Success At The Party! Take That GP - Gastroparesis Update

Hey Hey Hey :) 

How You Doin'?

This could be a long one again… so grab a cuppa or pop your feed on if you're a tubie like me and lets read!

So, I wasn't planning on posting today and felt pretty darn poopey. We all get those days where we feel defeated right? Well, I'm having many of those days right now! The only reason I decided to post was when my dad told me about someone he was working with today who's sister has GP too. They called her to see who she was under and such and turns out, she is under the same specialist as me. She also is under one of my old and may I add useless pain management guys who we had renamed as Professor Hopeless. I don't know if any of you watch Holby City but if you do this should give you a giggle. 

This Is Professor Hope From Holby
He's great at his job though!

This pain guy looks just like Professor Hope. He has the same habits and disorganisation and is just very much like him only is ''hopeless'' rather than gives ''hope''. Back to the point, my dad actually found out that this girl knew me - well at least through my blog and videos. Apparently, on bad days she'll read it and it can help her feel less alone, like someone understands. It was then that I really felt like sharing my experience doesn't just help me, but it can actually reach out and help others. It made me feel a bit better and less useless if you like. Gave me a bit of that uplifting feeling that I needed - if that makes sense. I know how she feels and many others who suffer from GP and all other sorts of illness. And so, here I am…. ready to give you another update and continue sharing my journey with you all. Just before I do get into it, I would love to chat with you too and hear your experiences so be sure to leave comments or tweet me or Facebook message me ETC… Right ok, lets do this :) 

I had one more hypnotherapy session almost 1 week ago now. It was actually the best session I've had so far. It ended up being more like a counselling session whist in hypnosis but was good. She asked me what the one thing was that I always wanted to do and so I told her it was to move to America. She told me to do it. Obviously not right now as my health is quite clearly too unstable but she told me to use this time that I'm not able to be out doing stuff or whatever to plan what I want to do once I'm able to. Show Gastroparesis that just because it stops me doing certain things now, it still doesn't win because I get to use this time to plan things that others may not have the time to do. She reminded me that I need to start doing things for me and that are going to make me happy and feel less stuck like I do. I need to do a job I enjoy, I need to do things on a day to day basis that I enjoy and make me happy. I now have my mind set on moving to America in the near future, getting a job out there and really show GP who's boss. It might be just something I need to get out my system or it might be something that will turn into something amazing and I'd be super happy but I'll never know if I just say I want to do it and don't do it. Not sure my parents are best happy that I'm planning to go half way across the world but gives them an excuse for a holiday once I do it!! 

I am going to move to America
I feel happier and calmer there no matter
what the circumstances.
I need the fresh start so I WILL make it happen!

If there's one thing you take away from this post today, let it be to remember that this is YOUR life, no-one else's and you have to do things that are going to make YOU happy and enjoy your life and what you are doing. We all forget that but at the end of the day, you only get one shot and we don't know how long it's going to be so don't keep putting things off and saying I wish I could do something…. DO IT… MAKE IT HAPPEN! Anything is possible and you can achieve it if you put your mind to it :D If you're in pain after you eat like me, sit on your laptop (not literally) and plan what it is you want to do… Show Gastroparesis or whatever the obstacle is that you will make the best of whatever you have been given and if that means put plans into place for once you kick its ass then do just that :D 

More on the GP and pain side, she told me that I have to remember that, I deserve to eat the food and my body deserves to have it. I can't think that I don't and give up trying to eat!! Also, to use the time after I eat when I'm in pain to plan things I'm going to do so when the time is right, I just have to put the plan into action. It's also a way of distracting my mind because if you think something is going to hurt before doing it, the pain is going to be 10 times worse because your body basically makes the pain before you even start. The mind is the most powerful thing and it's only now that I realise why they wanted me to go down this route. Though at £240 a pop, it most certainly won't be a regular thing but maybe once a month? Can't hurt if they're like the last one was right?

On a very positive note, I had our Christmas Staff Party at work on Sunday just gone. I helped organise the whole thing so had to be there but had been super worried about the fact I'd be on a table of 9 other people eating a meal for part of the night. The hypnotherapist told me I should try make light of the situation. Ask the others what it tastes like and if it wasn't great have a joke etc. When the time came for my table to go get the meal from the buffet, my heart was pounding and I became really uncomfortable. I was afraid to even try and eat as I hadn't yet and didn't want to ruin the rest of the evening but I suddenly felt too uncomfortable to wait on my own at the table whilst they were up.

Who said a tube or a health condition
can stop you?
I say otherwise!! 

I guess it was because the other tables would see me sitting there alone. Even though the majority of the people there know all about my health, my mind took over. So, my friend said why not see if there's something to nibble on or even have in front of me just to feel a little less isolated. So, I did. I went up, picked up one of the small round pitta breads and a couple of nacho's and went back to the table with everyone else. I just left it sitting there for a while and then thought, screw it, just go for it and I did. It took me maybe an hour to get through the pitta bread granted but I plucked up the courage to do it. I put my fears aside and just nibbled at it whilst chatting away trying to keep my mind completely away from pain or fear or anything. Okay, so I did get pain - a sharp one at that. Luckily we were still seated for another hour I think after eating so I didn't have to attempt to move straight away and could grit my teeth through the pain. It did settle down quicker than it normally does so I did get to show my moves on the dance floor later on and pose for the photographer in his little photo shoot set up. Although I still had the pain, it was a HUGE achievement to even pluck up the courage to eat and not just to eat but eat outside of my house in front of other people not knowing what the consequences would be. Granted, I haven't eaten since but it was a big step in the right direction. That's what I have to hold on to… So take that Gastroparesis!! 

I have found recently that candles really help to calm me down and keep me relaxed. I've been loving putting lighting one when I'm getting ready to go to bed or watching videos or TV or anything really. Sleep is really important for your body and if you're like me and struggle to sleep, I've found that relaxing my body and mind before I go to sleep helps me fall asleep if nothing else. Obviously I don't leave it going all night, but it helps with that initial part of falling asleep!! Every little helps eh? Who says that? Tesco? No, Asda? Wait, no it is Tesco. Ahh - either way it does… sleep can make a big difference. I've been loving the Bath & Body Works candles that I got from amazon and also one of the Glade candles :) I even found one that smells just like when you walk into a bakery and one that smells like when you walk into Abercrombie….. HEAVEN :D

Hello Aberombieeeeeee 

Cookie Addicts HEAVEN!! 

SO CALMING and yummy

So, as I'm sitting here with my dog on one side and my feed set up and running on the other feeling like absolute POOP (my parents read this sometimes - no swearing LOL), I have written this post and actually, I feel like I've let it out. This is honestly like a release for me and to know that it helps other by me sharing my journey makes me feel great. I follow other peoples journeys and they help me so to know that I'm doing the same keeps me going.

Cheap & Cheerful yet so so calming!

I think that is going to be all for today as I don't want to hurt your eyes from staring at the screen to long but please remember you are NOT alone. You have me… who else do you need…. DUH :P 

My question for today is: What is the one thing you have always wanted and dreamed of doing that you think is out of your reach?

Stay Strong

<3

Hypnotheropy & Specialists Galore - Gastroparesis Update

Hey Hey Hey You Wonderful People,

How are you doing? 

So, I thought I'd do you a little update. When I say little, I mean quite a bigger so grab a cuppa or a duvet if you can't have the cuppa and get reading :) 

Since the New Year, I have had a crazy total of 4 appointments in 3 weeks. Not bad going!! Hospitals are my second home but I must be grateful, some people don't even have one. So, let us go through all the appointments one by one to see my past 3 weeks of Gastroparesis. 

I have had 3 hypnotherapy sessions now and honestly, I can't say all that much. It has taught me how to breathe properly because I apparently haven't been and it doesn't help anxiety attacks as my breathing is bad to start with. My last session I had was EMOTIONAL to the max. I was in tears for, well….. most the session. I just got so teary talking about the pain I've got and been dealing with and eating and all that scary jazz. I've decided to have one last session next week to end things badly and get some last techniques. Unfortunately, at £240 a pop, I can't just keep going unless I'm seeing results. Im still not eating and I'm still in pain and been very shaky, anxious and on edge recently. We shall see what that session brings.

My love -
A Tall Soya Toffee Nut Chocolate Cream Frappuccino
With Caramel Drizzle = Pure tastiness and happiness :) 

I have been managing a little more liquid by mouth. Although, we don't know if it was the hypnotherapy or the medication that did that but my guess is the medication if i'm honest. It feels good though because I've stopped off in a Starbucks a couple times with my dad or grandpa in-between or after appointments. Feels like I'm part normal again. I may drink it at snail pace to keep the pain levels minimal, but I'm having a drink and not ending up on the floor in tears. It gives me a little bit of hope that may, just maybe… food could be next. I just need to pluck up the courage to try and eat because every time I think 'yeah, I'm gonna try eat today', I'll go to eat or think about going down to my parents and say I want to try and eat, the anxiety kicks in and the idea fades away and does not happen. Let's keep out fingers crossed!! 

Next up is my pain specialist appointment. Nothing too dramatic happened in all honesty. He has upped my dose of the Lyrica/Pregabalin medication. I am now at a dose where he would expect to see some sort of change. Fingers crossed!!! 

My specialist…. well, he went over everything that has happened in the last however many weeks it has been since I got my tube as I hadn't seen him. He's happy with how the feeding is going and it is definitely helping me put on weight. YAY!! Maybe I'll be able to fit into my clothes properly soon :). Tube wise, we have been told very different stories when it comes to NJ tube changes. Some people say to change it to the other nostril every few months, some say you can keep it for as long as it's not rotting or split or blocked and others say they have never changed nostril. Confused much!! At the beginning of the appointment, he told me that in 6-8 weeks he would look at what to do now as the NJ tube was never long term and was to strengthen and fatten me up basically. He said in 6-8 weeks either we want me to be managing to eat enough to keep my weight up or think about other types of tubes such as the PEGJ I had last time or a JEJ. They both go through your stomach wall and so are also hidden by your clothes. However, as I learnt last time, they also come with many other issues such as skin granulation and many infections. 

PEGJ Tube that I had last time. It is a lot more invasion (and painful)
than NJ tubes as it goes through the skin.
I have a second belly button now HEHE (bet you can't say that) 

I think he thought I didn't like it appearance wise or something because as soon as I said that I quite like my tube and have had no problems with it but instead people have been amazing with it even at work be it customers or other staff. As soon as I said that he told us to forget the 6-8 weeks and to go to him when I was ready to and knew what I wanted to do next. However, still working around a 6-8 week mark to then put a more long term plan into place. In all honesty, I am happy with the NJ Tube, sure, it sometimes hurts my throat and rubs a little on my nose and hangs but I'm getting more used to it and finding ways that helps such as wrapping the tube (gently and not bending or damaging) up around my hair if my hair is up. I forget half the time that the tube is there and quite happy to get on with my life and youtube videos as you'd see if you watch them. 

Talking of youtube, I have been getting on with it as per usual all be it not regularly once a week like I started out doing. But, as often as my body lets me :) I love it. It's such a release of performing energy and I really enjoy doing them and watching them. I've also made it over 100 subscribers which is freaking AMAZING and I am so grateful and never thought over 100 people would care or want to watch me being an absolute donut with a camera. If you have some spare time, maybe you could go check my channel out? It could change your life if you CLICK HERE! 

Well, I think that just about covers everything for now!! 

My question for you all today is: What is your favourite drink from Starbucks?

Speak to y'all soon

Stay Strong

<3

HAPPY NEW YEAR - Here's to beating Gastroparesis' Butt

Wellllll Helloooo there 

HAPPY NEW YEAR!!!

I want to start off by saying that I hope you all had an amazing Christmas and New Year!!

Before I get into my little update for you all, I want you to raise a glass or medication bottle perhaps and repeat this sentence… 

"I just let Sophie tell me what to do because I'm a blog reading banana pie" HAHA I'm just kidding, but seriously say this one 

"Here's to a happy and healthier new year where together we will beat Gastroparesis' Butt and many other illness and obstacles"

*CLINK* - That's the sound of our glasses/medication bottles touching :D

Okidoki, so now for what you probably click on this post for… an update! 

There isn't too much to update since my last post in all honesty. I am super happy with my feeding tube and have become a lot more used to it. I barely feel it and remember it's there for the most part. Although, for some reason, it's always super uncomfortable if I turn my head right round to the left. Weird. 

NOT MY HAND …. NOT GUNNA LIE
I DIDN'T HAVE THE ENERGY TO
GO TAKE A PICTURE MYSELF :P
FORGIVE ME?

Nippy (my tube) and I are good friends and getting along great. I've been put on a medication to try called Pregabalin/Lyrica which is an anti-epileptic one. I was started on a very small dose as we all know what my body is like tolerating new medication. All was A-Ok and I had no side affects. After 5 days of taking it, I was told to double the dose. So, that's what I did. Unfortunately it ended up that the 5 day mark landed on Christmas Day when we had about 17 people in our house. It didn't make me feel more ill or in pain… oh no… it just made me so very sleepy that I ended up going to bed and falling asleep around 7/8pm on Christmas Day and was out for the count until the following morning.

HAPPY CHAPPY :D
GOT SOME FUNKY FACE
JEWELLERY 

Atleast I wasn't throwing up or feeling dizzy or anything like that like some of the other medication side affects I've had but for a good few days it took away all the energy I did manage to get through having my tube feed and left me feeling like I hadn't slept for years and not eaten on top of that. I'd fall asleep at like 7pm every night for the next few days. Now, I don't feel as tired but still not as much energy as I had first got with the feed. Kinda sucks to be honest but the pain levels haven't been as bad recently. Granted, I have't taken anything by mouth other than a few sips of Guava juice and some hard boiled sweets, but my day to day pain has been much better. I'm pretty nervous to try and eat something proper as I'm scared the pain will come back, so I keep putting it off. We will also probably slowly keep increasing the medication dose 'till I'm at a big girl dose. I'm also pretty content with the tube right now HAHA!! Quite like having the security and the pressure it takes off… couldn't imagine getting rid of the tube right now if I'm totally honest. And hey, who wouldn't want some extra funky face jewellery… can't buy this baby in the christmas sales!! HAHA

I'm still working and doing plenty of online shopping like normal. I have however, got my makeup a bit more organised in some proper storage units so that's exciting… right? 

I'm uploading a video every so often when my energy levels allow me to film and edit something but I do really want to try get them more regular again at some point. I've decided that this is my year. I have a few pretty darn poopey ones and it's about time I have a good one. I want to achieve things and learn things and experience things I haven't so far! I'm going to start living for me and show Gastroparesis who's boss. 

'I have Gastroparesis, Gastroparesis doesn't have me'

Whether I end up having a feeding tube for another 3 months or 3 years….. it is my life and it's not going to stop me achieving and experiencing things I want to do :D FIGHTING SPIRIT TALK!! 

I also plan to do some Tubey videos and as well as some more general Gastroparesis related youtube videos to raise awareness… just got to figure out what!! Unfortunately my lil old brain (and body for that matter) doesn't work that fast :P 

Well that's all for now

Question of the post: Do you have any New Years resolutions and if so what are they? … comment below or tweet me by clicking HERE :)

Stay Strong

<3