Awareness, Chronic Illness Blogs, Uncategorized

Where Did HIV and AIDS Come From?

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After watching the documentary about Freddie Mercury and the film Bohemian Rhapsody, I wanted to find out more about where the diseases HIV and AIDS came from. The impact that these two diseases have brought to people in several countries was and has been catastrophic.

Let’s talk about HIV and AIDS – 

HIV broken down is Human Immunodeficiency Virus which attacks the immune system and becomes AIDS, was first discovered in America in the 1980’s. At first people didn’t know what to call the disease and referred to is as ‘gay’ due to the fact that gay men were reporting to have rare diseases such as Kaposi’s Sarcoma and a lung infection called PCP which were linked to this unknown disease.

AIDS broken down is Acquired Immune Deficiency Syndrome and is the most advanced stage of HIV.  Someone with AIDS has both HIV and at least one of a specific list of ‘AIDS-defining’ diseases, which include tuberculosis, pneumonia and some types of cancer.

In 1983 the death rate from HIV was 16,500 which raised in 2006 when the death rate went up to 2,000,000. In 1999 scientists found a strain of SIV in a chimpanzee which was very similar to HIV which affected humans and it was then proven that HIV had come from chimpanzees after contamination from chimpanzee to human. But how did the chimpanzee get SIV? Scientists conducted even more research into how the monkey’s got SIV in the first place and soon realised that a chimpanzee had eaten two other similar and smaller monkey’s, in which each monkey had a different strain of SIV. Due to this chimpanzee eating two monkey’s with a different strain of SIV each, combined this turned into a third virus which can affect humans known as HIV.

So how did humans become contaminated with HIV from chimpanzees?

It’s thought that humans killed and ate the infected chimps or their blood got into contact with a wound or cut. There are 4 different types of HIV which include the groups M,N,O and P, the main strain that has spread throughout the world and is responsible for the highest rate of HIV infections is group M. The earliest that this was detected was back in 1959 where a blood sample was taken from a man in the origin of Congo. From this, we know that HIV first developed in Africa (Kinshasa to be exact) so the next question to answer – how did HIV spread from Africa? In the area of Kinshasa, there are many transport links such as the roads, railways and rivers. It also had an increasing sex trade around the time that HIV was beginning to spread which is believed to have largely contributed to the spread of the disease. This has resulted in racism and discrimination to those who live there.

People only became aware of HIV in the 1980’s when it was officially discovered as a new health condition. In 1983 the disease was given more research by researchers at the Pasteur Institute in France which discovered by the end of 1983 that the unknown disease was finally acknowledged as AIDS and that HIV was the cause of AIDS. It was also concluded that those who were higher risk of the disease were haemophiliacs (a rare condition that affects the blood’s ability to clot) and heroin users. HIV stays in the body for life, however treatment is available and can keep the virus under control and the immune system healthy. Without this  medication people with HIV can develop AIDS and is life threatening. If HIV is caught early and treated with medication, it will not lead to AIDS.

How can you can you get AIDS?

  • Vaginal or anal sex without a condom
  • if your partner has an unknown HIV status, a detectable viral load
  • Sharing injecting drug equipment
  • Oral sex

Treatment for HIV is a medication first started in 1997 which increases a person’s CD4 count and reduces their viral load. This means that those who caught HIV before 1997 developed AIDS and as a result passed away. Treatment is now so effective that it reduces someone’s viral load to undetectable levels within 6 months, maintaining them to have a healthy immune system and this means that they cannot pass on the virus.

 

 

 

 

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Chronic Illness Blogs, Mental Health Blogs

Nurse VS GP: which is more beneficial?

NURSE VS GP

For approximately four years, I have seen a variety of health professionals but never really knew which each individual one actually does. After seeing my Nurse Practitioner at the beginning of the week, I asked her what the difference was between her job and my GP’s in terms of what they specialize in and their roles when it comes to providing care for their patients. It is just as beneficial to see a Practice Nurse as it would be seeing a GP. Here’s why;

A Practice Nurse – 

Practice Nurses are registered nurses that work in GP surgeries. They provide care in the following aspects:

  • Collecting blood samples
  • ECG’s
  • Wound management
  • Health advice and vaccinations
  • Child immunisations and advice
  • Womens and Mens health including sexual health
  • Swabs
  • Blood pressure
  • Urine samples

A practice nurse will have more specific jobs within the practice. They can help and advice within minor illnesses however they cannot diagnose or prescribe medications, however you may find that some can. They also run clinics for long term conditions such as Diabetes and Asthma.

A nurse Practitioner is a nurse who has advanced in their nursing with additional training and skills who are usually able to prescribe medications and have more knowledge with chronic or long term illnesses.

Both have access to your medical notes and care plan if you have one put in place. Many Practice Nurses/Nurse Practitioners specialise in different areas of health which can be very helpful.

GP’s – 

GP’s (General Practice) provides care in all common medical conditions, refer patients to specialist hospitals and focus on the patients health in all aspects such as :

  • Physical
  • Psychological
  • Social

This also includes community, home and care in hospital. GP’s who care for patients with chronic illness have the aim to enable them to stay at home and keep them as well as can be. GP’s can also work in different aspects of the hospital such as A and E centres, Discharge planning and may run clinics. They look at the patient’s medical history and the symptoms that they present with at the time of the consultation. If you have a phone consultation they can also give a patient advice via telephone or organise for them to come in for example a blood or urine test.

 

 

Chronic Illness Blogs

Diets For Different Illnesses

I wanted to do a blog to help those with diet issues with different illnesses and some easy go-to foods. I have done a lot of research into this on various websites such as Crohns and Colitis UK, Colostomy UK, NHS Top Diets Review, The British Dietetic Association, GIFT UK and various social media platforms.

The First Diet that I was really interested in after reading is the Blood Type Diet. From the research that I have done, it has shown to be a diet specified to your blood type. Peter. J D’Adamo suggests that the foods you eat reacts chemically with your blood type, so following a diet to your blood type may help you to digest food more efficiently and to help you lose weight, have more energy and help prevent disease;

Blood Type O: High protein diet especially lean meats (such as chicken and turkey), Fish, Vegetables. You also want to be light on foods such as grains, beans and dairy. It is said that people in the Blood Type O category suffer from tummy troubles and should take supplements.

Blood Type A: A meat free diet is recommended for this blood type, eating lots of fruits and vegetables, whole grains. It is also said that people in the Blood Type A category suffer from a weakened sensitive system.

Blood Type B: A diet avoiding corn, wheats, lentils, tomatoes, peanuts and sesame seeds. Chicken can be troublesome for those in the Blood Type B category too so eating things like eggs, green veg, other meats and low fat dairy.

Blood Type AB: This diet is more focused on tofu, seafood, dairy and green vegetables. People in the Blood Type AB category tend to have low stomach acids so it’s important to avoid caffeine, alcohol and smoked meats.

It is important that if you have an illness/disease that may prevent you from eating some of these specific blood type diets.

So let’s look at another diet that could be possible such as the Low Sugar Diet.

This diet focuses on certain food groups such as :

  • Fruits and vegetables.
  • Bread, rice, potatoes, pasta and cereals.
  • Meat, fresh fish, eggs and beans.
  • Milk and dairy foods.

Avoiding sugar is very crucial when you are a diabetic so always check the label of the food you are going to be buying. Ideally, you want a fat content of less than 100g, sugar content less than 5g per 100g and salt content of 0.3g per 100g. On occasion you can have the following:

  • fat content at 17.5g per 100g or more.
  • sugar content at 22.5g per 100g or more.
  • salt content 1.5g per 100g or more.

Advice from the British Dietetic Association is to try and snack when you are hungry, in between meals, and not just due to food being there. Try to drink something first before eating and sometimes we often mistake hunger for thirst. Also try not to buy things during your food shop which you know is your ‘danger foods’ that exceed the contents limits.

Diet advice on the Crohns and Colitis Uk website for people who suffer from Inflammatory Bowel Disease; by specialist Lisa Macleman.

“Excess calories can result in weight gain however if underweight then this is positive thing. If you are overweight it is important to avoid excess calories. Weight gain and loss is a huge problem for people who suffer from IBD, due to remission and flares. When in a flare people with IBD tend to eat easy go-to foods because it is needed for energy. When in a flare it is important to eat small portions frequently which is around 6 or 7 little meals per day.”

Many people claim that certain diets or foods can cure Crohns Disease and Ulcerative Colitis however there is no scientific evidence to support this, however diets can help someone achieve remission but never a cure, as for many illnesses. It can be helpful to recognise your trigger foods such as high fibre foods, spicy foods or other foods.

A Low Residue Diet can help when a IBD sufferer is experiencing a flare up of their disease, which many dieticians do recommend to try.

So What is a Low Residue Diet?

  • Bread, cereal and nuts – sweet plain biscuits such as rich teas, gingernut and NICE biscuits. Plain cake made from white flour. Plain crackers such as cream crackers. Smooth peanut butter.
  • Fruit and vegetables – Tinned or ripe fresh fruit that contain no seeds and have no skins on (only 2 portions of fruit per day), fruit juices and smooth coconut milk. Vegetables without skins, smooth or sieved tomatoes, strained vegetable juices, mashed potato and baked potato without eating the skin.
  • Desserts – Custard, ice cream, milk puddings, clear jelly and plain cakes.
  • Dairy – Milk (low fat is recommended), low fat cream, sour cream, creme fraiche, smooth yoghurt and cheese.
  • Drinks – Fruit, vegetable juices, milk, water, dioralyte (rehydration), soft drinks, decaffeinated tea and coffee and herbal tea.
  • Meat and meat alternatives for vegans – all meats and fish (less fat are better.)
  • Miscellaneous – eggs, tofu, soup, honey, jelly, jam, crisps and plain pretzels.

The Specific Carbohydrate Diet (SCD.)

This diet specifically is restricting you intake of carbs, by eliminating certain food types such as grains, starches, dairy and sugar. The benefits to this diet are good for someone who suffers from digestive inflammation, eating foods that require minimal digestion which can reduce inflammation. It is said that following this diet can also cause some nutritional deficiencies so always ask your doctor first. Investing in supplements and vitamins is really important on this diet.

Foods that are allowed on this diet:

  • Fresh vegetables.
  • Poultry, fish and eggs.
  • Natural cheeses.
  • Home made yoghurt.
  • Fruit and fruit juices without additives.
  • Coconut oil, olive oil and corn oil.
  • Weak tea and coffee
  • Unflavoured gelatin.
  • Mustard and vinegar.

This diet still needs more research into it but if you have tried it, I would love to hear your feedback – good or bad!

I think it is really interesting to see what research there is out there when it comes to diets and what may be able to help you but as I have said, ALWAYS consult your doctor first!

Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs

Weekly Vlog Content – That Crohns Chick Youtube Channel

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At That Crohns Chick Youtube Channel, we have some exciting content coming your way! In my new role as co-host to the channel, I thought it would be good to let you know  about what is new and what we plan on doing!

Live streams are 9:30pm UK time (me) / 6:30am South Australian time (Sharnii) where we talk about all things related to various types of Chronic Illnesses. We have covered topics such as :

  • Dating with a Chronic Illness.
  • Fibromyalgia.
  • Inflammatory Bowel Disease.
  • Ostomies (Colostomy, Ileostomy, Urostomy.)
  • World IBD day.
  • Irritable Bowel Syndrome.
  • Thyroid Awareness Week.
  • Autoimmune Hepatitis.
  • PSC / Liver Transplant.

In a few weeks, we will be expanding the channel and bringing you weekly blogs ” The Day in the Life of A Crohns Chick” which will show you an insight to how we live our daily lives, on the good and bad days, ostomy related, eating out with IBD or a stoma and much, much more! This is a good opportunity for us to let people who are not chronically sick, have a view of what it could be like which therefore can help them support those they know that are chronically ill. We will also be highlighting medications and what mental health can look like and also bringing you some positivity and laughter. This is also a chance for you to know us a that little bit more and what we enjoy.

We are looking at having more people on the channel with various Chronic Illnesses, so if you are interested please message  Glitteryguts or That Crohns Chick! We want to raise as much awareness of any type of Chronic Illness out there and look really forward to what is yet to come!

 

 

 

Chronic Illness Blogs

Top 10 Chronic Illness Related Films

13413661_10208882577449309_7060998761965754705_nSometimes it is nice to watch a film with your feet up and to snuggle into a blanket. If you are in the mood to watch a film that could be relatable to you. Although this is not for everyone!

So here are a list of Chronic Illness related films:

  1. 50/50 – Inspired by a true story, a comedy centered around a 27 year old guy who learns of his cancer diagnosis and struggle beating the disease.
  2. My Sister’s Keeper – Anna Fitzgerald looks to earn medical emancipation from her parents who until now have relied on their youngest child to help their leukemia-stricken daughter Kate remain alive.
  3. Brain On Fire -Susannah Cahalan, an up and coming journalist at the New York Post becomes plagued by voices in her head and suffers seizures. As weeks progress, Susannah quickly moves deeper into insanity. Her behaviours shift from violence to catatonia. After a series of tantrums, misdiagnosis and a lengthy hospital stay, a doctors last minute intervention enables hi to give her a diagnosis and a chance to rebuild her life.
  4. It’s Kind of a Funny Story – A clinically depressed teenager gets a new start after he checks himself into an adult psychiatric ward.
  5. Split – Three girls are kidnapped by a man with a diagnosed 23 distinct personalities. They must try to escape before the apparent emergence of a frightful new 24th.
  6. The Fault In Our Stars – Two teenage cancer patients begin a life changing journey to visit a reclusive author in Amsterdam.
  7. Forrest Gump – Forrest learns that Jenny is sick from an unknown virus (either HIV or Hepatitis C) which has no known cure.
  8. 50 First Dates -Henry Roth is a man afraid of commitment up until he meets the beautiful Lucy. They hit it off and Henry thinks he’s finally found the girl of his dreams, until he discovers she has short-term memory loss and forgets him the next day.
  9. The Vow – A car accident puts Paige in a coma, when she wakes up she has severe memory loss. Her husband Leo works to win her heart all over again.
  10. Walk The Line – A chronicle of the country music legend Johnny Cash’s life, from his early days before fame on an Arkansas cotton farm to his rise to fame with Sun Records in Memphis whilst battling depression and drug addiction.

These are some of my personal favourites ranging from romantic, horror, music related and comedy! You can watch most of these via Netflix, NOW TV, Sky Movies or Amazon Prime (or you can buy the DVD’S for cheap!)

I’d love to know some of you recommended chronic illness related films!

Chronic Illness Blogs, Mental Health Blogs

Mental Health

I have been struggling with my mental health for a long time, due to illness and things happening in my personal life. After being off of antidepressants for almost two years, my GP and I decided that it was best to go back on them as the problems I’ve been having are very complicated and I am in the process of working through them.

After my surgical termination last June it was really difficult having that procedure done itself but also coming to terms with loosing my baby and last month would have been my due date. When problems started happening at home I began to have frequent mental break downs and found it so hard to cope with life. I would lay in bed all day in the dark and try to not to talk to anyone. I would barely eat and I couldn’t see much point in being alive with the stress of everything and being chronically ill.

After months struggling with the mental breakdowns and thoughts of not wanting to be here or deal with the physical and mental pain, I went to my GP and told him that I thought it was time because everything I had tried such as medtitation and anxiety apps on my phone just weren’t helping. My GP had been asking for a while for me to go on medication for my depression and I refused because I was terrified of the side affects.

At the start of taking Prozac, I was also given Pregablin to help manage my pain. At the same time starting these medications, I caught a sickness bug and was extremely ill so they weren’t able to kick in as well as they should have so they took a little longer to kick in! I felt a little tired for the first week but nothing more than the usual tiredness I get.

Slowly those bad thoughts went away and I felt so much more motivated with my life and wanted to not only live but to accomplish goals and dreams, doing more for charities and also taking care of me more. After a few months the dosage was put up because I felt the affects were wearing off a little. Since then I do still struggle some days but not as bad as before. My Anxiety and PTSD isn’t great but I’m working on those by distracting myself when I feel anxious by watching films or cuddling my 2 yorkies.

Just recently, I had an iron infusion as my ferratin levels were below 50 again. As my iron was dropping, I felt my mood dropping too. After talking to my IBD nurse and another GP it was said that when your iron drops it can also affect your Depression which I didn’t know! So in 2-4 weeks my iron should hopefully be back on track!

When you suffer from mental health, it is really difficult to open up to anyone but also to admit when you need help. Taking antidepressants is nothing to be ashamed or embarrassed about because the way I see it – you are helping to help yourself get better. Finding a GP or someone close to talk to can really help let out some pain of feeling alone in the battle inside your head. There are a few things you can try with mental health but I really strongly recommend talking to your doctor and making sure they are happy for you to try other things first.

There are apps you can download for Anxiety such as Headspace and learning meditation. Many people find that seeing a councillor helps but the waiting list for one is very long on the NHS. You can also read books on coping with anxiety and many various mental health conditions from amazon or local book stores. Colouring in books can also be very relaxing and handy when you want to go somewhere quiet and colour. Animals can also really help to comfort you and knowing a little furbaby loves you unconditionally is one of the best feelings in the world!

I have heard people refer to antidepressants as “wacky pills” and “loopy tablets” and I just think that is completely unfair for those who suffer. Taking antidepressants does not define you! For anyone who does not walk a day in our shoes they have absolutely no right to judge what they do not know or understand. Be proud for taking that step in talking to someone or swallowing your dose of antidepressants for the day, each day. To fight those relentless demons day in, day out makes you fucking strong.

And if nobody has told you, I’m proud of you.

Chronic Illness Blogs, People's Stories!

Funny Stories With A Chronic Illness

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Brenda and myself wanted to a blog about the funny things of being chronically ill, to make others laugh. You never know when someone may be feeling a little down and need a good laugh!

In various chronic illness groups via Facebook, I asked people if they would like to share their funny moments with me. Enjoy!

Shannon:  ” I was in the A and E once and the nurse came in and asked what the problem was. I said “I’m pretty sure I’m dehydrated. I have a rare autoimmune disease called Behcet’s are you familiar with it?” She looked at me like I’m stupid and says THE SHITS? Yeah it’s not that rare.. I looked down and said no BEHCET’S but my husband was in the corner cracking up and trying not to let the nurse see. She eventually said to us when we got our survey at home about our experience to say her name was phoebe bushé and not her actual Name. She was mortified we would tell in the evaluation about her and THE Shits Tale.”

Nick: ” I feel sorry for the poor sods who have go on nights out and have to crap on toilets that has no lock on the door. All while i’m still boogying and having a cheeky crap in my bag!”

Claire: “My funniest is when I sat down for a breather on the edge of a freezer in Tesco… of course I fell in didn’t I and couldn’t get back out again. Spent a good 20 mins sitting in the frozen sausages!”

Perry: “After my operation when I could finally stand up and I needed to go toilet, I stood up and went for a wee in the sample bottle. The curtains around my bed were shut but as I finished, I pulled my bottoms up I turned around and realised my windows blinds were up and everyone in the cafe could see my bum cheeks through the window..”

Tina: “When I was teaching and the time came for a stick, so I invested in one that had fairies on as the children used to call me mrs fairy instead of Ferrie. Even had one child ask if the reason i worked in school was to see which children had lost teeth! They also asked if I got tired collecting the teeth and took me a while to click they thought I was the tooth fairy.”

Josh: “I was getting a scrotum ultrasound with a male ultrasound technician as Behcets can cause pain there for males. Anyway we were having small talk about where I was from and talking about how I had moved back to town from a place that has a bad name for crime.  I said I’d never had a problem in the 2 years I was there but that I had read in the newspaper that a man was killed for money in front of the pawn shop just 2 weeks after I had left, the same pawn shop that I used to visit all the time a few times a week. The ultrasound technician was just about finished scanning my sack with the ultrasound and he said “the guy must’ve been wanting money for porno’s” but I didn’t quite hear him so I just said “mmm.” He was finished and I left. I then realised later what he had said and I felt so stupid this guy had his hands near my man parts scanning me with the ultrasound machine the whole time thinking I was talking about a adult shop “porn shop” but in reality I was talking about a pawn shop “second hand trader!”

Val: ” I took my mum along to a seminar (she had a colostomy called Arthur) well he blew off all through one of the speeches my mum, me and my husband (who by the way has an ileostomy) set off giggling and didn’t stop. My step dad did not see the funny side and at the end a lady came up to us and said I knew that was you Sheila, as they was in hospital together.”

Shirley: “When I was out shopping one day I had nerve spasms, so I decided to look in a shop window and do breathing exercises til they passed. Someone inside was waving at me and I waved back! I didn’t recognise the person but when the spasms eased, I looked again and realised I’d been waving at a MANNEQUIN!!!”

Em: ” I was meant to be collecting a sample for the Doctor. I felt an urgent need to go and nipped to the loo. Thought “ooh this will be a good one, I’ll just grab that bowl” (located about 2m from toilet). In the time it took to travel across the bathroom for the sample bowl, I couldn’t hold it and pooped everywhere. I definitely saw the funny side but this really is toilet humour!”

Jennifer: ” My 2nd symptom was going blind in the left eye for a few weeks. I got sent to ophthalmology and they said “cover your left eye and read the board on the wall” so I obliged. Then they said “now cover your right eye and read the board on the wall”, I said “what board?” then the ophthalmologist said ‘”the one there on the wall. I said “yeah, what board?” Again they said “the one on the wall, starts with E at the top!”which went on for another couple of minutes before they realised that I couldn’t see anything out of that eye, even though I told them that to start with!”

John: ” I went for a job interview and thought it was best to tell them I had MS. They said “that’s good, being well versed in Microsoft programs is just what we need!”

Ceri: “My very first relapse, before diagnosis, I had double vision so the eye specialist gave me an eyepatch. After the hospital visit my sister took me to the coffee shop and all I could hear was a little boy telling his mum.. “mum” mum there’s a pirate over there, over there Mum” The poor mum was so apologetic but all we could do was just laugh.”

Kevin: “I was at a routine hospital appointment and went to pharmacy. They said “do you pay for your prescriptions mr Childs?” I mumbled something about permanent colostomy and that I have medical exemption certificate. I then patted my abdomen to indicate where bag was. I sit down and 10 minutes later called back up. “Thank you mr Childs my colleague says you don’t pay for prescriptions because you’re pregnant..”

Jo: ” I’ve always been quite a good mimic and so when I had a huge facial weakness a good few years back, with my short hair and glasses, for nearly two months I was a very popular Anne Robinson (from the TV show You Are The Weakest Link) ‘look alike’!”

Victoria: “When my muscles spasm they can be rather violent. So one night I was sat watching telly and hubby gives me a Magnum ice cream, cue a violent spasm and my ice cream goes flying across the room and the bloody dogs think it’s Christmas!”

Helen: “My GP was explaining my CT scan results and that I had a fistula from my bowel to my bladder. So not funny, but she said “Basically Helen, you are farting into your bladder.” For some reason, that set us both off and we giggled through the rest of the appointment!”

Megan: “So my dog willow had an itchy annoying butt so we got an appointment at the vets. The vet told me it was probably her glands that needed emptying and that he would do it just now. So there he is sticking his fingers up my doggies butt when i awkwardly say “oh me willow its normally me we fingers up my bum!”The sudden realisation that this guy has no idea I have bowel disease and thinks Im a dirty mare who needs locked up. I didn’t know where to look. I was just trying to lighten the mood and make my dog feel better!”

Stephanie: “There is nothing more satisfying than having a poo in marks and Spencers food hall…. It’s not just a poo but a marks and Spencers poo!”

Colleen: ” I have a LOT of difficulty sleeping. SO, there’s no telling when I will have a sleep ATTACK! So, one Sunday morning I went to Church, sitting next to my husband and fell asleep HARD! My neck fell back, and a GIANT SNORE came shooting out of my nose. If you picture that, you can imagine the sound. It was LOUD and although I was with Church folk, I did feel a bit judged, so I tried to keep from laughing as I slithered out of the door!!!”

Libby: “I took my daughter to the ER because she had a bad migraine from Behcets and the doctor came in to check her. She said ” I have Behcets” and he said “oh I know what that is…you get lesions on your penis!” haha shes female..”

Callum: “Every time it farts it feels like someone is blowing raspberries on my stomach!”

Joseph: “I once was at the casino playing poker, and the person next to me thought it was my way of wishing good luck on my cards by shaking the cards a little. It’s actually bc I have a bad tremor in my left arm right now.”

John W: “When I first told my now partner I had a colostomy bag she sed so u are a real living shit bag!I found it funny don’t know if others will but 7 years on we are still together.”

Robin: “I was at my 1st appointment at an MS Clinic and in the midst of my first really bad flare-up. All the nurses were incredibly nice and I had asked them what their favorite treats are (so I could bring them something at my next appt). I got no answer at the time of my question…but about an hour later, as we were preparing to leave the office and head to the infusion clinic – one nurse says “jolly ranchers”…I thought to myself – You can have any treat you want and it’s Jolly Ranchers, weird – but okay- looked at her with a smile and said, “Awesome, I’ll bring you a huge bag of them tomorrow ” she laughed and says, “NO, bring Jolly Ranchers to your IV steroid infusion, they are the only candy that will get the metallic taste out of your mouth!”

Helen M: ” My recently installed bag is called Louie, I’ve never been able to afford an original Louis Vuitton bag but he is my sure my own original!”

Jessica: “I still laugh about my enema being put in the wrong hole by the student nurse. I had to tell her it was the wrong hole before she squirted it.. She was very embarrassed. Then afterwards, she was like do you want privacy … yes but instead she was in asking bloody questions and doing obs!”

Anonymous: “There is this funny thing that always makes me laugh! I have dual mental health diagnosis and other crap like chronic IBS. I get very very down in this life. One of my fond memories is when I was living with my now passed away Grandmother, she had slight bowel issues also. Each step she took up the stairs to the loo, she farted! She was all like “Ooooh these stairs are creaky today!” It’s even more amusing as she was all prim & proper!!!”

Nuala: “When i was very ill and hospital told my family I have to have colostomy our young James said to his mum “she said it’s bag and you can’t poo only in a bag” he thought about it and said “oh will she have to have big hood like max?” who is the dog so he couldn’t bite his bum after his operation! I thought that’s great made me laugh!”

Brenda: “My first funny story happened in 2015 after surgery for an abscess on my surgical scar. I was fitted with a vacuum dressing and pump then discharged. I got home and settled for a bit then at bedtime went to the loo to discover that the nurse who discharged me had put the vacuum dressing completely over my bag which had leaked output and blood. I couldn’t deal with the bag because it was trapped under the dressing which I couldn’t do myself. After a few calls an ambulance was sent and a paramedic was dealing with me in our tiny toilet. Now when I change or empty my bag I pull my top right up and fold it up. Paramedic stands me up to take me to the ambulance and asks if I feel comfortable. Totally forgetting I’m in my pjs with no bra up goes my top and that poor bloke got an unexpected eyeful particularly as my boobies have gone a bit south. All the way back to the hospital I kept avoiding his eyes!”

“My second funny story was when the hospital the nurse took me into the patient toilet to sort the bag out and as I sat on the loo she crouched and balanced in front of me till she lost her balance and fell forward on to me. I fell back onto the flush sensor and had what I can only call an unexpected bidet. We both laughed so much it happened again and decided I’d better stand up!”

“My third one is from a couple of months later. My daughter was taking me to Birmingham on the train for the gybo first party. The train pulled up, doors opened and I got one leg on but didn’t have the strength to get the other leg on. Two lads who were on the train came forward and grabbed a hand each and started pulling me on and my daughter put her shoulder under my bum whilst explaining to the people in the queue behind me that I’d been poorly. We did have a good laugh about that one I won’t mention going to Earl’s Court to see George Michael with my daughter when I was newly diagnosed. Seats up about as high as you can go and three guesses who was just coming back from the toilet as the lights went down and George walked on the stage. I think I spoiled the moment for the people in our row who had to stand up and let me through.”

Justin E: “Best I have done is I was putting stock away in shop and just fell asleep on floor with packets of nut and bolts and I was found by a customer who woke me up as he thought I had fallen and knocked myself out!”

Nan: ” i sat on the loo for ages couldn’t feel the wee but could hear it. I sat thinking god that’s a long wee till i realized i wasn’t weeing at all and it was the cistern filling up!”

 

Hope you have enjoyed these funny stories as much as I have! I have had tears in my eyes reading them with laughter! Thank you so much to all who took part and to Brenda for the idea and inspiration of this blog!

-Alannah

Chronic Illness Blogs

Preparing For A Colonoscopy

 

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Many people who are diagnosed or undiagnosed may go through preparation for a procedure such as a Colonoscopy. This is where a thin tube with a camera on the end is inserted into the rectum and travels into your intestines.

Before I begin on the preparation drink information etc, I want to let you know that this procedure can save lives and can help get a diagnosis of what is happening. Usually the drinks they give you are either Picolax or Moviprep and sometimes Kleanprep which are laxatives to clear out the bowels to get a clear look inside. When I had prep, I found Moviprep easier to handle than Picolax however if constipation is something you suffer from Picolax can be a better option but it really does depend on what your consultant or appropriate person doing the scope wants you to have.

The first drink isn’t pleasant and I’m not going to sugar coat it and say “it tastes divine like a cocktail” because it doesn’t but you can make it taste better by adding diluting juice that you like to it, which can help make it more bearable for you. You can also put it in the fridge. With Picolax make sure you stir it and leave it to sit for a minute as it can be sore on your lips when newly mixed (just from my experience.)

A few hours later your letter or information sheet will tell you to drink the next sachet. Many people find that even after taking both, a few hours later nothing happens and are left wondering why it was even important to drink them.. that is until you feel the sudden need to run to the loo! It’s not pleasant but it does the job it needs to which is essential for your scope. If you are allowed sedation they will put an IV line (cannula) in a vein for direct access for the sedation, this is to help you relax.

There are some thing you can do to make preparation easier for you:

  • Have some heat pads or a hot water bottle close by if you have pain/cramps.
  • Keep a blanket in the bathroom near the toilet.
  • Keep a bottle of water in the bathroom and by your bedside.
  • Take some paracetamol to help with pain and sweating if going to the loo is making you sweat.
  • Pads incase you don’t make it in time.
  • DON’T plan to go anywhere!
  • Keep your medication close by so if needed it is there.
  • As said above, diluting juice.
  • Comfy clothing that isn’t tight as you may bloat.
  • For the 24 hours leading up and waiting, only drink clear fluids.
  • Avoid taking iron tablets a week before your procedure.
  • Drinking plenty makes the bowel prep work better.
  • Using a straw to drink the prep.

My first Colonoscopy was back in 2012 when I was 17 and I was diagnosed with Crohn’s Disease and Ulcerative Colitis. The prep wasn’t as bad as I thought it would be, I found not being able to eat the hardest part! At the time I finished my second drink my mum was eating a tub of my favourite kind of pringles and I cried (ha ha.) I was terrified when I got to the hospital, clutching my hot water bottle whilst crippled over with pain, not knowing what was wrong with me.

I was given sedation and pain relief through my cannula and I felt quite tired and drunk! They first inserted a long tube which puts air into your intestines and then the flexible colonoscope with the camera and a light at the top. I found that the air was more uncomfortable than the procedure itself. Before I knew it, I had to fart and I didn’t know what to do. I lay there squeezing my cheeks and I couldn’t do it any longer. I said to the nurses in the room that I really had to fart and could I be excused, I was told to go ahead as it wasn’t anything unusual! So thinking only air would come out I went for it and I messed everywhere and felt terrible for everyone in the room and I was so embarrassed. I was so surprised that the nurses didn’t care, they’d seen it all before me! They completely put me at ease and held my hand through the tears of anxiety and embarrassment.

At the side there is a screen so the doctor or endoscopist can see from the camera inside you, if you are squeamish then don’t look. The endoscopist or doctor may also take biopsies to send away to the lab. Recovery took a few hours as I slept off the Sedation then I was allowed to go home, stopping at McDonalds first of course! Eating my entire body weight in fries and chicken! My rectum was quite sensitive for the next few days due to the wiping from frequent toilet trips. It can take a few days for your bowels to calm down and usually you do experience bloating from the air that is put inside your bowel so drinking plenty and walking around can help shift it. Taking paracetamol can help too.

I hope this helps you with your first time having a Colonoscopy.

-Alannah A.K.A Glitterygutsx

Chronic Illness Blogs, Personal Blogs

Self Care

Self care is so important especially to those who are chronically ill. Looking after you can be hard when you struggle just to do basic tasks from fatigue.

When able, take some time out for you. Do a facemask or have a soak in the bath with your favourite bath bomb. Watch your favourite films or shows and eat the crap you have been craving! Chill out time can also benefit anxiety if you have been feeling on edge or suffering from panic attacks. Working on self care can also help you try to figure out what to do when a panic attack occurs.

For my self care routine (when able) is to sit on my bathroom floor with a basin of warm water, bodywash, netflix on my iPad and shave my leggies. I then wash my face, exfoliate, cleanse, tone and hop in the shower and I come out not looking like a hairy yhetti! Ha ha. I will also change my bag if it is bag change day and apply moisturiser to my legs, all of these combined makes me feel so relaxed. I always worry about my image and I can’t stand having hairy legs but I struggle a lot so by the time I’m able, they look dreadful and my self esteem drops to an all time low.

Pain, fatigue, sickness and all that negatively affects you with an illness can be a struggle. It is not glamorous and it can make you feel shit. A little bit of pampering goes a long way in terms of making you feel better mentally and can help to give you a confidence boost. Nothing beats feeling fresh, getting into clean pyjamas and relaxing in bed even when in pain.

Hoping everyone manages a pamper some time soon and remember to look after yourselves.🖤

Chronic Illness Blogs

My Go-To Hair Products for Chronically Ill Hair

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For so many men and women who are chronically ill, their hair also suffers as well as a wide variety of symptoms. This can be caused by using medications to control the disease such as chemotherapy drugs (you can read my blog Chemo Isn’t Just For Cancer here) or by vitamin deficiencies, malnutrition and sometimes from long term steroid use.

I remember talking to my hairdresser recently about this issue as back in 2015 I was on a chemotherapy drug called Methotrexate and my hair was thin, I lost almost all my eyebrows and my eyelashes looked awful with what was left of them and back then had no real clue as to what to use that could help. It’s really important to try and do what you can to look after your hair to avoid getting the chop, which believe me is devastating if you had long beautiful hair before medications!

It’s also important to get your bloods checked for any vitamin defencies or thyroid issues before following any the tips and products below.

So what products and things can help?

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Matrix rebond Trio

This trio helps to repair the hair that has either been chemically damaged or is just pretty damaged as it is and helps the hair to become strong again. The number 1 and 3 you use as normal then once a week use the number 2, after using 1 then add number 3 without washing out number 2! I also use a tangle teezer brush and brush this through my hair which helps when I need to brush my hair afterwards.

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Nioxin Hair Care

Many people including myself recommend this from my own personal experience if you have had or have thin hair that is thinning. It can help but do bare in mind that it may not help completely. To see which one is best for you please click here to visit the website.

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Regular trims

Having your hair trimmed from time to time can help to cut off the bad straggles at the ends which in time travel up the hair and cause damage and split ends. It also helps your hair to be healthy and shiny. Trims can also help your hair grow but that depends on your own body.

Hair conditioning treatments at your hairdressers

This helps to rebuild broken bonds and damaged hair and repairs leaving your hair beautifully soft and conditioned. It also helps repair the split ends.

Less heat

Using heat on your hair too much causes damage to the hydrogen bonds in the hair making it dry, brittle and full of split ends. Leaving your hair to air dry and only using heated irons every so often is recommended by hairdressers. Be sure that when using heated irons, you use a heat protection spray, the Matrix one is really good and smells lovely!

Washing every 3-4 days

Washing your hair a few times a week is better than every day, as washing every day strips the hair of its natural oils keeping your scalp and hair healthy. This gives you hair the chance to heal and have more shine.

Taking vitamins

You can find these in Holland and Barrett however always ask your doctors first!

Avoid box dyes!

Box dyes are great for saving money and time however they are extremely damaging to the hair over time. It makes it harder for a hairdresser to take out the dye without damaging your hair so it is a very long process to get it out and the desired colour to enable good condition of your hair.

Tangle Teezer Brush

Using a tangle teezer brush is much better for getting those tough knots and tangles out! I personally use mine to brush through conditioner in the shower so after rinsing, there is less tangle and the product is taken evenly through my hair.

Here are some examples of what people have faced with their hair from being chronically ill:

Levi now (left) and when she lost her hair (right) due to being on cyclosporine to treat Ulcerative Colitis.

Myself now (left) and when I was on methotrexate (right) to treat Crohn’s Disease and Ulcerative Colitis.

Emma now (left) and whilst on plaquenil to treat connective tissue disease. (right)

Brenda now (left) and whilst on Methotrexate (right) to treat Crohn’s Disease.

Kay before treatment (left) Kay now (right) from infliximab medication to treat Ulcerative Colitis.

Sarah now (left) with thin hair due to the medication vedolizumab to treat Crohn’s Disease and when she had thick hair before treatment (right)

Lauren now suffers with alopecia areta and both these pictures are recent.

Emily now (left) whilst on Colchicine and what her hair was like before this medication which is to treat Behcets Disease. (right)

Candice before methotrexate (left) and now after having to have the chop (right)

Nic now (left) after long term treatment of Steroids for Crohn’s Disease.