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I came across many blog posts that say chronic illness is NOT a competition. I believe that no one should compare their illness or pain to another person’s – because how do we really know what the other person is feeling? However, I haven’t discovered many discussions about what happens when chronic illness DOES turn into a competition.This blog post may ruffle a few feathers but I think this is an important topic to explore.

Comparing patient’s conditions/ pain is the challenge many doctors are faced with. In particular, places are highly competitive to get on inpatient and outpatient physiotherapy rehabilitation programmes, mental health wards and therapy. Alongside, eating disorder centres and for bladder instillations. In some cases, vulnerable peoples routine tests that came back clear or their physical appearance looked well on assessment meant their symptoms were dismissed and they didn’t reach an official diagnosis.

And… unfortunately, the chronic illness competition doesn’t stop there.

Online trolling can occur within and outside of the chronic illness community and your own family may not accept your illness or its severity. This post is to share others and mines experiences of not feeling ‘sick enough’ in hospital, in their family and in the online chronic illness community, with ways to overcome these challenges.

Patients ‘Not sick enough’ Experiences Cheyenne Wyntar  

“When seeking mental health treatment, they only accept people that are very ill and assume that you do not meet that standard so they cannot accept you. Every step of the way they make receiving treatment difficult because you have not been recently hospitalized or you are not homeless”.

Jenna Green

It is so strange to me how we humans default to competition. It’s sad to say, but yes I have doctors tell me I look good so I must be better. The MS tests in general aren’t very comprehensive so I am only a 2 on their silly scale, but even my neurologist agrees that isn’t measuring things that are impacting my life the most (pain, fatigue, dystonia, cognition). I do often feel I have to prove myself because ‘but you look so good’ to other people”.

Carole Griffiths

“I could only walk a mile with difficulty, down from several miles. My physiotherapist was shocked because he could see something wrong. However, he said G.P’S weren’t taking me seriously, because I could still walk a mile – so I wasn’t considered a problem“.

Mavis Busheman

I was diagnosed with anxiety disorder in 2010/2011.  My grandfather passed away in 2015 and my brother in 2016.  Although, I have been hospitalised before due to suicidal thoughts, I couldn’t get through to the doctor lines and was turned away many times from the psychiatric ER because they didn’t have open beds. I wanted to go to this speciality hospital but, they wouldn’t admit me there either. Eventually, I got on a partial hospitalisation program and received DBT treatment that is working well. However, many times prior I was given medication and sent away being told to wait for it to take effect”.

Me 

“When I first suspected EDS, I visited my G.P and explain my brother had been diagnosed with it. I discussed how I had very similar symptoms in terms of hyper-mobility and very poor health for years. My G.P was reluctant to refer me to a rheumatologist because I had a part-time job and told me just because my brother had the illness didn’t mean I did. Due to chasing my G.P I choose to pay to see a consultant rheumatologist privately, whereby I was diagnosed with EDS. Although for my G.P this wasn’t enough, as the EDS guidelines changed in 2017. I was then was referred to have my diagnosed reconfirmed by the NHS. After my EDS diagnosis was reconfirmed my G.P started taking me more seriously as referred me on to multiple specialists. However, initially it was an extremely frustrating experience to get a doctor to listen to me.”

Top Tips to Avoid Medical Treatment Rejection 

Take Medical Letters with you

If you have a complex medical history, starting from the beginning with each new doctor can be extremely time consuming. By taking medical letters with you, doctors aren’t taking your word for it, there is proof that you have the condition/ pain and had tests carried out.

Take someone with you to your appointments

I can’t guarantee taking someone to your appointments will get you a fast track to treatment. However, I have found taking someone with me helped articulate my illness, especially when forgot to mention certain things and doctors were less keen to dismiss me.

Explain any previous treatments and the outcomes

If you tried any recommended previous treatments that were not as successful as you had hoped flag these up to your doctor. This shows that you were co-operative patient but need a more suitable alternative.

Make yourself available

I understand that having wide availability is not always possible due to family, study or work commitments. However, making yourself widely available may help you move up waiting lists. If the date you are then given is not suitable, you can re-arrange it.

Keep a Diary of your Symptoms

Keeping a diary of your symptoms can help to identify trends in your pain and illness.

Research Treatments before your Appointment

Researching the treatment you are trying to get on shows that you understand what the programmes entails. It can also help manage your expectations of what it can offer you.

Ask questions

Asking questions helps you to understand what treatment is being offered and shows the doctor your interest and desire to get better. Also, if you don’t have medical insurance – you will be sure to want to know the cost.

Appeal the Decision

If you are rejected from medical treatment, then there is usually a process for you to make a written appeal. If you are located in the U.K or U.S, the Freedom of Information Act can help find more information on why a negative decision was made and may support your appeal case.

When your ‘Not sick enough’ in the Family Alice Wallace

“Totally feel this, from Doctors who refuse to believe there’s a problem to some of the groups that make me doubt my own illness, to my own parents (who are both ill) not understanding why I can’t do things, etc. Then the exact same thing with mental health, and the sh*tshow of the two combined with the NHS, seriously tempted to give up all together some days”.

Max Knapp

“I am constantly dealing with internalised thoughts about not being enough because my parents always encouraged me never to seek treatment for physical alignments unless it was very obviously life threatening. We had no ER trips rule after I went to the ER on my own following a car accident where I was having major headaches and neck pain (which in retrospect was probably an increased awareness of existing pain). Even now they tell me not to let my doctor refer me for any diagnostic testing because it will ‘cost extra’. I imagine it’s just so deeply rooted in them growing up in poverty and learning to ignore their own problems.

My dad has diabetes and consistently ignores his own pain and his need for insulin. My mom had a tumor that affected her life that she fought for 9 years, and she still carries skepticism of illness.  This has been detrimental to their and my own outlook on mental health. About a year ago I was diagnosed with a spine deformation that probably could have been treated when I was a child. My parents were in shock because they always believe there was nothing wrong with me.”

Angela Tipton

“I think a lot of can relate to this sentiment. In my life it’s been more my family justifying why I should or shouldn’t be able to do something because ‘you don’t look that bad’ or worse from a ‘sister that is a nurse’ after I explained why I have to avoid stressful situations because it makes my symptoms worse. People are so clueless sometimes.

Me 

“Coming from a family that all suffer at least one chronic illness, can be very stressful if we have flares up at the same time. If me and my brother need help my parents are faced with the decision who needs the help more. Things we could need help with are being taken to a hospital appointment, having our washing done, having a meal cooked for us.  Due to my parents being our carers, and suffering themselves leads to a great amount of tension in the home”.

Buy a Chronic Illness Awareness Bracelet Design (Morgan Shaw)

Lets raise awareness of chronic illness together. 50% profit is donated to Ehlers Danlos Support U.K. The spoon charms are a reference to the Spoon theory. 

Ways to talk to loved ones about your chronic illness

Write a letter

Writing a letter can help you articulate your thoughts without confrontation. It also gives the reader a chance to process what you have written and to write down any questions.

Discuss your chronic illness in counselling

Having open discussions about your chronic illness in a controlled environment can help you combat any issues without you or your loved ones, before the conversations get heated.

Give them a book to read about your chronic illness

The same chronic illness will vary in different patients, but a better holistic understanding your chronic illness, may make your friends or family more willing to listen to you.

Online support groups

Online support groups for friends and family or your chronic illness, will most probably exist on Facebook will a little search. These groups are safe places for your loved ones to ask any questions to support you and your illness.

Online ‘Not Sick enough’ Experiences Donna Burch

“Yeah for some people, it’s a p*ssing contest over who is sicker. I once had someone say I must not be very sick because I decorated my Christmas tree. Ridiculous”.

Rachael Lynch

“As I have become connected with others who struggle with chronic illness, I have sadly started to sense this competition in the community. It can almost turn into a kind of social club where if your illness isn’t severe enough, you do not qualify for acceptance. At times I found the chronic illness community to be slightly toxic and unhelpful.

Reading the posts would cause me to fixate on my symptoms and get caught in the comparison tramp.  These groups do have a lot of positive aspects and are wonderful for certain seasons of the life/illness, but I definitely advise caution. My desire is to encourage others to find their identities outside of illness instead of within it, and to inspire them to still fully live”.

Me

“I have never been personally attacked on social media. However, I have seen people who are not officially diagnosed with a chronic illness and told that they may be suffering from Munchausen syndrome. This is a psychological illness, that involves someone pretending to be sick to draw attention to themselves. I think it is horrible to see others judge people in this way. These people are not medically trained and we all were undiagnosed at some point, looking for some extra support”. 

Ways to deal with strangers who don’t believe your chronic illness

Report them

If someone has been aggressive or rude towards you, you can block them to the social media platform or the administrators of the group. Taking screenshots of the conversation make help and give you back your safe place.

Block them

If the person is harassing you, then blocking them can avoid getting into arguments that can make you feel stressed and trigger your symptoms.

Take a break from social media

If you feel you are having problems with more than one person, taking a break from social media all together can help clear your mind and re-evaluate if you want to keep sharing your story online.

Remain calm and carry on

At the end of the day, you know your symptoms and how your chronic illness affects you – so try to not worry about strangers opinions! If you are being attacked because you are undiagnosed, you can calmly explain you are on your journey to diagnosis and ask to leave the conversation there.

Sharing is Caring

I would love if you shared this post to help people who are experiencing not ‘feeling sick’ enough to show them their not alone and ways to start to overcome it.

Have your Say

Have you or know someone who has ever experienced not feeling ‘sick enough’? If so I would love to hear about it below.

Related Articles 

15 Ways to Support your Chronically Ill Friend in Hospital 

10 Things Not to Say to Someone with a Chronic or Invisible Illness 

How to Support a Spoonie 6 Dos and Don’ts

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You have been feeling sick for a very long time.  Had many routine tests come back clear. Yet, you have been in pain for many months, maybe even years. You are still trying to navigate how to have a “functioning life” and your mental health may be affected as doctors label you a “hypochrondriac“, whilst your friends and family view you as lazy. All of this, has become frustrating as you want to escape your life of chronic pain, no answers and that sleeping beauty title.

Does any of this sound too familiar? 

I want you to know first and foremost you are not alone. For many diagnosed with Ehlers Danlos Syndrome it was not an easy journey.  EDS also shares some similar symptoms to other chronic illnesses, and lays the foundation for all my other illnesses. Many people ask me – how is that possible? Well,  connective tissue is found in the entire body.

I want to make it clear I am not a medical professional.

I am just a real person, living everyday with this chronic disease, who did not give up until I found answers.  Since, being diagnosed with Ehlers Danlos Syndrome Type 3 at 23 years old I have faced some serious infections and anaphylactic shocks from a co-morbid disorder Mast Cell Activation Disorder  (MCAD). Doctors have told me, without my EDS diagnosis I would never of found out I had MCAD and could be dead.

I wrote this post to help others understand where and how to look for an Ehlers Danlos Syndrome diagnosis, so they can manage this incurable illness the best way they can.

1.Get an official diagnosis 

If you think you have EDS, you will need to be seen by a specialist who can diagnose the condition. In the U.K, you will need a referral from your G.P to a rheumatologist. In the United States, you will want to be seen by someone known as a geneticist.  These doctors will look at your medical history and ask you to perform tasks based on the Beighton scale.

NHS, London based consultant rheumatologists

  • Dr Kazkaz – University College London Hospitals, Hypermobility Service
  • Dr Mittal – University College London Hospitals, Hypermobility Servie
  • Dr Hakim – The Wellington Hospital (on a 12 month sabbatical)
  • Proffesor Grahame – Hypermobility Service
  • Dr Hasson  – Hypermobility Service
  • Dr Wolman – University College London Hospital

Your G.P may refer you to a local rheumatologist. However,  not all local rheumatologists will have the experience to diagnose you. In this case,  the local rheumatologist can give you a territory referral to The Hypermobility Service, London or to see a consultant rheumatologist.  If you suspect you have a complicated form of EDS, The Ehlers-Danlos Syndrome National Diagnostic Service, London can see you if you have a referral only from a consultant rheumatologist.

An appointment to be seen for EDS, can take many months to come through. If you want to go privately you may be able to get an appointment in as little as a week. However, you can expect to pay £300 for up to one hours consultation. The appointment will cost £300 regardless on how long you are there and whether you do or not receive an EDS diagnosis. Getting an official diagnosis can help you get more support in work, education and the Government and more support for your pain if you decide to get referred back to the NHS. Crowdfunding on websites like Go Fund Me and Just Giving are a great way to help raise £300 if you want to go privately.

Private London-based rheumatologists
  • Dr Mittal
  • Proffesor Grahame
2.Manage your pain

Keeping a diary will help you to identify your pain triggers and pain points over time. Using specific oils and cream with anti-inflammatory properties such as; mint, lavender, eucalyptus, ginger, tumeric and frankincense, should relieve some chronic inflammation. Ice and heat will also become your new best friend to regulate your body temperature. Buying an electric blanket and a hot water will help reduce pain in flare ups. If you want to find out more tips to relieve pain check out my post 23 Ehlers Danlos Syndrome Life Hacks.

3. Focus on getting stronger

The less you use your joints, the worse the pain will become. Physiotherapists are there to show you exercises to help your body gradually become stronger and to reduce your pain. It is not absolutely necessary that the physiotherapist specialises in Ehlers Danlos Syndrome, but it certainly helps. Stanmore hospital,  runs a 3 week physiotherapy rehabilitation programme that your  rheumatoligst can refer you to. Other exercises you can do outside of hospital which are suitable for people with EDS are; Pilates and Thai Chi.

4. Don’t ignore comorbidities symptoms 

If you are diagnosed with Ehlers Danlos Syndrome – this may not be the end of your story. Many people with EDS, suffer with related conditions. Please, don’t ignore your symptoms,  or it is likely you will remain very ill.

Common EDS comordbities are:

  • Mast Cell Activation Disorder
  • Interstitial Cytistis
  • Endometriosis
  • Postural Tachycardia Syndrome (POTS)
  • Irritable Bowel Syndrome
  • Gastrointestinal Reflux Disease
  • Gastropesis
  • Anxiety
  • Insomnia
  • Gum Disease
  • Craniocervical instability

London-based doctors that have experience of EDS but specialise in other areas are:

  • Proffesor Aziz – Neurogastroentrology – St Barts
  • Proffesor Khullar – Urogynaecology – Imperial College Hospitals
  • Dr Gall – Cardilogy / POTS – Kings College Hospital
5. Keep your mental health in check

Accepting you are going to be in pain for the rest of your life is a big deal. Online support groups or local EDS support groups can help you connect to others with Ehlers Danlos Syndrome.  Some physiotherapy programmes, recognise the importance of your mental health and incorporate sessions focused on it.

 Your mental health is just as important as your physical health. 

Alternatively, you can get a set of free counselling sessions from the charity Mind. Remember there is no shame in needing extra support.

6. Stabilise your joints

Orthotists will tell you not to become reliant on mobility aids because they weaken your joints long-term. Although, if you need them to get around and protect yourself then wear them. You can buy medical supports online but, they can be costly. If you want to save money, you will need a referral from a G.P, rheumatologist or physiotherapist to orthotics who should assess you for insoles or free joint braces. However, again this appointment can take many months to arrive.

7. Listen to your gut

Many people with EDS have gut problems, because their stomachs are so stretchy.  This can cause both spells of constipation and diarrhoea. Stool softeners and laxatives can help get your bowels moving, but you should try not to become reliant on them. If you feel nauseous and get hives when you eat and drink, there might be something more sinister going on. Whilst, seeking the advice of a doctor you might need to go for allergy testing at an immunology clinic and/or see a gastroenterologist. Dependent on your results, a doctor may suggest you cut certain foods out your diet, to live more comfortably.

Things to consider with caution… 1. Self-medicating

Self-medicating with strong painkillers that are opioid based or Benzodiazepines (muscle relaxants) will help temporary reduce your pain but should only take when prescribed. Over time you will build up a high tolerance to these drugs which increases dependency and can lead to addiction. Medical cannabis is a popular choice for EDS, but is not currently legal in the U.K. However, even medical cannabis can have side effects on your mental health.

2. Yoga

Yoga has many health benefits including; weight loss, breathing better, and reducing stress.  EDS is not the same in every person, so for some they may be able to do Yoga and for others they may not. If you are extremely hypermobile – like me, then you may want to think twice about Yoga. This is because hyper extending your ligaments and joints can increase sublaxations and dislocations.

3. Support Networks 

Support groups are great to relieve stress and talk to people who understand what you are going through to an extent. There are many Ehlers Danlos Support groups on Facebook, however please bear in mind many of these groups contain people who are and are not diagnosed with EDS. Therefore, you shouldn’t take someone who thinks you may EDS as a definitive diagnosis. Every person even with the same type of EDS symptoms are life will vary.  If you are looking for meet-up support groups based in the U.K you can find them here. 

Relevant Posts

16 Things A Doctor Won’t Tell You When You are First Diagnosed With EDS

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

Misfortunate: A Poem about Ehlers Danlos Syndrome

23 Ehlers Danlos Syndrome Life Hacks 

My Invisible Illness ft Tramadol

Relevant Guest Posts 

Through the Nutritionists’ Eyes

Hypermobilty Ehlers Danlos Syndrome and Me – Ansley 

Sharing is Caring 

I would love if you shared this post to help undiagnosed people who suspect EDS reach a diagnosis.

Have your Say 

Do you suspect EDS or have been officially diagnosed?  If so – I would love to hear your experience below. 

Go Fund Me

If you are interested in donating towards my EDS mobility aid fund in exchange for an adjustable chronic illness awareness bracelet / anklet please contact me on Instagram for more information.

Go Fund Me Click to view slideshow.

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Hello everyone,

Some of you may or may not know that I am suffering from an incurable connective tissue disorder called Ehlers Danlos Syndrome. EDS causes chronic fatigue, widespread chronic joint and muscle pain, subluxations and dislocations. As connective tissue is in the entire body, I suffer with many stomach, bladder complications and other comorbidities. However, today I am writing this post because Ehlers Danlos Syndrome has progressed.

Pin It!

I have a score of 8/9 on the Beighton Scale and have been listed in the category of high risk of fractures. Last year, I broke both my ankles and now I wear ankle braces. However,  I still can’t walk very far without days on end resting in bed. I am meant to enrol on the 3 week Stanmore Physical Rehabilitation Programme, trying to ensure I am strong enough to complete it and visit the London Hypermobilty Clinic.

I missed a lot of my work placement from being in hospital and now I am too sick to work. I am now kindly asking for donations to prevent me going into a wheelchair and double ankle fusion surgery. I require a pair of SMART crutches (£140) and Push Care knee braces (£140). I also would benefit from a neck brace, wrist braces and finger splints but these are not as urgent.

Go Fund Me 

I would also like to thank anyone who supported me with my EDS art fundraiser. Progress is slow because I have been in an out of hospital but I am still creating art and donating 50% profit to Ehlers Danlos Support U.K. So far I have raised £72 for this charity, and buy my art materials on Amazon Smile to ensure Amazon donates a bit more to the charity.  

I will continue to donate 50% profit from any future art I sell, and hope to use the other 50% profit towards my mobility aid fund. If you would like a custom piece or an EDS/ invisible illness awareness bracelet, please contact through morganisabellashaw14@outlook.com or through Etsy. Below, I have created a few slideshows to show you my creations to date (although, not all these items are currently listed on Etsy)

Thank you for taking the time to read my story. I am very passionate about raising awareness of EDS and you can find related blog posts here 

Morgan xx

Sharing is Caring

I would appreciate if you shared my story to help me raise funds for mobility aids.

Have your Say

Do you use mobility aids for a chronic illness? – If so I would love to hear about them below. 

My Art Click to view slideshow.

Invisible Illness Awareness Jewellery 

Click to view slideshow.

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Hello everyone, today we hear about Ella’s story, suffering with Psoriatic Arthritis, Irritable Bowel Disease and Fibromyalgia.  Ella is an 18 years old student and chronic illness blogger. 

1. Please summarise the nature of your conditions Psoriatic arthritis

Psoriatic arthritis can develop in some people with psoriasis. However, it psoriatic arthritis affects primarily my joints. I have minor bone loss in my ankles and wrists/hands from chronic swelling, and my pain fluctuates based on activity, pressure changes, and other factors. It sometimes affects my skin, although my psoriasis is pretty mild.

Inflammatory bowel disease (IBD)

IBD is chronic inflammation of the digestive tract. My inflammatory bowel disease primarily causes pain, although it can be an embarrassing condition to deal with as a teenager.

Fibromyalgia 

Fibromyalgia, causes widespread chronic pain, due to this fibromyalgia affects my daily activities the most. I have to be careful about how much I do each day to avoid crashes and pain.

2. When was you diagnosed with your chronic illnesses? 

I was diagnosed with junior rheumatoid arthritis when I was four, but it was re-diagnosed as psoriatic arthritis when I was about thirteen. I was diagnosed with inflammatory bowel disease at the age of thirteen, and was recently diagnosed with fibromyalgia at the age of eighteen.

3. What are the main symptoms you suffer from? 
  • Joint pain
  • Muscle pain
  • Fatigue
  • Brain fog
  • Abdominal pain
  • Chest pain
4. How do you manage your conditions on a day-to-day basis? 
  • Limiting my activity level
  • My heat pad
  • Medications
5. In what way has medical health care supported you?

I have been on countless expensive medications, including a monthly IV infusion, and now, a twice-monthly injection.Without health care these medications would have cost thousands of dollars, but my family only pays five dollars per dose because of our health insurance.

“Without medical health care, I don’t know where I would be”. 6. How was your journey to diagnosis to Psoriatic arthritis, Irritable Bowel Disease and Fibromyalgia?  Psoriatic arthritis 

I don’t remember my first misdiagnosis, because I was only four. My parents say that I would refuse to walk when I was first experiencing arthritis symptoms. When I was re-diagnosed with psoriatic arthritis, my rheumatologist took one look at my fingernail pits and made the decision right there.

Inflammatory Bowel Disease 

My inflammatory bowel disease diagnosis was really rough, and it’s still not conclusive. I’ve had three colonoscopy/endoscopies, but my doctor was never able to tell if I had Crohn’s disease or ulcerative colitis. He had mentioned when I was first diagnosed that I had some unknown allergens, but never elaborated very much.

I recently got access to all of my medical records through a new online patient portal, and the diagnoses listed in my records are as follows: intermediate colitis, eosinophilic gastritis, and eosinophilic colitis. Those last two diagnoses may be tentative, but they were never discussed with me. After reading up on them, I learned that they are often related to food allergies and are pretty rare.

Fibromyalgia 

My fibromyalgia diagnosis was pretty unremarkable, which is pretty lucky. I have a pretty great rheumatologist, so it wasn’t too painful of a process.

7. What have your learnt about your conditions since being diagnosed?

Arthritis can cause bone loss and damage and symptoms unrelated to the joints, like fatigue. Inflammatory bowel disease includes Crohn’s disease and ulcerative colitis. Whilst,  Fibromyalgia shares a ton of symptoms with hashimoto’s hypothyroidism, and I discovered it occurs in a lot of people with autoimmune diseases.

8. How has your chronic illnesses changed your life? 

Arthritis is something I’ve lived my entire life with, but my other illnesses have changed the way I live. I have to be really careful about my diet to keep my abdominal pain at a minimum. This means no dairy, minimum sugar, and minimum processed food. My Fibromyalgia has had the biggest effect on my life. I can’t do everything I used to, or I’ll crash and feel awful. The fatigue and pain has limited my activity on a daily basis.

9. What perceptions changed since you’ve been diagnosed with your chronic illnesses? 

I think that my view about everyday life has changed a lot. I’ve had to slow down a lot, and I don’t know if I’ll ever be able to live a “normal” life according to society. I can’t hustle the same way a healthy person can.

10. What information do you wish you was given when you was initially diagnosed with your chronic illnesses? 

Most of all, I wish my gastroenterologist would have told me about the eosinophilic colitis and gastritis. I don’t understand why he would put those in my medical records without telling me or my parents.

11. Have you gained any new hobbies since being diagnosed with chronic illnesses? 

I love ukulele, but I can’t play for long periods of times because it hurts my fingers. I have picked up cross stitching, and I enjoy drawing as well. Blogging is something I’ve picked up to do in my free time, because I enjoy writing.

12. What emotional support do you have for your chronic illnesses?

My parents have been my biggest support system, along with my brother. My brother always stood up for me when he knew I was in pain and I was too afraid to say “no“. My parents always believe me, and they always make sure I’m getting the support I need to get my education and proper healthcare.

13. What do you find are the most challenging parts about your chronic illnesses?

I think the most challenging part for me is not being able to do everything I want to do. I can’t go out for hours at a time and walk around or be on my feet. It’s difficult to keep friends when you can’t go out with them.

“I used to be a competitive alpine ski racer, and it was something I thought I would be doing forever”.

I had to quit skiing because of my health, and it’s something I will probably always miss. Losing things to my health sucks, and it’s something I’ve struggled with a lot.

14. What advice would you give to someone newly diagnosed with a chronic illness? 

I would say that the most important thing for someone diagnosed with any chronic illness is to self advocate. I have anxiety, and it’s something that is really difficult for me, but it is so important. Know that you are your best advocate and know that no one will ever understand your body the way that you do.

15. What are your plans for the next year?

Next year, I am going to be a first-year college student across the country from my home. I don’t know if I’ll be able to work on top of my school. However, I’m going to continue blogging and writing, but my main focus will be on school.

Sharing is Caring 

To help raise awareness of Arthritis, Irritable Bowel Disease and  Fibromyalgia, we would love if you shared Ella’s story.

Become a Contributor

I am passionate about raising awareness’s of chronic and mental illnesses. If you want to become a part of the Confessions of a Zebra series, please make a submission using the form below.

https://goo.gl/forms/xDIWQHALXJ9ZLeHs2

Like what you see?

If you liked this post, you can read more about  Ella’s life with chronic illnesses on Studious Spoonie.

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Related Series Posts 

Confessions of a Zebra #1 Fibromyalgia and Me – Bethan

Confessions of a Zebra #2 Seizure Disorder and Me – Ruth

Confessions of a Zebra #3 Borderline Personality Disorder and Me – Katie 

Confessions of a Zebra #4 Hypermobility Ehlers Danlos Syndrome and Me – Ansley

Other Related Posts 

4 Common Types of Arthritis and Ways to Manage Arthritis Pain

The Things Wikipedia can’t Tell you about Living a Day with Irritable Bowel Syndrome

The Devil Disorder in Disguide: An Original Poem about Irritable Bowel Syndrome

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Unplanned and even planned hospital stays for surgery, can be a scary time for anyone. Some, just assume those with a chronic illness, are well accustomed to hospital stays.  It is true, they may visit the hospital more than the average person,  but being comfortable there – is usually quite the opposite. In your friends brain, and struggling body they may be panicking that they are so ill, whether this hospital visit will be their last.    

I know, that feeling all to well. 

Recently, a severe kidney infection meant I had to spend  a week in hospital, until I was stable enough to go onto oral antibiotics. The inpatient stay has inspired me to share 15 ways you can support your chronically ill friend in hospital. Although, I hope many of these tips can be applied to support anyone, that is in hospital.

1.Ask before visiting

It is important to ask before visiting the hospital because some wards have strict set visiting hours. It may be possible to visit your friends out of these hours in a day room, dependant on their mobility.  If your friend is in an Accident & Emergency assessment unit, visiting hours are anytime. However, it is still worth checking as your friend, may not be fit enough to entertain a visitor.

2. Ask if they need anything from home 

If your chronically ill friends hospital stay is unplanned, they may be missing items they value from home. Hospitals tend to have towels, toothpaste, toothbrushes and slippers but your friend still may want entertainment like books, mobile phone / tablet,  clean clothes, a dressing gown, orthopaedic pillow and comfort food.

3. Bring them a card or gift 

You can put a huge smile on your friends face, by getting them a small gift or card to show you are thinking of them.  When you think of hospital gifts fresh fruit and flowers, may instantly come to mind. However, be careful as many wards do not allow flowers in patient or clinical areas, due to infection control.

Fruit is typically allowed, but think twice about buying huge hampers because;

A)  Your friend may not be able to eat it

B) Hampers take up precious table space

C) Other visitors may eat the fruit,  which makes the staff think your friend is eating more – than they actually are

Other hospital gift ideas that don’t break the bank are: a pair of earplugs, to block out the noise,  a face mask to relax, magazines to pass the time and fluffy socks to keep their feet well insulated.

4. Offer to take them from a walk

Offering to take your friend for a walk around or outside the hospital can mean the world to them. A walk can help the patient sleep, get their bowels moving and a nice break from staring at the same four walls in the ward. Due to safety reasons, patients are not easily allowed to go for a walk, unless accompanied by a nurse. In theory, this works fine but nurses all normally very busy and may not have time in their schedule to do this.

5. Give them a call or text

Being on a ward, for days or ends can become extremely lonely.  Your chronically ill friend may be around other patients but these people are also very poorly, and will not be able to make conversation all the time.  By giving your friend a call or a text, they will know you are there and care about them. Especially, if you can’t take time out to go and visit them.  If your friend is not fit enough to check-in with, then you should respect the family’s wishes to let them update you on their progress.

6. Respect your friends privacy

If your friend or their family hasn’t put anything on social media, why they are in hospital – then simply you shouldn’t.

7.Avoid giving medical advice 

If you are not medically trained, avoid giving medical advice on the reasons why your chronically ill friend has landed up in hospital.  The reasons for this are,  you might panic them and they just want a short-term distractions.

8. Let them talk as much as they can

Being bed bound nearly 24.7 can be very isolating.  By letting your friend talk as much as they can you can try to address any of their worries, and try to cheer them up.

9. Ask if they need anything, when they leave hospital

Unfortunately, when many people leave hospital they are not magically better. It could be a long time until your chronically ill friend returns back to work, or a school run as recovery can be a long progress. By asking them if there is anything they need when they leave hospital, you can help them plan for the recovery process.

10. Try not to get too emotional 

I know this one can be extremely difficult and is dependant on the situation. However, if you show a lot of emotion and visibly become upset why your friend is in hospital, this could stress them out more.

11.  Be respectful of surrounding patients

Many patients do not get the benefit of their own room.  Other people will respect you if you try not to be too noisy. If your friend is in a bay as other patients may have visitors, resting or trying to sleep. If you and your friend want more privacy, you sit in the day room, or pull the curtains surrounding their bed.

12. Be polite to the medical staff

It can be a very stressful time seeing your friend in pain, and wanting to know updates on their progress. Doctors and nurses have many patients to see and might not always be around but try to have patience and be polite to them when they do. After all they are working hard to get your chronically ill friend back in the comfort of their own home.

13. Ask if they want you to help with self-care

Although, nurses have seen it all and are use to helping patients with self-care it can be very intrusive. If you and your friend are close, asking if they need help washing, getting dressed or undressed,  sitting up, or hair brushed can help boost their mood.

14.  Start an online fundraiser 

If your chronically ill friend needs life saving surgery that is not covered for by medical health care, starting an online fundraiser could save their life. It may be wise, to keep this a secret from your friend to begin with, if you don’t know how much you will raise – to avoid getting their hopes up.

15. Don’t stay too long visiting 

What is considered too long, will vary from patient to patient. However, by asking or gauging how tired your friend is will help determine how long you should stay at the hospital. If your friend is in the early stages of recovery, 15-20 minutes is typically long enough.  If another family or friend shows up, this may also be a good time to leave – but remember you can come back.

Sharing is Caring 

I would love if you shared this post on hospital etiquette, to help people support their friend in hospital.

Have your Say

Which of these hospital tips did you find the most useful?

Can you think of anymore I have missed?

If so – I would love to hear your comments below. 

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External Further Resources

How to Really Help a Sick Friend 

What to Say When you Visit Someone in Hospital 

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Hello everyone,

One of my conditions I write about a lot on my blog, is Ehlers Danlos Syndrome (EDS). I always find it interesting to hear other peoples perspectives who live with the same condition. So, today I am sharing Ansley’s experience of living with hypermoblity EDS.

1.What is Hypermobility Ehlers Danlos Syndrome?

Hypermobility Ehlers Danlos Syndrome, is also known as Ehlers Danlos Type 3, and is a connective tissue disorder.  Due to the faulty collagen, the collagen does not keep the bones in place, which causes frequent sublaxations, dislocations and means someone with it, is in pain and more at risk to fractures.

No two patients with hypermobility EDS are the same.

Some, can live relatively normal lives with mild symptoms, whilst other suffers may be in a wheelchair full time with feeding tubes. EDS can attack different parts of the anatomy, such as the bladder and stomach. Many patients also live with co-commodities such as Mast Cell Activation Disorder and Postural Tachycardia Syndrome.

2.What are the main symptoms you suffer from? 
  • Chronic joint pain
  • Chronic fatigue
  • Sublaxations
  • Comorbidity symptoms
3. How do you manage Ehlers Danlos Syndrome on a day-today-basis? 
  • Medication
  • Tiger balm
  • KT tape
4. How was your journey to diagnosis for Ehlers Danlos Syndrome? 

Thankfully, my journey to diagnosis wasn’t aslong as most people. From start to official diagnosis was not even 2 years. My rheumatologist knew during my first appointment, during the first 15 minutes. She referred me to a geneticist, who saw me 6 months later and confirmed her suspicions.

5.What have you learnt about EDS since being diagnosed? 

I have learnt that soft skin isn’t normal and that my body movements probably aren’t normal. My life is the exception to almost every medical rule. A lot of people have it a lot worse, especially when they don’t have the awesome doctors I have. I am grateful, my family is amazing!

6.  How has Ehlers Danlos Syndrome changed your life?

Ehlers Danlos Syndrome has made me more perceptive into others people’s lives. I’ve been on the “healthy” side looking in to a life of chronic illness, but now my perspective is flipped and I can relate to more people. But also, it sucks being sick and knowing there is no cure.

7. What perceptions changed since you were diagnosed with EDS? 

I’m more understanding that not all illnesses are visible and to act accordingly.

8. What information do you wish you were given when you was diagnosed with EDS? 

I’m not even sure, to be honest. I was relieved to have an answer for my pain and all my doctors have been sympathetic toward the diagnosis.

9.Have you gained any new hobbies since being diagnosed with EDS? 

Not new hobbies but I still paint, draw, color, and I’m teaching myself to sew.

10. What emotional support do you have for Ehlers Danlos Syndrome?

My mom is my rock but my whole family is my support system.

11. What do you find are the most challenging parts about EDS?

Normalizing my life, as I am currently unemployed. There are certain things I can’t do, like I can’t do laundry AND go to the store AND clean the kitchen after I cook. I have to pick and choose because my energy is limited. I don’t always know how much energy I have either so overdoing it is easy and then I can’t do anything the next few days.

12.  What advice would you give to someone newly diagnosed with EDS? It’s okay to say and act like you are not okay.

It’s okay to be depressed when you get diagnosed and it’s okay if it comes and goes.

13.  What are your plans for the next year? 

Maybe find a job. I’m waiting on God to instil some direction.

Sharing is Caring

To help raise awareness of Hypermobility Ehlers Danlos Syndrome, we would love if you shared Ansley’s story.

Share your Story

I am passionate about raising awareness’s of chronic and mental illnesses. If you want to become a part of the Confessions of a Zebra series, please make a submission using the form below.

https://goo.gl/forms/xDIWQHALXJ9ZLeHs2

Related Ehlers Danlos Syndrome Posts 

My Invisible Illness ft Tramadol

16 Things A Doctor Won’t Tell You When You are First Diagnosed With EDS

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

Misfortunate: A Poem about Ehlers Danlos Syndrome

Through the Nutritionists’ Eyes (Guest Post)

Related Series Posts 

Confessions of a Zebra #1 Fibromyalgia and Me – Bethan

Confessions of a Zebra #2 Seizure Disorder and Me – Ruth

Confessions of a Zebra #3 Borderline Personality Disorder and Me – Katie 

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Hello everyone,

I have collated the top 10 most frustrating things I hear about my chronic illnesses. This post, to inform you of the types of things that may offend someone with a chronic illness and my responses to what has been said to me. Although, I have many illnesses the main physical ones are: Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Interstitial Cystitis, Oral Food Allergy Syndrome, Irritable Bowel Syndrome, Chronic Bilateral Ankle Instability and Gastrointestinal Reflux disease.

1. “It has it benefits, you look really young”.

I think I would be healthy and look my age than appear younger. Ehlers Danlos Syndrome makes me look younger due to the faulty collagen, that makes my skin stretchy.

2. “You don’t look sick, just tired”.

Secondary effects of Ehlers Danlos Syndrome and Mast Cell Activation Disorder are: postural hypotension , chronic fatigue and insomnia. Having any chronic illness is super draining mentally and physically.

3. “You can’t be that sick , if you can go out on the weekend – surely?

It is never nice when people question your health. What people don’t see, is that I spend every weekday evening in pain in bed and Sundays sleeping. Due to a weak immune system, I get infections more frequently. When I struggle this infections I can spend 3-5 days off work sick at a time and I attend hospitals and doctor appointments each week. If the infections are out of control then I also need to stay in hospital. So, I really just go out once a week, and it’s usually a Saturday.

4. “Why do you wear mobility braces for attention? Your (name of bone) isn’t broken now”.

Although, my ankles aren’t broken now I have high ankle inversions. This means my ankles swing in and out on the joints when I walk, posing a high risk of fractures. I have broken both ankles multiple times making them weak.

Last year, I also tore all the ligaments in my right foot and damaged ones in my left – which never repaired themselves. I’ve had physio for years , but struggling with proximal muscle deterioration means it’s a slow process for my ankles to recover.

I am due to see orthotics again soon for another ankle braces assessment. Double ankle fusion surgery has been put on hold, because it has low success rates and I may be going on a 3 week inpatient programme.

So, I don’t wear mobility braces for attention. I wear them most the time because my ankles are dependent on them and because I don’t want to cause further damage.

5.”You are too young to be sick”. 

Illness cant strike you at any age from the womb, midlife crisis or in your 90’s.  What some people don’t realise is I won’t be better soon because my illnesses are chronic. Some days will be better than others, but two of my conditions Ehlers Danlos Syndrome and Interstitial Cystitis are incurable.

6. “I was just wondering because you have so many illnesses… are you the result of incest?”

Yep, this really has been asked more than once before. There is no evidence any of my illnesses are related to incest, not to mention I am not. After I was diagnosed with Ehlers Danlos Syndrome (which can’t skip a generation) both my parents were seen by rheumatologists. However, doctors determined they do not have Ehlers Danlos Syndrome and that my genes mutated.

7. “At least you don’t have cancer”.

I know like most, there are people worse off than me. However, Doctor Russel Johnston actually believes the pain from Ehlers Danlos Syndrome is worse than he has seen in Cancer patients. It makes me sad that some people think chronic illness is a competition. It is true my illnesses are not cancer – which is an awful disease. However, my conditions do still severely affect my abilities and quality of life.

8. “I think you are ill because you have a bad diet”.

I have heard this one, too many times. I have put on weight because of the medication I take now, not because of a bad diet. I do drink fizzy drinks and eat crisps but I also eat minimal gluten and on a lactose, seafood and nut free diet. My diet is also low histamine diet causing further restrictions, so I eat many fruit and vegetables daily.

You can’t know if someone has a healthy diet but just looking at their weight in isolation. Even when I was much thinner, I was probably more unhealthy because my body couldn’t absorb any vitamins of nutrients.

9. “I believe you are poorly, just not to the severity you make out”.

I was “best friends” with someone for a long time who thought this up until I cut off the friendship last year. She has tried to justify her belief by telling everyone else her opinion was correct. I am glad I am not friends with this person anymore, because  I am not sure how someone who doesn’t have your condition(s) can know the severity you suffer. Especially, when they have never attend hospitals appoints with you.

10. “I think you overshare your health issues”.

This was actually said to me by someone else with a chronic illness.  I view it as I am very open and honest on my blog and on social media now about my health.  Although, I am not a doctor, like many I try to use it as a platform to share my stories, other peoples stories and educate people. If anyone thinks I overshare information, they have the choice not to follow me or social media or read my blog posts.

Have your Say

If there are frustrating things you have heard about your chronic illness – I would love to hear them below. 

Sharing is Caring

I would love if you shared this post to raise awareness of invisible illnesses.

Related Posts

How to Support a Spoonie : 6 Dos and Dont’s 

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

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Hello everyone,

Today, I am publishing a guest post from a health writer, Rozy Andrews.  This post will identify key different types of Arthritis, and natural ways to manage Arthritis pain and stiffness.

Are you struggling with joint pain and stiffness?

Have you been experiencing these symptoms for more than a couple of months? 

If you tried different types of medicines but can’t see any permanent reduction in your pain, then you might be struggling with Arthritis and joint inflammation.

Arthritis is an umbrella term that stands for over 100 different types of joint diseases and the most common among which are osteoarthritis, rheumatoid arthritis, psoriatic arthritis, gout, and lupus.

4 Common Types of Arthritis 1.Osteoarthritis  

Osteoarthritis is a chronic joint disease that occurs with age. It is also known as wear and tear arthritis, and generally occurs due to excessive use of joints.

A WHO report states that “According to the United Nations, by 2050 people aged over 60will account for more than 20% of the world’s population. 6 Of that 20%, a conservative estimate of 15% will have symptomatic OA, and one-third of these people will be severely disabled.”

Osteoarthritis occurs due to factors like being overweight, injury and repetitive use of joints, bone and joint disorders, and metabolic disorders. Apart from that, a variety of genetic traits can also increase the risk of osteoarthritis.

According to the Arthritis Foundation, Researchers have found that a gene called FAAH, previously linked to increased pain sensitivity, is higher in people with knee OA than in “People who don’t have the disease.”

Osteoarthritis mostly affects joints such as hips, knees, spine, ankle because they bear the weight of your body, and hence, receive maximum damage. Patients with this condition lose their cartilage – a joint tissue that absorbs shock. It protects the ends of bones in a joint.

2.Rheumatoid Arthritis

Characterized by symptoms like joint pain, stiffness, and swelling, rheumatoid arthritis is an autoimmune disease that affects the same joints on both sides of your body; for example, if your left knee has inflammation, your right knee will also have it.

People experience this condition when their immune system mistakenly attacks their joints. So, if you are experiencing mild to severe pain and swelling in your ankle, jaw, elbow, knees, and wrists, etc., then you might be struggling with rheumatoid arthritis.

3.Psoriatic Arthritis

Characterized by symptoms such as swollen fingers and toes, psoriatic arthritis is another common form of arthritis. It affects a wide range of people across the world. Common among both males and females, people with this condition also experience inflammation of the skin, known as psoriasis.

This skin problem creates red and white patches on the skin. You can see these patches on your knees, scalp, and lower back, etc. It’s not a disease that spreads by touching, so if anyone in your family has it, you can take care of them without any hesitation.

4.Gout

If you are experiencing severe pain in your big toe, you might be struggling with a condition called gout. It occurs due to the accumulation of uric acid crystals in your joint. It’s a bit different from other forms of arthritis because people with it get a gout attack that lasts anywhere between 3 to 10 days. The frequency of gout attacks will start increasing with time.

Experts believe that you can’t reverse arthritis, so the treatments that you take only help in managing the signs and symptoms of your conditions.  Therefore, it’s better to address them in a drug-free manner.

Natural Ways for Managing Arthritis Pain 1.Focus on Losing Weight

Is your body too heavy?

Do you find it hard to get up from the floor?

Do you experience more pain when you climb the stairs up and down?

Do you get tried while performing physical activities?

If so, you should focus on reducing your weight.

People who are overweight, tend to find it more challenging to manage their arthritis pain when compared to people with a healthy weight. If you want to work toward living a pain-free life, try to shed those extra pounds. Being overweight puts more stress on your hip, knee, and ankle joints. If they are already inflamed, you will naturally experience more pain when you put additional stress on them. Therefore, it’s essential for you to work furiously to reduce your weight.

2.Consult a Physical Therapist

Since you are struggling with chronic disease, it’s better to take the help of well-trained healthcare professionals like a physical therapist. Your physical therapist will design a personalized care plan to address the signs and symptoms of arthritis. They will use a highly effective approach to manage your pain and improve flexibility.

People with arthritis not only struggle with pain and discomfort but experience reduced flexibility too.

According to Function 1st Physical Therapy, ” Physical therapy can help you achieve more pain-free flexibility and mobility, on a lasting basis,” so you should go for it without, any hesitation.

3.Consume Healthy Food

You can manage your arthritis symptoms to an extent, by avoiding foods that cause inflammation such as soda, refined carbohydrates, red meat, and processed foods. Apart from that, you should focus on consuming anti-inflammatory foods such as green leafy veggies, fruits like oranges, strawberries, and cherries; and healthy nuts like almonds.

4.Light Exercise 

Going for regular walks, and performing low-intensity exercises at home can help your overall health.

Have your Say

Can you think of any other common types of Arthritis?

Or know any other hot tips to help manage Arthritis pain and stiffness?

If so – why not leave a comment below? 

Sharing is Caring 

Rozy and I would love if you shared this post to increase awareness of Arthritis Pain and treatment.

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Hello everyone,

For those of you that don’t know –

May is mental health awareness month.

To raise awareness of one of my mental illnesses, Borderline Personality Disorder (BPD) I started my own challenge on Instagram. Unfortunately, I fell super ill with widsom teeth infection and didn’t manage to keep up posting once a day. However, I wanted to accumulate all my questions and answers to help fight the stigma agaisn’t Borderline Personality Disorder. I have put the questions at the end of the post, if anyone wants to participate next year.

31 Days of Mental Illness: Borderline Personality Disorder Awareness Challenge

Day 1: What is Borderline Personality Disorder?

Borderline Personality Disorder is a long-term mental illness that affects a persons ability to regulate their emotions. It is also known as emotionally unstable personality disorder (EUPD). There are debates among experts, that different sub types of Borderline Personality Disorder exist.  However, commonality symptoms include: intense mood swings which can occur throughout a day, unstable friendships and relationships, explosive anger, impulsiveness, suicidal thoughts, lost of identity, only seeing good or bad in a situation known as splitting, self-harming and anxiety.

Day 2: What are the key differences between Borderline Personality Disorder and Bipolar Disorder?

Bipolar disorder is a mood disorder caused by a chemical brain imbalance that can have extreme lows and highs lasting from days to months. The manic phases are separate to someone with Bipolar, day-to-day personality. BPD is typically caused by trauma and is a personality disorder.

Borderline Personality Disorder is a part of a persons base personality and is characterized by unstable relationships and their moods can change many times during one day. Someone with BPD or Bipolar Disorder can experience intense mood swings and mania, but the length of these phases are very different. The main reasons for this is someone with BPD is triggered by social factors as opposed to the brains neurotransmitters seen in Bipolar Disorder. That is why, the treatment plans are very different for BPD and Bipolar Disorder.

Day 3: How long have you been diagnosed with Borderline Personality Disorder?

I showed traits of clinical depression and anxiety as a child attending CAMHS. I tried cognitive behaviour therapy (CBT) and Complex Needs, with little success. My record reveals I started showing BPD traits since 2011 (18 years old) when I went manic. However, it wasn’t formerly diagnosed until last June – after a manic episode in May.

Day 4: What mental illnesses are related to Borderline Personality Disorder? 

The most frequent mental illnesses associated with Borderline Personality Disorder are: eating disorders, post traumatic stress disorder (PTSD), anxiety and depression. Around 10% of people with BPD will also have Bipolar Disorder. I do not have an eating disorder but I have Gastrointestinal reflux disease (GERD), which is commonly associated with people with eating disorders. As stated in the previously, I also have anxiety and clinical depression. 

Day 5: What is splitting and how does it affect you?

Splitting is a symptom of BPD and is known as all or nothing / black and white thinking. People split as a defense mechanism to avoid being hurt or rejected from a situation or someone. Splitting can be self-destructive by either viewing someone as all good or bad, not allowing someone with BPD to seize opportunities or have a relationship easily. Although, someone with BPD knows splitting is not reality, their brain can’t process emotions. Key triggers of splitting are friendships and relationships, events, and substance abuse.

Day 6: Do you take any medication for Borderline Personality Disorder?

Last May, I was prescribed Sertaline (anti-depressant) and Quetiapine (anti psychotic) to act as a mood stabiliser, to reduce my anger and to help me sleep. Prior to this, I had tried being on Fluxotine another anti-depressant. Quetiapine made me gain weight dramatically and extremely tired. I went cold turkey about 2 months ago. You are not meant to drink alcohol with quetiapine, but I did when I went out with my friends.

Since coming off the medication my sleep has got worse and I still struggle controlling my moods. So, I will probably go back on a lower dosage in future.  Other medications I’ve heard people with BPD try are: Topamax and Lamitical. These are mood stabilisers to treat bipolar disorder but have been proven in lower dosages to help the symptoms of BPD.

Day 7: What are your main Borderline Personality Disorder triggers?

BPD triggers can vary for different people but my triggers are:

  • Places I have visited with ex friends / boyfriends
  • Bumping into ex friends and boyfriends, and people I don’t like.
  • Lack of sleep
  • Chronic fatigue and flare ups
  • Running out of medication
  • Hostile, negative people and lying
  • Eating, changes my blood pressure
  • My appearance
  • Panic attacks
  • Excessive alcohol
  • Lack of self-confidence in my abilities
  • Making new friends and dating
  • Sad news events and TV programmes
  • Shopping

Day 8: How does unstable relationships affect you?

I  have a very hard time trusting people, and people with BPD are known to very intuitive. Although, I can see when a friendship or relationship is on the path of going wrong / toxic it still hurts me a lot when it does, but only if I care about the person.

Due to have a strong fear of abandonment if someone doesn’t reply to me for a while I automatically think someone hates me. Romantic relationships also tend to go wrong when I start to really care about someone.  I find it easier than other people, to completely cut people off to avoid being abandoned by them, even if they haven’t necessarily done anything wrong.

Day 9: Have you ever suffered from substance abuse?

People with BPD frequently struggle with substance abuse, due to having a loss of identity . A side effect of EDS , is I don’t break drugs down properly. This is dangerous because it means, I need more medication to get better and would need more drugs to get high. In the past, I have drunk excessive alcohol, smoked cannabis, taking ecstasy and cocaine.I also was taking a lot of Tramadol, at one point in my life. However, I realised drugs don’t solve my problems because when they wear off the physical joint pain heightens. My only addictions now are caffeine and nicotine – mainly to keep me awake.

Day 10: Have you ever been hospitalised due to BPD?

I have been in two mental health wards. One was very briefly in 2011, and the last one was last year, where I officially got diagnosed with Borderline Personality Disorder. I wrote about my stay last year at the Whiteleaf Centre and the first few months of my recovery on my blog.

These posts are:

Inside a Psychiatric Ward 

Outside the Psychiatric Ward 

I also wrote a poem when I was a inpatient , but I haven’t published this yet.

Day 11: What emotional support do you have for BPD?

NHS

I have a good and bad experience of mental health. Inpatient wise the support was good, and I had a health coordinator when I left last year. I saw a psychologist and psychiatrist, a few times and was prescribed anti depressants and anti psychotics. Treatment wise I have been rejected from DBT because I can’t form long term relationships with people …even therapists. When I use to go to therapy I felt like I was giving the therapy. I have been offered complex needs again but this isn’t for me. The reason is because people that go to this therapy have very different problems to mine.

Employment

My industrial work placement has been very supportive in terms of any medical appointments I have needed to attend , and boy has there been a lot of them. I am so fortunate to work for a business so understanding to be honest.

Friends and Family 

There are people who check in and know I have highs and lows but who doesn’t ? Sometimes the honesty comes out and sometimes I hold it back. Since, being in the mental health ward last year my family has been there for me more and has more patience with my mood swings. It is better now I don’t live there full time.

University 

My Uni is more understanding of my physical illnesses than my mental health ones. I have had extensions before but like any other student , submitting evidence. Accommodation is a bit more complex and I don’t know if I will get the support I need for my final year.

Day 12: What distractions help your Borderline Personality Disorder?

I have a few things that distract me when I have motivation and physically stronger. These are:

  • Watching TV
  • Reading
  • Writing blog posts and poetry
  • Making arts and crafts
  • Talking to friends
  • Having bubble baths
  • Listening to music
  • Sleeping
  • Nights out

Day 13: What is a ‘normal day’ like for you?

There isn’t really a normal day living with Borderline Personality Disorder. I can get ready to go out and then decide to stay in. You have to follow your moods, but I find it more difficult because my physical illnesses can make my BPD worse and harder to have the energy to see people and do things.

Day 14: What type of  doctors have you seen for your BPD and how have they treated you?

I’ve seen a combination of psychiatrists and psychologists for BPD. The good doctors I have seen are Dr Alex Langford who diagnosed me as an inpatient. Dr Bantic, a psychiatrist that prescribed me with anti-depresants and anti-psychotics and Dr Chis Newth who co-ordinates mental health therapy. I also had a community nurse practitioner who visited my house when I left the mental health ward.

In terms of support, it has been up and down to be honest.  A psycho dynamic assessor told me to try Complex Needs again instead of Dialectal Behaviour Therapy (DBT) once I was referred on from Chris Newth. I am meant to see him again to discuss future options. I am not keen to do Complex Needs again. However, as my Ehlers Danlos Syndrome impacts on my BPD, I saw a psychologist at Stanmore hospital for a few sessions.

Day 15:What are the worse parts about living Borderline Personality Disorder?

The worse parts of BPD are overthinking everything. I feel no one truly understands me and that leaves me feeling extremely lonely.

Day 16: What are the best parts about living with Borderline Personality Disorder?

The best parts of BPD are the euphoria you feel when you see a glimpse of happiness and being critical, helps me write academic arguments in education.

Day 17: Have you ever met anyone else with BPD?

I had a best friend a child who had BPD, which probably makes sense in hindsight why we got on so well. I also have another best friend with BPD now, who is high-functioning. I also met my housemates friend once with BPD, who I seemed to get along with and one of my brothers also suffers from Borderline Personality Disorder.

Day 18: What are the scariest part of the future with BPD?

The scariest parts of the future is not knowing if someone will say something that will push me over the edge to want to die. Other things are if I will ever be able to keep down a job properly, due to lots of medical appointments and feeling unwell and whether I can keep down a functioning relationship, being so scared everyone will abandon me.

Day 19: Is Borderline Personality Disorder curable?

Yes, Borderline Personality Disorder can be cured through Cognitive Behaviour Therapy (CBT), Dialectal Behaviour Therapy (DBT) and medication. However, not everyone will recover from BPD.

Day 20: Do you self-harm? If yes, how?

Yes, I do self-harm but it more a habit of mine as a coping mechanism. I self-harm by picking skin, pulling my hair out, cutting, not always taking my medication and consuming too much alcohol. I wrote a blog post called Borderline Personality Disorder and Me: Addicted to Self-Harming if you want to learn more about what led me to self-harm.

Day 21: Have you ever tried to commit suicide?

I have tried to commit suicide twice, both times ending up in a mental health ward.

Day 22: How to deal with suicidal thoughts?

It really varies, sometimes I do talk about how I am feeling with friends and family. Although, most the time I draw on my darker days or try to cry to get it all out and then sleep with the help of sleeping tablets.

Day 23: Have you tried any therapy treatments for BPD? If yes, what?

Although, I have tried CBT this was not specifically tailored around BPD, as it was before my diagnosis.

Day 24: Do you have a loss of identity?

Yes. I have many different dress sense styles,  struggle with self-worth and often tell people I don’t have a personality anymore and I just suck.

Day 25: Have you ever experienced mania?

This one is a hard one to answer as what is mania for one person might not be for another. I see myself in true mania, twice when I tried to end my own life. Although, some people and doctors would say I am in mania when I indulge in risky behaviours.  Risky behaviours can include, spending to much money, breaking the law, taking illegal drugs etc.

Day 26: What are your experiences of fear of abandonment?

As a child growing up, I believed my family didn’t love me, and one of my brothers was always a priority over me and my other brother.  I think looking back even the simply things, like my mum not go to parents evening, affected me too.  I have always had a fear of abandonment in every type of relationship and people do tend to leave me whether it be a day or years later.  In terms of guys,  my experience is,  they just want to get to know me because they are bored and until something better comes along in their life. So, I tend not to get to close to anyone and have been taking a break from dating.

Day 27: Have you ever suffered from nightmares?

I get nightmares less frequently now, but I use to have nightmares I would end up homeless and be a heroin addict for some reason and get murdered from someone stabbing me from behind.

Day 28: Do you worry what people think of you?

I know I care to much of what people think of me as I don’t want to come across fake or two-faced. My moods do change around certain people but I also can’t help but be honest about things, which some people love because they know where they stand. However, my honesty can cause some people to hate me.

Day 29: How do you find the motivation to do things with BPD?

If I have had rest days I find it easier to do what I need to. If I haven’t I try to do smaller tasks first and leave the big tasks until I have more  energy.

Day 30: What are some lyrics that help explain what you are feeling right now?

I listen to a range of music with a lot being liquid Drum and Bass.  One of the best songs that helps explain my BPD is: Trauma by Hybrid Minds

Moments fade
Life moves on
The future’s brighter
Brighter than our past ever was

We chase each other till we lose our heads
Going round and round
We run around in circles
Spiraling into the abyss, this is it
There’s no light inside the tunnel
Did things, what was said, we’re in pain in the end
It hurt me, to hurt you
So let’s get this trauma out the way

Day 31: What is your safe place and/ or person when you are upset?

My safe place can also be my trigger but it is my Dad. He says some very hurtful things sometimes but I know when push comes to shove, he will always try to help me and be there for me.  Although, I can’t get there to much  Valencia, Spain will always have a place in my heart, because it was a time I was truly happier.  So, if I am having a really bad day I will reminisce over photos of my time there in 2016 and 2017.

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Nearly five years being officially diagnosed living with a chronic gastrointestinal illness, I thought it was time to share what a day can be like living with irritable bowel syndrome.  Firstly, no day is ever the same – it depends on how much I eat, when I eat, the speed I eat and what I eat.

Symptoms vary from day to day drastically and I am always trying to learn about how to control new triggers with a food diary. Irritable Bowel Syndrome although considered a common condition, has become more complicated for me.

I also have Ehlers Danlos Syndrome III, Mast Cell Activation Disorder, Gastrointestinal Reflux disease  (with more gastrointestinal investigations pending) and this is what one of the worse days with Irritable Bowel Syndrome look like:

The Things Wikipedia can’t Tell you About Living a Day with Irritable Bowel Syndrome

*Alarm bells* ringing.

It is that time already, time to get up?”

These moments are the nicest of the day because I normally am symptom free.

Then as I move to get out of bed, I realise symptom free?

That was too good to be true, and pain has greeted me in full force. I put my hot water bottle that has gone cold to the side,  hold my bruised stomach as precious as a new-born child. I try to think what I ate and drank yesterday that could have made me so bloated and swollen. I throw on about five outfits around my room to try and cover my food baby.

As all this commotion has been going on, and I have missed breakfast yet again, and notice I am going to be late for work. As I waddle to the bus stop, knowing I can’t carry my weight if I need run for the 8.13am bus, I have a 50:50 chance of missing my eyes fill with sadness.

“Why did I even bother to set an alarm?”

“Why didn’t I call in sick?”

“How on earth am I going to get through another day of pain?”

I smoke two cigarettes to try and open my bowels and question if it is worth it to play Russian roulette and fuel my body finally with breakfast. This may sound extreme, but due to my acid reflux I don’t know if I will be cursed with throwing up, severe constipation or torrential diarrhoea in the mornings. If I forget my medication, on a really bad day, it is all three.

Most people, with a gastrointestinal illness will tell you mornings are a nightmare and if we could sleep through them and the pain – we would.

Although, to live a functioning life we just have to grin and bear it and brace ourselves for the first dose of food.  I mean it should be gluten and lactose free food that is, I normally settle for free fruit. A few bites in, it’s a mind over matter type of test as I try so hard not to vomit in the bin. I open my draw and take anti-nausea pills, mast cell stabilizers and anti-histamines.

Other people can’t see Irritable Bowel Syndrome, just that I am a gassy individual, that frequently suffers from abdominal pain.

Within 5 minutes, I discretely walk fast to the disabled toilet.  Rummaging around for the air freshener spray, praying that no one is stood outside and wipe any sick from around my mouth. I check for blood in my stools and if it is present, I know it’s set the tone for a hell of a bad day.

To the disgust of some colleagues, I have farted and burped out loud, hooray I have got breakfast out of my system.It is around 9.20am and I am now ready to start work. Breakfast has exhausted me, so I reach out for my caffeinated drinks to give me energy to actually start work.

A few hours have passed and now it is lunch time. On a really bad day, there is no lunch time because I can’t put my body through another few hours of hell.  On a day lunch does occur, I walk to a nearby supermarket. As I keep an eye on the time I read through all the packaging, for my never-ending list of food allergies.  These include: wheat, nuts, crustaceans, garlic, plums and apples.  Then there’s the heavy intolerance to gluten , lactose, pork and tomatoes.

Sometimes, there is literally nothing I can eat in the local supermarket – Crazy, I know. So I take something I shouldn’t have.. Itry and get it out my system quickly or go hungry. My therapist has stated eating something I am allergic or intolerant to is considered self-harm but if I have run out of food at home, I fell I am literally left with no choice.

On a day, I eaten bad foods for me,  I still note them down but I become weak and lethargic. There is nothing I can do but take another three trips to the disabled toilet and then spend my lunch break resting.  You can find me, asleep with my head on the staff dining table in the dark, trying not to move. This gives my body time to adjust to the poison I have fed it.

Despite Irritable Bowel Syndrome, I always try to have a productive day at work because I am on an industrial placement as a part of my Uni course.  Although, some days I still get more work done than others.  I find student life a bit easier because I can sleep away the pain multiple times in the day. However, this brings its own challenges like waking up to miss lectures and of course meeting deadlines.

The work day is over and it’s time to head home.  I then have to think if I have plans, and if I do – cancel them. I am so exhausted I can’t even cook dinner let alone face socialising.  Sometimes friends understand, other times they are annoyed and to be fair a life with Irritable Bowel Syndrome can become quite lonely, rapidly.  I get stressed I have unfinished Uni work, haven’t done any art for my charity fundraiser, or written another blog post.

With no boyfriend, I take a bubble bath, slip into my soft pyjamas and put my electric blanket and Netflix on. I take a quick nap and then have to wake up to take never-ending list on medication. You would think with no dinner for energy, I would sleep throughout the night but I am normally in so much pain for this ever to happen. If I need to give body some food I will put something quick in the air fryer or eat some crisps and fuel my body with smoothies. I have to be very careful at dinner time because if I eat anything more to trigger my symptoms I will be in bed for the next few days like a zombie.

Shock, horror, I need to the toilet again.

Now I am constipated, and I have to find something to squeeze to try and open my bowels and hope that piles don’t come out. I smoke a few more cigarettes and then try again. I make up a new hot water bottle, shut my eyes and as the sleeping tablets finally kick in, I fall asleep in the early hours of the morning.

Hoping tomorrow will be more productive and involve a little less torture.

Sharing is Caring

I would love if you shared my post to raise awareness of Irritable Bowel Syndrome.

Have your Say 

Do you have any feedback, questions on my post or  suffer from your own  gastrointestinal issues? – If so I would love to hear them in the comments below. 

Like what you see? 

If you enjoyed learning about my personal experience with Irritable Bowel Syndrome, you may enjoy a short poem I wrote about it.

A Devil Disorder in Disguise:  An Original Poem about Irritable Bowel Syndrome 

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