When I sing, I believe.

With all the god damn evil in the world at the moment, Frank said it just perfectly.

“If you don’t know the guy on the other side of the world, love him anyway because he’s just like you. He has the same dreams, the same hopes and fears. It’s one world, pal. We’re all neighbors”

Frank has always held a place in my heart, from his music to his spirit.
There is just something about him.
I grow up on his voice and that love stayed with me.
His voice just seems to calm me, lift me or drawn me to tears.
The last few years I haven’t been able to listen to him, he’s songs all hold meaning, the most powerful kind and every time a song of his came on, I would just break down.
Music has always been my saving grace but until lately I just haven’t been able to listen to it.
Until I heard supermarket flowers by Good old Ed.
His new album helped me turn a corner and I have managed to listen a little more to music without turning into a bubbling wreck.
It’s been kind of hard as my biggest part of my job has to do with music. I managed to get over this by not connecting with the lyrics, something I find extremely hard to do. Thanks to Ed, that’s started to change.
While working away, YouTube playing in the background, Moon River came on and my eyes started to fill and I rushed to skip the song but just couldn’t.
So I just sat there, closed my eyes and let the music take over my whole being. Peace and tranquility fall over me and all these wonderful memories filled my heart. It was a moment I will never forget.
Hopefully in time music once again will be a pleasure instead of heartbreak but until then at least I have Frank.



One wolf to another

I got a message today from my old neighbour, telling me that her sister is being tested for the dreaded Lupus. She asked me for advice that she could pass on to her.
I really wish I had, had someone to turn to when I was told I had it.
Ok I had google but knew that could be dangerous. Sometimes too much information can be more than scary.
For a long time I put off researching because basically I was frightened and in all honesty I really didn’t want to know.
There really is a fine line between knowing too much and not knowing enough.
I finally gave in and researched a little. And I was right it’s all a bit bloody scary. Now if something crops up I will have a quick look but only enough to know what’s going on in my body without scaring the life out of myself.

So without going into any medical talk, (If you know me you’ll know I don’t do all those long medical terms well, why they have to explain things so only superman could understand, I don’t know. Plain simple English will suit many just fine, thanks.) here is my little piece of advice from one wolf to another.

My advice is to rest when you need to but not to give into it. (I have to fight to get up in the mornings because if I don’t it has beaten me.)

A hobby that you can do at home is a great idea as it has got me through some really dark days.

The most important thing is to write everything down, every question, feeling, symptom, etc, etc so that when you see your consultant you don’t forget anything. They are very good at trying to fog you off because they are more interested in clearing the waiting room.

One of your biggest struggle will be the people around you will not understanding what you are going through and expecting you to be able to keep up and do what others expect from you or what you were once able to do at speed. On bad days you simply can’t keep up, I’m sorry but you can’t.
Remember it’s your body’s way of telling you to slow down and rest.

Your life will change more than anyone will notice but it’s the depression that will come with it, that I would keep an eye on.
Having the simplest tasks taken away from you like cleaning your home is so hard mentally and it will take at least 3 times longer to do things. It’s the small things that will hurt your mind and make you depressed.
It’s a cruel illness but as long as your mind is strong and you have a good support network around you that understand that just because you don’t look sick, that you really are.
People can be the cruelest.

I would do your research so you can understand the battles that you may face but too much research is also a bad thing because it’s scary, really scary.

If you are a smoker, than try to give up. I found the best way was to use a vape. It may not make a difference but my consultant kept on and on until I craved in and gave up.

Really though, the best advice I can give is to listen to your body and rest when you feel you need it.

Also a huge one is DO NOT FORGET your meds. Withdrawal especially from morphine is a bitch, I know this too well.
Set alarms, reminders on you phone or any other gadgets you have. My trusty old Fitbit is a godsend for my reminders.

If you are in a state or country that cannabis oil is legal, then research that because boy that stuff from what I’ve heard is a life saver.
There are loads of videos on YouTube showing it eating away at cancer cells. It’s proven to work for so many medical conditions but it’s the same old, same old, pharmaceutical industry that won’t play ball because they will lose too much money. Wrong so very wrong. 😡
But from the stories I’ve read, it’s worth a try.

That’s about all I can think of for the minute. I hope it helps.

One last thing, this article is pretty on the ball and worth a read or a share to help yourself and others begin to understand.

20 Ways Lupus Affects the Body

Stay safe, stay happy and rest.
Toodaloo 😀

Here’s hoping

Yesterday I finally saw a consultant that didn’t want to pass the buck onto different departments.
She was pretty damn good. I was in with her for well over an hour having lots of different tests done.
I got to hear the blood moving around my veins and where the blood stopped flowing. She was very concerned about the lack of blood in my feet and heads. It was very strange to hear the blood stop.
She even went off to speck to the top dog and demanded more ct scans, mra’s, echos and other tests that I haven’t heard of.
She sat and listened to what I had to say, not many consultants do that, your just a number and they can’t wait to get the next into the room.
This senior doctor, was not in a hurry and it was so nice to not feel like I was wasting her time. She really did care and wants answers. Maybe now I may get more than “Sorry we can’t help you, there is no cure!!!”

Here’s hoping.

A little wobble

So I’ve had a few days off from hospital visits due to my veins collapsing, bruising and the venesection is just not working.
It has been bliss, and even though I haven’t felt great I managed to go out and spend a few hours with family and friends, which was pleasantly nice, exhausting but I’m glad I went, although yesterday was a wash out and I spent a lot of time sat falling in and out of sleep.
Tomorrow I start back at the hospital and I am terrified to say the least.
The thought of being stabbed with needles, pulled around and made to drink jugs and jugs of water, which I would say is the worst part. I really do not like water, it makes me gag.
I know I’m being silly, it’s a simple process which mainly is pain-free so I shouldn’t be scared in the slightest but I truly am.
I know I will be fine, but the thought is just too much right now.
I need to snap out of this frame of mind, I’m being so stupid, I know I am.
Fear is one mofo of an emotion, I do not like it.

Good day

imageFinally a good day.
I went for my venesection today, which I have been doing 5 times a week for a good few months now.
Lucky for me that needles do not bother me but I will openly admit that it gets more painful everyday but that may be the fact that my veins don’t want to play anymore and have vanished. They seem to like to play hide and seek.
For those of you that have met me will know that my veins have always popped out and can been seen from a good mile away, lol.
Not now sadly, but one bonus is that my hands don’t look so old now. Whoop whoop to that.
Anyway, back to it.
The norm is for me to go in and have blood taken, which is then tested to check my levels.
My haemoglobin levels are normally through the roof, which is one reason I am having this treatment.
After the blood results are back, they have to have another fight with my veins in preparation to remove a pint of blood.
The needle is a lot bigger and it has started to hurt more each time they do it, why they can just leave it in, I really don’t know.
After the blood is taken, which takes nearly two hours as my blood is so thick, they clean me up and off I go, until the next day’s appointment.

Well today, was my lucky day, I want, they took blood, I waited for the results and the next needle to go in but nope, one happy smiling nurse comes back and tells me that, my level is 1% below which means I’m spared for today.

That felt so amazing to hear, a weight just lifted .
I never knew I could feel so chuffed to hear the words, “yes you can go home”

So for today, one blood test, kinda positive blood results and an afternoon of freedom.
Back tomorrow though to start all again and lung X-rays and heart monitoring. (kinda heard because its shattered in to a billion trillion pieces)

But for now I feel pretty damn chuffed.
High FIVE to today – Happy, Happy

Saving grace

imageAs music and lyrics have been my life for many years now, not only in my job but music has been my saving grace over the years.
Not only do I love to dance, but listening to a piece of music that touches your soul, it connects to your feelings and your life in many ways.
Lyrics put to a melody can touch you more than any words that another human can deliver.
Every single one of us can relate to one chosen song and place that to a memory, a time or a person.
I have many songs on my play lists that have been dedicated to me from friends and family over time, but one song is what sticks in my mind more than others.
It holds deep meaning and helped me recover from a very traumatic stage in my journey of life.
When all else fails, music can really be a saving grace.

And that’s why

imageWhen I write about my illness I do not write to get sympathy or pity, I write to try to make people understand that illnesses are not always seen, or understood.
Take depression for one, most of us have had it at one point in our life’s but you can’t see it, you have no idea who has it and to a be honest we are all scared of it, because none of us really understand it.
We all wear masks to cover it up, we all say we are fine, when we are not but you know what, it’s ok not to be fine, it’s ok to cry, in truth I believe it helps to have that good old cry because it’s not a sign of weakness it’s showing you have a heart, you feel, you are human, it is a good thing truly it is but being made to feel weak by the people who don’t understand your pain, your insecurities, etc, etc, is not a nice feeling at all.
People judge way to much, and no one takes time to listen or to try to understand what others are going through because we are all to busy wrapped up in our own life’s and I think it’s wrong!
So when I write I try to open people’s eyes to invisible illnesses not just the many I have but for the people I love and care about who suffer everyday, with very little understanding from others.
I know that we all fear illness, we fear seeing people who are suffering through illnesses and lose, but I also know that it’s not because they don’t care but they just don’t know what to say to you.
But what we all really want is to be understood, to be seen as the same person we have always been.
All I really want to do is help others understand what life is like living with an invisible illness, I don’t want anyone to ever feel so alone as I have felt since my life took this tumble.
I know I’m loved, I know I have the most incredible family and friend support.
But even with that support, life is hard, really hard, physically and emotionally.
There are many days that I want to give up but I know I can’t and won’t because life is a gift and that it would hurt my family, also because I won’t let this beat me, I won’t let it win.
But mostly because I want to try to help other learn what life is really like for someone like me, a normal women whose life changed through no fault of her own.
I want to open the eyes of people who don’t understand that even if you look fine, that’s not always the case.
If I can help one person understand, then I will wear my heart on my sleeve and speak out about what life is like.
And maybe just maybe I may begin to feel like I have some worth left in me after all.
That all this pain and suffering is for nothing.

Blast from the past

imageI came across something I wrote a few years ago and thought I would share it with you, just in case it can help someone, somewhere who is struggling. So here goes……

There comes a time in one’s life that no matter how happy you are, how good you feel and you have the world in your hands, Darkness takes over.
Not to long ago my life was turned upside down by depression and panic disorder. Lucky now I have mostly beat my battle against these illnesses.
But if my words can help just one person to over come depression and find the strength to fight, know they are not the only ones who are going through this, that you will come through it, I don’t mind putting it out there for the world to see.

Looking back now, I see that my own pain caused many others to feel pain to, and even though at the time, I could only see my own, I am deeply sorry for any distress I have caused. I never meant to hurt any one.

Life was on a good roll when depression hit for no reason, there was not a single trigger, I guess I had been strong for too long and been isolated and out of socialization for many months and when it came to the crunch of getting back out into the world, I couldn’t master the strength to face it.
I will never understand why I fall so deep and I let the darkness take over my life, why I hurt and cut myself. All I knew at the time was every cut let out the darkness, every physical pain, took away the emotional pain that filled my body.

Getting help is one of the hardest things to do. But trust me, it has to be done. I swear that without the support of my truly amazing boyfriend/soul mate, my family, friends and my doctors, I would not be here today. Yes it got that bad that all I wanted to do was end my life.
I see now that life is worth living and the fight to Live is worth it.

You will always find the strength to battle on.
And if in dealt look at you family and see the pain in their eyes and remember that if you leave them that even though your pain my be gone, you have left many with heartache and loss.
Can you really do that to the people you love ?

Talk to your closest friend or your family, tell them how you are feeling and they will help you through.

My advise to you, is to talk.
Talk is the key, even if that is talking to a stranger, also listen to their advise.
Happy pills may be the answer to. I always disagreed with those until I was made to take them.
They put me in a bubble which helped me get through the day.
So in a way they saved me to.

When in dealt about yourself, grab yourself a pen and paper and write two lists,
one of what good you bring to others and the world and the other what you think your faults are.
9 out of 10 your first list will win. You can even do this with friends and you will watch that list grow.

The main key is to believe in yourself. Stand tall and grab the darkness by the balls and say NO MORE.

Hold on and life will once again look beautiful to you.
Live, love and learn.
Isn’t that what life is for ?
Enjoy the ride with its ups and downs and remember to laugh and smile, because these two things are soul savers.
Nothing beats laughter.

My final advise to you all is, that when you see a status on social media, that seems depressing please think twice before calling that person crazy or thinking they are just wanting attention.
That person could really need your help.
Be a mate and take two minutes out your day and show them your there. I’m sure at some point in your blissful lives you will need a friend to. Be a friend yourself as you could save a life.