The Switch Off - Pull Out

Heyyy 

How you doing?

Bye Bye Tube =[

I can't quite rememeber exactly what I said in my last Gastroparesis update post, however, I do believe quite a lot has changed since. The tube has come out for starters which is not cool because that is my baby, that is what has got me through this far. And if that was not bad enough, the pacemaker has also been turned off. I'm no longer officially "Robocop" for now HAHA!! The two things that have kept me going all be it not amazingly, but nevertheless I am still alive with them. Not having the pacemaker on has certainly showed that it was working to some extent. The pain and nausea I have had is back to how it was at the very beginning of this. I've had a few retching sessions after attempting to eat which sucks because this triggering off extra anxiety (as if that wasn't bad enough at the moment). But the pain..... oh my goodness has the pain been bad.

Now, although the pacemaker isn't for the pain as such and is more for the sickness, it clearly helps a very little bit. Since the pacemaker was turned off last Wednesday, the pain has just been getting worse and worse every day. The pain during the day without eating is really bad too since the tube and pacemaker has come out/turned off. I'm not to sure if it is because the medication that was helping the 'normal' day to day pain is now going in my mouth rather than down the tube or if it is because the pacemaker being turned off. Either way, it SUCKS.
I ate some soup along with a small amount of potatoes and mince meat the other night. I have not been in that much pain in a very long time. I am not a happy bunny.... at all. that much pain in a very long time. It was horrendous. If I didn't have my knees bent up to my chest, I felt like I couldn't breathe it was that bad. Normally, with the help of my dad, I can crawl up to bed with him kind of pushing me along. On this occasion, crawling was not an option. My dad ended up getting my swival chair that is on wheels and wheeling me to the stairs, the stairs were then a nightmare. He then carried on wheeling me to the toilet and to my bed. I was in so much pain it was ridiculous. On the plus side, I've been told by fellow Gastroparesis girls, that giving birth is less painful than the pain we get, so, if I ever have kids, it'll be a breeze. I'll just sit there with my legs open singing and chatting whilst having a laugh HAHA!

So, I am trying this new treatment thingymabob which is why the pacemaker has been turned off. We don't know all that much about it and it hash't been tried or used in that many GP patients. So, guinea pig Sophie once again. I will be sure to tell you all about it with pictures and stuff when I know more and have used it a little so I can actually comment on it rather than ramble on about something I have no idea about. That would be pretty pointless and a waste of your time. That's me being thoughtful HAHA. It looks like it could potentially do something for general day to day pain, but it's early days and who knows with my body. I'm going to do a full blog post soon though so don't worry :)  

My mood has.... Well.... It's improved a little I guess. It's up and down to be honest. Not as badly as it was but I'm still all over the shop. I'm starting to be able to put things back into perspective and try think more positively so that's a good start. I've also got close to one person in particular who also has GP and we've been talking loads and it's really been helping. My friends from cheerleading are also really helping me out in so many ways that they probably don't even realize. Cheer helps me loads but making these friendships with people who enjoy the same as I do and them being so supportive and accepting and wanting to help and understand means so much. So if any of you are reading this .... I love ya and see ya Tuesday haha <3 
Well, other than being in a lot of pain, the tube coming out and the pacemaker being turned off, I don't think there is much else to update you with. It's a pretty short update on this occasion.
I did just want to say before I do go though, a huge thank you to you all. I started writing a blog to raise awareness for Gastroparesis as well as to try and help others suffering and to also help myself. It lets me release so much through writing these and really helps me clear my head and release emotions. The response I have been receiving lately and all the really kind words for you have been amazing. It has been just what I needed and something I never expected. I don't care whether I get 1 view on a post or 100 views. It helps me by writing them and if it only helps one other people to not feel alone or to understand how a family member or friend is feeling, then I am one happy bunny. So, Thank you :) <3

Well, that is all for today
Until next time

Stay Strong
<3

Self Blame: The Ultimate Emotional Absue

Hey Hey Hey,

Today I wanted to talk to you about something that I also still struggle with. And that is, Self Blame. People blame themselves a lot for a lot of many different things. Sometime, we are to blame. However, other times, we are not. Certain things are out of our control. 

I do believe my body HATES me!

I'm guilty as charged when it comes to blaming myself for things. I always do it whether it is or isn't actually my fault. I blame myself that I have no money but thats my fault for shopping too much. I also blame myself for my health or things that happen due to my health. For example, if I go out for the day and do something that requires a ton of energy and I come back at the end of the day in a lot of pain in my tummy, I blame myself and say I shouldn't have gone out and done whatever it was. I blame myself when things start effecting my family because they have to change plans because of me or I can't do something for them that I would have been able to do if my health was stable. Or, if I sit and eat some dinner or cheeky snack and end up in pain, I blame myself and say that I shouldn't have eaten whatever it was and now it is my fault I am in pain. But, in reality, it is not my fault. It is not my fault my stomach can't handle certain foods or activities and gives me pain. I have no control over how my stomach reacts after food or anything else for that matter. I know for a fact many of my Gastroparesis buddy's do the exact same thing. I saw someones status a few days ago saying that it was their fault they were in pain for going out to a fair for the day. How on earth is it their fault their tummy and body hurt from a day out that anyone in their 20's (or any age for that matter) would be able to do. It's not their fault and it is not fair.





You're not to blame......

I can't really sit here and give advice on how to stop thinking it is constantly our own fault for things that are just out of our control because I do the same thing. I have no idea how to change my own mindset to not think that. The reason I decided to write a post on this topic is because it is something I see often, particularly in chronically ill people. We blame ourselves for our health condition and the pain or sickness it gives us. If you sit there and eat a pizza and then throw it up and have horrendous pain, is that your own fault? NO! But for some reason, we still blame ourself. I've seen quite a few people (or their family writing it about the person) write Facebook status' or say to me that they feel like certain things are their fault, when, in reality they have done nothing wrong and nothing we aren't entitled to be able to do. 

Blaming ourselves for our health difficulties, feeling guilty about them, and sometimes even hiding them from others, are not surprising to be honest. Given huge amount of media stories and advertisements telling us that good health is within our control: we need only exercise, eat right, and get enough sleep. This simply isn't always the case. We're human bodies, and bodies are subject to illness, injury, and aging despite our best attempts to follow these "prescriptions" for good health. When either we or the world we create around us does not meet this illusory ideal, we often opt to take on fault and responsibility that is not actually ours. Our failure to recognize the balance of responsibility in any given situation leads us into the trap of wrongly taking that responsibility, which can quickly evolve into self-blame. Self blame can be paralyzing and can stop us from many things in life. We some how need to realise that we are not perfect and this idea of perfect health is non exsitant. I mean, what is perfect? What is normal? Just because Fred Bloggs can do this that or the other and so can Bob the builder, does that really mean it's the normal or is perfect? I think not. Everyone was made differently and given didnt journeys in life. He above only gives us obstacles when he knows we are capable to get through it. It is to give us a challenge and something to do so we don't get bored? Or, atleast that's what we can say to help us get through the bad times.

Life would be boring if everything was
already perfect. Right?!

Well, I think that is all for this post. Don't want you all falling asleep on me.

I hope you have a good day :)

Stay Strong
<3

Alone In The World - Isolation

Good morning, afternoon or maybe even evening,

who knows what time of the day it is that you're reading this. 

I wanted to talk about something that I have felt during my health problems and even before. It is something that you can feel whether you are healthy or not and could be anywhere from school to work and by family or friends. Isolation. 

Isolation is a horrible feeling to feel, but, it is one that most will experience at one point or another in their life. The thing about isolation is that you don't necessarily have to be physically on your own in a room. You could be in a room with 20 people or even 100 and still feel isolated.

During my illness in particular, I have felt so unbelievable isolated at times no matter what people that care about me have done or said. You see, as I've mentioned before, I am Jewish. Being Jewish makes having difficulties in eating extremely hard. Food is a BIG thing in the Jewish religion. Everything is celebrated around food and gatherings all involve food. Recently it was Rosh Hashanah and Yom Kippur. Two big things. Rosh Hashanah is the Jewish New Year and every year for as long as I can remember, my whole family get together in the evening for a big meal to bring in the New Year. And the same thing goes for Yom Kippur. To end the fast, everyone gets together and has a big

meal to end their hunger pains after not eating for the entire day. Wouldn't it be nice to be able to do that :(. Anyway, back to the point, for me, I don't feel comfortable to go there and sit and watch them all stuff their faces and talk and laugh and then get up from the table and eat some more snacks and desert. Having said that, staying at home on my own is also uncomfortable and makes you feel isolated. There is that dilemma. If I go, I feel isolated and uncomfortable but if I stay home alone I feel isolated because I am not with my family and missing out every time. What do I do? Whether I am there with everyone or at home alone, I am still uncomfortable and feel isolated from my own family which is not their fault but how it is. The worst part is, even if I was so get a friend to come round or go out with them, it doesn't change the fact that I am feeling isolated from not being able to join in with family gatherings because everything involves food of some sort. It is just the way of life.... especially Jewish life. 

Even when people change their plans so it doesn't involve food and can mean I can join in, still leaves me feeling bad because I have gone and had to change everyones plans or birthday traditions for instance. I wish I could sit here and say I have found a way to stop feeling isolated so that I can share it with you all, but, the truth is, I haven't. I WISH I did. I feel isolated from friends sometimes because where as before we could go out for dinner in the evenings or get take away, we can't anymore. Sometimes that means I stop getting invited to things (for when I am well enough to do something). If you think about it, everything usually involves food at some point. You go out for dinner, get movie and take away, you go to the movies and get popcorn or even to the shops for a day and stop of for lunch. For someone that has nothing wrong when it comes to eating, they're all things you don't even think twice about. However, for me and others who do have difficulties with food, so much thought and feelings come into it. I stopped watching as much tv as I used to and why you ask? Well I'll tell you. Next time you're sitting there watching tv no matter what channel you are on, when the adverts come on, count how many of those adverts are about food. I did it with my mum the other day when I was talking about it with her, and 5 adverts in a row were to do with food of some sort. Now, for someone who is sitting there starving and can not do anything about it but REALLY wants to eat a nice meal, it is HARD and makes me feel so uncomfortable and just not a happy bunny. It stops me from wanting to watch tv in the evenings with my family, so I end up sitting in my room alone on my laptop. Does that help me or my mind? I don't think so :(.

People can feel isolated no matter what the situation. It doesn't have to be about food, it can be anything. From panic attacks to bullying to being new in a job or after school activity. We need to find a way to help and make sure we never make someone feel isolated no matter what the situation. 

Recently, before my tube came out, I went to two different activities in the evening after work. One of them I felt so comfortable from the very first time I went and didn't feel like I was different or new to the group. The other one, as lovely as everyone was and as much as I enjoyed it, I just didn't feel as comfortable and was quite self conscious of my tube. I have no idea why, but it is just how people act around it all I guess. It is a weird feeling particularly because you can feel it whether you are physically alone or with people like I said at the beginning.

I don't have a particular point to make within this post about this subject. It is just something that I thought I would put out there and make people think about as I have been feeling very isolated and when I talk to others who say they're feeling isolated it makes me want to do something as I know how it feels but there's not always a way. Sometimes we can talk and discuss how we feel and what is causing it and if we feel the same it helps a little to know that I am not alone or crazy or over sensitive or something. 

If you are feeling isolated, try talk to someone who is feeling the same. Even though it won't necessarily change the fact that you are feeling isolated, you'll at least know that you are not alone or crazy or being silly.

I don't know if this post is helpful or pointless or even makes all that much sense, but it was a topic that I really wanted to discuss. I also thought that maybe, if you want, we could all share tips that you may have picked up if you have felt isolated or ones you have to help someone who is feeling isolated. Maybe we could make this like a little forum and have a discussion to just help people in general and talk about the subject. I feel like it's a subject that doesn't get talked about a lot but it is one that is felt every single day but thousands of people. 

Well..... start commenting below and let's discuss our thoughts and tips :)

That's all for now. I shall speak to you all soon.

Stay Strong

<3

The Truth About Pain... Going, Going, GONE!

Hello there my lovely readers, 

So erm.... I'm tubeless. I am not quite sure how I feel about it either to be honest. It was all very fast and emotional. It was causing my throat to go all red and inflamed which was making it very hard to swallow stuff. I was also struggling when things were going through it, so I was unable to feed and only using it for medication. My specialist didn't think that I should keep it in just for medicine particularly as it was affecting other things. When it was taken out, it was... well.... was exactly in the best shape or looking great. It was clear that it needed replacing because it was an oldie and that could be why it was causing problems. 

Before & After..... 

Not having a tube there after a year certainly feels extremely weird. Every time I go to put up my hair or wash my face or even scratch my nose I expect to feel it and it feels weird when nothing is there. Even small things like when I do blusher, I have to remember that I can do it on both cheeks now (well that's going to cost me more cause I'll get through it faster... darn it :P ). It is nice not having to worry about getting the tape done every night mind you but if I'm totally honest, I miss it. Never thought I'd say it. My tube was my safety net. I knew that if I put medicine through it for sickness or even paracetamol that it would work... and fast. If I was having a bad day and couldn't manage much liquid, I knew it was there to be able to put that extra fluid through so I didn't get dehydrated. Although I was unable to feed from it towards the end (as it should have been changed), it was my safety for the past year! Now I am totally reliant on taking everything by mouth and enough of it. So much easier said that done. I try eat dinner each nice but once I've eaten, I can't move anywhere or do anything so that sucks. My dad usually has to help me crawl up the stairs to my bed after because of the pain I am in that we are still unable to control. It sucks!! My anxiety has definitely been high since taking the tube out but what can ya do eh? I  kinda want the tube back =[ 

Is it weird that when someone looks at me now, my mind instantly says 'what are they looking at? Have I got something on me?' yet when I had the tube, I didn't even think anything when they looked at me? Maybe I just assumed they were looking at the tube and became so used to it that I didn't even think about it, I don't know. But I feel more conscious when someone is looking at me now than when the tube was there!! Weird!! 

My mood has been absolutely EVERYWHERE recently. It's so unpredictable and changes faster than the weather does here in England. It's not cool and not fair on everyone around me. I feel bad but I also can't help it nor do I realise when I'm in a very bad and low mood. It's only when I feel a bit better that I realise and then feel horrible and mean :(. It all goes back to my post about the fact that a chronic illness isn't just physical, it's emotional pain too which sometimes hurts and affects you more.     I am so very lucky to have people around me who are sticking by me no matter how I treat them when my mood dips big time. I'm lucky they realise that it really isn't intentional and I can't help it right now. No-one is perfect and no-one can be happy and put a brave face on all the time. We all have days where we feel like sh*t and feel like giving up and maybe aren't as nice to people as we should be. But, that's allowed? Isn't it?...

 My pain specialist reckons I'm depressed and says he isn't surprised due to all my health problems and quality of life right now because of it. Depressed.... a word no-one wants to hear or talk about. Am I depressed? Maybe. Or is it just I have days where I struggle to cope with everything and feel extremely down and want to give up? How do you know which it is? Is it just a question of opinion? How do you truly diagnose it? Everyone is allowed to feel sad! Besides, when you are in that much pain or feeling that nauseous you are going to be in a crappy mood. You can't help but feel pain when it is that bad... but that is allowed is it not?!

I've come to realise lately that some people are extremely selfish and two faced. Oh, and childish too. It's something that we all know, but lately, I have really seen who I can trust or rely on and who I can't. Even when it comes to just being friendly. Some people can be extremely two faced particularly when it comes to my health. It comes down to partly not understanding but also just thinking about themselves. Just because you have a chronic illness doesn't mean you should sit at home and do nothing or do part time work or not do things you enjoy. Sure, sometimes you might have to adapt things or sit down and take a 5 minute break every so often. Is that really such a big deal? Plenty of people go take random 10/15 minute breaks every other hour to have a smoke and basically kill themselves and that's ok but to sit down for 5 minutes to catch your breathe if you're in pain or feeling sick isn't ok?  I am not going to start saying names (pretty sure you'd know if it was you) or anything but I just don't understand how people can be so nasty for no reason at all. So if you are sitting here reading this thinking it applies to you,  all I can say is if the shoe fits then maybe you need to step back and take a look at yourself long and hard in the mirror. I just needed to share this and make people think about it. Being nice and supportive to someones face and then going behind their back and being a complete bitch is really nasty and to be honest so childish. Just because someone has an illness doesn't mean they should give up everything if they are capable of doing it. ARGH... it just makes me so angry how some people just think of themselves and be so nasty towards others. It's a really horrible quality and won't get you anywhere in life. And breathe......

This is from a little while back now :)

On a more positive note, cheer is going great. I'm making some really great friends who are genuine and love the same as I do. I'm soooo super excited to get my uniform and have my first cheer competition. It makes me feel so good and is such a great way to release all my stress and anger whilst exercising my body. All I think about is cheer and can't wait for it to be a Tuesday evening. Sure, sometimes (most the time) I struggle a little towards the end of the session, but who doesn't? It is an intense work out which requires a lot of stomach muscles & energy 

HAHA.

I think that just about covers all of my updates since my last post. Nothing much is being done right now. My specialist has one idea up his sleeve but it is an extremely new thing and he has to check whether it can be done with my pacemaker. If it can we would have to turn it off though. :/ So, we shall see if that's going ahead and then I shall share all :)

Hope you are all well. Who's excited that it is Autumn/Fall? What is your favourite thing about Autumn? 

Well, Until we speak again...

Thanks to Louis Smith for helping to raise awareness!!

Keep Raising Awareness & .....

Stay Strong

<3