Chronic Illness Blogs

Fatigue.

Fatigue is a not so funny, funny thing. You go to sleep, you wake up and still feel as if you could sleep but your mind is wide awake yet at the same time giving you brain fog – a term in which is used to describe the inability to function mentally with the fatigue.

Your body says no can do today. So you wish the next day for yourself to be full of bounce and able to do some simple tasks. But again you wake up repeating the same process, hoping the next day, then the next day for this lease of energy. You struggle to shower, get dressed, you forget medications or forget to eat, the housework and daily chores are literally – a chore! Your body aches and some days the fatigue can make you feel low in self esteem, lack confidence and just feeling down in the dumps. You nap and wake up feeling worse then unable to sleep at night and before you know it your sleep cycle is totally f*cked up!

Then a day arrives that you get energy and it is truly amazing! You get all the housework done and the house is sparkling clean, if you have animals or children everything is all upto date and all are washed and clean with clean bedding, you remember to take your medication, you make a meal and eat, you drink plenty fluids and enjoy listening to the radio or music, you are able to go for a walk and actually enjoy it without the aches and pains of your body. You can read a book without looking at the words without being completely confused by gobbidly gook!

So what steps could you take to help in preparation for a bad day of fatigue?

Having drawers for certain things really helps – for example my bed side drawer I clear out monthly which holds my medications, glasses, hand cream, wipes, peppermint oil for my sinuses and lip balm. On my bedside table I keep a bottle of juice to keep hydrated and to take my medications.

Cleaning dishes – I got a table top dishwasher so that all I need to do is rinse my dishes and put them in and they are done in an hour or so. As for the dogs, I have their bowls and food looked out on the counter so it’s easily accessible. You can also benefit from hiring a cleaner if that is something you can afford!

Changing bedding – Changing bedding once a week is hard but if the day of changing my bedding arrives and i’m not able, I will do it the next day, having a dedicated day each week to do this may be difficult but it’s handy as you will get into a routine of say for example “sunday is bed change day“, you can rest the day before.

Freezing home made food is great. I recently had my fridge freezer break so I got an american fridge freezer so meals are more accessible and I know that they are home made and I like them. Sometimes I will find it handy to take things like crisps and biscuits into the bedroom so that if I don’t feel like eating a meal, snacks are at hand.

Don’t feel bad for asking for help. Sometimes it can feel degrading asking for help because you are so tired, but don’t feel bad! If you have a partner, friend, neighbour, healthcare professional or family member that is able to attend your home and help you – ask! When my fianceè comes to visit I ask for help even though I don’t like to. That one person can make that one day much more bareable and easier for you and the company is also really nice.

Netflix and NOW TV on a TV or laptop helps pass the time. There are many good shows on Netflix such as The Vampire Diaries, Pretty Little Liars, Jane The Virgin, Grimm, Riverdale, The Ted Bundy Tapes, Evil Genius and The Staircase. On NOW TV there are great Disney films such as Moana, The Lion King 1, 2 and 3, The Little Mermaid, Finding Nemo, Finding Dory and Tangled.

Many people that donot suffer with fatigue think that fatigue is the same as normal tiredness after a hard days work or a sleepless night. The reality here is that it is not the same thing. The definition and meaning of Fatigue: extreme tiredness resulting from mental or physical exertion or illness.

I hope this can help some of you or better; all of you!

-Alannah A.K.A Glittergutsx

Advertisements
Chronic Illness Blogs

Dating With an Illness or Disability

getty_rf_twofinger

Following The IBD and Ostomy Support Show conversation, talking about body confidence and dating with a disability got me thinking, how is dating with a disability? The real answer is that it really isn’t any different at all. Many people struggle with body confidence or putting themselves ‘out there’ for love because of their illness(s) or disability.

Before having any disabilities, I lived life as normal and dated and never even gave illness a thought.. that was until the age of 17 when I got poorly. However this didn’t change finding love or having relationships. The problem was that the people I gave my time to didn’t give me their time back. After surgery for a stoma I wasn’t given the right support and he only came into hospital once on valentines day 2015 then dumped me on the way home when I was discharged just a few months later. It wasn’t until after my surgery for my stoma that I truly appreciated my body, including my stretch marks and flabby parts! I wanted to know what people’s advice is for people looking for love with a disability..

This is what they said!:

Louise with Crohn’s Disease and an Ileostomy: “Be honest. No point in beating around the bush, getting attached and then revealing your secret and having them turn around and say it’s not worth their time!”

Kaz with Ulcerative Colitis: “Patience and understanding. Be prepared to be cancelled on short notice- offer alternatives- if not we’ll enough to go out, maybe offer to go to theirs and cook- they’re probably exhausted and feeling awful for letting you down and that offer could really boost them up!”

James with Crohn’s Disease: “Let people know that your condition can change at any time for example one minute you can be okay but then you can become really ill in a short amount of time.”

Hanna with Ulcerative Colitis, an Ileostomy, PSC and Fibromyalgia: “My main advice, don’t sweat the small stuff.”

Jonathan with an ostomy and Crohn’s Disease: “Best thing when dating is to be honest and just be yourself. If anyone has a problem with your stoma then that’s they’re problem! I have had Crohn’s Disease since the age of 16 and got my stoma at 26.. 10 years later and I am planning my wedding day!”

Annie with Fibromyalgia, Colonic Inertia, Crohn’s Disease and Bile Salt Malabsorption, Ankylosing Spondylitis: “Don’t be an ass!”

Laura with Crohn’s Disease and a Colostomy: “The disability isn’t who you are. I was completely honest with my now hubby when we first met and we sat and chatted he asked lots of questions, some which I thought were brilliant and I needed to ask myself . BUT I did also burn lots of amazing strong smelling candles too should I have to dash off to the loo! It also helps if you invite your partner along to your consultations. “

Theresa with an ostomy: “Honesty and having a sense of humour.”

Jennifer with Painful Bladder Syndrome, Depression, Anxiety and PTSD: Patience, Compassion and understanding. Just because we have done something before doesn’t necessarily mean we can do it every time and that our ‘days off’ will likely be interrupted or structured around hospital appointments.”

Sahara with Ulcerative Colitis and an Ileostomy: “Just being honest at the start. There’s no point wasting your time dating someone, only to find out a month down the line that they can’t deal with it. So be as honest about how your condition affects you as you feel comfortable early on. That’s what I’ve always done.”

Murk with an ostomy: “Being open from the start is probably the biggest thing. Some people might not be able to accept it so it’s best to get it out there so you don’t waste your time with them.”

Tim with a J-Pouch: Try not to be defined by your pouch it’s not so much a *disability*, it is more something that enables you to live more normally!”

Vivian with an ostomy: “Honey, never forget how to flirt! Even if that’s all we want to do!!”

Jack with Crohn’s Disease: “Be open minded!”

Dustie with an ostomy: “Dating can be a fun learning opportunity and lead one to finding a match made in heaven. My husband still loves me— Zebra or not. I am still super awesome, sexy, funny and his wife after all we’ve been through with my health. He wouldn’t change a thing about his decision to marry me and have baby zebras to have avoided my health issues interfere with our lives. I also realized that for me to stop feeling like I’m a burden to those around me, I have to stop believing I am one. My family and friends would rather have a disabled mom/daughter/sister/wife/bestie in their lives than no one.”

Katie with IBS and Damage of the Sphincter through childbirth: Honesty – I had a wheat and caffeine intolerance but when the man of my dreams asked me out for a pasta and coffee meal deal I couldn’t refuse! Needless to say I spent a lot of time in the toilet so had to confess. He didn’t mind though and he’s now my husband!

Sue with an ostomy: “I love being single…disability or non….❤️”

Myself with Behcet’s Disease and Vasculitis: “be accepting of your swelling, stretch marks and imperfections.. it makes us who we are!”

love-2

I think these are some fantastic tips to give to someone who is either dating with a disability or dating someone who suffers from a disability. It is so important to listen to one another and to definitely be honest with the person at all times, and explaining things they may not understand. If it’s something you don’t really understand yourself, there are lots of facebook groups or websites available which can help answer those questions. Be respectful to the person that is suffering and not being ignorant towards illness or disability is key!

If you are looking to date and have a digestive disorder of any kind, please sign up to Gutsy.Dating!

Hope you all have a fantastic valentines whatever you choose and whether you have a partner or you are single!

-Alannah A.K.A Glitterygutsx

Chronic Illness Blogs, Uncategorized

Home Remedies

oils for blog

I have experienced and noticed many issues people can have such as a sore spot or sore skin after a bag leak, which leaves us wondering what on earth to use when these things happen. So, I am passing onto you what has been passed onto me that has worked, from items that you may have in your home.

Sore skin after a bag leak 

Calamine Lotion is fantastic for soothing sore skin after a bag leak along side plenty oxygen for a couple of days, at each bag change. I use a cotton wool pad and soak it in the lotion and dab it gently onto my skin then air it out with the window open for around 5 minutes. I use this as well as my skin barrier spray.

Spots or puss spots 

Tea Tree Oil helps to dry up the spots and draw out any infection. I find it’s best to put this on before going to bed at night after washing your face. You can also use toothpaste and let it try, it too is good to dry up spots.

Dry skin 

Coconut oil mixed with sugar is great to exfoliate and get rid of dry skin either on your lips or face and has no chemicals to irritate the skin. It also smells super good!

Cleaning body piercings 

If you are looking for a quick and easy way to clean your body piercings, simply get a mug and pop in some boiling hot water from the kettle and lots of salt and put the piercings in for a few hours. Not only are they sterilized but also super shiny!

Sore throat and cough 

You know when you have a cold in the works when your nose starts to run and your throat starts to get sore with a cough, taking paracetamol appropriately is good. At home you can find things to help in your kitchen to help too. Simply boil the kettle and in a mug put in squeezy honey and some lemon juice, I add in 1 sugar to help sweeten it up! You can also gurgle salt water too before hand.

Sleeping issues or insomnia 

There is information to say that melatonin can help with sleeping troubles which is mostly found in Milk. However Lavender can help if you have the essential oils lying around, drop some on your bed sheets, making sure to avoid where your face would come into contact.

Migraines and Headaches 

If medication isn’t a possibility to help with your Migraines or sore heads, I have found some things that help me when the pain just won’t budge or medication hasn’t worked. Ice packs on the back of the neck and forehead really helps relieve the pain. I also open the window for fresh air to help keep the room at a suitable temperature.

Swollen, Puffy or Sore Eyes

For sore and swollen or puffy eyes, cucumber is really good at taking that down, along side antihistamines. Cut into slices and place one on each eye and leave for around 10-15 minutes,

Blocked sinuses or Stuffy Nose

Peppermint oil combined with Eucalyptus oil is really good for clearing blocked sinuses or if you have a sinus infection and have a lot of pain. It’s great for stuffy noses too as it helps you breathe. I put some drops into a bowl of boiling water or menthol crystals and have it sitting next to me, before bed I make sure to have one at my beside to help me breathe throughout the night.

Toothache, Gum or Abscess Pain

Clove oil is great for toothace, gum and abscess pain in the mouth. Pop some onto a cotton wool stick and dab onto the affected area!

Joint Pain or Swelling and Muscle Pain

Having a nice warm bath can soothe those aches and pains. I found that the Radox Bath Salts were so good on my sore joints, the lavender also helped me to relax and smelled lovely!

Wound Healing or Soothing Wounds

Again, a warm bath with just salt can really help with wound healing or itching. I usually put in a couple of table spoons.

 

 

 

Chronic Illness Blogs, Uncategorized

Coping With Grief

Grief is an unimaginably painful thing to go through and live with on a daily basis. It’s a pain you can’t describe in great detail apart from a piece of your heart is just gone, dark like an empty room with no lights on.. when nobody is home.

Like many, grief has happened in my life and still to this day I struggle with that. I also struggle to accept change in cases where people change or a place I once went to is knocked down; that sort of thing. When my life changed due to being unwell and having surgeries it was hard. Yet somehow as surgery and illness is part of my daily existance, I have managed to accept that but I still find myself asking the question of “why?”.

When my granda passed almost 12 years ago that crashed my world and has brought so much change to my life and family as I once knew it. I remember his prickly mustache as I kissed him goodnight before I went to bed when I was staying over at my Grama and Grandas and how it itched. I remember him and grama watching casualty or the ice cream floats he made us with moray cup whilst watching The Lion King. Or the hot chocolates with cream on top and getting it half way accross my face. The hot summers where we would make dens in the garden with blankets or playing in the paddling pool whilst he worked away in the shed. My granda adored fish and I remember watching the beautiful Tetra’s swimming around in his fishtank and now having my own fish tank and fish it reminds me of him and on a day I really struggle, I sit and watch them.

The truth is we all suffer from grief. It’s always in the back of your mind. In times where I was on my death bed dying, I wished my granda was there to hold my hand or comfort me. There is no right or wrong way to deal with grief, it’s such a personal thing that what works for you and helps you cope may be different for someone else. Some people like to visit graves and pay their respects with a bunch of flowers or candles. Others just cannot bare to look at a persons grave. This is OK!

Many people who become ill grieve for the life they once knew of and had. The huge change in working full time and being out of the house and doing things whenever they had the time, to then being ill full time and trying to get through the day with pain, sickness and fatigue can be mentally just as challenging. I often dwell on the life I once had (when I was well) and it literally eats me up when I look back at old photos on how I used to look. There was no dark circles under my eyes, my face didn’t swell and I was pretty much care free. I partied with friends and enjoyed going out in cars or taking pictures of scenery. How can you explain the grief of loosing yourself? You just can’t.

At some point we have to realise that living life whilst always looking back won’t take us forward. Letting go of grief is extremely difficult. I’m lucky that the people around me have accepted that I will never be able to let go of loosing my granda. I still cry about it and I am lucky enough to have dreams where he is there like nothing ever changed but this does come with over whelming grief when I wake up and it takes me a few days to get myself together.

Do things that would make your lost loved one proud and something you too can be proud of. No matter how small it is. Be ambitious and strive for great things. Thanks to my granda for always believing I would do great things, I found love and passion in writing and doing my blog. Doing blog pieces for other companies and raising awareness is so joyful I couldn’t explain how it makes me feel, even if I tried!

It is hard living life without that person you loved or respected. Honestly all I can say is that when you are surrounded with people who accept your grief and do not question it, it makes it easier to cope with and continue each day. My most important advice to you is if you are grieving – don’t hold it in and don’t bottle it up. Talk to someone about it, be it a doctor, councillor or friends and family. I only talk to my partner about it and for the first time I am writing about it to help others who are going through this pain.

Just know that every little step forward that you take is a big and powerful thing. In doing so, you are doing so well in trying to cope and continue with the daily chores of life.♡

Awareness, Chronic Illness Blogs

What We Want Our Partner/Family/Friends To Understand.

For day 3 of the Crohn’s and Colitis Awareness Week, I thought it would be appropriate to write about what we (IBD Sufferers) want the important people in our lives to understand because we love them and want them to know that even through illness that still remains. Except we may need a little more support and understanding at times.

So here is what we want you to know:

  1. We go through the frustrations of financial stress too. Infact its so frustrating that we cannot contribute as much as others, be it in a household or when it comes to gifts that it can make us even more unwell.
  2. We don’t have the choice of not being able to work. For many, the choice has been taken away. It is not a luxurious life style where we sit at home and enjoy life getting money for nothing! Being unwell is a full time job its self – taking medications regularly, trying to eat something each day, trying to keep hydrated, spending hours multiple times a day either sitting on the toilet and passing blood or vomiting. Others who have stomas can have multiple bag leaks, wound leaks, bleeding, blockages and active disease causing side affects such as fatigue, anemia and struggles with weight.
  3. This disease can make us feel isolated because many of us are house or bed bound. We rarely see the outside world unless it is to attend procedures, hospital admissions or hospital appointments.
  4. Because we look “OK” on the outside does not mean that we are! Some days it feels like we are dying because the pain is so intense. Can you look through the layers of our skin and muscles and see the inflammation or ulceration? NO.
  5. IBD is just as serious as Cancer, Heart Disease and other health conditions than cause life or death situations. We are at risk of just as much issues!
  6. IBD is NOT the same as IBS!! IBD stands for Inflammatory Bowel Disease which is disease of the organ or organs the disease affects causing inflammation, ulceration, anemia, weight loss, bloating, fissures, fistulas, abscesses and sickness, which is a life long illness. IBS stands for Irrital Bowel Syndrome and it is a syndrome of which the bowel is prone to cramping or trapped wind which goes away in a few hours or days.
  7. Those us who do work really struggle due to pain, sickness, fatigue, issues from medication such as insomnia, moon face, infections and weight gain or loss. Many also suffer from mental health issues and it’s a vicious circle of one setting off the other.
  8. We don’t love you or like you any less when we cancel last minute. Our health is so unpredictable! The symptoms can come on within such a quick amount of time that before we know it, it’s time to run to the toilet with severe cramps or having to vomit. The pain can come within a matter of minutes or when we are in pain daily, it can become worse in such a small amount of time.
  9. We miss the old life we had. We don’t expect you to know how this feels, we simply just need your understanding. We struggle to see friends and family moving on in life, having a family, buying a house or having a steady job. It is so frustrating that we can’t be there to share that with you or we are unable to see you. We cannot explain how it feels to loose who we once were and sometimes that may never go away so please know we find it hard to accept this too.
  10. We don’t deliberately miss nights out, parties or celebrations because we “can’t be bothered” it may just be that that day was one of our worst and a little understanding goes a long way!
  11. When we don’t message or call back – we are not ignoring you! Many of us have to take naps during the day and other times it’s because we are too sick to look at our phones.
  12. Just because we post photo’s on social media with makeup on doesn’t mean we haven’t had a bad day. A photo can hide so much.
  13. When you see us out of the house and we look “OK” it doesn’t mean we are. When people say “you look well so you must be doing better” is one of the worst thing you can say. We constantly battle with doctor’s who tell us that because we look OK, we somehow are.
  14. The smallest of things mean the most! When you hold our hand, when you give us a hug, the cup of tea made for us, getting a hot water bottle for the pain or a message to say you are there for us. That’s what we respect the most. We don’t want showered with sympathy or feeling sorry for us!
  15. Pyjamas are the most comfortable things to wear because of the bloating or pain. So we are sorry if we don’t look the part – you will have to accept it.
  16. Accept that we cannot change our illness, if we could then we would be better and do everything on our own.
  17. Even the strongest of us who suffer can struggle and so, we may not look like we need help but doing something small or offering means a lot!
  18. We are just as entilted to use disabled facilities as someone in a wheelchair or crutches. The judgement and embarrassment or upset we recieve when using facilities available to us is awful. We get “tutted” at and questioned as to why we are using them!
  19. Anxiety and Depression can cause our flares to be worse but it can also be a struggle for us to cope. Its a daily battle with physical and mental pain. We mat disappear for a few days socially and that’s because we need time out from time to time.
  20. Fatigue isn’t just being a bit tired – it’s consuming exhaustion that you can’t shake off. It affects your body and also the mind, where we get “brain fog” meaning we can’t concentrate or remember things.
  21. It isn’t “all in our heads”. The mental health stigma can mean that sometimes doctors will question if we are really unwell or if it’s our mental health when it is NOT.
  22. There is no cure. Juice plus will not cure us, using illegal substances will not cure us and dieting pills or certain diets will not cure!!
  23. At times it can be hard for us to only exist and not live our lives – if we get up and shower then we are trying to do our best.
  24. Travelling can be difficult when we have to go somewhere. Please understand that we don’t want to have to keep making pit stops for the toilet. We would rather be the person waiting for the toilet than the person who has to go so many times!
  25. Many of us have to recieve operations and temporary or permanent stomas. If we have any of these, please respect our recovery process. We may have leaks and when we do please don’t freak out and make us feel bad for something out of our control. The anxiety after a bag leak will always linger – “when will the next one be?”
  26. For those us who have had Ulcerative Colitis and no colon does not mean that because we have no active disease present does not mean we do not have other side effects that come hand in hand with IBD!

It can be difficult for others who do not suffer to understand where we are coming from. Raising awareness, talking to your close ones and showing them is a much better approach than getting frustrated however when we do this we want you to listen and try to understand we are explaining to help you help us. To be a team. So many of us loose friends, family and partners due to lack of understanding and judgement and the affects are devastating. Before you judge or question our illness, please make sure you know the facts. Those of you who stay with us through the bad days will enjoy the good ones with us if and when we ever get one! 😁
It takes just a few minutes to read up about Inflammatory Bowel Disease. It takes a kind heart and good person to try to understand and for that we are thankful.

Awareness, Chronic Illness Blogs

Poop Emoji Things that IBD Sufferers Can Relate To!

Today is the beginning of the Crohn’s and Colitis awareness week so, I thought about writing a blog about poop emoji items which may find IBD sufferers some comfort and positivity, in viewing these items! Don’t get me wrong, I love looking at them and all the different things there is out there, but for me I like the little poop cushion and that’s fine for me!

So, whilst looking around social media, I noticed many sufferers posting about poop emoji cushions and clothing and many of us were able to find the positive side to suffering from an incurable illness that has seen so many of us spending hours on the toilet and many hospital admissions. I have noticed it has also brought acceptance to having Inflammatory Bowel Disease. One of the most heart warming things about the poop emoji cushion is how it has brought love and support to sufferers from family members and friends, making poo not such a taboo subject!

During my longest hospital stay in 2015, I got a poop cushion from Ebay to cuddle into whilst I was on strong medications. During the painful days and sleepless nights I somehow got comfort from my little ol’ poop. It made the nurses laugh at how it’s eyes were so big and googlie! So it also brought positivity to such a terrible time. Before I was rushed into emergency surgery for a stoma to be formed, I asked my mum to look after my little poop and being so dosey on pain relief I said to it “see you on the other side!”

Members from the Crohn’s and Colitis forum via facebook wanted to take part and show what poo emoji items they owned!

Krysta with a hot chocolate and cream in her poop emoji cup from Asda!

Eleanor shared a sign from her local pound shop with a poop emoji sign – totally relatable when you need the toilet and people in the household don’t understand the concept of time!

Emily shares her poop emoji pyjamas, slippers and collection! Again so many of us can relate to enjoying comfy pyjamas and slippers especially at this time of year! My favourite is the unicorn poop emoji tshirt!

Charlotte snuggles into her rainbow poop cushion at night to keep her company!

Members of IBD Supheros also shared some items they have!

Leelo shares her badges for her work bag and eraser which are super cute! I am absolutely loving the stoma bag covers too!

Ian has a poop cushion and little keychain!

Fiona has a poop cushion and a soft stuffed poop keychain!

Stacy shows off her poop cushion too looking fabulous!

James from the Colostomy UK Support Group shows his stoma supplies with the poop emoji!

And Shauna from IBD & Me shares her little walking poop emoji that poops out little sweets!

And Emma from the Bellies Clothes Swap or Donate group shows some interesting items and the realness of trying to wrap presents with our little furry friends!

If you would like to get yourself something with the poop emoji, here’s some things that i found online!

These are all suitable for any gender and even children! Which is perfect for christmas gift or a gift to someone you know. I hope this has brought some positivity to you today! Of course, not everyone enjoys the poop emoji items so please don’t get them an item as it may offend! Another great thing however is the interaction it brings within children and how a parent who suffers can explain things in a fun and positive way!

I look forward to seeing all the wonderful awareness posts this week an if you would like to feature on my blog please message my instagram page @glitterygutsx.

Chronic Illness Blogs

10 Things That Help When Suffering From Migraines!

As a sufferer of migraines since the age of 11, I have a routine in place for when a migraine decides to attack. This year has been terrible for migraines and these 10 things really helped me! I thought it’s worth sharing if it could possibly help you or someone you know who also suffers!

So, here are my top 10 tips!

  1. Prepare yourself with essentials such as a bottle of ice cold water, paracetamol, any pain relief you take and an ice pack.
  2. Completely darken a room to lay in comfortably turning off all lights, closing the curtains and blinds.
  3. If you suffer from sickness take anti sickness medication you have prescribed to you.
  4. Go on to YouTube and search for relaxation or sleep meditation music and play it just so you can faintly hear it. It really helps you to relax!
  5. If you have a fan, put it on. I also open the window too for fresh air.
  6. Sleep under a fluffy blanket or a blanket that you snuggle into when you are feeling under the weather.
  7. When feeling a migraine coming on, freshen up before it sets in so that the time you spend unable to move very much, you have brushed your teeth and don’t feel so yuck or smelly!
  8. Make sure to keep on top of your sugar and salt levels, adding dioralyte to your water or in a seperate glass or bottle really helps you from becoming dehydrated. AVOID CAFFEINE!
  9. Pop your phone on silent and let the people closest to you know you are OK and that you may be uncontactable for a few hours.
  10. Sleep it off if you can. Some antickness medications, pain relief medications and pain can make you drowsy which works totally in your favour! I take an antihistamine containing chlopheramine which helps me sleep.

Migraines can totally suck and take the day away from you! Lying there for hours, I even spend hours crying because the migraine is just so intense. It is really important to see a doctor if you are having regular and persistent migraines. Stress is a huge factor so if possible try to think of things to relieve stresses in your life! Many illnesses have migraines as a symptom so by setting up your own routine or following mine can help when they arrive! If you start to feel really unwell and have sinus pain, again seek medical help as this is usually an indication of a sinus infection (and sadly know I it!)

If this helps you or someone you know then I am so happy to be able to help! Take care of yourselves and don’t forget to keep hydrated even in winter!

– Alannah X

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.🖤

Awareness, Chronic Illness Blogs

What is Chronic Sinusitis?

Chronic Sinusitis is a condition that affects the nasal sinuses which become inflamed and swollen that also causes issues with your ears, nose, throat and head.

Long term issues can happen from a sinus infection that reoccurrs and medications such as antihistamines are given and sprays to help clear this up. Antibiotics are also given when infection is present.

So what are the symptoms?

  • Thick, discolored discharge from the nose or drainage down the back of the throat (postnasal drainage)
  • Nasal obstruction or congestion (causing difficulty breathing through your nose)
  • Pain, tenderness and swelling around your eyes, cheeks, nose or forehead
  • Reduced sense of smell and taste
  • Ear pain
  • Pain in your upper jaw and teeth
  • Sore throat
  • Bad breath (halitosis)
  • Fatigue or irritability
  • Nausea
  • Nausea

Chronic sinusitis and acute sinusitis are similar with signs and symptoms but are much different. Acute sinusitis is a temporary infection which last upto 1 to 3 weeks. Chronic Sinusitis is an infection that lasts longer and often cause more fatigue and a fever isn’t a common sign of chronic sinusitis whereas acute sinusitis, a fever is.

What are the causes?

  • Nasal polyps – tissue growths can block the nasal passages or sinuses.
  • Deviated nasal septum – crooked septum where the wall between the nostrils restrict or block sinus passages.
  • Other medical conditions – the complications of cystic fibrosis, gastroesophageal reflux, or HIV and other immune system-related diseases can result in nasal blockage.
  • Respiratory tract infections – infections in your respiratory tract, most commonly colds, can inflame and thicken your sinus membranes and block mucus drainage. These infections can be viral, bacterial or fungal.
  • Allergies such as hay fever – occurs with allergies that can block your sinuses.

If you suffer from reoccurring sinus infections then see your GP for a referral to your nearest ENT clinic. For normal sinus infections, salt rinse sprays work really well to clean the nasal passages along side a spray recommended by your GP. I have found only one medication that helps me durinf the night called Chlopheramine which is an antihistamine.

There are also support groups via Facebook you can join however ALWAYS consult your GP or ENT consultant before changing or trying anything.

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!