Emotional Pain Can Be Worse Than Physical Pain

Hey Guys,

I was inspired to write this post from both personal experience and hearing of others who have or are experiencing the same thing. It is something that makes me so incredibly upset yet angry whilst furious yet frustrated. I know it doesn't apply to everyone, but unfortuantely, unless you experience something, you don't know much about the subject and therefore don't know how to be when around someone who is experiencing it. This post could be a long one, so grab a cuppa (or set up your tube if you are a fellow tubie) and get comfy.

In this day and age, we all look up to those in the media. Some of the time this gives a positive message, but other times, not so much. With all the photoshop editing, people believe that if they faceplant their face into makeup or starve themselves to lose weight and be a size 0, they will become the next big thing or look amazing and give them all the confidence in the world. Granted, makeup can help with confidence if you get a spot and yes, being a good weight can help your confidence. That being said, certain illnesses become highlighted. Illnesses such as anorexia and bullemia. Anyone who has any sort of eating problem is instantly told they are anorexic or bullemic whether they are or not.

Before I was diagnosed (and still occasionally), I got told I was faking it for attention, or that I was anorexic/bullemic, or that I was using it as an excuse to not do/eat something or see someone. It's something that many of my fellow Gastroparesis friends have also experienced, along with thousands of others who have any form of eating problem. Unfortunately, people are so uneducated about health conditions unless they are common illness or seen in the media alot. That then leads to people saying things that hurt to those of us who are suffering with health conditions. Whether it is said intentionally or untentionally .... it hurts!! We are still human!! I'm not some robot who hasn't got any feelings just because I have a chornic illness!!  Sometimes emotional pain is worse than physical pain... particularly when it's because of someone you thought was there for you.

Whether a person has been diagnosed or not, there are certain things that should just not be said. I know not everyone does, but unfortunately, a lot of people do say some of the things I have I have listed below to  someone who has any form of eating problem (diagnosed or not). It is not ok and can be really hurtful for both them and their family if they hear it or have it said to them.

Telling someone;

• They are choosing to not eat
• They are faking it
• They are an attention seeker
• They are making it out worse than it actually is
• They are anorexic (even if they are, don't play on it)
• They are saying it to get out of eating something they don't like
• They are saying it to get out of doing something they dont want to do
• They are saying/using it so they don't have to see you
• They are fat/too skinny
• They are making your life difficult/harder
• And many other thngs

These are all things I have and still do experience and I hear about others who have the same.

I recently was told by a friend who is younger than me and is still at school about some of the things they are experiencing. They haven't been diagnosed yet but they get told by friends many of the things listed above. It's hard enough that when it comes to lunch time at school, they have to sit at a table around others who are eating and either try and attempt to eat something or just sit and watch. They even sometimes get forced to try and eat which, to be perfectly honest, just makes things worse. School is hard enough without being bullied in any way and saying things like the above to someone who is unwell is a form of bullying. You are messing with the way that person is thinking and feeling. The majority of the time, saying something nasty or unthoughtful to someone hurts more than if you were to punch them. Just like punching someone is not acceptable, saying hurtful things to people aren't - whether it's health related or not for that matter!

You don't know how someone reacts when they
are behind closed doors at the end of the day.

When I hear stories of things people have said to my family and that they've become upset over it, it makes me so unbelievably mad. Saying it to my face or even behind my back, but to my family? That's not ok. My family suffers just as much as I do. Maybe not in the same physical pain way as I do, but mentally and physically in living their lives they do. There is just no excuse for it.

Whether someone is faking it or not or even using their health as an excuse to not go somewhere or see someone, NEVER say it to them. Can you imagine how you would feel if you were in that position. You want nothing more than to be able to sit down and eat something nice, (without any consequences) but can't and then, you have people who are supposedly your friends (or family) and are meant to support and love you, but then say things that really hurt you whether it's meant or not. The person is most likely struggling both physically and mentally as it is and by being told stuff by the people they thought they can rely on, makes it so much harder. If you think someone is faking their illness (which, I don't understand why anyone would fake being ill over a period of time) or well... anything that could hurt them... keep it to yourself. Playing with people emotions can lead to even more health problems such as depression. Is that something you want? To make someones health worse or even cause mental health problems on top of everything, because you've knocked their self esteem and turned on your friend, partner, family member etc...

I also wrote a blog post not that long ago about things you didn't know about someone suffering with chronic pain. If you didn't read that but would like to, then click HERE.

It is the exact same thing, if someone is dealing with pain be it due to an eating problem or any other health problem, saying things can be so hurtful and really make the person feel alone and depressed.

Sorry to go on and on, but it is something that I just can't not talk about after hearing so many people I care about get upset because of it and when I experience it too. If you know someone who has any form of illness that you care about, don't push them away by hurting them or if you see or hear someone saying stuff to them that is hurtful, stand up for them.

Lets spread the word (and this post) and educated everyone about more conditions that aren't as well known and about you just gotta be normal around someone who has got an illness.... they're still human.

Love to all

Stay Strong

<3

Rock Bottom | Gastroparesis Update

Hey hey hey....

How are you all doing? Better than me I hope!!

 

Not my x-ray of the tube...
Going to ask for mine next time
though me thinks :P

It has been a really rough time lately and have had my butt well and truely kicked by Gastroparesis. My health has gone on a downwards swiral once again and we don't know exactly what knocked it back. I thought it was the tube as I was pretty certain it had flipped out of place again, but I've had the x-ray and it showed it was still 2cm in my jejunum - or for us non medics, your small bowel where

your food ends up after your stomach has finished digesting it. It did show there was a small amount splashing back up temporarily untill it went back down where it should. So all in all, anything that goes through it is getting to where it needs to. As happy as I am that it is in the right place and doesn't need replacing just yet, I'm upset because it leaves me with no explaination to my current state.

 

I've gone backwards and am in so much more pain and the nausea has just gotten out of control with the wretching at a high again. The nausea has been horrific even if I don't attempt eating and if I do attempt it.... I have my head over the toilet whilst curled up in pain. I made the mistake of trying to eat some cheese on toast towards the end of a work shift as I was starving. About 30 minutes after eating it, I had to head right to the toilets. I didn't throw up or even wretch (just about through extreme heavy breathing) but I felt like I was going to at any moment. Mix that with absolutely horrific pain... it was a disaster. A colleague came and sat with me for a bit and tried keeping me calm by telling funny stories and distracting me as much as she could until my mum got there to pick me up. I have never 

had to be picked up from work before in all the years I've been at work (besides when I burnt my entire left hand and couldn't use it to drive), let alone because of Gastroparesis. I was just that bad that I couldn't get up let alone finish the last hour and a half of my shift. I was so embarrased as my mum walked me out through the hotel lobby to her car. People that worked there looked at me, guests of the hotel looked at me and well.... it felt like the whole hotel stopped what they were doing and were watching me. I know they weren't and anyone who did knew of my condition and did ask how I was feeling when I went back to work the following day but I have been relitively 'lucky' since being unwell that I have never been sick to the point where I have had to go home and never out in public (besides once in synangogue - woops). So it was a pretty horrible ordeal.

 

My energy levels have been non exsitant as well as the nausea and pain and I pretty much forgot what sleep was unless it is called blinking whilst lying bed. I never really sleep that well but I wasn't sleeping at all. Have you ever been so ridiculously tired that someone can say hi or see you later and you tear up and want to cry? .... I have. It sucks!! Particularly when you are trying to comlete a 8 or 9 hour shift at work!! Mentally I just wanted to give up and never wake up. I was mentally and physically exhausted and just couldnt cope anymore. Gastroparesis was absolutely kicking my butt!

 

After having the tube x-rayed and knowing it is in the right place, my mum & dad suggested I tried to start back up with the tube feeds as I hadn't been doing it recently. The only problem with tube feeding aside from having to plan your entire day around the timing and length of the feed, is that it leaves me feeling hungary the following morning yet there is little to nothing I can do about that.

Oh hello old friend...
who else can sleep and eat?
I CAN! :) if you don't laugh.. you'll cry!!

Nevertheless, I did a feed and did start to feel a little bit better. Not a huge amount, but at this point, anything tiny bit was enough. It helped the nausea and the lack of sleeping. After two nights of feed, I now feel a little more energized (and by that I mean, I don't need to hang off the reception desk at work and can stand up and keep my eyes open) and the nausea is sooo much better! The pain unfortunately isn't any better but we can't have it all eh. It just shows me that I really can't without having that tube there, even if it is for meds only or tube feed when I get bad. 



I can't say I feel amazing now or want to carry on my fight with Gastroparesis particaurly, but slowly, with more feed and energy, I'll get back on track... least that's what the parents say.  :P They're convinced they're right... but then again, they think they are right even when they are wrong. Love you both if you're reading this HAHA!!

 

There's nothing else to update really if I am honest. My pain specialist is away for the rest of the month, so I have no more appointments until the beginning of October now. Unless we can get hold of my specialist.... apparently he's a very hard man to contact... well his secretary is anyway.

 

Sorry for being a bit of a downy at the moment, but.... this is what it is like living with a chronic illness. There'd be no point in writing this blog if I was just going to sugar coat everything in every post. The truth isn't always pretty but that's life! Help spread awareness..... we need so much more research done on Gastroparesis to help try make things atleast a little easier or more stable if nothing else. 

 Well until the next time...

 

Stay

Strong

<3 

 



Life Is Like A SeeSaw

Hello Hello Hello,

Once again, it has been a fair amount of time since I last wrote a post. Sorry!

Gastroparesis has this habit of knocking you right back down every time you climb up. I knew I was due a bad patch as I had a pretty good stretch of being relatively ok. 

I literally feel like I am on a seesaw of emotions and physical pain. I am either up in the air having a blast and showing Gastroparesis who's boss OR I am right down there on the ground hitting rock bottom and depressed. 

I have had a fair few doctors appointments since last posting, however, not much has been done. I ended up being on a second lot of anti-biotics this month with a temperature yet again. It seems the pain specialist is starting to run out of ideas. He has given me a bunch of things we could try now, but, most of them aren't really options in my eyes. His ideas include trying new medication again and most probably ending up with side affects and withdrawals again, which being perfectly honest, I am so done with that all and not going through again. I just can't.

His ideas including things like:

•  Medication either by mouth, tube, up my lady parts or up the other side down there. There is no way either of those would ever happen. It is horrible and no practical either.
• Another injection that is done slightly diffusely but still in the nerve through my back.
• Find an anti epileptic medicine that can be injected. However it could cause problems with my skin going in that way. 

After my last appointment with him, I swirled down into a very bad place mentally. I lost all hope and completely gave up on life. I disappeared for a day and didn't tell anyone where I was and didn't answer my phone. I'm saying this to be honest. This is what living with a chronic illness can do to you. There is no point sugar coating it and saying that I am always strong and always cope and get on with it because the truth is, no-one can. You have ups and downs. Unfortunately just a few more downs that ups. 

I still have basically given up. I've lost all care for things I love (besides cheerleading) and for friends. As bad as it sounds, I really have just given up being social and having conversation. I gave up on medication and just everything in honesty. That is the reason why I haven't blogged or done youtube. I just haven't found the motivation to do them, or energy for that matter.

The pain specialist has just given me some super strength pain killers in the hope it'll give me a little break to get my mind but in an ok place. I've been given Fentanyl. Makes my head feel funny but deco helps take the edge off.  As Tesco say... 'every little helps' haha :) 

In all the years I have been suffering with the symptoms of Gastroparesis, I have always managed to not be sick or wretch in front of anyone aside from that time at Synagogue (though I did manage to get outside in the car park). I have a huge fear of throwing up and always have. It panics me almost always ends up giving me a panic attack of some sort. A few days ago, I had my boyfriend here and my mum made everyone dinner. I was already in pain and to be honest, I knew I shouldn't even attempt to eat. BUT, I did and hugely regret it. I didn't want to feel left out or make any-one including my self feel awkward. A few hours after eating, my stomach decided it was pay back time. We were just chilling and chatting on my bed and then I felt it. I tried soooo hard to try keep calm and hope it would pass. And then it came. I suddenly sat up and told him in a panic to get my dad. I ran to the toilet and instantly started wretching. Nothing came out but it felt like it was going to and didn't sound pleasant. My dad came up to calm me down. I didn't have a full on panic attack but it did get to the point where I had pins & needles, couldn't move my left hand because it went so stiff, my head killed and I felt like I couldn't breathe. It was so horrible and I curled up on my bed after and didn't talk to anyone and just hid my head in my pillow. I was horrified and felt so ill. I fell asleep as my body just became even more exhausted from it but felt super rough the following day and only had about an hours sleep the entire night. 

On a real plus side, I MADE THE CHEERLEADING TEAM!! That's pretty much the only thing keeping me going right now. When I have cheer practices, I feel good like I'm achieving stuff and can let out all my steam. It feels good to be a cheerleader officially now and to be part of a team again. I know also feel a little pressure that my health will make things hard to be part of a team and not let anyone down. I love cheerleading and everything that comes with it so Gastroparesis & my body are just going to have to suck it up and get over itself. I can't wait to put that uniform on and be proud and then compete and just everything ahhhh.... My purse on the other hand, not so much a fan. Cheer is EXPENSIVE. 

I think that is going to be all for now. Don't want to bore you for too long with a long update. 

I'm going to try get back into posting more often... I promise. 

My dad has an idea of something from America (where else), so when we find out more about that, I shall keep y'all posted. 

But for now, 

Stay Strong

<3