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

Panic Attacks Creeping In

Hey Hey Hey,

Once again, it's been a little while since I last posted. I am going to do a full update of all the injections and such. However, for this post I wanted to talk about something that I get a lot and have been feeling it A LOT at the moment. That is.. Anxiety! 

Anxiety is a horrible emotion to feel and deal with. It is one that you can't control & are totally unaware of it creeping up on you. We all have different levels of anxiety within is. It can be from something so simple such as 'oh poop I have work tomorrow' to something more nerve wracking such as a doctors appointment (which I still have even after having so many). As per usual, stress is a big culprit of raising our anxiety levels making us more sensitive to it. If you are someone who is very calm and fearless, you'll have much lower levels of anxiety and for this, I am super jealous of you.

Sometimes, when your anxiety gets really high you, it can end with you having a panic attack. I, unfortunately, have had to deal with a few of this over the last few years. I can be super calm in certain situations that others get stressed like a fire alarm going off or someone fainting. Put me in a hospital or in a situation I am not comfortable with, and we have a whole other thing going on. I'm not always aware of what it is that sets me off. I don't even always remember what's happened after an attack. I remember, well.. was told about the first major one I had the first time I was admitted into hospital for Gastroparesis to get a feeding tube. It was horrible, I felt like I couldn't breathe and had people all leaning in over me and getting all up in my grill. I do remember yelling that my feet, legs and hands all had such bad pins and needles that I physically couldn't even move them. My hands were clenched together and I just could not open them. In the end, they actually had to give me something to calm me down as I was hyperventilating and just could not calm down. I feel like I remember someone telling me to calm down and stop it... it made me so angry and worse because it wasn't and isn't something that you can just stop there and then. If you could... boy would it make life easier. 

When your anxiety is high it can also mess with your mood and mind in general. I know that when my anxiety is high, I am always more sensitive and feel down in the dumps as they say. I then end up having stupid arguments over nothing with people because of my mood due to the anxiety. It drains you in so many ways and you're not fine just because the panic attack is over. You have an after shock almost.

There are some situations I know to avoid because they just get my anxiety going just thinking about being in that situation. Things like night clubs. I have been a few times and each time (unless I am totally out of it drunk - which I don't recommend), I have felt so uncomfortable and claustrophobic. I find it very difficult being around people who are drunk if I'm not. I feel like something bad is going to happen even though there most likely won't be. Even though I am in and out of hospitals loads, whenever it comes to staying in one where I am going to be alone without my mum or dad, or lying in the hospital waiting around for them to decide what to do next, I get overcome with panic and being scared. I don't even know what for and I can't explain exactly how I feel but I just ... it's horrible. 

So many feelings come at once that you can't control!

The reason I decided to write this post is because, my parents are going away in a few days and I rely on my mum everyday to do the tape on my NJ feeding tube. I am not allowed to do it myself as I could end up pulling the tube out. As much as no-one wants a feeding tube, when you have one, you end up becoming very attached to it. You have to remember that the tube is basically what helps keep us alive. Changing the tape sounds like it is so easy but in reality, the tape is super sticky and can stick to the tube quite a lot. The tube isn't sown into my body and can easy get dislodged. 

I have one friend who I know can change my tape as she does it often and did it when we went away together. However, I'm used to having someone at home with me 24/7 pretty much in case it suddenly becomes loose, particularly after showers. For some reason, the thought of someone else touching my tube and doing it panics me. We've tried showing my dad before but then when it comes to him actually doing it I just freak out. I know my dad is not going to hurt me or yank the tube. I trust my dad with my life so it makes no sense to me as to why I just can't seem to let him do it. We showed my grandma who lives round the corner to me how to do it. She tried doing it for the first time yesterday. Now, I know things take practice, but when it comes to the tube, it needs to be spot on. If it's taped in the wrong position, it can hurt my throat or potentially move around too much. I managed to let her do it, but I was totally freaking out inside. I was getting all teary and my heart was racing. Just thinking about her doing it freaks me out. I tried counting and keeping my breathing normal and managed to not end up having a full panic attack. I just, it's getting my so anxious knowing my mum won't be here to do it. It's also then making me on edge with everything else through the day. My grandma is really trying and has made notes and 'done her homework' but it just isn't my mum and it still gets me so nervous and just ahhhhh. We've also showed one of my friends who is in the same department as me at work how to do it today. She seemed to really get the hang of it which has calmed my insides down just a tad thankfully.

Sometimes, I feel like I am totally alone in suffering with this, but, in reality, I know there are so many other people who also do. Even people I look up to which always helps me remember that no matter who you are, you can suffer with them and it's totally normal. 

Panic attacks are NOT something you chose or want.

 I always try and warn people I am with a lot and trust about them so they are kind of prepared I guess should one happen. People always ask what they can do to help and the answer is, honestly, not a lot. Just keep me calm and remind me that it is going to be alright whatever it is. Telling someone to stop it or getting panicky around someone having an attack does nothing but make things worse. 

Something I don't think people realise, is that self esteem gets seriously knocked by having panic attacks. It always feels like people are judging you because you suffer with them. People somethings think you are using it as an excuse to get out of things or that you are making it up for attention. I always feel guilty after it because I feel like I'm ruining peoples day or something.

I wanted to see how many other people reading this suffer from panic/anxiety attacks be it not that bad or severe ones. 

How do you calm yourself down and what do you find helps if you are about to or are having a panic attack?

I read blogs and watch videos about anxiety to find things that help. Everyone reacts differently so what works for one person may not help for the other person. But, the one thing that you always have to remember it to try keep your breathing slow so that you don't hyperventilate because then things can get messy. :(

Comment below or head over to my Twitter/Facebook and lets start a conversation and see if we can help one another :) You are not alone in this and there are people who understand how it feels. Try to avoid the situations you know will set your anxiety off if you can and if not... remember it isn't going to kill you no matter how horrible it can be and feel. 

I love you all. Support one another and anything is possible to achieve. 

Even the word "impossible" says "I'm possible"!!!

Stay Strong

<3

Can I Travel With A Feeding Tube?

Howdy Everyone :)

Thanks for coming back to my blog!

This year I have been a very lucky girl and been away twice (but my bank is saying NO to anymore for now). Normally, when you book a holiday, you get a super excited feeling inside. The first holiday I booked, I was suddenly over come by huge amounts of anxiety!

Was I actually able/allowed to go away with a feeding tube? How would I get all my feed and medication and everything else that goes with it over there and across the boarder? Can the tube go in the pool? All these questions and more went through my head. I spent ages searching the internet to try and find answers. 

Now that I know ther answers and have travelled twice, I thought it would be a good idea to answer all these questions in one place for anyone else in that situation, or, maybe extra tips you never thought of or if you're just interested in it. :) I also made a video but I'm not too sure how much it helps as I just talk HAHA, so I decided to write it too!

The answer is, YES you can travel with a tube. It just requires a little more preparation than it would normally. But.... does that really matter if you get a great holiday out of it? ... I think not :) 

This is a little check list of things you gotta get/do if you want to be on your way to sun, sea and s..... sand of course. 

• Doctors letter confirming the medications you are taking, sterile water, the feed & pump you are taking, where you are going and the dates you are going. Get the to write on there that it is essential you have it with you in hand luggage as well.. that way they can't argue - well they could try but they'd have no chance :) 

• An adapter for your pump charger. If your pump got no juice.... you got no food pretty much! 

• Get yaself some form of case of bag to take on the plane for medication, giving sets, syringes, feed bottles and all that jazz. Always remember that when you work out how much medication and all the other bits and bobs you need, always take a little extra to allow for spillage's or breakage etc - this bag comes in real handy on the way home when you've used most the stuff and just end up with extra clothing space. Girllllll.... you got some major shopping to do (or guy)

• Depending on what type of tube you have but anything you use for it.... for me personally, I need good strong, waterproof tape for it which was awesome and my everyday tape anyway (Opsite Flexifix transparent tape) 

• Make sure your travel insurance covers Gastroparesis/ any condition you have. As tubies and people who don't have the best health, we are more likely to need medical help out there. Hopefully you never need to use it, but, it's better to be safe than sorry.... so I'm told! 

• Informed your airline and feed company. If you don't tell the airline... you aint getting the extra bag simple as pie. And, if you don't tell your feed company people.... you are either going to have to take all the bottles and supplies yourself or..... you aint getting NOTHING! :)

• A travel kettle if your destination doesn't have a kettle for your sterile water.

• Last but not least, don't forget to take yourself..... that is usually quite helpful when going on holiday!! 

Travelling with a tube isn't all that hard once you've figured it out. 

I have also made a video to go along with this post going into a lil' more detail about travelling with a tube. So, I really hope that between the two of these things, it helps you feel a bit more at ease about your holidays. Check out the video by clicking right HERE :)

Any questions? Just ask... I don't bite.... OR do I?

Enjoy your Summer holidays from wherever you are or are travelling to in the world! 

Stay Strong 

& Travel Safe

<3

Rockin' Rollercoaster!!

Hello Hello Hello

It has been so long since I last was on here. There have been so many ups and downs and upside downs for that matter! There are a few reasons why I have taken a little break or not been able to be on here. That also means, lots to update you all with. This could be a long one, so grab a cuppa and a biscuit (or set up a feed if you're a tubie like me haha) and get comfy.

Let's go right back to the first reason I hadn't posted anything. I wrote a blog post and deleted it, then rewrote it and deleted it again. I then wrote a post that when I read it back, I realised that maybe it was too much. I'm honest and open with what I say, but sometimes there are things that are better kept quiet. As you may or may not have realised, I had got myself into a bad, low place both mentally and physically once again. It's normal to have high and lows in life and especially when living with a chronic illness and chronic pain. 

I just couldn't seem to write anything that wasn't full on that it could upset people or just ... Not be appropriate. Everytime I tried to write a post, I went blank or into depressing mode. I don't want to go fully into it as I still can't figure out how I would explain it properly. Let's just say, I had pretty much given up on life and was ready to visit another world. I was fed up of being ill, of being in pain and not being able to live a "normal" life. 

So much has happened since last time, a lot of it actually being positive for a change. I am in a way better place with so much going on that I'm trying to find time to breathe haha. 

Gastroparesis ..... Let's start with what's happened with all that. I've had two injections in my back straight into one of my nerves he believed is spasming and causing me pain. He did a 'Modified Celiac Plexus Block' - at least, I think that's what it was!! It's forms of anesthetic being put into the nerve under X-Ray. I might do a separate post purely all about the injection. The first one I had around a month ago and wait for it...... It actually did something! This rarely happens. It took away all the pain I get on a day to day basis basically and I was able to eat. I wasn't having 4 course meals mind you but I was able to est and not be in horrendous pain. I had some pain but it was totally barable and barely noticeable. It was great. I was able to eat and then stand up and move around.... Like what?!! This never happens. I was in heaven. I even started cheerleading. Not the pom poms and cheering..... The full on sport where you are doing flips and stunts and flying in the air. 

I have always wanted to do cheerleading since school but never did it. Something in my head flipped again and I decided.... Screw it..... It's my life, Gastroparesis can do one because I'm doing what I want for a change. So, I did.... I've joined a group and hopefully will make the team when they have the tryouts in a few weeks times. My first time there and they had me learning how to do back handsprings. It was soooo freaking amazing!!!!, I'm literally cheer (and bow) obsessed now :)

After a few weeks, the injection started wearing off... And pretty fast! So, we went back and my pain specialist did another injection. I know that there was no guarantee it would have the same affect again. There's always a chance it could do the same, better or not as good. However, it's one of the first and only things to work in a positive way. It was a sure thing to have it again. It's been a week now since the injection. It definitely hasn't worked in the same way as last time but it's definitely helped. I'm still having pain so not eating as much. Kinda sucks but will see how it goes as some days it works great and others not so good. It definalty is doing something though. Fingers crossed. 

I've also been away to Salou in Spain. it was a nice relaxing, lay by the pool kind of holiday. We went to Barcelona for a day, went to a theme park and got in the water with DOLPHINS!! One of my dreams from when I was like 10 maybe?! It was amazing. Such a fun holiday and I even got a really nice tan rather than turning Lobster and then back to white haha! 

I think another thing we need to start thinking about getting back to the health side is what is going to happen with my tube and medicines. It's clear that my medicines only seem to work when they going directly through the tube. If they're being taken by mouth it doesn't work and I just seem to end up going back down and getting unwell again. My pain specialist suggested a few options one being medicine being put up my ...... Haha getting the picture? I did reply by saying if he wants to come over and do it every day then it's a deal. I don't plan on sticking anything up there anytime soon thank you very much. 

Another suggestion he made was injecting my medicines. Now that would mean reviewing and changing my medicines and mixing things so it doesn't end up with like 50 injections a day. Another thing would be that, I don't like needles so not entirely sure how I was inject myself every day or every few days depending when it needs doing! I'm on my way to my specialist who deals with my pacer and all that jazz as we speak so that's a question we are going to ask him. We are also going to see how the battery is doing on the pacer and what the deal is with when it needs replacing as the NHS have stop funding the procedure and funny enough.... I don't have a spare £22,500 or whatever it is every few years. I'll keep you all updated after I've been and found out myself.

Oo I forgot to ask, have you seen my video on tube feeding and how to set it up yet?? If not, be sure to head over to www.youtube.com/thedramaqueensoph and let me know what you think? I've had a great response to it which is great and makes me feel so amazing knowing it helped people and show people what actually goes into it and stuff like that.

Right, I think that's covers everything in the shortest way I can so I don't bore you to tears or anything.

I've missed writing all my posts so, as they say, I'm back in the building!! Least that's what I think they say or I've just totally made an idiot of myself....again!!

Hope you are all well... Any plans for the summer??

Stay Strong

<3

Birthday Balancing - Gastroparesis (Strikes Again)

Hey Hey Hey.... 

It's a 22 year old now talking to you! Does that make me more mature now I'm a year older? 

HAHAHAHA Doubtful! 

I may be physically paying for the last few days now, but they sure were worth it! Our birthday only comes round once a year and I was going to make sure I had fun for my birthday. Gastroparesis can suck my ding dong to be polite! 

They even got the Spice Girls in there .... KINDA!

I've had a fun-filled 4 days of birthday goodness starting by going to see the #NoFilterShow with one of my bestest friends who lives all the way over in Scotland. It starred 3 hilarious Youtubers who I LOVE; Grace Helbig, Hannah Hart & Mamrie Hart. They created a comedy show and were kind enough to bring it over to the UK just in time for my birthday week. The show was absolutely hilarious and my cheeks and stomach were killing by the end of it. Definitely a good work out and they say laughing is the best exercise... don't they? I filmed the whole thing without even realising it because I was too busy wetting myself laughing which I'm uploading (or maybe even uploaded by the time you read this - who knows with Youtube Uploads haha) to Youtube. So if you would like to watch their London #NoFilterShow then head over to my Youtube channel by clicking HERE. 

"AIR" - I think we went on this about 4 times?

Next up was 2 days at Alton Towers Theme Park. I'd never been before and had wanted to for ages as I am an adrenaline junky! My best friend took me for part of my birthday present. She'd booked the hotel, the park tickets and even did the two and a half hour drive whilst I sat there half asleep from the night before. How lucky am I?! Although the weather was pretty darn - well.... shitty to be quite honest, we didn't let it stop us having an awesome time. Saying that, I must tell you that going on upside down or fast roller coasters whilst it is pouring with rain does feel a bit like you have daggers going into your eyes at times! OWCH! Weather aside, we had an amazing time and got on all the rides we did without almost any queues which was even better as I am VERY impatient. We got some hilarious pictures and have some amazing memories from it! I also have some very sore legs from it as Alton Towers seemed to be a very large park that was VERY hilly. There were definitely more hills than flat land which is great exercise but leads to a very achey Sophie. At least I walked off all those donuts I may or may not have eaten over the two days ;) Whoops. My tummy behaved itself relatively well which was the best birthday gift I could have asked for.

"THE SMILER" - It is a pretty epic ride thats for sure :)  

"NEMESIS" - one of my favourite rides for sure!!!

We came back just in time for my actual birthday! My birthday consisted of opening presents, shopping, eating donuts, eating frozen yoghurt, eating pizza and eating more donuts. I think I may have a donut problem. I have eaten and treated myself to way too much food and none of it being healthy or low in fat. Before anyone says anything like you don't need to lose weight... I am fully aware of that and don't look at fat content to make me slimmer but it is because fatty foods take longer to digest and therefore tend to block my inside up and cause more pain! But it was my birthday ... and I like donuts! My mum and I went shopping to the Stratford Westfield Shopping Centre to spend birthday money I was given and well... who am I kidding... we are female and do not need an excuse to go shopping! We spend around 5 hours wondering the shops and had nice girly time. I did very well in the end and got some nice things to go with all the amazing generous gifts I received! We tried crazy hats on and went crazy on the PinkBerry Frozen Yoghurt toppings. *Mouth watering just thinking about it*. I ate the whole pot and am still claiming that there was a hole in the bottom of it and it disappeared before our eyes.... my mum isn't buying it and reckons I pigged out. Then to finish the evening off, my brother created a lil' something for me. I have never particularly liked birthday cakes (yes, I know, I'm weird) even before all my health rubbish so he made something just for me out of a plain sugary donut I had bought back from Alton Towers. He added some jam and some icing sugar with a candle and BAMM..... my very own donacake? Or in English, a Donut Cake. That baby slid down very nicely may I add :P! 

The Dog Has NO Chance!! 

Thank him above, my stomach behaved pretty well for the most part over my birthday weekend/days! Now, I will suffer the consequences knowing that I had a pretty fantabulous birthday and spent it with the ones I love. What more could I ask for? Well, besides a nice big diamond but you know... I'll let that one slide this year :P 

On a serious note, even though I am most certainly suffering now with a very achey body, painful stomach and exhaustion, I had a really good time and am proud that I managed to walk round all the parks and then the shops. I had a great time and am very grateful for everything I received. As for Gastroparesis, I believe I won this battle so it can shove it where the sun don't shine! :D

I have an appointment with my pain specialist coming up this week so I'm hoping he has some sort of plan because although I did have a fab time, I am in a lot of pain now and struggling to eat a single thing now that every things builds back up. I know I ate all the wrong things and maybe too much and just had adrenaline making it feel like I wasn't in as much pain as I was, but I can't deal with this pain all the time. Don't get me wrong, I wasn't in anywhere near as much pain as I can be at times, but the pain was certainly there and did get quite bad at times. I was always thinking in my mind of what the consequences would be and trying to balance out everything in order to try and keep myself stable and not drop.

I'm trying to be more fit and active. Trying being the key word mind you. All the walking may have made me exhausted and achey, but it certainly helped my tummy when I did eat. Or at least I think it did. It may have been just a good period and luck or it may actually help the digestive system because of gravity and all that jazz. So, I've been doing some exercises and right after posting this will be going on a nice long walk with the dog and my bestie. I even did a handstand today!! Don't ask! I am most probably going to pay for this A LOT but I used to love dog walks and gymnastics and almost joined a cheerleading group twice. I love cheerleading and would love to join a group so that is my target. All be it potentially well out the question but I really want to so.. tummy... screw you. I don't mean cheerleading like 'give me an A.. A', I mean like the full on proper American flips and stunts and all that good stuff. I know, I know.... I'm mad and probably being totally unrealistic but it's good to set targets right? Besides, we only live once!!

Rightio, just before I go for now, I want to say a huge thank you for my family, my bestest friend and to everyone who made my birthday special. Thank you for the generous gifts and even just for the texts or Facebook comments wishing me a Happy Birthday because it means a lot that you would take the time to do it for me. 

My question for the post is, are you an adrenaline junkie and if so, what gets your adrenaline going?

Stay Strong

<3

6 Things About Chronic Pain You Didn't Know You Knew!

Hey Hey Hey

I want to share and adapt on a blog post I read that gives a great insight on what dealing with Chronic pain is like. What it is like to deal with Chronic Pain everyday, is something you can never fully understand unless you have experienced it. This post, will hopefully help you understand how it feels and affects people both physically and mentally! I know some of you may have seen a post like this already, but it never hurts to get it out more and more to try and explain in any way we can. 

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Chronic pain isn't just constant pain, though, that would be more than enough for anyone to handle. The truth is, chronic pain always brings 'friends' along. These added challenges are obvious when you think about it, but are rarely taken into consideration by "healthy" people unless it slaps them in the face. Remembering that like all bullies, chronic pain travels with a gang may help you better understand the life of someone in chronic pain.

Pain is exhausting. We have all had a bad headache, a twisted knee, period pain (assuming you're female..duh!), or a pulled muscle, and by the end of the day it is a monumental effort just to read a text message. You may not have consciously realised it, but the pain that has relentlessly nagged you through out the entire day has drained you as bad as any flu would. Even when you try to ignore the pain, it stays in the back of your mind, screaming for attention whilst draining away all of your energy. With chronic pain, this is amplified because it isn't just one day, it is months or even years of struggling to live with this very demanding money on your back. It all builds up and catches up with you BIG time. I'm tired just thinking about it to be honest.

I'm so tired... I'll don't mind where it is!

Pain causes poor sleep. You would think that after a long day of fighting with constant pain, sleep would be a great relief. Unfortunately, that is just a dream (pun intended). For starters, chronic pain can make it hard to even get to sleep let alone staying asleep. The pain will pul you right out of any deep sleep leaving you spending the rest of the night tossing and turning (and getting tangled in your duvet). Many pain patients take medications to sleep because of how vital sleep is to your health, with or without chronic pain or illnesses. Even when you do manage to sleep, the pain signals continue in your brain and can cause the sleep to be broken, restless and funnily enough, exhausting!

Pain makes you cranky. Chronic pain sufferers aren't (all) just cranky buggers by nature. Pain drains you physically and mentally. When you are in pain, even the simplest things feel overwhelming and people tend to react accordingly. You may have only asked your chronic pain spouse if they would like to go to a movie, but in their head they have considered if they can sit still that long, how much medication it would require, if they have the energy, if they will stay awake through the movie, how high their pain is now and how it might increase, if the go will it make getting through tomorrow harder, and most importantly, give all this, will it be any fun. They didn't grouch at you for the fun of it, pain just makes it very hard to remember that everyone else is coming from a totally different perspective, where a movie is just, well, a movie. 

I'm NOT cranky!

Pain kills your concentration. Most chronic pain patients fight like crazy to live a normal life. They try to ignore the pain and go about their days, but it's just not that easy. Even when you ignore pain, push it to the back of your brain and focus on, say, work, pain doesn't give up. You can sit at your desk working on your computer trying to concentrate, while your pain plays the part of a toddler or a dog, desperate for your attention. Pain will poke you, tug at your clothes, spill juice of your keyboard, scream your name and try to use you like a punch bag. No matter how hard you try and forget about it, part of your brain is always processing the pain and it often pull your concentration to terrifyingly low levels, or to no concentration at all.

Pain damages your self esteem. The pain has made you tired, cranky and killed your concentration. Being exhausted all the time makes everything more of a challenge than it should be, your quick temper has strained or destroyed a once strong interpersonal relationship and your inability to concentrate has hurt your job performance. You can't do what you want to do with your time, even when you try and it seems like everyone is mad or unhappy with you no matter your efforts. Life as you know it is crumbling and all because of.... you? Most pain sufferers blame themselves for these failing, remembering that they used to be able to do everything. They see chronic pain as a sign of weakness or a personal defect that they should be able to overcome. The end result is that on top of everything else, chronic pain damages your self esteem.

A smile & an appearance can be deceiving! 

Pain causes isolation. When you're in constant pain, the last thing you want to do is attend the company party, the neighbour's backyard barbecue, or even small gatherings with your closest friends and family. In fact, it's the last thing you'd even consider or think about. Your friends and family are still the light of your life, but the physical and mental energy it requires to go out and be social can just be too much to handle. You start to bow out of parties and cancel plans but not because you don't want to go, but because you just can't. Eventually people stop inviting you, calls to make plans decline and the scary thing is, you don't actually mind. The pain has slowly but surely isolated you.

What are some other affects of pain seem obvious, but aren't?

Remember, just because someone is smiling on the outside, it doesn't mean they are okay on the inside. Don't make assumptions that just because the person looks fine that they are not struggling!

Stay Strong

<3

Original Post/ Credit To:  

http://invisibleillnessbattle.wordpress.com/2013/09/07/6-things-about-chronic-pain-you-didnt-know-you-knew/