Dealing With Depression

One of the major things that I have been silently suffering with for years and to afraid to reach out and speak to anyone about, but so many of us with IBD go through it. Depression isn't about simply feeling sad or being this miserable person that nobody wants to hang around. Most of my friends laugh at me when I tell them that I suffer with depression. They think I'm simply being silly and ask how can I be depressed I'm one of the most bubbly and lively persons that they know always finding the brighter side of things. They fail to realise that the only reason that I am this bubbly goofy idiot who is always so radiant is because I am to familiar with the darkness. I don't like talking about it because I simply have yet to know exactly what battles that I am struggling fighting a battle that I don't even understand. I recently read an article from thought catalogue which brought tears to my eyes about depression as it echoed my own struggles. It said that
 "Depression is doing everything you can to hide it. Because there’s nothing glorified about it. There’s nothing beautiful about a bad night as you fall you your knees, in a silent scream, that no one hears because you’re alone and you need to be until you get through it."
This shook me up a bit as I found myself crying for no reason not knowing what was wrong. I got off social media for a bit to get some me time to try to figure out what's going on and get my bearings together. It strikes at the oddest of times. I should be the happiest person travelling all across the UK meeting others with IBD and just having a blast, yet it's when it strikes the hardest and I get knocked down and don't know how to get back up. A friend offered me some advise which did the trick. She said just remember there's someone else out there much worse off than you are. I thought about the others who are way worse off than I am and that snapped me out temporarily and got me back up, but it was a short lived victory. While going to grab something in the store i kept having to pull my pants up while wearing a belt. That's when i realised that I've actually lost weight. Looked in the mirror and saw my ribs staring back like they were just waiting to go on the grill. I tried to remember what had I eaten for lunch and relaised i hadn't been eating, I'd just nibble on the food and not actually eat anything. Went for a jog fought against the aching pain in my knees but exercise always does the trick. Decided to reach out for a change and stop bottling it up,after all I am no longer alone in my struggle. Felt great receiving the warm love and encouragement from my fellow smelly bums and got me back up to my old self. Nothing some good old fashion shinanigans won't sort. My appetite is back, I ate an entire chicken! 

 There are many others out there going through depression and not related to IBD but just every day struggles. This brings me back to something I try to practice, be kind to everyone for you simply never know what they are struggling with, whose on their last straw and just about to tie a knot round their neck and call it quits. Quit throwing harmful words about to each for you just never know what pain and suffering they are hiding behind that beautiful smile of theirs. 

That being said I'm on toilet number 15 and only been on UK for nearly a month. I'm definitely doing well hehe.

Someone asked me the other day why on earth am I spending so much money to come over here and travelling all over, It's hard to explain, I couldn't give an answer at the time. How do i explain the connection that I feel with fellow IBD sufferers. They're the only ones who knows exactly what I go through and can relate to them in ways I simply cannot to anyone else. Its worth running my account into overdraft as I will not get this opportunity of a lifetime to meet and impact positively the lives of so many people. If I were to drop dead tomorrow I'd be glad to know that I have positively impacted a few persons lives and that is one of the greatest feeling there is; to put a smile on someone elses face and up lift their spirit whether its with laughter or just gracing them with your presence.

It's simply a priceless experience meeting people of all walks of life and connecting with complete strangers. I'd say try it but there are a lot of psychos out there haha 

IBD Irish tour

Been a while I haven't updated the blog, I've been trying to get some rest as the travelling actually picked up a notch. From meeting up with fellow crohnies right near my bass camp in Salisbury going out on a quiet night out ending up getting back dead drunk; to heading down to a tiny town called Yeovil to meet half way with a fellow belly. That was fun, we were messing about on the train and missed our stop...several stops later we realised we were in the town of Axminster and had to double back. All fun and games until you miss your stop then you just have more fun. Met up at last with one of the guys i'd been speaking to online for a while, really great guy, tried some British cuisine had some faggots (Brits and their weird names)

From missing my train to hopping on a flight over to Ireland, man I think Ireland is definitely colder than England but my its a lovely place. There's a close knit IBD family over here that are off the groups I am part of but I connected with one of them before coming over here and she rallied the troops and we met up and had a blast! The Irish are so warm and friendly they remind of being back at home. I felt left out to be the only one still with a colon as they all had theirs removed. The Irish know how to party and Belfast was just amazing, can't wait to do some site seeing as I was buzzing from the time I touched down to meet up with them as I have been looking forward to Ireland for a while! (thinking of moving to Belfast once I adjust to the cold hehe) So glad that I met up with her though, really amazing person. Warm and genuine person and she keeps in touch with the bellies over here which is really amazing as this is what I am trying to accomplish. To have a personal connection with other bellies and build those bonds to support each other through it all and know you can pick up your phone and call someone if you are going through a rough time and have someone that you can relate to. Would be amazing if all the other places could build such a personal connection, which is starting to happen right now so nobody feels that they are alone and can have a listening ear to turn to be it for advice, comfort or just someone to vent out to. Looking forward to heading down to meet other bellies towards the south of Ireland. Dublin is in my sites but I've gone over with my travelling as I have gone over my budget with all those hotels, trains and flights. Time to phone home see if I can get an allowance to go to the remaining meets. 

Still counting down my toilet trips I'm up to 11 now. The cold definitely has me going less. Seriously contemplating relocating here later on this year. Also need to get on some meds as I haven't been feeling well lately, mostly tired from all of my travelling and it's time to quit the alcohol now that I have finally met the Irish. Alcohol affects bellies differently. For me rum makes me bleed, Whiskey send me to the toilet after, beer makes me bloated, vodka is the only thing that goes with me and guiness which is great because I can get my iron intake from guiness lol. Just thought I thought I'd throw that in there in case anyone is reading this and was wondering if to drink or not to. Best not to but if you were wondering that's how my body reacts to these, keep in mind things affect each of us in a totally different way. What affects me good may have the completely opposite effect on someone else and vice versa.

 Saw an interesting sticker in the toilet over in Yeovil, I thought it was rather hilarious.
Still amazes me how people can be connected through this horrid disease. Leaves me in awe at the remarkable persons it has shaped us to be really which has made this trip for me such a blast and truly unique and amazing experiment.

The Journey Continues

Travelling across the UK has started taking its toll on me as was expected but by no means shall I let that fatigue stop me on my quest to meet my fellow bellies! After travelling 6752 km I refuse to let fatigue get in my way! If only I could tell fatigue to go away and let me do my thing lol. After 11.5 hours to get to Manchester and getting minimum sleep running about with my bellies all day and all night long over the weekend. Followed by heading to Salisbury then briefly London I could no longer fight it and while out exploring my fellow bellies lovely quiet town of Salisbury it hit me like a freight train! While having some sticky toffee pudding (delicious!!!) while seated there it hit me. Out of nowhere I felt so exhausted it took tremendous energy to simply be seated. I felt like I'd run 2 marathons back to back. Had to retreat to fight another day and go to his house as was closer and I pretty much dosed off after hitting the couch. If only sleeping for 4 hours on the couch would have been enough. Woke up more exhausted than when i first crashed. Followed by a lovely night of insomnia when I returned home. Fatigue is my worst nightmare. Being physically exhausted is bad enough but to also be mentally exhausted is just taking a joke to far. Waking up in the morning feeling like you haven't slept for weeks on end with no motivation to do absolutely nothing! To often I get told to just take a nap you will be fine, or you just need a good nights rest and you will be ok when you wake up. Two problems with that...I don't sleep at nights, you will find me roaming facebook or on youtube, secondly no amount of sleep will ever make you feel better when you are starring the monster called fatigue in the face. I may appear fun and bubbly on the outside, but there is a war going inside of me to simply get through the most basic of tasks versus staying in bed and doing nothing (though i tend to not stay still). Fatigue is a major problem faced by us in the IBD community and often overlooked as we're simply tired or to lazy. I once responded to someone who said I'm just plain old lazy by saying I'm to lazy at the moment to insult you (please don't go about insulting people) Oddly enough my way of combating my fatigue is with exercise or putting my music on and dancing on about the house as I try to get stuff done.

None the less I got on a train and headed to Birmingham to meet my bellies! It still amazes me as how complete strangers can have so much in common and can bond over what I once saw as the most cruel thing to have ever happened to me. My journey continues to Ireland next to meet my lost lost IBD family as I try to meet as many persons with IBD as possible and bring us closer via social media and build lifelong friendships and support from persons who understand the daily struggles we each face on a daily basis trying to go about our daily lives with IBD

Yes yes I'm still counting. I've been to nine toilets since landing in the UK. I definitely go much less in the cold versus back home in the heat. Oddly over here some people tend to go much more during the cold than in the heat. One day I even went only twice!!! You can imagine my cousins confusion as to why I was so excited and fussing I only went twice for the day once at 5 am them again at 10 pm (yes I did a victory dance)

IBD and Weight Gain

Having IBD we have quite a large assortment of medications to take, all of which have such lovely side effects (if only I could enjoy a side effect). They either cause the very problem we are trying to make go away for example taking immunosuppresant medication leaves you vulnerable to getting colds and other viral infections etc; or something to stop being nauseous and the side effects is nausea (eye roll). However one side effect I want to talk about seems harmless and might even appear as a benefit. That side effect is weight gain. Due to the constant trips to the toilet we tend to loose weight (I have a hard time gaining...still under weight *sniff sniff*) so it may seem gaining weight would be a great side effect right! No it isn't! Nobody wants to look like a swelled up balloon and this can have serious consequences in terms of affecting an individuals mental health. Already dealing with self esteem issues be it to being surrounded by idiots who constantly remind you how sick you look, or if you are just self conscious about your body image especially if you have surgical scars and haven't accepted your victory battle scars as I call them. You would think having a chronic illness which sends you to the toilet so often that loosing weight gained would be easy, but reality is its quite the opposite. Prednisone is famous for giving its users what has been coined moon face where our faces swell up nicely and quite round :( It's no fun trying to fit into that sexy dress you bought to go to that work function or party you have been looking forward to, then you can barely fit into it!

Society in my opinion is directly responsible for many of our insecurities by setting invisible guidelines as to what we are supposed to look,how our hair should be or what weight we should be at. This has annoyed the shit out of me (pun intended). I am 5ft 11.5 inches (damn it missed it by .5 grrr) and I currently weigh 146 pounds. Just a tad on the light side, but I wish I weighed at least 170 to have that Thor body and get the ladies (muhahaha). Only recently started accepting I am a slim built guy and having a chiseled body isn't what should be my most attractive but my personality and character, my values and what I stand for. I try to motivate my female friends who feel they are fat because society says that they are and I look at them thinking what on earth are you going on about,you look beautiful and they think I am just being polite. I don't buy into the women should look like a runway model, I actually like my women a little curvy (oops hope that wasn't tmi)

The joys of having an invisible illness is nobody sees the internal physical struggle as well as the emotional struggling that we deal with on a daily basis. Simple comments like you have gained weight might appear harmless, but to the person who has been desperately struggling to loose that weight they gained from steroids can be devastating to them. This reminds me of an incident which happened while we were out at the festival of the dead on Saturday. Seven of us with IBD attended and 2 of my lovely bellies fell ill. I went to ask for a sick bag for one of them and the paramedics assumed it was for my drunk friend and said they were all out, once I explained that she had IBD he immediately gave it to me and appologized explaining they were keeping them for genuine medical cases. Another belly wasn't so fortunate as her Crohn's kicked in towards the end and had her feeling sharp abdominal cramps and feeling nauseous so she sat down at the bottom of some stairs until it passed. A member of the security staff asked her in a rude manner to getup and go be sick outside, we explained to her she's not drunk but has Crohn's and that she just needed to let it do its thing and she will be fine. She later returned several minutes later using a condescending tone treating her like she was drunk. This just goes to show me how little understanding we as a society have or are either unaware of invisible diseases or have lost our empathy for our fellow human beings who are not well. Just because you can't see someones illness doesn't mean that they are not suffering tremendously; they simply have learned to adapt and carry on their daily lives because they simply have no other choice but to keep on going.

That being said, I am now up to 6 toilets since I've been in country hehe (I should have used this as a fund raisier for the amount of toilets I visit or something...just a thought)

IBD festival

So I've arrived in the UK day 4 in country and it has been an amazing past few days, and no its not been because I have been out partying and having a few cocktails; but because of the people I have met with IBD. Total strangers not knowing anything about the other yet knowing each other so intimately as we all suffer with the same shitty illness (pun intended). Not knowing anyone else with IBD has been hard suffering alone, but now that I have met others, it's hard to describe that sensation of mixed emotions of joy, pure excitement with a little bit of emotional break down as I've been alone through it all and now to finally meet persons who finally can relate and understand what I went and still am going through. Just typing it brings tears to my eyes quit literally (yes yes i'm a softy and I had to get away from my IBD friend so she couldn't see the tears run down my eyes)

Don't really know what to say. Its been a really amazing experience thus far and I'm really looking forward to meeting the others. Haven't been sharing much of our stories as planned more just been having fun glad to meet each other...our fellow siblings of this bloody disease that has plagued our lives. I've heard of blood bonds and friendships forged under fire at war, but never did I know there could be poop bonds lol. 

So far I have visited 3 toilets of Great Britain!!! Yes the cold actually makes me go less and when I am out I can control it and don't go at all except topee...the cold makes me pee a lot. But when I get home gosh i explode lmao. Bit of an achievement to have been all the places that I have in the past 3 days and only use 2 toilets. ones at Nandos the other at weatherspoons and obviously the one where i'm staying... That's a mighty fine accomplishment if you ask me really.

For some reason i can't upload the 3rd toilet lol, will simply add to next post

Off to meet fellow smellybums!

Been a rough past few days about someone who has always been there for me from the start of my IBD battle and it really rocked me to the core. Happily she is doing a bit better and things are looking positive so now I can be overly joyed about my trip in the next few hours to meet persons with IBD in the UK!
Spending my last hours here at the beach and enjoying the warmth as I am leaving the heat for the cold. Interestingly the weather affects us all differently, most people I have spoken to have flares in the winter and feel fine in the summer. While others like me flare in the heat but are fine in the winter so I'm looking forward to those cramp free moments.

That being said, one of my main concerns for this 11 hour 5 minute trip is not making it in time to the bathroom. We all have had the luxury of soiling our undies in public, whether its because we are stuck in traffic and can't get to a toilet in time or the urgency is so severe you are only a few paces from the toilet that you simply couldn't make in time. Instant depression sinks in for me every time that I don't make it to the toilet. I hit rock bottom emotionally as there is no worse feeling for me, the shame, embarassment and internal anguish is horrifying. The limited amount of toilets on the plane vs the amount of people who are on the flight and the line can make a massive difference. I once had to be pacing the aisle and have the flight attendant offer me a cup and said to me "don't be shy i won't pry" I smiled and said i'm sorry but and held up two fingers and she said you will need a bigger cup and chuckled. (lovely conversations I have with strangers yeah). I'm also terrified of having someone come in soon after I leave as its a confined space and lets face it, no matter how much air freshner or cologne you spray, you can't shake that guilty feeling u left a stinker in the crapper unless if its someone who has been annoying you then yes by all means come in quickly!

Always being prepared is key. Lets face it... accidents is a part of life with IBD. We always have a go bag for just such occasions usually with toilet paper, baby wipes, change of undies change of shorts or pants.Give or take a few more items depending on your sex and personal preference. I love cargo pants for just such occasions; I don't have to carry about a back pack everywhere that I go. Simply put the essentials in my side pockets and hope it doesn't soil my pants and just my undies (so yes it's wiser to have a bag, I just like moving light) I just hate it when some observant person notices the change of pants...as a result I may have a few duplicate shorts lol.

I'm simply buzzing with excitement to finally meet other persons from the IBD community. It feels like I am being reunited with my lost family! Can't wait to share the 50 toilets of Great Britain pics up and some of their amazing stories!!! Finally people who truly get me and go through the same shit(pun intended) that i go through!!!

What's IBD

Most persons find it a shock to find out that I have been suffering silently for the past 15 years with IBD. I mostly kept quiet about it except for my few close friends and family. I only recently decided to start sharing my embarassing invisible illness to the world. After joining a few support groups via facebook and realised i'm not alone, I no longer felt that sad pathetic existence anymore. I always share IBD related content on my personal facebook page but nobody usually reads it and  those who do ask why do I always share that. I then explain because I also suffer with IBD. "whats that?" I get asked. I tend to make fun of everything as a coping mechanism and usually respond jovially saying 'I Be Drinking' then after getting a few smirks thrown my way I get serious and tell them it's Inflammatory Bowel Disease... then the questions arise and they fit the pieces together..." so that's why you always go to the toilet all the time or always want to know where's the nearest toilet". For IBD awareness week last year I decided to publicly put up a post sharing my story and struggles up for the first time and decided it's time to stop being ashamed of what I go through and time to be honest with myself and finally embrace it.

What exactly is IBD? For starters it's an autoimmune disorder, the cause is still unknown and they are starting to get around to finding out what triggers it and finding more tailored ways to treating it, but sadly there is still no cure for it just medications, steroids, immunosuppressants,biological meds and surgery is needed, in most cases to save our lives. There are two main kinds of IBD, Crohn's disease and Ulcerative colitis. I've been fortunate enough to have Ulcerative colitis when I was 13... Lovely childhood I had eh, but it helped to shape me become the man that I am today(guess something good did come out of it all hehe). Crohn's disease can affect anywhere in the digestive system from the mouth to the rectum where as ulcerative colitis only affects the colon.
It is way more than a poop disease, yet that's the most visible symptom...we go to the toilet ALOT! So people tend to not want to share their experiences, I've had dates never get back to me just because they think it's gross, after all to the rest of the world poo is taboo, but to us its literally a way of life. Other symptoms of IBD include fatigue, fistulas, anemia, arthritis, constipation, decreased appetite, fever, gallstones, joint pains, kidney stones, liver disease, mouth sores, skin disorders,weight loss,diarrhea and abdominal pains and cramps.Think I listed all, lovely list of symptoms yeah?

Most days its a struggle just to get out of bed thanks to fatigue. That's the worst I find and really gets to me. How do I explain to someone what it feels like to be fatigued? To literally just wake up and be so tired all you want to do is stay in bed but no matter how much sleep you get you will still feel just as drained with zero energy. Yet you somehow gotta get dressed for work or go about your daily life. I don't let it get to me though and it hardly ever shows that i'm struggling as people find it a shock to hear that i'm not well. Even my friends and family seem to forget just how sick I am and some think that I actually have been healed and i'm fine (might need to go into acting Ha!) I used to go to the toilet as many as 44 times a day! Bleeding and mucus every single time! I thought i was bad until I started to speak to other persons with IBD to find out that they went as many as 60 times! Lowest my hemoglobin got was 4 then stayed 6 for about a year, then meet a really upbeat girl who has inspired me whose hemoglobin was at 2!!! She spent up to 6 months in hospital! Call me crazy but that's one hell of a woman right there, she's one bloody tough fighter! My kinda girl hehe shhh.

The purpose of creating this blog is to share my experience, help raise awareness about IBD; show the world it's ok to have a chronic disease and have fun with it and my upcoming trip to the UK to meet other persons with IBD. I plan on making little videos sharing our stories as i've met so many amazing fighters the past few months and never have I ever felt like I belong more than with them! I'm from the island of St Lucia by the way, its a tiny island in the Caribbean where IBD is rare,at the time of my diagnosis there were 6 other persons and they kept to themselves, some moved to the states for better treatment as healthcare here is literally a joke and I have no medical insurance thanks to the insurance companies finding a lovely way to get rid of me when i turned 18. I needed to switch to an adults policy then got the shock of my life to be declined due to having a pre-existing condition!!!

So look out for my 50 toilets of Great Britain as I intend to take a photo of every toilet i use and post its location... Everyone takes pictures of street signs and landmarks.... Well I'm not like everyone and I like to have fun with this bloody disease. Lets see if I actually will visit 50 toilets during my stay!