be like the children you see at pre school clinging to their mummy's leg ''Don't go! Don't go!" She finds my fake desperation VERY funny! Of course, I am only joking though, I am so careful that all she sees from me about school is sheer excitement! I don't want her getting a complex about school again like last year after I came out of hospital.
When I reflect on the past 6 weeks I actually cannot believe how much we have done! Everyday has been an adventure and I am honestly so proud of myself for everything that I have done with Amelia-Rose. I love that I've been vlogging too so have footage to look back on and can remember every day.
It's been a beautiful summer and one I hope to hold on to forever. My memory is probably the worst it's ever been right now but I'm not letting that defeat me or get me down. That's what the vlogs are for. I can watch and remember through them. I tell you what, this new venture has been a huge blessing to me.
Tony and I sat and had a very serious chat about me starting a YouTube channel. I was nervous about what to share and how much to share, it's an incredibly big thing to put your life out there let me tell you but I just cannot shift this feeling that this is what I am meant to be doing. Tony was amazingly supportive and didn't have any of my concerns. He has been my champion with all of this! I also check with Amelia-Rose that she is happy with the footage before I post it and we're very careful not to give out any personal information like where exactly we live or our last name etc etc It's turned into a bit of a family holiday and is hilarious when Amelia-Rose makes off with the camera to film her own vlog!
Once Amelia-Rose is back at school I hope to get the balance back between the channel and the blog. At the minute I literally only have the time to film and edit (and even then I am editing sometimes still at 2-3am in the morning because I don't go on the laptop when Amelia-Rose is up) at the minute but when we get back into our routine I want to also find time to concentrate on my writing also.
I had a great catch up appointment with the lady I see at the pain clinic this week. I haven't seen her for a long time because I was having so many appointments we both felt like we could put our appointments on hold for now because sometimes i was having as many as 2 or 3 appointments a WEEK with various people.
Now things have cooled off a bit with London I will start seeing her a bit more often. It's just really nice to sit and talk for an hour with someone who really understand pain.
I told her about everything I have been doing to manage my pain and how much better I have become at pacing myself and she was so proud of me it was amazing! I told her all about my channel and the blog and she said how inspiring I am and what a great role model I am for other people living with chronic disease because I try so hard to still enjoy my life. It was really touching and has given me a real lift. It's nice sometimes to be told you're doing a good job. it was more then nice actually. It was pretty damn awesome.
Personally it's something I do a lot for other people. I am a great believer in affirming people and will always try to encourage and cheer on those around me, even if I don't know them that well. I think the world would be a beautiful place if we all spent more time building each other up and less time tearing each other down. I know that sounds a little disney land but it's true. Pause and think for a minute, what does is actually cost you to build someone up? Money? Nope Going out of your way? Nope. Does it hurt you? Nope. Time? Maybe a little but not much. Encouraging and being someone's champion is actually a gift that you can give for free.
I'm carrying a lot of burdens at the minute outside of my bubble and I must admit there was a day last week when I really thought I had had my fill. I was ready to go get in the car drive to a field and have a really good scream! It's odd isn't it how you can have one part of your life so together and so happy and yet the other part is just, well, too much. You feel like the snowman glued in a snow globe. You can't move or protect yourself from everything that is swirling, fluttering and falling down around you. You just have to stand there with a top hat and a carrot for a nose praying your hat doesn't blow away or your nose drop off.
So you see, going into that appointment and being told what a great job I was doing really did build me up, it gave me new ground to stand on. It made me believe that actually I really am doing my best and I really am seeing results (as appose to it all being in my mind!) and that led to me today almost, re finding my faith.
I have never stopped believing in God. Ever. I've never stopped talking to him but since March my prayers have pretty much gone "I don't know how to talk to you anymore. I don't know what to say. I just.... I dunno. There's no words"
I said to my friend "It's not that I don't believe or I can't see him working in my life because I do and I can but I can't feel him right now. You know, that feeling of the spirit whether it be calm or bursting out of you. It's gone"
Then today when I was out shopping with Amelia-Rose and Tony I got too cold and had to come home. We were actually almost done anyway and I was going to buy a cup of coffee but I said to Tony I might as well just go home and make one (as I was going to take the coffee home anyway) so they went off to the tool shop and to the toy store and I came out and made myself 'proper coffee' (I will admit I am a bit of a coffee snob at home. I like proper coffee) I went and sat down with the paper and thought to myself '"ooo I could have some telly time!"
The tv was still tuned in to what Tony had been watching the night before and as I began to channel flick I happened across one of the christian channels. I watch preachers online but have never ever watched any kind of church on the t.v before.
Well, within minutes I was sobbing huge big uncontrollable tears all down my face because honestly it was like the preacher was talking just to me.I guess, like God was talking just to me. It gave me shivers and goose bumps and I felt the most connected to the Lord that I have done in months.
I actually ended up recording it and am going to share some of the scripture here. I really need to sort my walk with God out and I feel like now is probably the time. I need to figure out how to fit together now that I've changed so much and my life had changed so much because I do want to be a beacon of his light. Every single time I perform on stage I always say the same prayer...
"Lord let me a beacon of your light.
Let every word that comes from my mouth
be the word you want to be heard.
My voice is of you and I thank you
for my blessing.
Lord I give this evening over to you.
Let me shine for you"
And it occurred to me today that maybe I need to say that prayer everyday. The day is my stage, the world is the audience. Maybe I need to give myself over to him every day and renew the bond that we have so that I can go forward and be the beacon that I always wanted to be.
Catch up soon guys
Love ya
x x
p.s (I am putting this up now to get it out there and will proof read and edit it tomorrow!)
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