Chronic Illness Blogs, Personal Blogs

You May See Me Struggle, but You Will Never See Me Quit!

Isn’t it weird that you remember one day you woke up and became ill yet you don’t really remember that exact day? You remember starting to gradually feel worse, watch your weight drop, the toilet trips become more frequent followed with more blood loss but again can’t remember the exact day when it got worse? All I remember is my life before being ill then my life after getting ill and no inbetween and it never really occured to me that one day I would ever get unwell. I know what you’re thinking.. every blog you read from a chronically ill person states this, but it really is so true. Noone who gets ill ever did think that they would end up unwell for the rest of their lives and that is certainly how it was and is with me.

I didn’t realise what being strong or brave truly was untill I got poorly. I had no idea about needles, cannulas, scans, stool and urine samples or even what swabs were! (oh boy don’t I know ALL about them now!!) I didn’t know what weight gain drinks were or that weight issues were so important to my journey and how up and down it could go. See, these things have no relevancy to someone who is well/healthy yet has such a huge relevancy to someone who isn’t in such good health or going through the diagnosis part of their life.

At 13 my issues started yet I didn’t know the severity of them untill I was 17 and just what path my life journey was going to take back then. Sometimes I would be going to move my bowels non stop and other times barely at all. This continued untill I was 17 and for 4 years I was at the doctors one or sometimes four times a week just trying to get some relief! As time went on the doctors visits become more and more, my weight dropped more and my pain got worse. Everytime I woke up from the little sleep I got I said to myself “surely this shit cannot be real. It just can’t be.” But it was and it wasn’t a dream, more like a nightmare.

Eventually at 17 I got my final diagnosis after 4 years of not knowing why I was always being sick or on the toilet but how can I even describe the feelings of that day? I felt relief that there was something wrong with me and after all the doubts of doctors and people, I could finally prove to them they were wrong. The other part of me was scared, wondering what this meant for me and my family, our future.. my future.

This is the part that was hardest for me. Medication. Never once did I ever think to myself that i’d have to be on Chemotherapy drugs for a severe disease. Not once. As a chronically ill young woman with no understanding of what these drugs really did, I gulped them down with some milk or injected them into my stomach hoping that the next one and then the next one would finally be my life line. That day was never coming round. My teenage years were spent partying with old friends who I imagine mostly now have full time jobs, children, their own home, a car or are married. I would struggle from time to time but I would push myself to enjoy my weekends at house parties or marquees and even though those days are just but a distant memory, it’s those days I miss. School days were mostly spent in bed or on the toilet or spewing in the toilet nearer the age of 16/17. The days I did make it to school were pretty similar but the worst day I had was when my stomach bloated so much that school kids would joke that I was pregnant and it was humiliating.

At the age of 17 just before my diagnosis I had managed to convince my Mum to let me leave school and move on from that chapter of my life in hope to start a new one.. but I soon found that that was the beginning of my rollercoaster ride with IBD. I tried college twice and I failed to attend most days because I was constantly on the toilet or really unwell with infections which is the main side affect of these Chemotherapy drugs. I was gutted and again I never thought college was something I couldn’t do. Mentally I was motivated to do nursing and help others who suffered all bowel related issues, physically it was impossible. The journey there was just over an hour and the same on the way back. College days were spent in the female toilets shitting for my life, it just kept coming and coming out till I was horrified as to how much could still be inside my tiny little body!

The second worst thing that I never thought would happen to me? Being a target for bullies or loosing friends due to being ill. Still to this day people think it’s acceptable to treat me like dirt because I am disabled and i’m an easy target. Shame on those who have and do it now. The ‘friends’ that left or treated me like garbage because I was vulnerable. When I was young I never thought people would disappear because I would be unwell. I never once thought people were so cruel to disabled people with sly comments or digs at you for using a disabled toilet. Social media used to be the worst and it still can be for all chronically ill and disabled people. You wouldn’t believe some things you read about stomas or having IBD. One guy i rejected at a place I used to work at as a bar maid one time, before my surgery, even wrote on twitter that my picture of me with my stoma bag sunbathing “put him off his food and was disgusting” HEY SORRY MAN NOT LIKE PEOPLE ASK FOR YOUR UNNEEDED OPINION, JERK!😁. That’s what it hardest for chronically ill people and ostomates. Acceptance. Let me tell you now, acceptance comes from within you. Not anyone else. You! You don’t need anyone else to accept you for you to feel accepted in life or to tell you who you are or who you cannot be!

I am so certain of one thing though. That’s my inner strength. I’ll never give up and yes I do struggle even if I do look well via facebook or snapchat pictures. Yes I am in pain every single day even if I smile. Being ill with multiple conditions has really taught me that you should never expect respect from other people and not everyone wants to understand or treat you well. So, that taught me to be grateful for all the support and respect I do recieve unexpectedly and it’s nice. I feel free of all the negativity I had from people in the past. I am still struggling with people such as neighbours or family or people I know that just don’t understand and can be really disrespectful to me.

They say that until you get it, you don’t get it. It’s such a true statement because you will never truly know about struggling to do the basic of tasks untill you become that person who is struggling.

Illness will never win even when i’m knocked down. It’s gonna be one hell of a ride but i’m already halfway there and still ready for the road ahead.🖤

Chronic Illness Blogs, Personal Blogs

3 Years Since Rectum Removal!

Hi everyone! I finally have some good news to share on my open perineal wound from where my Barbie Butt is! (Which if you don’t know what this is; it’s where my boozum used to be!)

Ever since the rectal stump removal, I had been having recurrent infections in the open wound, making the healing process next to none. For a while now it’s been really sore and bleeding often however these last few times it’s been without any puss. I thought it was due to another infection brewing however after examination, the wound is no longer a firey red and seems to be coming closer together to a nice fine line! Obviously it’s extremely slow but to me the littlest of progress is a HUGE stepping stone for me, it actually kind of feels like an achievement as I have a constant battle war with my body.

I also wonder due to the amount of antibiotics I have been on this year for numerous infections such as tonsillitis (8 times so far, and with the condition is have that is Chronic Sinusitis I get constant sinus infections) that they have enabled to keep infection away which is handy!

I still have a number of sinuses in there (little channels or openings that grow due to pockets of fluid needing to escape the body or crohns disease) which still leak and that can be quite painful when that happens. These sinuses make the healing process 100 times slower than what it should be due to that leakage.

I know many IBD sufferers receive the operation to make their stoma’s permanent and find not only the operation it’s self terrifying but also the life long journey of no long having a rectum hard to come to terms with. Many of my followers and members of the IBD community know that having my rectal stump removal was due to having sepsis for the second time that year, due to severe Crohns Disease and Ulcerative Colitis. Therefore it wasn’t really a choice as such. BUT.. and a big BUT… I wouldn’t change it!

The thought of having a reversal after what I went through with active disease in the stump is a straight up no chance! I couldn’t and wouldn’t ever go through that ever again. Many people suffer the pain of active disease in their rectal stump due to fear of the operation and never having the chance of a reversal. I can tell you that from my experience, it’s the best thing that ever happened to me, along side my ileostomy. I no longer have to run to the toilet or spend hours being forced to push out blood and mucous by my body and sit with a sick bowl spewing at the same time as the horrid fluids passed into the toilet.

Life with a Barbie Butt does have it’s down’s but certainly more up’s! You will spend most of your money on sanitary towels as you go through the healing process and multiple shopping trips throughout the years for new underwear but isn’t that a good excuse to buy new underwear?! (Usually I always end up in the pyjamas section afterwards..🤫)

My tips on recovery;

  1. Buy lots of sanitary pads.
  2. Have an ice pack available to wrap up and place on the wound.
  3. Have a hot water bottle at hand to help ease the pain (donot put onto the wound under clothing!)
  4. Make sure to take pain relief.
  5. Have dioralyte to keep hydrated.
  6. Rest plenty and don’t lift anything heavier than a kettle (recommended by the surgical team.)
  7. Don’t use ANY products of any sort on your open perineal wound unless it has been prescribed by your surgeon or stoma nurse.
  8. Have baths every few weeks or months with salt.
  9. Only rinse the wound with water in the shower once a day (a saline rinse with a cannula works just as good.)
  10. Do not, I repeat, DONOT use a piles donut cushion on your toilet or at all!
  11. If you are in full or part time job, take atleast 3 months to recover before going back.

I hope my tips can help you or someone you know. Please remember that the healing process really is different for everyone and many heal really quickly, others can take years to heal. Pace yourself and rest!

Any questions about the surgery or life with a Barbie Butt please leave a comment and I will get back to you!

Personal Blogs

Crossing my fingers.

Hello all! What a crazy couple of weeks it has been! What have I been upto? What news do I have to share? Possibly something positive?! Continue to read to find out!

Firstly I was admitted into hospital a couple of weeks ago with a vasculitis flare and crohns disease flare along side arthritis making walking and basic movements extremely difficult. It was a very long night and we got home about 4/5am (yay! My bed is my faaaaavourite place!)

A week and a bit later I had my appointment with my consultant (yep my actual consultant and not someone else woohoo!) As always he was fantastic and we discussed everything that has been happening and how we progress as a team, getting things looked at and a plan in place. If you lovely peeps follow my blogs or my Instagram and/or Facebook page @glitterygutsx you will already know whats been happening with my health. If not, go ahead and check them out! But I do suggest a bag of crisps or a cuppa whilst reading!

So what’s the current situation with me? I’ll put it simply- active crohns disease, active Behcets disease (vasculitis), arthritis and mobility issues, bowel motility issues, extreme weight loss, horrendous pain, bleeding, an incisional hernia and fatigue. It’s a long list huh? You must wonder how I cope, i know I do. Be assured I am not full of magic where I’m magically able to cope every day and never be sad, frustrated or fed up. However I do like to think of myself strong like a superhero in the sense that I can fight what comes my way on the OK days!

The current plan: shit loads of tests, needles and all that comes along with being chronically ill. Many of you who suffer know the drill! Barium Small Bowel MRI, blood tests, Calprotectin tests, Pill Camera etc. I have been referred to several other clinics to see consultants about my weight, Behcets Disease and Arthritis/Mobility issues. I have had some blood tests come back with some things not being OK so that’s something I need to discuss with my consultant when he is able to as with some illness in my family history it has me and my family quite concerned. However usually it’s never anything too serious so hoping that’s the same for this time.

Now this is the good part (I guess?!) If these tests show signs of e.g active small bowel crohns or anything else wrong with my small bowel then I can go onto chemotherapy drugs such as Stelera or trial drugs which will have been approved and more on the horizon! Obviously I’m shit scared of injections but to think that I could hit remission with not only my Crohns but also Behcets and Arthritis; it’s like a miracle! Obviously there are side affects but not every person gets them and they do vary. I have already decided that if I even get into a place where I can manage these conditions, that the first thing I want to do is go to a festival such as T in the park or even a small festival! Within the UK of course. I also imagine what it’s going to be like if my perineal wound where my rectum used to be heals- when I go swimming for the first time! The smell of chlorine and the feeling of warm water and being able to stretch my muscles and get fit again.. there are just no words that can really describe how amazing just the thought is!

So, now I wait for my appointment dates whilst starting to raise awareness and sharing people’s stories through my Facebook page @glitterygutsx with videos of people doing intravenous and introvascular medications (subcut.) I’m hoping personal and inspirational videos of people injecting medication at home or people documenting their time having IV medication can help others who in future may have to go onto that medication, people who are in the middle of the medication and need more confidence and support to do either of them. It also gives me great joy in sharing these stories with the world to let everyone see these brave people!

Wishing everyone well and if you would like to share your story, all information is on my Facebook Page and Instagram @glitterygutsx ! 😁

Personal Blogs

Thankyou.

I wanted to write a blog thanking people individually for all the support, love and advice I have had over a very hard few months. I didn’t know when it was the right time or how to word it. After last night’s scare of suspected sepsis it hit home just how much of a burden I can feel whilst in hospital. Possibly that I take the little things people do for me, for granted.

My first thankyou is to my Mum and Dad.

The endless nights over the past 10 years of sitting in hospital for hours on end till early hours of the morning. For taking me to hospital and attending appointments with me. For helping to fight my corner when so many health professionals have not listened. For fighting with me to get my diagnosis for 4 years. Holding my hand when I get injections or struggle with pain emotionally and physically. For financially supporting me through hospital admissions and surgery or when my clothes have gotten too big and I need pyjamas (still on going with weight loss and lack of clothes that fit just now!) For being there for all the times I’ve had a broken heart from friendships that broke me and relationships with men who left me at times of need, but there you were always there. For the hugs that sometimes I don’t like ( I don’t like to hug really lol) and holding me when I cry. For taking me out of the house from time to time or looking after the dogs and the house when I’m not here to do so. Most importantly for always being at the end of the phone when I need you.

My next thankyou is to my fiancé Jaimie.

Thankyou for coming into my life and showing me love and support. For breaking through the wall I built so high from all the hurt I’ve been through and to see that wall should never have been there. For helping me get dressed or making me cups of tea! Or when I am unable to walk to the toilet, you carry me there. For taking me places on really dark days and making sure I’m always okay even if I’m not. For being a great daddy to the doggies and taking care of them when I need to nap or shower. For sitting by my side during hospital stays and surgery till the early hours of the morning when you have had very little sleep and worked that day and have work the next day. Thankyou for loving me every day when I cannot love myself. For the surprise flowers and my favourite treats. Thankyou for holding my hair back when I vomit through silly hours of the morning and taking me to hospital appointments. Thankyou for showing me that a future is possible for us. But mostly I am thankful just for you being you.

To Louise and Rachel.

Thankyou for coming into my life and giving me that kick into blogging again. For supporting me through the most difficult time I have ever experienced in my life and always checking up on me and being there for me. For the advice and information you pass onto me about stomas and life in general. For guiding me into the right path when my anxiety had left me kafuzzled! For having me be a guest on your show and giving me a purpose again. For the girly chats about random sh!t. For being like another mother and auntie to me in one.

To IBDSupheros, The Colostomy Association, The Behcets Syndrome Society, Chronic Superstars, Chronically Successful, IBD Road to Remission, F.I.S.H.Y.S, IBD and Autoimmune Warriors.

Thankyou for being great Facebook groups where all sufferers can talk to each other, make new friendships, get advice, support and everything else inbetween! For supporting my blog and myself through a very rough time and giving me feedback on topics and taking part in my blogs. For fundraising, events, blogs and posting random funny crap that I am positive makes many people laugh!

To all friends.

Thankyou for always checking in on me and making sure I’m ok. To listening to my moaning and speaking crap at stupid o clock when I can’t sleep. For taking up that space in my life that was empty, when ‘friends’ from my past had left. For standing up for me when appropriate and supporting me through awful break ups. For the advice, love and random chats about poop or what it would be like to fart again! For cheering me up on bad days and for helping me fight through days where it just felt dark.

To my babies.

Thankyou for being portable hot water bottles and breathing dog breath in my face! For the kisses and cuddles I get daily and the spooning on the sofa or in bed. For the days when I am unwell and you never leave my side and watch over me. For the little stories you tell me whilst I am on the toilet (you always pick that time to do it!!) And reply to me when I say things in reply to the little groanings and squeaks! For making me feel like a mum, because even though you have fur and waggy tails the love i have for you is as if you came from me.

To my GP’s, Doctors, Surgeons, Nurses and Specialists that understand my conditions and complex issues.

Thankyou for seeing me at short notice or for calling me back on the same day and don’t judge me. Thankyou for not being all the same and not presuming like many health professionals that just because I look OK means that I am OK. For saving my life multiple times, had it not been for many of you I would simply not be here today. For helping me medically and emotionally with needles, pain, sickness, swelling, blood loss, fainting and all that comes along with my conditions. For giving me appropriate medications when I need them. For giving me advice and explaining things to my family. For holding my hand whilst being put to sleep or having a sore injection in my butt or stomach. The most important thankyou is for helping me get my diagnosis’.

To all others who I meet in support groups, through my blog or my Twitter.

Thankyou for helping and advising me when I have no idea what to do or what to expect etc. For sharing your stories and experiences to help others. For being brave and despite your own issues, being there for me and others who are unwell.

To my best friends who I have met through gaming in the Discord cult Gameplay Church #GPB.

Thankyou for the long talks about random crap and mostly about League of Legends and bands and all sorts! For trying to understand my illnesses and showing compassion and support. For making me laugh when I’m down in the dumps. For the funny moments of toxicity in a game and saying funny sh!t. For supporting me and jaimie through a hard time and keeping us going! For making us all in there feel like family. For the nickname Moana because it is my favourite film and always playing the songs from it and singing along! And thankyou for giving me friendships which give me the chance to get away every once in a while to visit!

To all other people who help in many other ways.

Thankyou. Thankyou for a roof over my head, running water, being able to buy food, keep my dogs healthy and emotional support. For the financial and all other types of support. Thankyou to the NHS that I am able to get stoma supplies and medications, scans and tests, doctors nurses and all medical professionals (even if some are not understanding!).

And to all the people who hurt me, left or made life harder for me.

Thankyou. Thankyou for breaking my heart. Thankyou for leaving and showing/revealing the good people. For letting me see that life is better without you. For giving me life experience and lessons and to learn from my mistakes. For the times that any one of you were helpful at one time. For shaping my life into how it is now and making me who I am. For treating me the way you did which has left me strong and able to not put up with crap from anyone. For giving me a back bone and to be open and honest. For giving me daily reminders why I am glad you left. Thankyou for taking your negativity elsewhere and making me free from it.

Thankyou to all my readers who continue to follow and read my blogs!

And thankyou to those who share their stories on my blog and for taking part in stories!

Awareness, Chronic Illness Blogs, Personal Blogs

6 Years Ago I Was Diagnosed! My “Crohnsaversary”!

It has been 6 years today, that I had my first colonoscopy and I was diagnosed with Crohn’s Disease. It was the 15th of August 2012, at age 17.

The picture above is me just a few months into Steroid treatment and I had Moon Face. I was away to a fancy dress party and trying to live my life as normal as possible, but little did anyone know I wasn’t living- I was existing. I spent 98% of my time on the toilet or vomiting in the sink. I was constantly passing blood and mucous and passing out on the toilet where my mum would find me early in the morning when she would get up to get ready for work.

4 years previously to this is when my issues began. I would have severe constipation or severe diarrhoea and vomit from time to time whilst experiencing the worst stomach cramps I had ever had. These issues would be worse when I was on my time of the month but I just put it down to that, and so did my doctors. As time went by, my cramps, vomiting and bowel issues got worse and worse. Each GP I seen told me I had IBS, bad periods or Piles. My mum and I knew it was much more than this but no-one wanted to listen. After 4 years they finally took some blood tests and one blood category called CRP came up high, which indicates inflammation in the body. I was referred for a colonoscopy and had to sit tight and wait for my appointment to come through. Months went by and I continued to try at life- applying for college, trying to work (missing loads of shifts and being sent home being unwell) and trying to maintain friendships. I continued to live on the toilet and vomiting constantly, having constant tonsillitis and glandular fever, ear infections, urine infections and sinus infections. Months of being on and off antibiotics and going back and forth to the GP practice.

The day finally came that I got an appointment for a Colonoscopy and I was absolutely terrified. I previously had a telescope with a light on the end of it inserted into my rectum by a GP who was so rough and forceful that she had made me bleed and scream in pain- but she didn’t care, she continued against my own will. I thought to myself “What if that happens again? ” “What if the pain is too much for me to handle?”. I spent every day leading up to the Colonoscopy in tears. The night before I had to drink a powder dissolved in water called Picolax which was in preparation for the procedure, so the bowel was clear. It was absolute hell, the first drink nothing happened and I had decided to eat 1 pringle- BAD MISTAKE! I was running back and forth to toilet even more than usual, the pain and the sweating was intensified. I made it through the night and the day of my colonoscopy arrived. My Mum and Dad accompanied me in the waiting room, with a hot water bottle on my tummy crying due to pain and fear of what was awaiting me.

“Alannah Simpson please” a nurse shouted, I looked at my Dad and I was terrified, i hugged him and then asked my Mum to come in with me. As my Mum and I went into the consultation room I was asked several questions and then asked to change into a hospital gown. I was then taken into a room with lots of equipment and machines surrounded by nurses in green uniforms. I felt like I couldn’t breathe and the tears streamed down my face. I kept thinking about blood and pain, the cramps intensified as I lay down on the bed. The nurses put a needle in my arm and gave me pain relief along with sedation and I felt quite groggy and fuzzy, like when you have drank too much on a night out! I begged for my mum to stay but she wasn’t able to stay, however the nurses were so lovely and really looked after me. They held my hand and then the consultant came in and began to insert the long camera into my rectum. Being completely honest I didn’t really feel it, it was more uncomfortable. As he went further in I had asked where it was, so he pushed it onto my tummy and said to put my finger there and I could feel the camera- I was completely fascinated! As I lay there I watched the screen and the consultant and nurses were talking about the findings and took biopsies. I didn’t really understand what they were saying, but what I did understand was what I was seeing on the screen. My large bowel was red raw, ulcerated and full of puss! I was horrified and asked what the hell this was. The consultant told me it was positively Crohn’s Disease and they were giving me an emergency supply of steroids to try and take the inflammation down.

I spent an hour or two in recovery and then I was able to go home. I was given a print summary of the procedure and report of their findings with me. A few days went by and I took the steroids and felt no different, if anything I was starting to feel worse. I went to the GP and was admitted into Aberdeen Royal Infirmary when the old wards were there- 13 and 14 which were for each gender. I had never had a cannula in my life, I had doctors and nurses coming round asking me questions and saying things I didn’t understand. That day was a blur. The next day I had an x-ray and an MRI and I was told I had a blockage. The treatment for this was more laxatives and stool softening tablets- it was hell. The ward was awful, being only 3 toilets for all patients in the entire ward. I spent most of my time either crying in pain in bed or crying in pain on the toilet, when I could get one! I seen things no 17 year old girl should see. I seen old women who were hooked up to IV bags of blood, some connected to heart monitors, many who were incontinent and had tried to get out of bed and covered the floor in bowel movements. Due to me being over 16, the children’s hospital wasn’t an option and I was months away from turning 18.

I was lucky that my Mum and Dad visited me daily on the evenings but when they left it felt like my world was crashing down. I couldn’t stop crying, I felt so alone with no-one to talk to in the ward who knew what condition I had or who was even close to my age. I was started on two treatments called Pentasa and Aziothioprine and had an allergic reaction so I was then moved onto Mecaptipurine which I was OK with. After that week in hospital I was able to return home and tried to go back to college but it was far from easy. Previous to the admission I spent most of my time in the college toilets. The other students in my class would make fun of me and say I was ditching class. They would say this to the tutors and they would ask where I had been and I explained that I had a colonoscopy soon. When I returned I provided them with the letter and they gave me so much support. The students in my class were still constant at keeping up with making time hard for me and my friends in the class- writing things on Twitter about us. Eventually I had to leave. The stress of being il, having insomnia from the steroids, the work I had to do at home to try and catch up and the stress these people caused for me. I hit depression and saw no way out. Things at home were bad too, I was in a seriously bad and toxic relationship where I was mentally and physically abused. I was too exhausted to fight back, I was too scared to tell anyone or walk away in fear that I would be even more alone. I could only see one way out and that was to be dead. I took a box of paracetamol and downed them with alcohol and curled myself up into bed and hoped it would work. It didn’t. I woke up and vomited into the toilet for hours. I told nobody. I felt so much guilt so much grief for the life I couldn’t have and I had no idea what the future held for me. I felt like a burden to my family and friends. I then lost friends and had to deal with a miscarriage- I felt useless that I couldn’t even carry a child so I told people I got rid of it to save myself the embarrassment and shame.

Time went by and more and more people left, I tried college again the following year but I was in and out of hospital admissions and had to leave. I decided to try and work but that didn’t work out either. My boss and the people I worked with weren’t understanding at all. I went to see the people head of the care home and gave them my notice and left. I gave myself time and tried another job but that too ended up with me being fired and not given the pay I was due for the work I had done. So I moved onto another job and then became homeless and slept on my dad’s floor for a while untill homeless accommodation was available for me. Once I moved into the homeless accommodation bungalow, I got a job at a local hotel as a barmaid and waitress. I then applied for a second job at another local bar for the weekends to earn more money as the rent for homeless accommodation was £90 per week. I was instantly fired from the hotel because they had issues with the owner from the other bar. I then applied for a job as a carer at another local care home and I loved it!

My health continued to be a burden to me and caused me pain but after loosing the job as a carer from my crohns flaring again and a few months course of steroids I hit remission. I was then working weekends at the bar and actively looking for work anywhere but nothing came up. I was determined to catch up on lost time being a teenager and experiencing nights out with friends. I went to house parties and went to a night club where my friend Chris was dj-ing with hits from my favourite djs – The Tidy Boys. In October that year I was given a permanent home from the council and began to settle in whilst working as a bar maid and life seemed to be OK. I met someone who I really liked and over time we spent more time together.

Little did I know what was brewing inside of me at the beginning of the next year.. I had become seriously ill and after a few weeks I was rushed into hospital via ambulance and later found out I had contracted a bacteria called Campylobactor also associated with food poisoning, however this type from my stool samples was more common from abroad and they had asked if I had recently been on holiday. I have never left the UK so still to this day I have no idea where it came from! I was asked to take part in a study at Robert Gordon University in Aberdeen where they conducted studies into that. The Campylobactor bacteria then led me into developing Sepsis, where my large bowel had become infected and I was severely unwell. At that point they offered me two options.. 1. To trial a drug called Vedolizumab or 2. Surgery for a stoma. Option 1 meant I would have to travel to Dundee back and forth for months for a drug that they didn’t know it’s success rates and if it would work for me, the second option felt more appropriate for me.

In a few days I had seen a surgeon and it was agreed that my entire large bowel would be removed and I would have an ileostomy formed. There was talk about a loop ileostomy or a colostomy however they wouldn’t have benefited me for the extent and severity of my disease. The sepsis got worse and one morning my surgeon came to see me and felt my stomach and was gravely concerned. My bloods didn’t show anything- no raised CRP no raised White Bloodcell Count, only my organ functions weren’t normal. I was sweating non stop and my windows were constantly wide open, when the doctors and nurses came in they were shivering! Again this didn’t show on the Thermometer. So, as my surgeon examined me I was rushed in for emergency surgery instead of the planned surgery for a few weeks later. A stoma nurse came to see me that day and marked me up and I was fasted in preparation for surgery. She gave me a booklet and a bag to look at so I could show family or friends. The booklet explained quite a lot. But it didn’t comfort me. I was scared but I was also excited. I couldn’t decided which feeling I felt more of.

After surgery I was sore of course but I felt much better. The cramps and burning were gone, the vomiting stopped and although I was groggy from pain relief I instantly knew it was the right decision I had made. After a week I was able to go home. But when I got home I also got dumped. I was told he couldn’t handle what had happened with me and he couldn’t deal with my illness anymore. I was distraught and instantly felt alone again. My health started to decline again as I was at home and I was constantly on the toilet and vomiting again. I couldn’t understand why after surgery I was like this again. I was infuriated! I was just so frustrated and in pain. A few months went on and I was in and out of hospital again and the last time I was rushed into hospital via ambulance. I was passing mucous the colour of a cup of tea which I then learned was puss, along with blood and chunks of skin.

I then had surgery to remove my rectal stump and I was given what we IBD sufferers call a Barbie Bum. The surgery was a little 3 hours and when I woke up it was AMAZING! The morning after I walked round HDU 7 times and had my drain removed on the third day and I was able to go home. When I got home I was so emotional and then I started to feel unwell again. At this point I was spewing again so I went to my GP practice and given oral antibiotics for a wound infection. They didn’t work and I felt gravely worse. I was then admitted again and given IV antibiotics. My lips and throat started to swell and I kept blackening out. I rang my buzzer and the nurses face worried me. I blacked out and woke up to so many people around me with the curtains closed. I was given adrenaline through my cannula every 5-10 minutes, had an ecg on, a blood pressure cuff on my arm and a heart monitor clip on my finger. Eventually I came round and it was decided to put me on another IV antibiotic that wasn’t penicillin based. I almost died that night.

Since that time I have been in and out with constant wound infections from where my rectum used to be. I also had an infection under my stoma and it healed up with steroid and antibiotic creams. I’ve suffered with liver issues where I got an autoimmune hepatitis (non infectious) and it then went away, anaemia, other numerous infections, more sepsis, b12 defiency, diagnosis of other auto immune conditions such as Behcets Disease which is a rare form of Vasculitis, Arthritis, Fibromyalgia, Pelvic/Vaginal/Perineal/Reproductive Crohn’s Disease, Asthma and have had 3 misscarries and a surgical termination due to being so ill.

But what has these illnesses and tough times really taught me?

They have taught me that no matter what shit you have going on that not everyone is as understanding of illness. Its taught me that even though we all suffer from the same conditions, that we are not all under one category and we are NOT all the same! It’s taught me so much on medications, understanding procedures, stoma products, IV medications, surgery and recovery. But what it has really taught me more than anything is that there are others out there just like me- who suffer from illnesses with pain and all that comes along with it.

I am also thankful for having Crohn’s Disease because if I didn’t have it, I wouldn’t have the most important people in my life. I wouldn’t have strength or passion in raising awareness and advocating for people just like me. I wouldn’t know pain or weakness or knowing how much it means when you have help from when I help someone. I also wouldn’t have met my amazing partner Jaimie who looks after me on the days I can’t get our of bed.

My illnesses have also made me realise that just because I am ill and have these diseases, that I am me and not the illnesses that I suffer from. That just because I don’t work doesn’t mean I am lazy anymore. I appreciate the little things that I once took for granted, that many people who have good health take for granted daily.

I have been able to attend charity events such as The Purple Wings Charity balls and the GYBO ball. Where we all come together and celebrate our strength in numbers and share our stories. We make new friendships and manage to keep eachother on our toes and keep up the fight! 💜

Chronic Illness Blogs, Personal Blogs

Recovering from Surgery – Small Things Matter!

first time with each of the babies!.jpg

 

 

Many people will go through some surgery at some point in their lives when diagnosed with a Chronic Illness, be it moderate or severe. Sometimes they have a strong support network at home and sometimes they don’t, and it’s important to concentrate on what you can do for yourself to help you through the recovery process after surgery.

 

So we all have things that are important to us including bills, personal hygiene, our furry friends and housework etc however i feel that what we really need to focus on is the little things for example; fluid intake, being comfortable, having enough medication to last you through the week, snacks or food and making sure you have someone who can come and check on you every so often to help with dishes or change bedding. Not everyone has someone that can check on them, so it’s important to make sure that if that person is you, that you have a plan of care with doctors or nurses for you returning home. District nurses (also known as community nurses, who work along side GP’s) help with wound aftercare, monitor your wellbeing, give required injections, help you wash/dress and assess your health on a daily basis to ensure everything is going the way it should, also known as continuing care.

 

The biggest part when recovering is that it is you who is adapting to life again physically and mentally from surgery, not anyone else, and so you have to put your needs first and slowly build up your independence. In order to do this it’s important to start slow and not over do it as you want to ensure you don’t make yourself more stressed or in more pain than can be helped, you must also make sure that the people around you are patient with this. You also become more hidden into your own shell during the process at times and that’s OK, but do keep in contact with friends or family and don’t let your social life disappear. It’s so important to keep your life before surgery intact to now as big changes in your social life have some less beneficial affects on your mental health which can lead to struggling with daily life. This slow process is about making many small changes rather than one big one, which makes a bigger more positive difference! Routine is a great way to start for example; 9am take x medication, 10am shower, 1pm have something to eat and so forth, it really helps you focus on the the little things that are most important to be done to help you through the day.

 

Finding something new to do like a new hobby can help take your mind off of things and gives you something to focus on rather than sitting being bored or worrying about things. Many people decide to watch something new on NETFLIX, YouTube, DisneyLife or on TV, many decide to buy a new book and read it within a few days, i’ve even witnessed some patients study for degrees or courses online whilst in hospital! I took up gaming after my first major surgery in 2015 on the Xbox One and from there i played loads of free to play games, then i moved onto playing PC Games and as i got stronger every day i then went onto walking with the dogs. So it went from sitting being unable to move very much to gaining independence and being able to enjoy life outside. This isn’t how it is for everyone though, so you should remember that every recovery is very person dependant and isn’t the same for everyone. You will go through phases of down periods and highs, feeling all types of emotions and it can be overwhelming which is completely normal! Don’t shut yourself down or let anyone else put you down because one day you feel so sad that you don’t want to get out of bed or eat, tomorrow is another day to pick yourself up and find something positive from this hard situation.

 

Now some of the important medical stuff (yawn i know!, make a cup of tea to accompany you!) Feeling tired after surgery is completely normal and having a low appetite due to General Anesthetic so you should only do what you feel you can and leave it at that. (If the washing pile is sky high, leave it for another day!) Your doctor’s and surgeons always ask that you do try to move a little each day to increase blood flow and this is because more blood flow promotes more healing for wounds and strengthens your muscles. It is also important to have movement daily to reduce the chances of a blood clot which can very nasty! Please click here for information on blood clots, from the NHS website (which is the best place to go for online advice, unless you wish to call 111 for urgent advice.) Many patients can suffer from Depression and Anxiety after surgery too, you can do some things to help your symptoms however seeking medical help is crucial such as visiting your GP.  Sometimes after surgery things can happen such as infection, weight loss or anemia, which too can be treated appropriately by visiting your GP or A+E.

 

It can be hard to find any positives from a difficult situation that you didn’t ask for or want to be in, sometimes you feel fed up and alone. It is really hard to think there can be any positives at all, but not all good things are lost from life at this point. I found little things such as a cup of tea the greatest part of my day! Being able to catch up on social media or helping others going through similar in support groups felt like my purpose. I was able to watch that Netflix show i always wanted to watch and even though (even now after recent surgery) that i can’t walk anywhere, going out in the car Pokemon hunting with a bacon sandwich is fantastic!

 

I really hope this may benefit you or someone you know who has or is awaiting surgery.

-Lots of love and healing vibes, Alannah.

 

 

 

 

Awareness, Personal Blogs

IBD – Pregnancy/Termination

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Hey everyone! The past few months as people know have been pretty difficult for me as i have been battling with my Crohn’s Disease, Bechets Disease, Ileostomy Blockages, Arthritis, Sciatica and then obviously with pain and anxiety. About 3 weeks ago i found out after going to A+E with terrible pain (after finding out a few days before that i have a hernia), that i was pregnant. They thought it was an Ectopic Pregnancy and i was told to make my way to Aberdeen Maternity Hospital for an internal Ultra Sound Scan, blood tests and examination. I arrived around 11pm at night and then returned home around 5am after they confirmed it was not an Ectopic Pregnancy and i was in fact 6 weeks. They also confirmed that i was very ill with my Crohn’s Disease etc and we debated whether i was well enough to continue the pregnancy. I spoke to my GP and then i also spoke to a Gynaecologist who works at Aberdeen Health Village and we all decided that i was too poorly to continue as i was in so much pain, losing weight and being very sick and that continuing could be very risky for me as i have miscarried 3 times before hand and the risks to the baby and myself. Obviously it’s something i discussed with my partner first and then we both discussed it with my mum and she also felt that my health was to come first and that it was important to make the right decision.

Now obviously many know that my consultant and surgeon both told me i would never be able to get pregnant so this came as quite a shock for me mostly. My care has been terrible to say the least but that’s for another day as i would really like to help other women who may be in the situation i was in or who have been told they cannot get pregnant, before i go into that i would like to explain the procedure in case it is something that you may opt for one day for either the same reasons or simply because pregnancy isn’t for you. There are many choices that they give you in a booklet for Termination and it’s important to read them all before seeing a nurse or midwife etc, so that you can ask any questions when you see them and discuss the options with them to make sure it’s the best one for you. I chose the last option which is Surgical Termination;

Dilatation and evacuation (D&E)

Used from around 15 weeks of pregnancy. It involves inserting special instruments called forceps through the cervix and into the womb to remove the pregnancy.

The cervix is gently dilated for several hours or up to a day before the surgery to allow the forceps to be inserted.

D&E is carried out with conscious sedation or general anaesthetic. It normally takes about 10 to 20 minutes and you might be able to go home the same day.

I arrived for my appointment time to the ward at Aberdeen Royal Infirmary at 11:00am where i was admitted and asked the normal questions about allergies, alcohol intake, smoker or non smoker (happy to say i’ve been stopped smoking for almost 3 weeks now!) and about your next of kin. I was given a gown, some pain killers, an anti sickness melt and then the tablets that soften your womb for the operation which i had to put under my tongue. They had no horrible taste and looked like two little pentagon shaped white tablets so nothing big or scary or fowl tasting, if you suffer from sickness from bad tastes (which is reassuring for you.) The tablet takes about 20 minutes to work and whether you bleed straight away, hours later or not at all is all person dependant. For me, i didn’t bleed until between 2-5pm in the afternoon, i passed a little when i went to pass urine but only a little. The doctor then came to see me who was doing the procedure before the Anaesthetist just to confirm i was still giving my consent and that my own surgeon also wanted to come down and do some examinations and surgery if required and if i was also ok to give my consent to that too, in which i said yes and signed the form. She also explained to my mum and partner what happens in the procedure, how long it takes and the recovery and what to expect afterwards. We also decided for me to have the implant put into my arm to prevent this happening again. I have to say we really appreciated talking with her and i cannot thank her enough for being so kind and looking after me. The Anesthetist came to see me not long afterwards and she too was lovely, and continued to use the plan i had made with the pre op assessment nurse back in April for my original surgery with my surgeon, which was to kick start me to sleep with the gas before popping a cannula in to put through the General Anaesthetic.

At 5pm just before i was taken to theatre (after being wrapped up in a heated blanket as i was really cold all day and my veins weren’t coming up at all!), i went to the toilet as they asked me if i needed to go before hand and i started to pass large blood clots and bled on the floor and pretty much everywhere, but it wasn’t any more sore than a heavy period. In Theatre, the Anaesthetist popped me to sleep by the mask and got a cannula in my right wrist, which wasn’t sore at all when i woke up with it! She described my veins as “like a babies veins, so incredibly tiny!” which i expected as they have been getting worse over time with the Vasculitis (Bechet’s.) When i woke up in recovery, i was given 4 different types of antisickness through IV, pain killers and fluids which was great as i was really dehydrated from being sick the two days previous and being NBM all day. The nurses were great and explained everything to me as soon as was ‘with it’ and that the termination was successful however my surgeon had done two other surgeries in the time i was asleep and that the wound i have, had been flushed out, scraped, examined with forceps and refashioned and the same with my fistula which in his words was “absolutely huge” and he couldn’t manage to fit a seton stitch in there (A seton is a piece of surgical thread that is left in the fistula for several weeks to keep it open. This allows it to drain and helps it heal. Loose setons allow fistulas to drain, but don’t cure them.) I had a big dressing in my wound which was extremely painful i couldn’t move from the trolley to my bed, they used a slide sheet and i had to get help to the toilet. When i sat on the toilet i just passed lots of blood which was horrible and quite painful from my lady parts, but this time i did have some pelvic pain a bit worse than periods which faded after a while.

I was offered something to eat and drink but i wasn’t hungry at all so i had a cup of tea which the nurse made PERFECT, which if anyone knows me is a rare statement from me! lol. Another more senior nurse came to see me and said that my surgeon was supposed to come and speak to me about everything and the future plan but all she knew was that the fistula needed another operation at some point. He didn’t show which i expected to happen late on a friday evening, instead another surgical professional came to see me and had said that she would get day staff on Saturday morning to make sure a letter is sent to my GP for future plan and popped onto my discharge letter that if i required more pain relief that they were to give me an injection at my local (due to complications i can’t have oral strong pain relief!)

So the point of me writing about this journey i have went through?;

I want to help other women out there who have been told they cannot have children from a health professional, without having a Fertility Test first to confirm this. As if it is only told to you or someone you know verbally then it is a simple state of opinion and not fact! If you also suffer from irregular periods, that also doesn’t mean that you can’t get pregnant so please be aware of this too! This journey has been very traumatic for me and my anxiety has been terrible and physically it’s made me very, very ill. If you are reading this and you have been told you cannot get pregnant PLEASE ask for a fertility test to be 100% on this before having any physical contact with someone without contraception. I also strongly recommend that you talk to someone about a preventative if you don’t want to get pregnant or if you haven’t had a fertility test to stand by being told verbally that it isn’t possible. Talking to a GP or your nearest Sexual Health Clinic (which you can search your nearest one by clicking the link) will really help you know which one is best for you. The only option i had was the implant due to medical problems, which may be different for you! I would also like to state that any information used via links in this blog is directly from the NHS website only, which is here if you need help with searching anything medical.

I’d really like to put out there that anyone who needs advice please send me an email to alannahjaynesimpson@hotmail.co.uk if you would like to be kept anonymous and i will do my best to help you.

I really hope this can help someone from ever getting into the situation i was in and also to help people understand the importance between fact and fiction.

-Alannah.

Chronic Illness Blogs, Personal Blogs

IBD and Menstrual Cycle Issues

It’s been a long time since my last blog! I’ve not been too well and I thought I would talk about a common issue/most recent issue I’ve been having that many of us women suffer from that is impacted by IBD and vice versa.

Since before, during and after my first diagnosis of Crohn’s Disease and Ulcerative Colitis in 2012, having my time of the month was beyond hell. I found that when I was due to come on my IBD would flare extremely and it would make my joints more swollen and painful than normal. I have also suffered from migraines since I was 11 and ever since I had my first period my migraines became much worse and more intense that i couldn’t open my eyes most days along with the worst vomiting i had ever encountered. With both of these issues combined it was agreed by my GP to go onto the mini-pill when I was 14 as the normal pill wasn’t suitable due to my migraines. This worked OK until my IBD flared severely when i was 17 and i wasn’t absorbing it some days and nutrients etc which meant that my cycle was completely messed up. For years i had this issue and iIstopped taking it for about a year before i had surgery and my cycle still never returned to normal (still to current day.)

In 2015 I deteriorated and couldn’t keep out of hospital, i wasn’t responding to steroids or the methotrexate injections and tablets. During this time i had two cycles and it intensified my anemia, pain, vomiting, migraines and fatigue. I caught Sepsis from my large bowel Crohn’s and Colitis being too aggressive and this resulted in emergency surgery for an Ileostomy which i later then named ‘Lola’! It was a hard recovery but I was up only a few hours after my surgery sitting in my chair and got home a week later (you could say I’m a pretty determined girl and i don’t give up easily!) So because everything had settled down i then tried the mini-pill again but sadly it passed through my small intestine and into my bag. With that option completely out the window I remained off contraceptive pill, then I had my first period since surgery when my rectal stump was flaring and it was agony. I lost so much blood from my cycle and my rectal stump i couldn’t keep off the toilet and I went through packets and packets of sanitary towels. Only three months later I had a second operation to have my rectal stump removed and i was up and walking round HDU the next morning- I had never felt so relieved to have it gone and my monthlies had also stopped.. so to me i reckon my IBD contributed to my monthlies.

After this surgery my periods disappeared for a few months until the end of January in 2016 and my problems started again but that time they couldn’t understand where my issues were coming from apart from my liver function being over 100 which then settled after a few weeks and being diagnosed with Hepatitis which also then disappeared. In April I was taken in for another operation to place in a permanent seaton stitch that kept causing infection and an EUA of my barbie butt and vagina and biopsies were taken. I remained on no IBD medication either as everything kept coming back fine i.e bloods and stool samples. In January of 2017 i was rushed into hospital and had emergency surgery for a perennial abscess and i was then taken in again afterwards for another operation of my barbie butt for a refashion of the wound and biopsies, an MRI scan and I was then diagnosed with Vaginal, Perennial and Pelvic Crohn’s Disease. Later from then I was diagnosed with Behcets Disease, Arthritis and had another operation on my barbie butt to try and clear all infection which also confirmed Crohn’s Disease in there too (yep aren’t I a lucky one!)

Since then I have had a few hospital admissions for sepsis, fistula infections, urine infections, my IBD and behcets flaring, arthritis flaring and my barbie butt getting recurrent infections and abscesses. Due to all these conditions my pelvis has fluid inside which cannot be drained due to my allergies to antibiotics, high risk to sepsis after surgery and how aggressive my Crohn’s is that any surgery will aggravate it and cause me more issues with fistulas as my pelvis is riddled with them. I also have no options for contraception except being careful due to the following issues; the injection causes a type of arthritis, the coil is a no go due to infection risk and going into flared tissue, the implant is also a no go due to risk of infection again and also due to the hormones that it produces which will make my migraines worse and any type of pill won’t be absorbed. My periods had also vanished again and this time i was told i would be lucky to ever have one again due to how far my disease is progressing and there is nothing that they can do except hope that the current treatment called Vedolizumab that i have been on since late January will start to work. The day after receiving that news i thought a miracle had happened- I had my first period in months!! Then my pelvis and barbie butt pain got to the point where I was unable to move or eat and it then started to bleed every time i was able to move. Blood would soak through my pads and clothes and i filled bed pans full of it, the nurses and I were horrified. I have had only one cycle since then and I was almost rushed to hospital due to losing to much blood. I woke up the morning I started and I was soaked in blood, later that day I went to let my dogs outside and when I got up my trousers were drenched in blood and it was running all down my legs. I have had a tablet that stops your cycle a few times so was advised to take it then too but it didn’t work this time, I had to somehow deal with it until it stopped.

Now they have disappeared again but I know that the next time I get them that it will be the same scenario. So now comes into the part of this blog where I share what has helped me when suffering from a problem all of us women get. I can tell you there aren’t much things that can help and what may work for me may not necessarily work for you, however trying is better than not trying! For me taking regular prescribed pain relief and anti sickness can reduce the pain and sickness that i get, a hot water bottle soothes and sometimes has helped me sleep, heat patches which you can get from Boots help loads too and loose-fitting underwear/bottoms such as joggers or pj bottoms and either a hot shower or warm bath.

I’d also like to highlight that only under 8% of IBD patients with crohn’s are affected by vaginal/reproductive crohn’s so it is rare.

Chronic Illness Blogs, Personal Blogs

Coping With Phantom Pains  

So i know that it is common for many people to have a phantom pain when something has been removed from the body and is no longer there. What really mind boggles me is why we can still feel something that is no longer in our bodies or part of us anymore and I keep asking myself “Why?”, “will it stop” or “will it happen often?”.

Doctors once believed phantom pain was infact a psychological problem, but now believe it’s a sensation that comes from the spinal cord and brain. Phantom pains happen to people that has had an arm or leg removed and it also occurs to many after they have had surgery to remove other body parts such as their large intestine, pancreas, appendix and many more! So really it can happen at any time in your life, even after ten years of feeling nothing, one day it can happen! Your body has grown with these parts and even though you know they are gone your body can take a long time to adjust to this.

Anyway, Today is what i call ‘Phantom Day’. A day of feeling that you have to poo but you can’t because once you have been sewn up (known as ‘Barbie Butt’) it’s actually impossible to! Many who have temporary stoma’s, feel this too and pass mucous which is the body’s natural lubricant produced in any part of the intestine. On these days i feel the pain of what i once had when i had a bum or rectal stump or when crohn’s and colitis decided to show it’s presence. Like many others, i thought this was impossible and getting your head around it can be challenging..Fear not! If you are reading this and feel that the pain you are experiencing doesn’t make sense, why you have this terrible feeling, cramping, spasms and heaviness i want to tell you that you are NOT alone. It may feel like things aren’t getting better but they will, only the timing is uncertain.

If you have pain relief, take it. You may feel woozy or unable to do things due to tiredness such as cancelling plans with a friend however you come first. If you want to have a bath then you have a bath! who cares about that sibling or flat mate who always wants the loo when you decided to have a soak? You time is so important when experiencing Phantoms days, days of pain or simply pure exhaustion. Who cares what people think if you want a day in bed with icecream and netflix? People will judge you no matter what you do and you can’t control their perspective on things, but you can help them understand why if they are willing to except how you are feeling.

I have been reading a great book this week called ” The Life-Changing Magic of Not Giving a F**k” by Sarah Knight and i can tell you now, its brilliant. I’m not even half way through and already i feel my view on people in life is some-what different! A great line i quote from the book..”There are two reasons you tend to give a fuck about what other people think: one, because you don’t want to be a bad person, and two, because you don’t want to look like a bad person.” It explains that not giving a hoot about what people think is right but doing it in the right ways is so important. It is priced at £12.99 british money and is available on Amazon or in Waterstones book stores.

If you are struggling to cope with any type of pain or coming to terms with life then i highly suggest picking a hobby you are able to such as reading, colouring in adult colouring books or walking. Do what you want to do, when you can and don’t be forced to go out for that one drink because you don’t want to let friends down, if they love you they will understand. Love the life you live and live the life that you love. 💜

Personal Blogs

Recovery from Barbie Butt Surgery

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The above picture is me recently with my Mum 😊

Hey everyone! I haven’t been on for a while so i thought i’d share with you my past few months!

Shortly after my last post, I received surgery to remove my rectal stump (also known as a Barbie buty) and it was a great success, untill i got a very bad perineal wound infection. I was readmitted and given antibiotics five times a day with three different kinds in which it made me very sick and weak. I was then given something stronger which i had an allergic reaction to and i almost died. I had a lot of health professionals around me, pumping it out of system with many things and awaiting for my fever and heart beat to calm down before my body went into serious shock, it was pretty scary!! They managed to find a balance of antibiotics and after a few weeks i was up and starting to heal! When i got home, the guy that i was dating decided to leave and end things between us because he was fed up of ‘me sleeping and relying on medication all the time’ and couldnt deal with me not only being ill but the hospital admissions and having an Ileostomy. It’s taken time but things are looking up and i have never felt better to be on my own and to only rely on myself!

I have celebrated my first ever christmas at last! I still have a great support network around me full of friends and family, i couldn’t be happier! I also turn 21 on the 5th of January and have my very first Foam birthday party booked and planned!!! I am so excited and can’t wait to make my birthday a memory to never forget! Of course, it does feel extremely weird for me as i feel i should be celebrating my 18th as I missed that due to being so unwell and on the toilet constantly.

I like to think that when something bad has happened or is happening, it can only mean that something better and good is waiting for you! A very wise and lovely lady who has helped me so much this year once told me ‘bad things are only temporary and only last a little while untill something greater appears’. I hope that if you are reading this and in a bad place right now, i cannot emphasise to you enough that is not forever and your time will come! Have hope, keep fighting and stay strong because in the end it comes down to us alone to keep going and NEVER quit!