Suffering in silence, Time for help

Update: Last year was the first time I spoke out. I felt ashamed as well as embarrassed.

That was before over 100 of you reached out with your own struggles and experiences. 

I no longer feel alone. I feel empowered. The support I have received has been incredible - glowing!

For the past 12years I have been a sufferer of several Chronic Illnesses that are causing repetitive physical side effects.

*Autonomic Nervous System Disorder
*Sympathetic Nervous System Dysfunction
*Fibromyalgia
*Widespread Chronic Pain
*Severe Anxiety
*Chronic Stress 
 
Apparently it's my Autonomic Nervous System. I have no control over it.

It is caused by stress.. whether I feel stressed or not I will be physically ill every single day.

*Keep an eye on my Blog to find out about each one of my illnesses in more detail - I will be writing about it soon.

https://glowthinksoutloud.wordpress.com/

It all started when I was 16. I moved out of home and things were tough. I was in an abusive relationship.. he had a lot of issues. I changed as a person pretty quickly. I was just too young to know what to do about it.

After also experiencing a few issues as a child and as a teenager I somehow attracted controlling abusive men.

*Keep an eye on my Blog to find out more about what happened with my ex boyfriend - I will be writing about it soon.

https://glowthinksoutloud.wordpress.com/

Led on the floor late at night I would experience the worst, most excruciating stomach pains.. Like level 9 pain!! The doctors there and then said it was IBS and I needed to learn to live with it. 

I thought to myself back then, how the heck do I learn to live with it?!

I stayed with him for another year - a year from hell. Moved home a total of 4 times together. The pain followed me everywhere.

Half a year later I met up with Mr Glow. We were in the same year at the same school but we'd never spoke. 

I moved in with him pretty quick - 2 months in - it was a whirlwind romance and it still is 10 years on! Everything i'd ever wished for in a man.

*Keep an eye on my Blog to find out more about how Mr Glow and I met and how our last 10years have been - I will be writing about it soon

https://glowthinksoutloud.wordpress.com/

I was trying everything at this point to ignore the stomach pain. . over the counter meds, prescriptions and eliminating things out of my diet. Nothing helped.

I then started to go through a very stressful time at work. I had just turned 18 and I was working in a high volume call centre. 

*Keep an eye on my Blog to find out more about what happened at my job before I became extremely ill - I will be writing about it soon

https://glowthinksoutloud.wordpress.com/

On top of the stress, I couldn't get up from my desk without experiencing what felt like vertigo and nausea accompanied by panic.

The doctors had no clue what was wrong with me and referred me to the Ear Nose And Throat Department of the Hospital. They laughed when then saw me and said it's nothing to do with my ENT I need to be referred to a Gastroenterologist.

Now, you can imagine how long I have to wait for each referral, blood test and invasive tests. All coming up clear.    

Then I get what feels like a sickness bug. I couldn't keep solids or liquids down.

Unlike a sickness bug this never stopped.

At the time I had a full time job, living with my new partner, eating well and healthy. Then one day all of sudden the following started to happen to me every day..

I'd wake up and have an immediate urge for the bathroom, I'd be in there close to or over an hour, I'd be out of the bathroom for no more than 20-30mins before I was back in the bathroom again for over an hour. 

By that point I was left in excruciating pain, exhaustion and the last thing I could do was eat. Still in and out of the bathroom but no longer physically ill. I'm struggling in pain and discomfort. This keeps happening until late afternoon.

By the evening I had no energy or appetite but I always attempted an evening meal - of which I could only manage a few mouthfuls before my stomach felt to uncomfortable, full and painful. I'd then spend hours pointlessly in the bathroom in pain, uncontrollable belching, heaving and vomiting.

I lost 3 and a half stone in 3 months at 18yrs of age.

It took years for the doctors to diagnose it, including years of being their guinea pig for pharma. Nothing helped. I just suffered from the side effects of the drugs as well as them destroying my stomach lining and giving me ulcers.

Mr Glow would spend hours on the phone at night to NHS Direct both googling all of the possible reasons I was being uncontrollably ill.

My GP sent me up the hospital to have salt water administered many times because I couldn't keep anything down and was at my lowest weight of 6 and a half stone.

Years later the doctors and hospital said there was nothing else they could do for me. I refused to leave the doctors office and cried 'refer me back to the hospital then' Dr replied 'there's nothing more we can do for you, we've tried every type of medication, you need to seek alternative help, it's in your head.'

I couldn't believe what I was hearing. I thought:

I am physically ill everyday, I cannot eat or drink, I'm at my lowest weight under 7 stone and the doctors can't even help me. How can it be in my head, I'm not making it up, I'm evidently physically ill, how can it be in my head??

After giving up on any hope of a future I spiralled into a dark depression. I had no friends, a boyfriend I pitied, a family sick with concern and a job with a handful of disciplinary's for absence.

I shut myself off from the world. I thought, how is it in my head?

I then spoke to my mum and went back to the doctor. He booked an emergency mental health assessment where the assessor interviewed me for what felt like hours, deep questions about my entire life.

She invited me back and explained that there's a nervous system that I have no control over and whether I feel stressed or not it's like a switch turned on one day and I cannot switch it off without retraining the brain with something like cognitive behaviour therapy. The therapy that is used for post traumatic stress PTSD, which the mental health assessor indicated I was suffering from but at the time I refused to hear it.

This is when and where I learnt that something psychological can have a physical effect on you!

The reason for it happening to me at this time of my life was unexplainable, I couldn't be happier with my partner Mr Glow - it was my previous life that troubled me..

The mental health assessor explained a trigger can make it switch on at any time, even 20 years after an incident without warning.

She prescribed me with some antidepressants to try and control the nervous system and pain but I'd already tried both types of antidepressant, all antispasmodics, anti inflammatories and a lot of pain relief.

My body rejected everything and was suffering from years of a cocktail of medication on an empty and angry stomach.

I had to make a decision..I stopped all medication. 

Pharma didn't help, didn't even touch the pain, they carried dreadful side effects, sometimes leaving me wishing my life away.

The doctors couldn't offer anything they hadn't already offered, somehow I had to cure myself or at least get to a point of where I can manage it.

I applied for CBT cognitive behaviour therapy. It was intense but I wanted to do it. I attended a few meetings, after each meeting I'd be in more of a state than before I went in, all of my symptoms would flare up for weeks at a time and I couldn't make 95% of my appointments because I was too ill to leave my home.

Again I had to give up, I couldn't be helped or help myself.

I only had a hot water bottle and anything natural I could get my hands on to get me through ridiculous levels of pain. I spent years being sick, not being able to put solid or liquid past my lips without hours of consequences, being sick, uncontrollable belching, excruciating pain.

It may have taken years before anyone could tell me why I was being ill and even now I can barely get my head around it but the important thing to remember is I have the information so I can do something with it.

I started to research all avenues of natural medicine. To this day I haven't stopped. I am fascinated. I proudly and naturally treat my Chronic Illnesses.  I have been Pharma free for roughly 5 years.

*Keep an eye on my Blog to find out more about my natural daily routine - I will be writing about it soon

https://glowthinksoutloud.wordpress.com/

I broke my arm in 2013 which took two years to heal. For 1 year I couldn't use my left arm, wrist, hand or fingers. The broken bones had squashed and stretched my radial nerve. The hospital left me in that state for a week before they operated - adding time to my healing process.. Fools! 

I woke up on my 23rd Birthday to a Morphine button in my hand after being operated on the night before.

A 12inch 10hole metal plate in the top of my arm down to my elbow. Protruding because my arm is so small and the metal plate is so big.

After the operation there was no guarantee I'd ever get movement back so when I managed to lift a finger a little under a year later it gave me the strength to look forward to the next day and to the road of recovery (for my arm at least).

When I had full use of my fingers I was so happy that I could type again, something I was always good at. I dreamt of being able to get back to my old life of earning money, going to work and being normal.

For the next two years I was determined to continue to get my life back, no help from doctors or pharma, just me.

*Keep an eye on my Blog to find out more about how stress and anxiety basically paralysed me and my daily fight against it - I will be writing about it soon.

https://glowthinksoutloud.wordpress.com/

I started going to the local shop once a day. It took everything out of me to get myself ready and to get beyond my front door.

After the death of my grandad I committed myself to seeing my nan once a week. I couldn't get to hers until late afternoon, early evening because it'd take me that long to stop being repeatedly ill and build up the courage to leave the house.

I then committed myself to Volunteering at a Girls Youth Group once a week with my sister and mum.

This gave me so much joy!

Whilst I was there, it didn't matter what was going on in my life, I would feel joy. I was good at it so it was self rewarding.

Regardless of all of this I still felt like my life would be nothing more because I could barely cope with what I was doing, which was next to nothing. I thought:

No job will take me, I will never be reliable.

A couple of years went past of trying to stick to a routine of my nans and the youth club once a week, every Tuesday. It was disheartening that despite all efforts I couldn't get out of my flat until late afternoon. But I learnt that once I was out of the comfort from my home I wasn't physically ill.

This confused the 'glow' out of me.

This was the wake up call I needed to understand it is in my head, it is psychological. How on earth can I control something so random.

I kept testing and pushing myself. Setting myself little challenges like walking to the library or getting myself out of the house earlier than the day before. 95% of failed attempts at times would go down to 80% failed attempts. I was happy with my results because it showed at times I was gaining control.

But it wasn't enough, I was living a vicious circle of pain, sickness and uncontrollable anxiety. I couldn't allow this to be my life or my partners life. We wanted more. It's the only life i'd known since becoming an adult.

So I took an almighty leap ..

I found a part time job literally opposite my front door.

All I had to do was leave my front door, cross the one way road and straight ahead in through my works front door.

It was a small quiet team and I could take a break anytime I wanted and it was less than 16 hours a week no more than 4 hour days to begin with.

This was a huge learning curve in my journey so far!

I managed to turn up to my job every single time I was due in. I wasn't stuck in their bathroom the entire time I was there. I just could not believe it. I was violently ill before and after work for hours but not at work apart from being in pain.

I couldn't see myself doing more than what I was doing because although I was surprising myself by doing it I felt extremely worn down, a second away from breaking point at all times.

Every little thing I did was actually a huge task on my body, something as small as washing up or doing my hair would leave me not wanting to move for the rest of the day.

I was ill and weak physically and mentally with my arm and the impact from my daily chronic illnesses. I was also still trying to figure out why this was happening to me and how to get past it or work with it.

I then asked for more hours at work, I was going to shock my body back into action. I figured from my experience so far, that if I can get myself out in the morning I'll be ok. More than anything I wanted better for myself and my partner.

*Keep an eye on my Blog to find out more about the struggle we've experienced with money because of my health and the situations we've been left in over the years - I will be writing about it soon.

https://glowthinksoutloud.wordpress.com/

They couldn't give me more hours apart from a whole day on a Saturday once a fortnight. This day I used as a test to myself, I convinced myself that if I can do one whole day at work I am capable of working full time again like I did when I was 18.

I managed it, I was messed up for a couple of days after but I would always tell myself:

It doesn't matter what you do, you'll be ill anyway!

Strangely this helped me through the times I wanted to give up. What would giving up achieve, I'd be ill regardless, choices were to be ill whilst trying to live a better life or be ill and struggle.

I had to make one of the biggest and most conflicting decisions in my life.. Get a full time job.

Huge part of me said I'm fooling myself - how can I be so stupid - I spend more of my day in the bathroom than anywhere else - who's going to hire someone so unreliable? I kept fighting the negativity and applied for a few jobs.

Signing on at the agencies was a huge deal to me, strange as it may be, something so small and simple to you is a huge challenge to me.

I got a call to start a job, no interview required and if they like me they would take me on permanent.

I couldn't believe what I'd done, what I'd gotten myself into, setting myself up for failure and I could lose so much.

Fighting back the negativity I convinced myself I can take it a day at a time, I reminded myself of all of my accomplishments that got me to this point.

I've now been there a year and a half, full time permanent. Like my dreams have come true.

They don't know what my life has been like or what I suffer with every day.  I did not disclose my medical information when I joined the company. The reality is a company will not take that risk with you if they have other options so I'm staying quiet until they need to know.

I have amazed myself. 

My concern is proving to be this.. I'm terrified of losing it all. I haven't got a back up plan. I am still physically ill everyday.

For the first year I managed to sit at my desk for the 8 hours but I couldn't eat a thing. Something I battle with and make great effort with every day.

An eating disorder did not make me ill but being ill has caused an eating disorder!!

My illness controls when and what I eat and that is not very much or very often. On top of that I no longer can stomach anything that is frozen, tinned, processed etc..

That's a result of several years of research and educating myself on natural health. The doctors can't help and the help they did provide only harmed me. Educating myself is all I can do.

There's a lot of information out there about natural health, I wish I'd started there before dealing with pharma.

After a year of running on nothing but coffee whilst working full time in a busy and demanding role, it was evident. I wanted to give up everything. I couldn't go on as I was.

By Tuesday I felt like I was dying and I still had the rest of the week ahead of me, the stress, the pressure and anxiety was unreal. I had to take time off as holiday, because I didn't get sick pay, as well as quite a few sick days. 

I knew I was doing amazing compared to before but it wasn't good enough. I'm wasn't reliable therefore I could lose my job.

So I vowed to make every effort to eat. Regardless of how I felt, how stressed I was, how sick I felt, how tired I may be, this year I have tried to eat something every single day at work.

Although, I feel like I'm ready to fall into a food coma after the smallest portion and struggle to get through the afternoon. I am in pain and uncomfortable but I am getting used to eating at lunch time.

Has it made my energy any better? No.

Has it made me any stronger? No.

Has it made a noticeable positive difference? No. 

Am I happy I can eat lunch now? Yes!

*Keep an eye on my Blog to find out more about what I do/don't and can/can't eat - I will be writing about it soon.

https://glowthinksoutloud.wordpress.com/

The reality is I'm scared because the chronic pain is actually becoming unreal and all I have to treat it is natural resources. I'm still in pain all day every day, just different levels of pain. I'm still in the bathroom for hours after work.

I then may or may not scrape together the energy to make myself dinner. If I do cook I may or may not find the energy to eat it. After dinner I feel awful. Like there is absolutely no way I am getting back up. I always fall asleep in my chair. 

I breakdown most nights because I can't take this anymore.

After all these years of being physically ill every day as well as suffering with severe anxiety and chronic stress I'm finally starting to crack.

My bones and muscles hurt so much. I'm so weak. Everything I do, even doing nothing hurts. I haven't got the energy to fight the negativity or to find the motivation.

It's really difficult to keep picking myself back up. Sometimes I feel like I'm coping for a few days or a few weeks then I find myself in more pain, more ill and more weak.

I get to the stage where I'm too sick to eat and to weak to try, especially after a working day. More than anything I know how to be healthy but it's impossible to do in my situation.

Any time I do have off of work at home I am ill the entire time. This includes evenings, weekends and booked time off. It is exactly how I mentioned at the beginning. So you can imagine how I feel when I return to work after my time off.

We are both working as hard as we can and paying off the debt that accumulated in the time I was too ill to work. I also have an overdraft I cannot climb out of. because I do not get paid enough. I've had too many sick days and I've used up my holiday to recover.

I'm not happy in my current job. As I said, the pay is terrible. I just accepted it at the time because I needed a full time job. It's gotten to a point where I feel like I cannot breathe. I hate this life. It's honestly a daily battle.

However, I will not let the negativity defeat me. I am looking and applying for a new job. I will do my best to jump any hurdle I face because of my Chronic Illnesses.

*Keep an eye on my Blog to stay up to date with my progress on my new journey - I will be writing about it soon.

https://glowthinksoutloud.wordpress.com/

I cannot imagine that I have made much sense but it is next to impossible to put into words this dark messy hole I call life.

I'm at that age where I need to stand on my two feet so hiding away at home won't get me anywhere. This is my life.

I do not rely on anyone for help but I also need to accept help if there is any and offer help to others by sharing my story instead of living my life suffering in silence.

I don't know another soul who goes through what I go through every day. It's messed up and hard to explain so I tend not to explain.

People assume I'm rude, lazy, antisocial, strange. I'm private and I still find it embarrassing to share this information with people I personally know.

If I find it hard to get my head around it I don't expect others to understand, I can only hope and pray. 

I can continue my daily battle against Chronic Illnesses knowing I am not alone and that sharing my story not only makes me stronger but can and will help others.

Thank you for reading.

*Keep an eye on my Blog to find out more about me and my journey. I will be uploading my first original Go Fund Me story there, so you can see how I have progressed. I will also be providing more information about each one of my Chronic Illnesses;

https://glowthinksoutloud.wordpress.com/

#Glow #ANSD #ANS #FMS #Fibromyalgia #Autonomic #NervousSystem #ChronicIllness #ChronicPain #ChronicStress #Stress #MusclePain #Abuse #Awareness #ShareMyStory #ShareYourStory #Support #WordPress #Update #OneYearLater