INVISIBLE BUT STRONG!

Hi my lovely followers. Apologies I have been MIA for a while!!! Unfortunately we have recently lost our baby after being really unwell during pregnancy. This is what has started this goal and to keep me accountable and help others on a mission to lose weight I will be blogging my weekly achievements.

Due to a range of abnormal blood test results my fertility specialist has advised it would be best if I lose 5-10kgs. My goal however has been to lose 15kgs to get back to 70kgs.

This week my progress has been sped up due to having a tooth removed so fasting for the surgery and now having to be on shakes and soups. I weighed in on Tuesday at 84.3kgs and this morning (Friday) I’m already down to 82.2kgs!!! 2.1 down with a whole lot more to go!

The plan? Due to all my other health conditions exercise will be the issue so most will come down to diet (I will be using the healthy mummy shakes so I’m preparing for pregnancy), yoga and walks around the block (or shopping centres haha just in time for Christmas shopping). So let’s see how we go as I aim to lose 15kg in 3months before we start IVF again in February.

So if anyone else is interested in losing weight with me drop me a line and we can keep each other motivated whilst we get rid of the excess fat to become healthier and happier versions of ourselves!

I thought I would make a post about preparing to see a new specialist.

It’s an emotional experience, the hope, the wonder, the excitement and fear. The mental preparation of trying to create a balance of hope and anxiety of having them not listen once again.

The best advice I can give in this area are as followed.

1. Gather all supporting documents, create (or contact me if you would like a template) a list of all your symptoms, what they feel like and when they started along with anything that eases or triggers your symptoms.

2. Allow yourself 15mins of worry time a day and set an alarm, think best case and worse case and how you will handle each. Once the alarm goes off move your mind onto something more productive.

3. Don’t let your previous experiences with Doctors pose on your next experience. Not all Doctors are arrogant no it alls… although there are a lot. Give the next one and the one after the benefit of the doubt as you need to trust them to be completely open and they are more likely to help and listen to someone open to trusting them then someone closed off and hostile.

4. Bring a list of questions and write the answers as you may forget to ask or what was answered.

5. Bring a friend or relative as it may help with nerves as well as give you the support and a partner or close friend or relative may be able to help you explain symptoms more clearly if they have witnessed them or add in details you may forget or not realise you even do.

I hope these tips help you, they have helped me when seeing my new specialists latest being my neurosurgeon regarding my suspicions of having a CSF leak after many previous doctors tell me it’s just stress, or it’s in my head. This specialist has actually listened and believes I have a CSF leak without my suggestion. Finally listened to and heard after many previously have let me down. I hope you all have the chance to follow these tips and obtain great care from the medical world.

Till next time, rest up and take it easy!

My heart so heavy, such a tangled web inside.
For so many reasons..yet I still don’t understand why?
I know what’s going on in my mind, yet my heart… no clue!
It’s the reason why I lay awake, I don’t know what else to do!
So many questions, so many unknowns to tick!
Like why so insecure, why so sick?
My heart sleeps heavy yet shines so bright
As my strength and courage continue this fight
In my shadows and deep within lay quiet but loud all my fears..
I question should I keep smiling or at last break down and curl up in tears?

My heart beats way too fast, like me it doesn’t know how or when to slow down!
I wish I wasn’t alone all day and could be just out like everybody working in town.
I feel guilt, I feel like a burden and have no known purpose anymore
All I know is each day is a struggle, I’m now insecure and oh so sore!

I may seem lazy to others, I may seem like a bore
Every little thing I do now seems like a chore!
My heavy heart please give me a rest
Because I’m just doing my very best!

The end

I’ve been working on this drawing for quite some time now adding to it every couple of days and although I’m still not finished I thought I would share as it inspired this poem tonight , I’ve named it
“Heavy hearts burn the brightest.. the exploding web of imperfection, that is out heart 💓 “

I hope this helps inspire others to write and draw to help work through the hardships illness throws our way! We are stronger than anything that comes our way, our heavy hearts always do make us shine brighter in the end!! 🌟

I remember when I used to finish a 12-15hr day at work and come home feeling to exhausted to make dinner so would chill and watch TV and order take out… that’s what I thought exhausted was, I was wrong!

Now I have good days and bad days and on my bad days the exhaustion is the worst. After just having two good days when I pushed myself to clean and sort our spare room I ended the day with multiple seizures at night then insomnia to follow through the night even though I was so exhausted I could barely stand.

Today now it’s so much worse as normal after good days. I’m so exhausted I can barely get out of bed, the very thought of needing to go to the toilet makes me tired let alone the thought process to gather enough energy and strength to make it 5m there then back without collapsing and having a seizure, the pressure in my head hurts so much more when standing that dealing with the pain of being upright is just too hard. I tried watching TV this morning but that was just too loud and took too much concentration too… I never you I could be to exhausted to watch TV!!

Food is too far away and the idea of getting up is just to complex, as I know how much pain it will bring, how much energy to make food not to mention the process my body has to go through to eat and digest it. So I don’t eat until it’s a necessity as hunger is easier than the struggle I need to go through to eat.

When this exhausted all symptoms seem to flare, even on medication my heart rate jumps to 135bpm just on standing, being upright can bring on a seizure, the headaches are 10x worse that my head feels like a giant heavy water balloon that’s about to explode as it’s so full, my heart skips more beats, my muscles ache everywhere, I get short of breath just by walking a few metres and my eyes strain over the easiest of things.

I go through this after each good day that I push my self even the tiniest bit, but I still do because on those good days I feel like the me I used to be, the me I have been grieving and having 2-3 bad days in a row are worth it to have 1-2 good days! Because my good days I feel worthy, i feel useful, I am happy and… I can get things done like washing and shopping, the daily things that any Healthy person can do easily … and accepting that that’s pushing myself, well I haven’t come to that acceptance yet.

So I now have an understanding on what real exhaustion feels like, I would give anything not to know as it’s absolutely the worst. When breathing is too exhausting you know your chronically ill! So when you have bad days like mine today, know your not alone, be great full for your good days, follow your bodies needs on your bad days, if that involves staying in bed all day like me today just do it! Your body needs it as it works so much harder than the average healthy person as it’s hosting a daily battle inside! Be good to yourself, you deserve it!

Stress can wreck havoc on anyone’s body at any stage healthy or not, it’s just what it does and so many doctors do just jump on it as a diagnosis as I’ve previously written about. But today I wanted to write how it affects someone with Chronic illnesses.

Currently someone from my past has come across my blogs, someone I’ve made it clear to that I want nothing to do with. Not knowing how he found me or why has caused me to stress more than I normally would, it’s sent all my symptoms into a flare as others in the same boat would understand!

When faced with such illnesses you lose the ability to control your thoughts, depression is a side effect of many medications for chronic illnesses which I do blame for the loss of control of stress as I was always so happy prior and had more control, I’m not depressed but the lack of control is definitely not great either.

My seizures can be triggered by stress, tachycardia and irregular heart beats happen more so when stressed causing even more symptoms or the same symptoms just worsening…. I don t know which is worse!

It makes recovery time longer, every day seem harder and every symptom more unbearable!

So please if you know someone with chronic illness, ask what you can do to ease their stresses, do they need a lift or someone to talk to etc. If you suffer from chronic illness like me, take a deep breath when needed, find a stress release that works for you whether it’s over riding your thoughts with positive ones, yoga, breathing exercises or distraction (that works best for me, puzzles or art are great) and lastly if you are the person from my past that has found this blog, send me a message that you’ve read this, how you found me and that you understand that you’re only making things worse for me and that you will stop reading my blogs, and will stop looking me up and will just back off forever! (It’s been 13yrs!)

Once again thank you to everyone for your ongoing support it’s been amazing, I created this blog to help others going through similar issues and the messages I’ve received knowing I’ve made a difference is why I do what I do! You’re not alone and I’m here to help in any way I can. So please feel free to share any concerns or questions or ask what you would like my next blog to be about! Thanks for reading!

Outside I may look all pretty, outside I may look calm

But on the outside you can’t see my own body causing me harm

Outside I look happy, on the outside I hold a smile

But on the inside it feels like I’ve just run a mile

My heart is always racing and going way to fast

While Doctors dismiss saying “ it’s due to stress from your past”

I know it’s not stress because I know MY body best

Which then made me feel better when proven on a test

But each new diagnosis, comes with a new pain

With that, can only come a new life lesson to gain

For everything happens for a reason, this much I know to be true

But knowing that doesn’t help me to know how to feel or what to do

No known purpose, no way to purposely fill each day

Who I once was, now changed in almost every way

Days now filled with chronic pain & hope some days lost from fears

Worrying, hopes crushed & insecurities ending in tears

Some days aren’t so bad, then not over doing is the challenge at its best

Yet most days are so bad and painful, that all I can manage is Netflix & bed rest

The hardest part of this life, are doctors that are mistreating and condescending

That’s why we have to self advocate, for our bodies we are continually defending

Otherwise we are lost to misdiagnosis & wring medication

These doctors need to have constant empathy & compassion education

They see us on the outside, when the red to look deeper

As they are paid to be the illness and answer seeker

Although having an answer helps a lot, it’s also after care we need to know

To which way our diagnosis can end up, which way our health & mind can go!

The downside to it all is our health changes so fast

That all we can think of and want is now in the past

We start losing friends when our life gets to complicated for them to deal

But shows who your “true friends” are… or maybe that’s just how I feel?

All I know, is that I wish this was a bad dream & that this life isn’t REAL!

I remember getting an ordinary cold before all this and feeling like I was on deaths door and how I missed being able to breath or smell properly… and that was only after a few days! I would never of and could never of imagined life changing so much that a cold would seem like nothing and that every day would become a challenge but it did, and now I just have to accept it although still challenging it!

It’s the constant battle of having to remain in control of your mind set, as negative spirals can easily get out of hand, but so can hope and positivity and one will generally lead to the other. So fighting to keep a balance is a must although a lot harder then expected.

It’s a battle of challenging yourself so you progress not decline but not pushing yourself so you make things worse ( still working on this one as I lay injured on bed rest from causing more damage )

It’s a battle with Doctors taking you seriously and fighting to be heard and treated with respect.

It’s a battle against the population and the discrimination and abuse for not “looking sick“ and having to feel like we should explain ourselves when faced… although it’s nobody’s business! We are treated like we are lazy when it takes us 3-10x more energy just walking then the average healthy person! No wonder why we can’t clean or work often if at all! If only people understood how it feels to live in our body for even a day!

It’s a constant battle of finances, everything costs so much but yet we can’t work so have to rely on our partners or the government payments which then adds guilt and more discrimination. Not to mention the shame of having to ask how much each test or appointment will cost so you can see if you can get enough together or have to go without till you can afford it and live longer in pain!

It’s the emotional battle of grieving the loss of who we once were and the things we can no longer accomplish, the loss of identity and having a purpose in life… the career, the future plans that have to change, the stress of deals with each symptom on a daily basis and the stress of each new symptom and how to handle it. The stress in general of all the above would break most “normal” people!

The toll that chronic illnesses have on relationships, romantic , family or friends. It’s a battle within of what to share and what to hold back! Losing people who you thought cared and feeling like a burden or a negative Nelly when opening up.

The battles we face on a daily battle is astonishing and horrible! So if you’re reading this and you’re lucky enough not to be faced with chronic illness please understand what we go through before you judge someone with chronic illness as there is a lot going on within…. or just every day people on the street, you have no clue what’s going on inside.. because we don’t “look sick”!!!

If you’re reading this and like me are facing daily battles due to your illness…. please remember… YOU ARE STRONG, BRAVE, FIERCE AND TOUGH! Hang in their, keep putting up the good fight as each battle won is extra strength to help you have the determination to win them all! But also know it’s okay not to be okay and to ask for help when you need it as we often do because YOU DESERVE IT!

Take it easy y’all! Xo

I often look back on how everything went from so good to when it all went down hill and how I wish I had been told what life was going to be!

I wish I was told that having one condition of the autoimmune nature would mean that there was a good chance it wasn’t going to just stop there, maybe then I could of been more mentally prepared! I wish I was told not to push myself on my good days or it would take anywhere up to a week of hell to get back to my normal hell rather than having to learn the hard way and had been given tips on how to stop myself from pushing myself as it’s so easy to do.

I wish I was given the option of treatment or told who specialises in my conditions not just left to deal with it on my own and not have any of it all explained. I wish I was told how bad it can get on bad days and how to manage. It’s only through my own research and the words of others I’ve learnt advice on what to do during a flare, things I wish I had known from the start!

I wish I was listened too, believed and made to feel that everything will be okay! I wish I was shown compassion and empathy instead of judgement.

I wish I was told that outsiders would judge me as I look well but am far from it so I could prepare to deal with the stigma “that I do nothing all day when I should be working” and given the advice that a councillor would be of great help in dealing with the diagnosis and the mental exhaustion that comes with it.

I wish I was told that my mind would become a maze as I live each day alone with my thoughts, and how to overcome living inside my head!

I wish my doctors made sure I was prepared for the financial burden being unwell would put upon us. That there would be many costs for ongoing scans, regular specialist appointments (that cost an arm and leg), medications, walking aids and devices to help with everyday life!

I wish I was told to prepare financially as I wouldn’t be able to work or drive if/when things got worse and how to prepare myself mentally when feeling like a financial burden on my husband (although he assures me I’m not, it’s how I feel inside). I wish I was prepared for my independence to be taken away without choice!

And I just wish I knew what life would be like, I wish I savoured every moment before becoming ill more, before it was taken away so suddenly!

Doctors seem to just diagnose and expect us to know what will come or do the research ourselves (which then they ridicule us for) or think that due to the symptoms we first have we know how life will be already! Most illnesses generally progress from how they began at the start! I know mine has especially more so since having new symptoms and then new conditions. No one states, “watch out for….. as these are symptoms of conditions that may happen due to having……” we aren’t warned things will get worse before they get better (if they get better)

No one asks about the mental health of people living with chronic illnesses and daily pain! Why? Don’t we need it most? Most are too shamed to speak up, it should be regularly offered!

Doctors need to take their time, explain conditions upon diagnosis, explain what is to come or what could come up/warning signs for other pre disposed conditions, how to deal with it, who to turn to, and give support throughout!

Our medical world needs an upgrade! It needs compassion and it needs understanding!

One of the many parts of living with a chronic illness, is the isolation. Although it’s not something we want, it’s just another thing this wicked illness does to us, it takes away our energy, our strength and our health when we need it most. Plans made weeks in advance end up canceled as we can barely get out of bed let alone get all showered and dressed up, we don’t have the energy to fake the smile and good health that we look on the outer to others. We get the reputation of being a bad friend, when friendship is all we want, we want the outings, nights out our bodies just don’t agree.

The more we cancel, the more friends we risk losing but it is a test to see who is a true friend and who is only with you during the good not the bad.

The days are lonely and hard to fill as being productive is hard and outings seem nearly impossible. Netflix becomes a friend and you keep up with your friends via Facebook. You find yourself wanting more in life and feeling more and more isolated each day. So very much experienced in this area I felt like I would put together a list of ways to be less isolated whilst not putting yourself under strain.

1. Phone calls with your friends 3-4 times a week
2. Skype chats so you can stay more up to date with friends and family (more personal touch & seeing others faces will help you feel less alone)
3. PJ parties/movie nights at home! No dinner prep needed just put some pop corn in the microwave. Little energy needed, if your already watching Netflix make it a group activity!
4. Online games with chat. Keep your mind active whilst socializing online, make resting up more fun too!
5. Enjoy each moment with friends and family, savor each moment so it lasts till your up to the next! Take photos & videos to remember each moment.
6. Take vitamins and supplements to help give you more energy so you can have more time with friends
7. Use a walking aid to help get out of the house for small outings at a time.
8. Engage a councilor, this one is not so easy for most to open up to but rest assured having someone to talk to about everything in your life will help you. It will give you an outlet for when your down. This will help your friendships thrive if we don’t lay ALL our negatives on our friends, as this can way them down over time. I’m not saying don’t tell your friends how your feeling, just don’t ONLY give them the negatives. A councilor will help you find the positives to talk about too. Keep conversations balanced!

I hope this helps and if you have any other tips to share please leave a comment below!