Feels and Pain

I’m having one of this weeks where I’m all emotional, everything makes me want to cry and I want to hide away from the world.

Obviously this is the perfect time for my psychologist to go on holidays. So guess what blog, you get to listen to me.

To start with. Feels. All the feels.

For approximately 7 years I have actively hidden away from letting people close to me. I haven’t dated, I’ve kept any male who could hurt me at an arms length, I haven’t put myself in any situation where I could meet someone.

I didn’t want to get hurt. I was protecting myself.

My walls around my heart are really might.

And now someone who I never expected has caught me off guard and I’ve got the feels. I don’t know what to do. I’m scared.

This person is amazing. He listens, he cares, he accepts me for who I am. He encourages me (currently trying to encourage me to sing. That is a hard no!), makes me laugh, he makes the world seem happier.

He makes me feel emotions and all that comes with them. I giggle like a school girl when the cute boy walks past.

I didn’t plan for this to happen. How did I let this happen.

What do I do?

This isn’t part of my grand plan for life.

If he doesn’t call, I get worried. I miss him if we don’t get to talk.

What is this craziness.

I honestly don’t know what to do. So what have we all learnt is my default, I cry.

So this whole new barrel of emotional torment, is coupled with increasing levels of pain, discomfort and numbness.

I’m hoping it’s just a case of pain being bad so I’m not sleeping well so I’m just tired which is why I’m all emotional.

But yes, I’m in pain. All the nerve pain with a side of migraine.

My body hurts all the time. It’s a constant all over ache. With sharp pain in hands and feet. It’s exhausting and debilitating.

For those who haven’t experienced chronic pain, I honestly wouldn’t wish it on my worst enemy. You can’t escape pain. Medication takes the edge off, but as it wears off you’re reminded pretty quickly that it’s there.

It doesn’t go away.

I have the bedtime of a tired toddler. If I don’t put myself to bed early, I end up wanting to cry, getting angry at myself and frustrated at everything.

Pain makes my anxiety peak. Which is hard.

Especially when I have all the above mentioned feels and I’m already overwhelmed with life.

I’m off for another hospital stay in 12 days. This one is the best but worst.

Best because I end up out of pain after constant pain killers for 6 days straight. I’m drunk and have no filter for 5 of those days. I am hilarious.

Worst because the food is terrible. Like barely inedible. Grey chicken should not be served up, vegetables shouldn’t be cooked to the point of being tasteless. There were days that I couldn’t stomach whatever it was they plonked in front of me.

I get hung up on food in hospital.

Being a patient, you hand over so much control. You are at the mercy of other people for the whole time.

Food is the one thing you have to look forward to, it breaks up the constant monitoring, nurse visits, doctors popping in whenever, constant noise. When the food is shit, it makes the stay longer and harder. Nothing to look forward to; the dread of yet another tasteless meal.

I’ve never been to prison, it would be interesting to see who gets the better food.

My normal hospital, amazing food, great staff. Love staying there.

Pain hospital, awful everything. However I get pain killers so it’s the trade off I guess.

Oh did I mention it’s a private hospital as well? Yeah, disgraceful for what it costs a night.

So that’s where I’m at right now.

Feels and pain.

Paralympics are over

Well, the Paralympic dream is over. My Neurologist put her foot down and advised that medically I was doing my body more harm than good. She was originally on board and happy to support, however the deterioration over the past few months has meant that we have had revise our plans.

We moved on from Paralympics to ‘Health Wellness and Rehabilitation’. The Millennial and I now look at ways to make our lives more in line with our new motto. The appointments with all the people still continue. Physio still helps with reducing muscle and nerve pain, OT works with adjusting my life to help with independence (there are SO many aids out there to help with all the daily tasks), we even went to the supermarket so I could learn how to get some groceries myself! Learning to use my wheelchair has been so interesting, so many little manoeuvres I’ve had to master to get around the place.

Exercise Physiology has had the biggest change. No longer are we doing the big weights to kick the Paralympic goals, we are focusing more on building muscles for easier wheelchair use, keeping muscle strength in the limbs for maintaining functionality. A lot less stress on my body and most importantly on my nervous system.
The next 12 months are all about maintaining functionality and improving where possible. It’s all about Rehabilitation.

Being healthy and well is important for the average person but having a chronic illness it takes on an even more important role. I’ve learnt the hard way not to push your body to the limits, working to the point of exhaustion just to prove I could do it. I didn’t have a life; I was just existing.

Life is meant to be enjoyed, little pieces of enjoyment and happiness each day to make life worthwhile. Some days are hard, these days provide us perspective to appreciate the good. Why make your life any harder than it has to be? Make changes to improve your life if you are finding each day is a hard slog. What is making you unhappy, what is stressing you out, look at what you can do to improve the situation. I’m no wellness coach, but I can definitely prove that hard decisions being made can turn life in to a happier adventure.

Maybe I look at life too optimistically, I guess I have to on some level. There could be a lot of darkness to consume my life if I let it, but 90% of the time I don’t let it. I have my bad days (the millennial calls them Salty days) but we get through them. Tomorrow is always a new day on salty days!

Even on bad days, there is always coffee to bring happiness and enjoyment

Pen-Pals and friendship

You may remember I mentioned writing to a pen-pal a few posts ago. Well he did write back. I’ve never been so excited to open the letter box than I was that day, and all the other days I’ve received his letters since.

I reached out to someone from a totally different life, I believe the power of friendship can play a role in shaping someone’s future. My friends are crucial in my life, so I wanted to reach out to someone completely unknown to be a friend. It costs nothing to be kind and offer friendship to someone.

It was like we clicked straight away. The first letter from him made me laugh, I still have this letter and every other letter I have received since. As mail takes 4-6 weeks to arrive from the USA and we got along so well via letter, we upgraded our friendship to via phone pretty quickly. This guy is an amazing human. He is smart, funny, ridiculously good looking and kind-hearted. The life he has led is completely different to mine, yet we still have so much to talk about. It goes to show that just being human means you can always find similarities, shared interests and friendship.

Time differences does make talking on the phone difficult at times, but I look forward to the calls every day.

Talking to him has definitely been a shining bright light of happiness in 2020. Writing that original letter back in February definitely has been the best decision, I have a new friend who wants nothing but friendship from me. We don’t talk about my illness, we talk about life, science, books, religion, all the things friends talk about. We accept each other’s point of view, even if we don’t always agree.

When COVID is over, life goes back to some kind of normality and international travel is available again, it is a goal of mine to visit him in the US.

Be kind to one another.

Washing Machine Effect

2020 is really proving what it’s like to live inside front loading washing machine.

You can see forward, you are doing all the right things to stay balanced and centred, then a sock hits you. Balance and centre again, undies hit you. Straighten up and get yourself sorted and bam again smacked with another item in the wash.

Being chronically ill, you expect the occasional sock to hit you, even undies, maybe even a singlet too.

But f#ck me when is this cycle going to end.

Whoever put this load of washing only put heavy and hard things, with a few socks and undies. Whatever is in this load of washing has to stop hitting us.

There are only so many times one can pick themselves up from the bottom of the bowl and centre themselves to continue to look forward.

Being a front loader washing machine means we have no option of ending the wash early. We must see the cycle through.

I hope it’s only soft socks and undies for the rest of 2020.

#washingmachine #socksandundies #2020 #chronicallyill #mentalhealth #cidp

COVID and the selfish

As we are in the middle of covid 2.0, the second wave of the deadly virus, the news is showing more and more acts of selfish behaviour.

Why are people still going out when they are sick? I don’t understand what could be so important you need to leave your home and go out in to the community when you have tested positive to Covid. Are you that full of self importance that the impact on others just doesn’t even matter?

I write this as I’m sitting at home. In iso life again. It’s self imposed for now.

The behaviours of 3 selfish, self absorbed females have put my life and so many other people’s lives at risk.

They knowingly travelled to a major COVID hotspot and then travelled back to my state. They lied about identities and where they had been at the border. They went out life infecting the community.
They went 1km from my home. They have infected others, who then unknowingly have gone about their business again close to my home.

Those 3 people have brought the virus back to my state. My suburb. My world. Being immunocompromised, my anxiety levels are rising, I’m scared to go out.

I woke up with a sore throat, blocked nose, headache. I went and got a covid test. I had to make sure. I’m not this person.

I don’t want to be scared, but I am.The feeling of terror against an invisible killer is not a nice feeling to have. I can’t see it, I can’t feel it, I don’t know if others have it.

Why do people think they are above everyone else. Why do people think rules don’t apply to them.

Do these people honestly think they are better everyone else? Or just completely stupid.
I hope no one dies from the actions of those 3 stupid and selfish humans.

The carnage in the rest of Australia has been enough devastation for our country. I don’t want to see it in my own backyard.

Please stay home if you don’t feel well

Please wear a mask if you are out in the community.

It’s not just about you. It’s about all of us and all of us staying safe and well

#covid #anxiety #selfish #stayhome #scared #gettested

Team Go-Cart

It’s probably time I introduced you all to the Go Cart of Dreams.

The Go Cart, as it’s affectionately known, is the overarching term for all of those in my team. It’s an extensive list of people in the team. The Millennial, doctors, allied health, support workers, hairdresser, beauticians, neighbours, baristas, friends and anyone else who is along for the ride.

The Go Cart is a car, my car, he is a trooper with no frills. A little hard worker with a big heart.
The Go Cart knows the way to all my favourite coffee shops, the many rehab places, doctors’ rooms and hospitals.

The Go Cart represents all that is in my life. We have goals, to-do lists, projects and most importantly – hope.

There is an everchanging schedule, we have things to do each week but a flexible schedule to take into account appointments or fatigue levels.
The biggest goal that the Go Cart represents is the Paralympic Dream. Competing in powerlifting.
We have a long way to go, but we are in no rush. It’s a journey not a destination. With the dream comes weightloss, muscle strengthening, slow changes physically. We are working to maintain functionality of my disability, fend of deterioration, and proving that my body can succeed at life.

The Paralympics is the goal that keeps us on track. The path will be long and winding, there will be ups and downs, medical changes and disability adjustments. Team Go Cart was only put together at the beginning of the COVID crisis and there has already been many changes.

Every person in Team Go Cart is a positive influence, they all add their own expertise and knowledge to keep me healthy and moving. Without Team Go Cart, I wouldn’t be as well or as happy as I am now. Team Go Cart people are so close to my heart, I can’t thank any of them enough for everything they do for me. I would be lost without them!

The Millennial and I spend the most time in the actual Go Cart. We drive around place to place, drinking coffee, laughing and plotting our next plan or crazy idea.

If you want to follow the Go Cart journey, you can @goodbadolympiad

Team Go Cart is a team of champions.

#supportteam #heroes #journey #paralympics #instagram #CIDP #chronicillness #friends #coffee #hope #happiness #crazyideas #powerlifting #

Gains and Losses

As I sit here this week, there have been many gains and losses.
All part of the journey from chronic illness to disability.

There are so many little things you realise you can’t do anymore, but then the big stuff you can.

We have discovered I have no nerve function on the outside of my feet. No electrical response. Very minimal electrical response on Leftie’s Ulna nerve, Leftie did a bit better on the medial nerve. Right arm – the trooper of the arms – Medial nerve has less electrical response than we expected, and Ulna nerve is surprisingly good.

So there was that to process…

Then we discovered I have very limited down to just no reflexes in my arms, hands, feet and legs. You know when a doctor taps your knee and your leg jerks? Yeah nah, not for me. Wrist – nope, elbow – nope, ankle – nope. A lot of nopes.

My body really is doing it’s best to destroy itself.

The tests do reinforce the fact I’m not going crazy and what I can feel is actually noticed in recognised diagnostic testing.

So on to the more positive stuff.. because there is always a silver lining!
I went clothes shopping and bought smaller sizes at normal people shops. No extra large fashions for me.

I still don’t see myself as smaller than I was, but I bought clothes that were smaller! My brain is slowly catching up with the idea that I’m getting smaller. My brain has a lot to cope with so we will cut it some slack for not noticing stuff.

I also managed to navigate my way around a shopping centre in my wheelchair for the first time, I did good. It’s a good workout. I’m in awe of people who have been doing it for a while, my arms burn today!

The kilos on a scale don’t change much, mainly because I’m the ridiculously big weights I lift, but the centimetres have gone.

I’m hoping next week is all about the gains in the gym!
Increase those weights and reps.
Show my body who is boss.

We got goals to achieve!

#cidp #disability #gains #goals #naptime

The Past

The past is an interesting thing. Rose coloured glasses make things seem better than they were, memory blocking to forget the hard times or heart ache.
Sometimes we use anger or addiction to hide the pain.

My past came back with a vengeance the past week. I didn’t have a particularly bad childhood. But it’s not something I look back fondly on, even through rose coloured glasses. It’s just nothing. I felt invisible and nothing.

Anything prior to the year 2000 I don’t have a lot of recall of. Bits and pieces, they were usually negative recollections.

My childhood did feed my food addiction and eating disorder. I ate sugar, anything sugary, even just plain sugar! This helped me cope with the feelings of never being good enough.

Never being good enough is the memory I hold on to the most from the first 18 years of my life. I was never good enough.
I never realised how much I had blocked out, deliberately forgot about, or what depth the feelings were associated with my childhood.

The Pandora’s box was opened last week, innocently enough I allowed a close friend to look through the boxes of memorability that I had stuffed in boxed at the bottom of a cupboard.

Going through school photos, school work, report cards, photos with friends at the time. All innocent enough. There wasn’t anything in there that was bad, it was just stuff. A lot of which held no great value or interest to me.

These boxes have opened up a lot of feelings for me. I had nightmares about all the people in my high school photos for the next two nights.
And most scarily, its brought back so many thoughts of not being good enough. Am I actually good enough as an adult?

I haven’t been myself, I’m back in my little shell.
A very close friend knew something was up, I wasn’t myself. They forced their way in to my home to just give me a hug and hold me close. I cried (obviously).
I was reassured I am good enough, and my past has shaped the strong, resilient, independent and beautiful person I am today.

Logical brain is slowing putting emotional child brain back in to place. I’m just processing the feelings, the thoughts and reassuring myself that I AM good enough. I am worthy. I have achieved so much in the last 20 years, I am an incredible woman with so much going for me.

Don’t be afraid of your past, use it as motivation to be the best person you can be now and in all the tomorrows ahead of you.

More importantly, if you need help because thoughts are causing you pain, negative thoughts or you just need to talk, reach out. There are a lot of wonderful people out there to help you through this.

Oh, and I have no desire to go to my 20 year school reunion. Don’t even send me an invite!

#childhood #pain #amigoodenough #insecure #memories #past #youareok #highschool

The hurt.

“In order for forgiveness to happen something has to die. If you make a choice to forgive, you have to face the pain. You simply have to hurt”. – Brene Brown

This simple quote has stuck with me since I read it last night in amongst the many rambling notes I had written to myself over the years.

Being in a highly emotional state because of the pain killers I’m currently on probably wasn’t the best time to read through previous emotional meltdown notes I had written to vent out my anger, or hurt, but I did and now I’m really sitting with a lot of emotion right now.
Alone in a hospital room with nowhere else to go, no one to distract me, nothing. Just me and my thoughts.

This is an uncomfortable feeling. It’s a feeling I need to sit with. I need to process this.

That quote from Brene Brown was followed by a letter of forgiveness to my father. I haven’t sent it to him, nor would I ever do that, but I had to forgive him to move on from the place I was stuck in. Do I still think about him? Yes, of course, he’s my father, but do I actually care about him on any level? No. I’ve made peace with that. He is now just a man in the outer circles of my life. He has no interest in me, I have no interest in him. Will that change? I don’t know, probably not and that is ok.

As I sit here, I am sad. There is no particular reason why I’m sad, I just am.
With this hospital trip is a lot more acceptance I need to come to terms with. The journey of a chronic illness isn’t very smooth or easy. The pain I have is real, and this pain is not going to get any better. If anything, it will get gradually worse over time.

I don’t have pain in my fingers as I type this, which is amazing, but the pain has been replaced with numbness. The pain was taken away with this drug, and now the neuropathy is real. The neuropathy is there, and it’s not going away. Ever.

This, my blog reading friends, is the hardest part.

Reading through the old notes to myself has shown that I have grown so much as a person. I have grown mentally, emotionally and physically stronger.
I don’t have the anger towards people, situations, or myself like I did before.

Now, I am forgiving myself. I am sitting here in the hurt, feeling it. I didn’t do anything to deserve this life, it just is.
I forgive myself for being angry, grieving, needy, hurt and upset. I forgive myself for all the mean and horrible things I said to myself over the years. I forgive myself for not allowing myself to be ‘me’ until I was a lot older in life. I forgive me.

All the decisions, every single one of them, brought me to where I am now and that is ok. I know who I am now.

It took me awhile – I fought, I argued, I bargained, I lashed out, I denied, I cried, I did all the things. Everyone of those things built the person I am now. And I’m ok with that.

So, I will sit here, in this feeling of hurt, knowing that giving myself the forgiveness I need means I can now go on and grow.

I am hurting but I am ok. I am a good person.

#BreneBrown #acceptance #risingstrong #daretolead #hurt #growth #selflove #forgiveness #journey

Am I or am I not.

Now I’m on this Olympiad journey my life is changing for the better in so many ways.

I still have the falling apart body, but I have hope, I have a goal, and I’m focused on something.

It’s ironic I’m lying in a hospital bed hooked up on pain killers as I write this, but life is looking up.

The path I follow in life will never be flat, smooth or straight. My illness means that predictable isn’t a word I can use anymore, but planning for every possible scenario is something I am quite good at doing!

I’ve been told I have lost centimetres and kilos. I don’t know, nor do I want to know what those figures are.

It’s like I’m living in this alternate universe where I think I can see change or differences in how I look, but I don’t want to get too confident or happy incase reality comes to smack me and I’m back to how I was.

I know it has changed, but I don’t believe it.

It’s a strange feeling.

I’ll just keep working away, hoping the reality is true and the world isn’t playing a huge practical joke on me.

I don’t feel pretty at the moment, not ugly either. Just blah. Being doped up to the eyeballs on pain medication probably isn’t helping the self esteem.

Weight loss, goals and hope is a new concept for me. For so long I was living on caffeine and sugar trying to prove to the world that I could do it all – I could work full time, manage my illness, live a life and have it all. I didn’t have it all, I was merely existing.

I was trying to prove a point, and while trying to prove that point I was killing myself.

Now, my life is far brighter. There is a lot to look forward to. I have energy, I don’t have crippling fatigue, I feel happy, I look better, I sound better.

I’m not proving anything to anyone anymore. I’m looking after me with care, tenderness and love. This is something that is new to me, but it feels incredibly right.

Will I make it to the lofty heights of a podium? I don’t know, but I do know I will have a lot of fun and adventures along the way while I look after me. I’m giving the podium dream a bloody good crack, if my path through life has different ideas then that is fine.

I know now that I am on the path I need to be on. The path to a happier and healthier life. The path will change course from time to time but I will be able to move with the path now rather than fighting it.

So Paralympics here we come, as a competitor or as a spectator, I will get there one way or another.

#acceptance #happy #journey #paralympics #newlife #followthepath #chronicillness #autoimmuneillness #professionalpatient