The Agonising Truth Exposed: Chronic Bladder Syndrome

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, Well-being

Interstitial-Cystitis-

Hey Guys,

I hope you all had a lovely Christmas and Happy New Year!

After being offline along time, here is the one post,  I was nervous to write about – fearing people would have the misconception, I am dirty.

I feel it’s time to share a condition that restricts my quality of life.  Interstitial cystitis (IC) also known as chronic bladder syndrome is NOT  a STI or a UTI.  However, bacteria has been linked to a cause of bladder inflammation.   Being the queenof UTIS and internal inflammation remained a mystery, until recently. Though, it  use to be predicted to be down to my bladder being about the size of a £2 coin.  If you have  never had long-term bladder pain, I sit here in envy. 

Now, I welcome you to my story – the girl who lives on antibiotics. 

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“Antibiotics, the best friend or fiend of an IC warrior?”

Some argue, antibiotics do not necessarily solve IC, which explains why I feel in high levels of pain every day. However, some GPS claim they are essential, to cure it or…. in my case even prevent UTI’S, that worsen it.   For many years I took Trimethoprim, Ampicillin and Nitrofurantoin with little or no relief, even when infections did not exist. Being told in so many words , to abuse antibiotics, it is no surprise I have a weaker bank balance and now  have now become immune to these types.  Typically, I can be on a course for 6-12 weeks at one time.  Recently, I have moved on to three new types of antibiotics on a 6 week course. The pain got so bad I missed my University exams, but now I am figuring out what I can do about this, battling on.

“I don’t give up that easily – with love your swollen bladder”.

I normally finish the first two-three weeks of antibiotics and don’t feel any better.  The first week, I will still be spending my life in bed, wondering if the pills will ever work or will I be dead by tomorrow.  I know this sounds dramatic. Although, the hospital keep ranting on how I could be well on my way, to developing kidney failure. IC and UTIS are persistent, especially if you have had them a long time – in my case 6 years of misery.  It can have as much persistence as a guy you have cut out your life and then drops you that text ‘Hey,bby girl how are you?’ and your like enough already, please.

“Chronic bladder syndrome plays trick on you like the house of horrors”.

Regularly, when I am watching TV, a shooting strike of abdominal pain arrives. Once, this passes I get settled and comfortable and then I realise, I need the toilet. I take a wee, and that’s it I am gasping for air, like there is no tomorrow.Urinating has more sting than a bee. It is like pouring acid into an open wound. I get up struggling to waddle down stairs, to glug down water and send my mum off to buy pain relief…

For an hour or two, if I am lucky I may be numb… ONLY if that feeling could last forever.  I think a day, where I can relax.. Then the pain strikes again, and as I swell the pelvic pain becomes unbearable.  I try to take my mind off it and take a warm bath to sooth body. It does, until I get out.  I pull a funny expression, as if an object is stabbing my urethra, thinking – “why, why me?”

When the pain rife, I cannot sleep or function for many days”.

Awake most nights in throbbing pain, I hobble to the toilet with relief to empty my bladder whilst anticipating the agony to come.  I climb back into bed to realise I hardly emptied my bladder and I need the toilet again.   “I look down at my body with anger and think seriously? – Like it is going to respond to me and say sorry Morgan, you are just an easy target. Reluctantly, I get up once again squeezing my bladder like I would a fresh orange for fruit juice, which can occur up to 10 times in one night.

Finally, I fall asleep anxious the next day it will be worse. I wake up, debating if I have enough energy to go out. Normally the answer is no, my insides are on fire and more often than not I do not want to leave the house.  I am to  scared to go out – scared that if a toilet is not nearby I will wet myself or have to immerse myself in a bush.  I lay back down flat thinking OK, things will get better but –  deep down I know I am more complex case. I have multiple food allergies, which if I am not careful – encourage the mast cells to release histamine and mistakenly attack my bladder.   Eating and drinking like many others, put pressures on my bladder. Furthermore,  I never know if a UTI has returned or if it the IC symptoms. My dip tests always must be cultured before this can be determined.

“Cystoscopy Round Two”

I recently had a second Cystoscopy, whilst I underwent other procedures because I had been showing high levels of blood in my urine for many months. The first one, I had two years ago despite the pain, apparently was relatively normal. So, I had a bit of a shock when the Doctor spurted out  I have a defect in my bladder lining, irreversible damage, internal bleeding and scaring and that  I never have a normal bladder again. On another 6 week course, I also await bladder installations.  The biggest bombshell of them all, was, I must restrict my diet even further.   Ensuring, I am also on a diet that is low in histamine, acid, oxalate and potassium.  In that moment,   I felt like I was going to turn into a restricted herbivore – with my mother on guard, the 24.7 FOOD POLICE, as I call it.

“IC makes you feel like, you will never be happy again”.

As the symptoms are so similar to an infection and there pretty much 24.7, I always think how long to the next round of pain…. Worrying it will be back sooner than it should. I missed out going out on New year but I want to focus on a couple of helpful blog posts in the next few weeks to endeavour to inject positive vibes back in me.

Do you suffer from IC like symptoms?

If you had bladder symptoms lasting longer than 6 weeks, you may be suffering from IC and should see your GP.  I know its hard but you really need to try and stay hydrated to prevent migraines. Imperial Colleges’ guide is useful to help you manage IC like symptoms.

Have your Say?

Do you suffer with IC like symptoms and have good tips to manage it – if so, why not share them below?

Thanks for reading,

Lots of love,

my name

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5 Ways to have a Productive Day with a Chronic Illness

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses, University life

“Having a productive day is very subjective; what is productive for one person is not for another”.

Some days, I find waking up, washing and eating productive. Others assess,  I am being productive when I  do University work.  What I have noticed though – is we all have tasks that need to be completed and this can send us into panic mode. The vicious cycle, of where to start and where to finish has a ripple effect – like a child who got denied candy at the fun fair.

 If you are someone sat there reading this with a chronic illness, I am sure you have an inkling of the cycle I am talking about. If you don’t well… I sit here, in envy.   What I am going to call the ‘ torrential storm cycle’ makes you question which direction to go in first.   Anxiety and stress are no strangers, crawling around your body, taking its toll , physically and mentally.  This post is designed to stop you in your tracks, so you aren’t continuously interrogating yourself about ability and self-worth.

“I spend 90% of my time in bed, but a chronic illness does not mean accomplishing your goals are not possible”.

Achieving those goals may just take comprise, planning and longer than you anticipated.


5 Ways to have a Productive Day with a Chronic Illness

1. Evaluate tasks ft. the spoon theory

If you haven’t heard of Christine Miserandino’s Spoon theory , it is a great place to start to help you have a productive day.  The theory in a nutshell, is that anyone who is chronically ill has 12 spoons each day (each one resembling energy) and spoons are exchanged for tasks.  The amount of spoons exchanged will depend on factors such as the length of the task and how strenuous. The point here, is spoon must be used wisely so you don’t burn out. By ordering tasks by importance you can identify what needs to be done on what day and start to put a plan in motion.

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 In reality, you may find executing a plan is not always possible. However, the spoon theory gives you a general consensus of how much you can get done in a day.

You may find – once you start having a productive day you are at the opposite end of the spectrum. At Uni, I get told a theory is just that a theory. I am taught to challenge theorists view. So it may not be a surprise to hear I wasn’t a firm believer of the Spoon theory at first.  I was so productive one day I felt on top of the world. I couldn’t believe my eyes. I had completed an exam, handed in an assignment, found a job, booked a flight, travelled home from Uni and packed for a holiday and cuddled my little bunny.

Shortly, after this semester came to a close – I realised I used the reserve of spoons for months. I had to fly home 3 weeks early from working abroad, quit the job I found and was  behind in every subject at Uni. Barely, attending lectures and hospital appointments.  What I am trying to emphasise, is pushing yourself one day really can have a detrimental effect on your health.

“You need to work out what is realistic to get done in a day for YOU”.

 Which takes me to by next point…


 2. Break down tasks

 Breaking down tasks makes things more manageable.  Something,  I am training myself in like a disobedient dog. I am one of those people who seeks to think holistically to even do a task.  However, breaking down tasks can relieve stress, because you know you are achieving something – which has got to be better than nothing, right?

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I have found people have been more understanding about my illness when they can see that I am trying rather than wallowing in self-pity.  The amount you need to break-down a task will depend on its complexity. It may be a case of trial and error, but you know your body better than anyone in time you will have this down to a tee.

 If it’s something academic, you could try and break things down with titles and research areas and tie the ideas together later.  You may not get the best grades you are used to due to time constraints.  However, at least you will pass and can try and work harder when you are feeling a bit brighter on future work. If the task is practical, like cooking, you could do prep at a certain time and then cook later in the day.  Or if you’re a little bit cheeky – ask someone to help you to make the task manageable.


3. Follow your Body Clock

Most people would say, sort out your body clock first and foremost. It may work, but it is something I have been trying to do for over 10 years. My body just likes to be up during the night. The fatigue and pain is more manageable after I have digested by one meal per day.

“To have a productive day you must follow your natural body clock”.

You don’t want to set yourself up for failure by taking a U-turn and trying to achieve tasks when your energy levels and pain threshold is low.

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“Remember you can always move tasks to another day as long as you’re motivated to accomplish them”.


4. Relax… just not too much

Whether you have a chronic illness or not, everyone should take time to wind down.  If you’re fortunate enough TAKE a bath, or go and visit someone who does! Watch a comedy, listen to music or sit in silence, do what works for YOU. I am not saying you are not going to wake up still feeling fatigued because you probably will BUT subconsciously your body and mind is still getting a valuable break and you get a hint of happiness.  I find relaxing whilst doing a task slowly usually gives me the right balance. However, this may not work for everyone.

“Just remember, don’t relax too much or you won’t get anything done”.

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5. Relieve stress with a pet

Patting pets are proven to having a calming effect on humans (Rodriguez, 2012), which may help you to think more clearly and be more productive! It is ideal if you own a pet and go and give them love when you are stressed and they are in a good mood. If your pet is moody, trust me try hugging your friends’ pet or the other four tips AND come back to this one later.  When my pets are hungry they treats me like food and it makes me feel rejected and has the opposite effect.  If you cannot keep an animal, I suggest you look out for the nearest dog on your walks or go visit an animal shelter. That way you can have your rare day out, killing two birds with one stone.

 


Thanks for visiting Brains & Bodies. I hope I have shed some positive vibes on how to have a productive day.


Sharing is Caring 

I would love if you shared this post to help others with chronic illnesses have a productive day – everyone deserves one! For some reason all my shares reset back 27 from 84 , but please keep sharing. 🙂


Have your Say

Do you have any tips how to have a productive day? – I would love to hear them below.


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Over and out,

my name


References 

Rodriguez, T. (2017). Pets Help Us Achieve Goals and Reduce Stress.

Spoon theory (2017). The Spoon Theory written by and spoken by Christine Miserandino. [online] Available at: https://www.youtube.com/watch?v=jn5IBsm49Rk [Accessed 10 Nov. 2017].

 

5 Challenges Blogging with a Chronic Illness…

Chronic Illnesses, Invisble Illnesses, Mental Illnesses, Physical Illnesses

 with a sprinkle of advice.

Hello, there 🙂

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If you haven’t read my other posts, welcome. It’s not a secret anymore I am a spoonie. I am Morgan Isabella Shaw, a 24 years old that suffers from Ehlers Danlos Sydrome. However, recently when I was procrastinating, I remembered I haven’t confessed how challenging it is to blog when you have a chronic illness.

I will admit I find multiple things an uphill battle. Cooking, washing myself, walking, relationships and blogging is no different. Actually, it doesn’t happen – unless I am blogging from bed. Even then, five minutes into starting a post I tend to experience a  flare up and struggle to finish writing it that day.  As, I throw my laptop down, I feel disappointed in myself I have not met the strict self-inflicted deadline.

If you land on my homepage you will notice I endeavour to publish one post week.

One post a week – is that it?

Many fire back at me with an eye roll or one raised eyebrow. This made realise how many people do not understand how many challenges are behind the scenes for me to keep on generating posts.This post will let you walk into another part of my mind and reveal 5 challenges a chronically ill person may face when they decide to become a blogger…


5 Challenges of Blogging with a Chronic Illness

1. Blogging is Addicting

 I don’t know if blogging is addicting for everyone or if it just applies to me because of my addictive personality.  I use blogging as a natural remedy for my clinical depression so I try to do it as much as possible to release emotions.

The problem with this is, I have found is I end up not getting other important things done. For example,  I sit very confused looking at University briefs, because I can’t find a private tutor this year –  so I turn my mind to blogging instead.

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If you find yourself in this position you need to like me – try and snap out of it and  make a loose time management schedule, so you can do everything.  As I move through the academic year I am aware that my blog is going to have to take a backseat if I am to pass it, not because I am abandoning you! I also have to admit the more I want to blog the more I shut myself away from my friends. However, I don’t want to give up blogging.  For once I am starting to enjoy one thing again, which in turn makes me feel less suicidal on the whole.


2. Limited Energy

With most chronic illness comes chronic pain, fatigue and brain fog which makes it difficult to concentrate.  I spend every spare second I have whether that be on the toilet or public transport thinking of new blog ideas and content. The issue associated with this is, my brain goes into overdrive – I  now don’t know how not to think.I am awake until the early hours of the morning. I can’t blame blogging entirely for this – I have always been known as a lady of the night up with pain. However, before my mind got a longer rest.

When my I-phone is ringing in my ear  I know the next day  has hit.  I then *sigh* reaching for the closest can of coca-cola to be able to manoeuvre up right and override the extreme tiredness for a short period of time.  Due to my levels of tiredness I get fed up very easily…

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So, even if I have the best idea for a blog – I lack motivation  to actually blog as even the computer screen stares back at me like a fiend.  A part of this is attributed that with a chronic illness, you never know when bad patches will attack you.  This means it is also difficult to plan a content and schedule and actually STICK to it.


3. Anxiety and Negativity

 I can be a very negative person. To date, I will be honest I only have 66 followers.   I become anxious that no one will like or share my posts and that even sharing my reflections will be worthless.  I panic that the more I write the worse my academic writing for University will become and I am convinced I am going to fail there too.

The reason behind this is, blogging is very descriptive writing and University expects a much more critical standpoint for assessments.  I then wonder if I am being too ‘open’ with the public in what I am sharing and worry that it will affect future opportunities. For example – I need to pull my finger out my arse and start applying for 12 month placements for my degree.

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I frequently question, if having a blog will be a hindrance and shed light that I used drugs in my past, have clinical depression and that I am disabled. I don’t want special treatment but I know I need to disclose my disabilities on a job application form because my pain affects me on a day-to-day basis.  Whilst, this is all spinning around in my small brain,  I then worry about when I take a back seat from blogging –  if I can ever get the passion back because for other hobbies when I lost them, it was lost forever…


4. Being a Citizen of the Blogosphere

It is also no secret I struggle with Dyslexia and Dyspraxia. I find that when I read someone else’s blog to try and learn about other illnesses I don’t always understand what I am reading initially. Everything just gets lost in translation.

How do I overcome this?

I spend a lot of time on Google to understand what the illness is first and then go back to the individuals’ blog.  All of this is interesting but very time consuming.  You may be thinking – well just skip this part, but that would be a vital mistake.  Commenting on posts is essential to improve your writing skills and how you engage with other people.

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5. Gaining Traffic and Post Engagement

In October, I received just over 3,000 unique visitors. Although, I am not sure I really did receive this many as it is likely  some of these visitors were in fact me stalking myself using my friends’ phones as I was without one for a while.

I am unlucky with any electrical product! ( I  was definitely was born in the wrong century)..

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Additionally, I don’t have a strong social media following across many platforms.  I spend the most time on the one where I do have a following – Facebook, to try to gain traffic for my blog.  I am also putting ‘all my eggs in one basket’ and hoping when I finally set up a YouTube channel this will improve my traffic and engagement… as I try to figure out how to increase my Twitter and  Pinterest following.

On Facebook I post my blog posts on my wall, into a couple blogging groups and into chronic illness support groups when I have permission to do so.

 


That Sprinkle of Advice 

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Do you have a chronic illness and are thinking about becoming a blogger?

 DO IT!

Just remember don’t punish yourself for not being able to post as much as you would like to gain a following.  Fellow bloggers divulged that blogging consistently is very important, where I have fallen short a little bit as the times and days I post content really does vary. This is something I am going to work to improve as I become more experienced and I hope my readers understand that this is not always be possible.

On groups, ensure you always read the pinned posts in groups or you can find yourself getting an inbox of angry admin messages and deleted out of groups.  I find the most effective way to promote your blog on Facebook is through Facebook pages BUT be careful you will be blocked by Facebook if you are a repeat offender.

I think if you post a series on one theme, you may gain more followers. However, I don’t do this because my mind is scatty and like to think of lots of different topics at the same time!


So, guys there are the challenges I have faced blogging with a chronic illness. Next, you can expect to find 5 more general challenges I found since becoming a blogger and what I’ve learnt about myself since becoming a chronic illness blogger.


Sharing is Caring

I would love if you shared this post to raise awareness of some of the challenges a chronic illness blogger faces!


Have your Say

If you a blogger what are some challenges you face?

If you’re a chronic illness blogger do you face similar or different challenges to me?


 Like what you see? 

Join me on my journey on social media;

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Thanks for staying tuned in bed with me and I hope to see you back soon.

Lots of Love,

my name

Popular Related Post

My Invisible Illness ft Tramadol

My Invisible Illness ft. Tramadol: The Ehlers Danlos Series

Invisible illnesses, Physical Illnesses

This post was inspired by Invisible Illnesses Awareness Week (15/19/17 – 21/19/17)

If you go on my Instagram, you will see accumulated photos of a happy and healthy 24 year old. Some, may even think I am luckier than most – with multiple pictures captured in different destinations.  Travelling whilst you’re young, resonates through many millennials DNA– whether it be for the sex, partying or general experience but that isn’t the case for me. There was mistakes in my genes.  I trot off to see the world on the rare occasion I am well.  Fearing one day it will be impossible.

“Instagram tells one story and now I am ready to tell you another”.

Differentiating my left from my right or retaining balance has never been easy. A simple task – walking down the street, when I make it out the house that is — turns into a game of dodgems or a dance off with a complete stranger as we try to pass one another.   Each time, piercing eyes glare towards me. Sometimes a friendly one, like I am a lost tourist. Other times it’s a look of annoyance, alongside muttering. All I can do is apologise, after all I don’t look sick.

Concealed by clothes and a face caped on of make-up and long hair, how could I?

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The truth behind the make-up”

As I stand naked I am confronted with an extremely different version of myself.  I see a painting with various shades.  Hues of red, green, black, blue and purple. All powerful colours, yet a battered body greets me, due to my lucid skin.  A body that looks of one of self-harm or domestic violence.  Panic flowing through my veins, that someone will catch a glimpse of this picture.

How do I explain this is a body of Ehlers Danlos Sydrome III (Heds)?

Even to G.P’S, which need it to be spelt as they open Google.

 

 

 

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Need explanations of Ehlers Danlos Sydrome? Click here


Before my diagnosis in 2016, I worked as a Waitress actively using my muscles. However, falling up and down the stairs and dropping to the concrete floor like a ton of bricks, was my signature dish. I spent my tips on creams and ointments, believing the burns, scabs and bruises could be easily erased- I was wrong.

“Denial –the deadliest form of depression”

Imagine, making cup of tea is like running a marathon. Or any movements of your arms or legs makes clicking or crunching noises as your joints dislocate.  Feeling like  like needles are travelling through your body, as fast as lightning.  These are my day-to-day realities. An extreme case of pins and needles, I once convinced myself. Never connecting those feelings to the coloured landscape that covered me.  To other people, including G.P’S I was just a hypochondriac, tired, accident prone and clumsy.

I purchased Tramadol in bulk online and took it a few times a day. It was catch 22.  when I took it I would be dazed – half with it. However, if I didn’t take it the pain would hit me harder within an hour and my awful mood would return…

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“Unsure, if I could survive a quarter of a century, something had to change”.

At the righteous age of 23, my head became too heavy for my neck and I was continuously dehydrated. Unable to work anymore, I couldn’t let some marriages last longer than my life.  I convinced my family to pay for a private appointment with a leading rheumatologist, in basic terms a muscle doctor. I promised to stop whinging, if nothing came of it.  At £300 per hour – it’s not hard to see why.

The appointment arrived one week later. Within twenty minutes I became the Cheshire cat out of Alice and Wonderland. A smile of relief.  FINALLY I had a label, the answer I was searching for. Yet, that label led quickly to change in character. I saw red. Bitterness invaded my mind as I learnt there is no cure for EDS. Not to mention, I had been told, there may be more underlined medical problems associated with it like POTS.


    “The Ehlers Danlos syndromes evil natures

I don’t take Tramadol anymore, because I want a clearer mind, which leads me onto my next point. With EDS, it is never a question of are you in pain, it’s a question of how much.  Yet, the diagnoses are imperative for mine and other patients’ sanity. EDS is like God – some people can’t  believe, what they can’t see.

The thing is – with an invisible illness you have the choice who you tell about the disability.  Some patients view this as distorted blessing, a chance to be normal again. I know I do. From time to time I remain quiet about EDS to prevent being excluded from an activity.  Unfortunately, this usually causes more damage.  As I lay my cripple body flat, speculating when I will walk again; I find myself extending my blacklist instead of the bucket list.


                                              Could you have Ehlers Danlos Sydrome?

If you are double-jointed, have chronic joint pain and suffering with chronic fatigue you may have Ehlers Danlos syndrome. Don’t suffer in silence and head down to your G.P and reach out to support networks.

Coming soon

 An EDS series of Vlogs and blogs welcoming you into Morgan’s world and all things Heds.


Sharing is Caring

I would love if you shared this post to give people an insight of what it can be like to live with Heds.

Have your Say

What do you think about invisible illnesses and how they are perceived?


Join me on my journey on social media.. 

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Thanks for reading,

Lots of love,

my nameRelated post

About me

 

 

Behind the Brave Face: 7 Secret Signs of Depression

Mental Illnesses

Depression Diaries (Post 2)

If you look around see someone who looks sad, they may be just that – sad. Life is full of ups and downs so it is natural for our moods to adjust to different circumstances. Feeling down in the dumps from time to time and grieving is normal (NHS U.K, n.d; Winch, 2015). It is when sadness turns into something more gradually, the inner demon depression is born in yet another victim.

A common misconception is depressed sufferers have monotonous personalities. However, it is a complicated emotional state that affects people behaviours differently. Someone who is depressed may loathe themselves, feel helpless, hopeless and upset (Mind.org.uk, 2016) although, the extent of what is felt and how they act varies.

A mildly depressed person can get through daily life holding down a job or running a family home. Whilst, a clinically depressed individual struggles to get through each day and may live a double life. Sustaining a double life for some is just too much to handle. In the U.K and Ireland alone, more than 6,000 people commit suicide, ISAP cited in (Mental Health Foundation, 2017).

 

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My last post touched upon that the disease does not exhibit in one stereotypical face. Depression can pursue your colleague or peer – the person you admire most or even decide to seek you. No one should believe they are immune from the black fogs wrath. Unfortunately, 1 in 10 people in England will suffer from clinical depression in their lifetime (NHS U.K, 2016) but many more go undiagnosed. Even those with diagnoses may still conceal it because they believe their curse will be a burden on others…

If you aren’t aware of the hidden signs of depression it is easy to overlook requesting help for yourself or a loved one in need. After all, how can you notice something you don’t understand? This post is to help you reflect on yours and others’ behaviour, to identify whether symptoms are apparent, to gain support to manage and relieve them.

 


7 Secret Signs of Depression (Part 1)

1.Withdrawal

A depressed person will try their best to avoid social activities. Periods of silent isolation is one of the main signs that an individual is being tortured by depression. When someone becomes depressed it is not unusual for them to lose interest in everything and everyone. Where he or she may have once been the party starter, now they are the party pooper and may even call into work sick.withdrawal

They may still make plans with you, trying to keep up the ‘happy’ pretence. However, in reality they have turned into ‘king’ or ‘queen’ bail’. Someone who consistently lets you down is likely to be suffering from depression.

 


2.Excuse O’clock

When you realise you were lied to it is hard to trust the person who lied to you. Yet, it is unlikely you will taste dishonesty from depressed people – they are  semi-professional liars.

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They have the skill of making up believable cover stories on the spot for pretty much anything. Lies could be to hide how they got scars on their body (when they have had a self-harming sesh) to an excuse of why they need to leave somewhere rapidly. Although, they mastered lying tell-tale signs of their illness is that they have an answer for EVERYTHING and are very defensive.

 


3. Mean Girl… or Boy

A depressed person over analyses themselves and others people obsessively. They do this is because they are so unhappy with their appearance and/or personality that they begin to look for what they desire in others. At the same time when that individual finds traits in someone else they despise in themselves they give off the impression over being over judgemental and a royal b*tch. From experience, chances are that b*tch is extremely insecure and depressed too.

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4. Conversation Changes

A closed book who avoids expressing their feelings and subjects is likely to be depressed. Of course, it is possible that he or she will bleed out their feelings but usually this in a philosophical manner. If you find yourself or a loved one turning the conversation to life or death, or what the route is to a happier life and no philosophy or R.E books have been studied. Then, you are certainly hearing little indicators of depression.


5. Substance Abuse Perceptions

We all know drugs are bad – right? Not exactly. A depressed person views substances differently to a healthy one. I want you to think of your favourite food, – could you live without it? If someone is a user they see them as necessities to get through the next day. Even if they’re not a user, they may consider it as a viable option to wash away their pain… to be happy again (even if they know it’s temporary).


6. The Mechanisms of Intense Feelings

A person masking depression will often feel emotions more intensely than others. Do you find yourself or know someone whom bursts out in floods of tears watching television over a scene that isn’t sad? Or see red about something trivial like someone overtaking them in a shop queue or in traffic? Well that is personifying the clouds of gloom. The only way some depressed suffers know how to channel their depression is through anger and irritability (Koh et al., 2002).


triple

7. *Incoming* Triple Threat…

Failure, Rejection and Abandonment. The three ingredients a depressed person wishes their mind could shield. There is nothing worse than finding out someone you love cannot handle your worse layer. The fear or rejection and abandonment forges the need to be secretive so they don’t walk away. If you or someone else strongly fears the triple threat, then you may be depressed.


So, there we have it guys, 7 secret signs of depression unveiled. I hope you found it useful whether you think you or a loved one may be suffering from the condition.


Do you think you or a loved one could have depression?

Resources

United Kingdom

Depression UK: Supports those suffering from depression

info@depressionuk.org 

Samaritans UK: A helpline for those who feels heavy distress or suicidal. The helpline does not show up on phone bills also.

116 223 – Free helpline (My personal favourite)

08457 90 90 90*

*This number still works to get through for Samaritans but you will be charged for the call.

SaneLine: (6pm-11pm, open every day of the year) provides support to those suffering from mental health problems)

Young Minds (Under 25 years old): A UK based charity committed to improving children and young people’s mental health.

020 7089 5050

U.S.A

National Suicide Prevention Helpline

1-800-273-TALK (8255)

National Adolescent Suicide Helpline

1-800-621-4000


Over to You

Can you think of more hidden signs of Depression? – If yes, why not share them below?


 

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I would love if you shared my post to raise awareness of some of the hidden signs of Depression.


About the Author

My name is Morgan Isabella Shaw a warrior of clinical depression. To find out more about my story click here.


Coming UP Next…

Behind the Brave Face: 7 More Secret Signs of Depression (Part 2)


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References  

Koh KB, Kim CH, Park JK (2002) ‘Predominance of anger in depressive disorders compared with anxiety disorders and somatoform disorders’. Journal of Clinical Psychiatry; 63: 486–92.

OpenUrlMental Health Foundation. (2017). Suicide. [online] Available at: https://www.mentalhealth.org.uk/a-to-z/s/suicide [Accessed 21 Sep. 2017].

Mind.org.uk (2016). Symptoms | Mind, the mental health charity – help for mental health problems. [online] Available at: https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/symptoms/#.WcOdoZWWzIU [Accessed 21 Sep. 2017].

NHS U.K. (2016). Clinical depression – NHS Choices. [online] Available at: http://www.nhs.uk/Conditions/Depression/Pages/Introduction.aspx [Accessed 21 Sep. 2017].

NHS U.K. (N.d). Dealing with grief and loss – NHS Choices. [online] Available at: http://www.nhs.uk/Livewell/emotionalhealth/Pages/Dealingwithloss.aspx [Accessed 21 Sep. 2017].

Winch (2015). Psychology Today. The Important Difference Between Sadness and Depression. [online] Available at: https://www.psychologytoday.com/blog/the-squeaky-wheel/201510/the-important-difference-between-sadness-and-depression [Accessed 21 Sep. 2017].

 

 

The chronically ill student’s quick-guide to success

Uni

It is hard enough for University students to balance their coursework and exams with their social life. So, when a chronic illness is thrown into a mix, it definitely puts a spanner in the works.  Surviving student life with a long-lasting illness can appear daunting, impossible.

Trust me, I know. I had a mental break down three weeks in my first year and nearly dropped out.  The tips I am going to give you, are the techniques that enabled me to find my feet ; study with more ease and achieve high grades.


1.  Apply for DSA

If you have a chronic illness, you should qualify for Disability Student Allowance (DSA).  You apply for this through Student Finance (SF). You will then be offered a ‘Needs Assessment’ . This assessment determines what you are entitled to, based on your individual circumstances.

If you take anything from this post, it is really worth taking the time to make an application because your disability will be on record – even if you switch unis or defer. Module leaders are also made aware of your specific needs and you should get extra writing in exams and coursework extensions. Other examples I received were; printing costs ,  individual £1 taxi journeys costing  to and from campuses and Dragon software.  The software works by you speaking into a microphone and it types up what you say.


2. Order groceries online

Getting your groceries delivered may sound like a trivial thing but if you have a physical illness, it is something you MUST do. Not only will the delivery man become your new best friend, you won’t break your back in the process of buying food. food

It is easy to want to buy everything online but don’t spend money for the sake of it unless you are mintedIf not – like the majority of the student population, it is wise to set yourself a limit so you don’t become the size of a hippo and can go out.

Most supermarkets add basket charges which cost between £3-£6 each time.  If you want to do lots of little shops, TESCO delivery saver gives you the choice to pay for unlimited deliveries as long as you reach the minimum spend (£40).


3.  Select a disabled bedroom

Most Universities, allocate disabled spacious rooms in halls with larger beds on the ground floor. You will need to apply for the room during the booking of the accommodation and disclose evidence of your disability. I recommend doing this otherwise you might find it difficult to get to sleep with pain.


4. Cook meals in bulk

When your illness flares up, I know it can be difficult to do anything. When mine does I don’t want to get out of bed unless it’s to eat – I am a proper foodie. Cooking meals in bulk ensures that you always have something to eat, should you feel hungry – which is important for recovery.   Quick and easy nutritional meals I recommend that are fresh are; stir fries, steak, pasta, jacket potato with beans, sandwiches and chicken with salads.


okay

5. Be upfront & request help

Being open can be a difficult thing; for many in a new environment with strangers.  You may worry more that people won’t accept you because your different. Don’t worry, just be honest about your illness. When I wasn’t honest about mine I lost a lot of friends because they thought I was boring when I couldn’t go out.

Don’t live a lie and just try to keep up with the pace of everyone else. The chances are, you won’t be able to for long and burn out. Also, talk to your lecturers and  about your condition.  Discussing your illness can make them more understanding than it written down on a piece of paper.


6. Visit wellbeing

Every Uni, has a wellbeing department.  Go VISIT it.  You will be designated a disability advisor, who handle matters on your behalf and can help you with queries. My advisor helped me talk through my options if I was to stay or drop out of Uni and drafted my disability memo to staff.  You may find that you are entitled to extra support that is run by your specific institution too. For example, stress-relief and anxiety workshops.


7. Buy an audio recorder

When you do roll up to those 9am lectures, with a potential hangover and chronic audio recorderillness; chances are you won’t be playing much attention.

If your Uni does not record lectures, buy an audio recorder – they are only about £20 from Curries or Argos.  This device was literally my savour throughout first year and helped me remember content. However, make sure you sit near the front to get clear audio. I don’t think I would have achieved my high grades without this gem.


8. Take your laptop to lectures

Some lectures, speak very fast.  So, I suggest you take a laptop so you can open up the slides and go back and forth at your pace to keep up.


9. Have a structure

Try to plan your days as best as you can. So, you can relax  at societies and find time to do your coursework.  This can be difficult when your ill and one day merges into another but the secret is you can have a loose routine as long as you stay organised. By this I mean completing coursework progressively and putting your notes in a folder.


10. Take the free support available

I know, it can be hard to accept help, because of pride – you don’t want your illness to define you.  I was reluctant at first to take help but I was really struggling to plan my workload.  You are likely to get a learning support assistant through DSA for one hour per week in a study room.

The assistants are not subject specific but are still useful. During these sessions the tutor taught me how to structure essays for exam, check my progress and helped me plan. Be aware though – if you miss 2 consecutively without 24 hours’ notice your Uni reserves the right to stop these sessions for the entire semester.



 So, there we have it guys. My guide for the chronic ill student’s success.

I hope you found it useful.

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Sharing is caring…

 I would love it if you shared this post to stop other students suffering.

*This post had 50 shares but when I updated my domain it reset and all old shared links became invalid.


Have your say…

Do you have any top tips that helped you studying at Uni? If so – why not share them below?


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PoTs – The Invisible Demon.

Chronic Illnesses, Invisble Illnesses, Physical Illnesses, POTS

PoTs Explained and my Symptoms

Postural Orthostatic Tachycardia Syndrome also known as Dysautonomia (PoTs). That’s one a hell of mouthful, right? A condition I might have, that I can’t even pronounce properly. picture for blog

Before I start, I am not going to pretend I am a medical professional or a scientist. I do not have extensive knowledge on the Autonomic Nervous System or PoTs. This blog purpose is to give you an insight into the chronic illness.

 

I believe the best video to explain the condition is What is PoTs? (YouTube, 2017)

 

A brief explanation of the condition here based on reading (NHS-U.K, 2017) is; PoTs occurs when the autonomic nervous system which cannot function properly. 

Autonomic nervous system?

” If this is the first time you’ve heard that, you are probably thinking what the hell is that”.

Let me break it down for you. The Autonomic nervous system controls everything your body is suppose to do without having to think about the action.  For example, breathing, sweating, digesting food and drink etc.  

When someone with PoTs sits or stands their heart rate increases to abnormal levels because the blood to their heart and brain decreases. Subsequently, this is likely to cause them faint or feel dizzy amongst other symptoms. Not everyone shares the same symptoms, and someone does not need every symptom to have PoTs.

“There are different types of PoTs, just to make things more confusing”.

 There are Hypo PoTs and Hyper PoTs,  which apparently even have their own sub-categories. I  will admit, I still know very little about the different types but I will try to give you a very brief overview.

Hypo means something in the body is running low. For example, someone has low blood pressure or not enough blood or enough oxygen.Hyper on the other hand is the opposite and everything is rocking high in the body.  For example,  high blood potassium or sodium.

pots

“The problem with PoTs, is you cannot see it – Around 85% of PoTs patients have been told their symptoms are only in their head (Dysautonomia International, 2014).

That is why it is not uncommon with invisible illnesses to live for years in pain undiagnosed or misdiagnosed.  Even when patients symptoms are taken seriously, they are  frequently misdiagnosed.  Misdiagnoses occur because of  a lack of awareness surrounding the condition – it was only officially recognised in 1993 (Stream,N.D).

PoTs is a bit like snapchat, both include filters. A Snapchat filter masks what someone truly looks like on the exterior. Meanwhile, in PoTS, skin is the filter that hides what is really going on in internally.

“I worry if I have PoTs – not about the illness itself, but how others will perceive it”.

I think it is cruel that skin can make someone appear perfectly healthy, when they are really fighting an uphill battle.   I have already experienced discrimination due to my EDS and I fear this could happened again if I become diagnosed with PoTs.

“My journey for a PoTs investigation began when I was diagnosed with Ehlers- Danlos syndrome III (EDS)”.

 

I was asked that famous question, “What symptoms do you have?” I took a deep breath and reeled of my list of symptoms. I stated in the past the following had happened;

  • I can’t bear standing up without being in pain
  • Chronic fatigue – I am always tired despite how long I sleep
  • I had episodes of fainting and a history of low blood pressure
  • I felt better laying down in dark rooms
  • Palpitations
  • I experience regular headaches and stomach pains and…
  • I can hear sounds others can’t.

 Ear-PNG-HD

Hearing things others can’t…

I feared being honest would sound like Harry in the Chamber of Secrets when he was told to follow the spiders and I would be rapidly carted off to a mental hospital. I didn’t know which was more alarming.

The fact I had been honest or that the doctor look back at me like this was normal. I quickly realised to her this was normal for an EDS or PoTs patient. The doctor explained to me that people with PoTs are more sensitive to sounds and experience the other symptoms I listed.

The rheumatologist explained what PoTs was, stated that it is common for people with EDS to have it and recommended I went for an investigation. I agreed and the process was underway.

 

To find out what happened next…

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COMING SOON: POTS: Part 2 -Referral to Investigation


Over to You

I would love to hear from you!

Whether you have found this post useful, know someone who has experienced PoTs like symptoms or has a diagnosis.

I hope you have a good day,

Morgan x



References

Dysautonomia International (2014). Dysautonomia International: 10 Facts Doctors Should Know About POTS. [Online] Available at: http://www.dysautonomiainternational.org/page.php?ID=180 [Accessed 22 Aug. 2017].

 NHS-U.K. (2017). Postural tachycardia syndrome (PoTs) – NHS Choices. [Online] Available at: http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx [Accessed 22 Aug. 2017].

Stream, C. (N.D). [Online] PoTS UK. Available at: http://www.potsuk.org/gp_guide [Accessed 22 Aug. 2017].

What is PoTs? – YouTube. (2017). Dysautonomia International 2016. [Online] Available at: https://www.youtube.com/watch?v=ch6ipV3M4yo [Accessed 22 Aug. 2017].

 

 

About Me

Uncategorized

me

Hi world,

To give you a bit of history on me. I am Morgan, a 24 years old Business Student at Oxford Brookes University diagnosed with Ehlers Danlos syndrome III at 23.

cropped-me.jpgBefore, we start you may want a brief overview of  EDS.

EDS’s are a group of rare inherited conditions that make connective tissue weaker*.

* In some instances, EDS can occur in someone without being inherited. Connective tissue is important to support skin, ligaments, blood vessels and internal organs. There are different types of the condition I will explore in another post. However, all types of EDS are affected by weak connective tissue and loose joints.

Unbeknown to me, my journey to illness began in the womb. Many ask me when EDS will end. The response is morbid. The truth is EDS will end when I die because it is incurable.

If you are one of the rare ones who has heard of EDS, you are probably wondering why I am writing this post. I can’t lie, I do worry each second I will dislocate my wrists or fingers. Yet, I still write.  Typically, my posts will not be this long. I just wanted to be completely honest with you from the get go.

“Although, some might consider me disabled I am not EDS – it is just a huge part of me”.

ME.jpg

It is not unusual for people to see an illness before they see a person.  With EDS, its the opposite.   You are only ever likely to see the illness if you know the sufferer well.. because on the surface it’s invisible.

“People don’t understand when I can’t do daily tasks”.

Due to the lack of awareness of it people have the wrong misconception that I am extremely lazy – even I believed this for a long time before the diagnosis.

“Unlike many other suffers of EDS, during  secondary school I never knew I was different”.

me crab

I made every excuse to get out of P.E because I was in pain but it did not work. I was told I was gifted at gymnastics, whilst I flew into the splits and was doing cartwheels across the floor. I  experienced subluxations and dislocations but I thought this was normal. Instead of speaking up about my pain, I turned my attention to being naughty. I got myself excluded more times than I can remember. Teachers thought I was attention seeking but really my fatigue was so bad, I just wanted to sleep.

I did not have a functioning life for many years“.

I scraped my GCSES but did not care because I aspired to be an artist. I enrolled in college when I was 16 and gain when I was 19 and dropped out both times. I preferred to spend my time drinking alcohol and taking  drugs to relax my body.

art

This put I in a downward spiral because when the substances wore off the pain heightened. As a perfectionist, I realized art was not the right career path for me and kept it as a rare hobby.

It became more apparent my body was weak when I coughed so hard I moved a disc in my back and landed myself into hospital. Despite this, for many years GPS would not accept I was in physical pain.

Are you sure you are eating your 5 a day?” the doctors asked.

I was sent to see CPNS, complex needs and CAMHS who described me as ‘mentally troubled’.   The hardest part of my journey is my parents were not completely convinced of my pain either.  If I dare mentioned that four letter word,  they would say ‘Here she goes again, she is having a Morgan Moment’ – alluding  an impulse of craziness.

“I felt like I had no one and became suicidal”.

Going to the doctors and hospitals were weekly chores.  I was always poorly yet, no one could find anything wrong with me. I thought perhaps after all this time the doctors were right and it was in my head.   So I attended Complex Needs, High Wycombe where I spent time with mentally ill patients . It was there  I realized I was not making up my pain.  Me and the other patients did not share any symptoms in common – yet I did not want to live another second suffering.


From then to now…

From time to time I still feel suicidal, but I have come a long way since I was 17. I enrolled into college again when I was 21 to do Business and completed the course. I drink alcohol occasionally but I do not take illegal drugs anymore. Don’t get me wrong, the temptation is still there but I am trying to live a healthier life.  My diagnosis has made this easier, with the support from my family and friends.

Me and my family a few years ago.

“By my own admission, socially I am unreliable”.

A lot of people  stopped wanting to be my friend.I never know if I am going to have enough energy to see my friends. Going out for a meal, or to the cinema takes me to the point of physical exhaustion.



University life…

I started University 5 years late compared to everyone else because I mentally and physically would not have coped.  Due to low blood pressure I spend a lot of time in bed. I was also diagnosed with Dyslexia, Dyspraxia, photo-sensitivity and a vitamin D deficiency.  I was told the course would be too difficult for me to succeed and to think of a vocational alternative. Through blood, sweat and tears I managed to prove everyone wrong and pass the first year.


Allergies, Intolerances and Me”…

I was born lactose intolerant but after a few years I was given the green light to drink milk again.  In hindsight, whether the intolerance ever went away, I am not  sure.  I developed OCD because each time I ate I would be sick or have the shits.  I was uncomfortable food caused me pain but I liked the fact I was super thin.

I was often mistaken for being anorexic“.

parklife.jpg

When I was 21 years old, I went into severe anaphylaxis. Shortly, after an allergy prick test confirmed I  had developed an allergy to nuts and gluten. The test also showed I was lactose intolerant.

In my head –  I was  a freak. I had never met anyone else with multiple food allergies.

nut

“Changing the way I ate was the hardest thing I have ever done”.

I am in love with sugar and I can’t really cook that well.. Living off processed TV dinners and comfort food was my safe haven. The task to change my diet, was almost impossible for me. Doctors became concerned I would die.

I began to see an Adult Nutritionist for months religiously, who was my rock. Without her, I would not be here writing this today.

 


Share the Love

I would love if you supported me and followed/ liked my new Facebook page.

I do not know if this blog will be a success or not- but I need a hobby for all the hours I spend ill in bed. I really want to use this space and start up a YouTube channel to discuss content on mine and other peoples conditions to  raise awareness.

I also want to provide support to anyone who feels they are alone.


Thanks for meeting me.

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Welcome

Uncategorized

Hello, random person.

Thank you for visiting and  welcome aboard my health train.

From Morgan.

This blog sparked from a famous Meme that I was getting tagged in frequently, as seen below.

meme

I found it very difficult to eat when I was diagnosed with food allergies and an intolerance in 2014.  Gluten and nuts  was all I knew, with lactose  for the most part. I kept thinking how I am meant to figure this out alone.

I wish  more information was readily available to make my life easier“.

In 2016, my world came crashing down.  I was then diagnosed with Ehlers Danlos syndrome III, Dyslexia and Dyspraxia in the space of two months. These revelations made my depression and anxiety heighten.

I am going to use space to;

-Discuss mine and others medical conditions and sensitivities to raise awareness 

-Provide information on how to identify symptoms

-Explore journeys to diagnoses 

-Give you tips on how to live a happy and healthier life.


I hope my blog will evolve into an online community that share my posts by finding them engaging and useful.

Want to know more about me? Click here.

     As a new blogging enthusiast, I would love if you showed your support and followed my new Facebook page.

 I am  happy to provide honest advice on any questions you have.

Lots of Love,

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