Speak out, seek help

Sharing my struggles on these pages has helped massively over the years and I hope you all know I will always return that favour with a shoulder were needed. I may not be great at dealing with my own troubles but I have a listening ear.
What I do want to ask is one thing, if you see anyone else struggling with life in general, depression, addiction etc, be there for them where you can.
There is still a lot of stigma attached to what people go through, and by us all supporting and being there for each other it is the only way people will speak out, and seek help.
If you need help yourself, please share your struggles regardless, it is the only way you will be able to move forward and get better. X x


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.


The monsters that hid under your bed

Ariana Grande has announced that she is paying for the funerals of the victims of the Manchester attack.
The manager of West Ham has offered both homeless men six months all expenses paid accommodation, and money to help them sort themselves out.
The public has donated thousands of pounds for victims, families, emergency services, and heroic citizens.

This is how we fight terrorism, not with hatred, not with arson attacks on mosques, but by standing strong, supporting strangers, pulling together and staying strong as a nation.
That is why Britain is great. These are not the monsters that hid under your bed as a child, they are cowards driven to murder and suicide. They will not prevail.

This tragic, heartbreaking event has bought a tear to many eyes, but Stephen Jones and Chris Parker were homeless before they were heroโ€™s, surely it doesnโ€™t take being a hero for people to show them the respect they deserve. Remember guys, when you walk past the homeless just remember one day they might be your hero.

Cocktail with a twist. ๐Ÿน

As many of you may know, Lupus and a few other autoimmune deficiency diseases have caused havoc with my life for a good few years now. (Sucks)
My doctors believe they reared their ugly heads due to heartbreak and grief, not that, that can be proved, but it’s the answer I get when I ask “Why?”ย (I wonder if I ever became totally happy, complete, like I was when I was with Ross, would I go in to remission?)

Without going into too much detail, all I can really say is life now is one big cocktail of drugs, the legal type.

I’m pretty useless at taking them, I’m guessing down to brain fog and life just being rather hectic. Boy don’t I know when I haven’t taken them, thank god for Fitbit alarms.

I’ve always been against putting any kind of medicine into my system, no idea why, I just have never liked doing so. Now though I have to, which rattles me, I really, really dislike the fact that I have to put this unknown crap into my body. Sadly it’s what I have to do, to try to live a normal life.

So I thought that I would share the pros and cons of the cocktail of drugs that has become the norm. If only that cocktail was the real deal ๐Ÿน and I was happily slurping away of a deck chair by the pool, soaking up a good old dose of vitamin B.

So this is what I have to take daily, most are 3 times a day, or when I need a quick pain fix.

Morphine (tablet form) 50mg, two times a day.
Morphine Sulfate oral, 10mg taken every two hours.
Amitriptyline, 50mg at night.
Co-codamol, every four hours
Paracetamol 1000mg every four hours
Sildenafil, three times a day.
Aspirin. One a day.
Bisacodyl taken when needed, five tablets a night.

The after effects are a bit**.
From weight loss to weight gain, banging headaches, constipation, dizziness etc, etc

I really don’t know if any of these medications help but I’m a little scared to find out if they don’t.

Sildenafil – I’m often asked about Sildenafil which in normal language is Viagra.
NO it doesn’t make me horny, NO it doesn’t make me want to have sex 24 7.
Considering I haven’t even kissed a guy since Ross, sex definitely hasn’t happened and I’m pretty damn fine with that. Yeah I’m a nun and that’s the way it’s staying.
Sildenafil gives me bad headaches as you know, it opens the blood vessels up. I’m sure any guy that has taken this will know that the headaches can be a bit** and even make you sick. Apart from headaches, I can’t really say anything negative about it.

Does it work?

Not sure, my hands, toes knees, nose and a few other areas still suffer daily attacks from Raynauds Phenomenon, it really hasn’t eased, if anything it’s really bad at the moment. The constant change of weather and the slightest temperature change really plays with my Raynauds and rheumatoid arthritis.

Naftidrofuryl scares me.
Every time I see my doctors/specialist, I’m asked about the side effects and how long I have been taking it.
For some unknown reason no one seems happy about the drug, all they keep saying is it’s dangerous, well take me off it then!!!

Amitriptyline, also isn’t the nicest, it’s great when you first start taking it, you sleep, I mean really sleep. But brain fog triples and it’s hard to hold a conversation, let alone trying to do anything constructive.

Morphine is a god send most of the time and about from the constipation it brings, I really don’t feel any effect from it anymore, I know it’s doing something but I no longer get the eye rolls and instant sleep it use to bring.
The come-downs are the worst thing. If I forget a dose, it’s the worst feeling and the hot sweats and pain are just nasty, it’s like I’m withdrawing and boy I know it.

Hydroxychloroquine, I can’t say I notice anything nasty about this medicine, I’ve been on it a long time now alongside the Viagra, so wouldn’t know how it makes me feel.

Co-codamol, I think most of us may have taken this at one time or another, the worst side effect is once again constipation, which added with the morphine can lead to a compacted bowel, now that is incredibly painful. ๐Ÿ˜–

Screw you

img_4300Some days are meant for sofas, blankets and sick bowls.
Of late it’s been happening way to often and with it comes too much head space.
And I can’t let the good old head f*** pull me down, I can’t allow myself to be controlled by my emotions because I’m not going to allow myself to be that person anymore and even though I’m still a believer in heart over head, it hurts to deeply and I don’t want to be the shell of a person I have been for far to long.
I’ve grown so much as a person and I’m no longer taking tiny steps to better myself or my life. I’ve been taking the balls by the horns and I am finally trying my hardest to pull my self out of the depression I’ve lived in for far to long.
I won’t let love or heartbreak define me because even though I can’t break free of what my heart and soul reminds me of every single day, every waking hour and every sleepless night, I can’t let myself destroy myself any more.

Last New Year’s Eve I decided that this year was the year that I had to take control, be it with goals, lists and just keeping my mind as busy as I can, I have to climb my way out of the pit of darkness that has me trapped. I have to make changes, I have to begin the climb to my own salvation, I have to stop dreaming that my once knight in not so shiny armour would somehow make everything better again because I know and I have always known that he wouldn’t.
I’m the only person that can save myself and it’s one fight that I will not give up on, I will not surrender, I can’t because I’m not saving myself for me but for my little ray of sunshine, who has seen too many tears, not enough smiles, not enough laughter and she has cried to many tears herself because her world, her mummy, has been so unhappy. I can’t and I won’t let her be the one that runs to me, throws her arms around me and comforts me, that’s not right. I’m the one that does that for her, that’s my job as her mummy. It’s my job to smile and comfort her when she has tears of her own. And even though it breaks my heart every time a tear rolls down her beautiful face, it’s me she wants and needs to comfort her, which of course I always do and will do always. She is my world and I for sure are not going to let my grief, my weakness, my pain, my longing, destroy her memories, her advantages or her growth. We alone can make our world, our house (home hopefully in time), our future be the best it can be for her because she deserves the earth, the sun and every star in the sky, because to me she is all those things and so, so much more.
So screw you sick days, screw you lupus. You may stop me ticking off goals or projects, picking up a hook and creating or stopping me dancing on tables if that’s what I wished to do, but you can’t stop me making those simple special memories that only can be felt between Marly-Kate and me.

No man could truly tame a wolf.

I have/have had the busiest week, ten ton of deliveries, a huge work schedule, lots of sorting of furniture and moving it around the house, which leads to cleaning and more flipping cleaning, hospital, bloods and venesection’s, add to that a trip to the theatre ๐ŸŽญ (I hope I don’t sleep through the show) and a few meals out, the list can go on and on.
It just happens that I have the wolf banging at my door.๐Ÿบ
I feel extremely rough, exhausted even, my bones ache and my joints are so swollen you can’t even see that I have knuckles.
Brain fog, a splitter of a headache, blurred vision, seems to make everything so much harder.
I don’t often moan when I’m in a bad flare but boy, this time it hurts and has me thrown against the wall, the wolf is at my heels and I’m feeling the pressure.
Motivation is always a tricky one in the mornings, I really have to push myself to get going, no amount of coffee seems to do the trick, I know I have to push on, push past it. I need take the wolf by the balls and fight with all my worth.
I seem to be loosing, all I want to do is, climb back into my lovely new bed and sleep for a month.
If only I could.
I need to tame this wolf !!! ๐Ÿบ

This kind of love.

img_4003Life is much like walking in to a turbulent windstorm.
As you fight to push through it, you not only gain strength, but it tears away from you all but the essential parts of you that cannot be torn.
Once you come out of the storm you see yourself as you really are in raw form, still holding the passions and values that move you, and little else. These are the lusts that matter, the inner love and vows that define you. It is this kind of love that drives you forward and even when the going gets tough. It is this kind of love that strengthens the mind, body and soul.

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. ๐Ÿ˜ก
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 ๐Ÿ˜€

The start of something new

imageGood morning and I hope you all had an awesome weekend and a delightful week ahead.
My weekend was a good one and the start of something new, which has brought endless smiles, laughter and hope.
You see we’ve started our very own little adventure which holds new beginnings and positivity.
Let me explain.
Last week my constants all had a meeting together to discuss my future plans for different trail treatments (hopefully something that will help to ease life.)
One suggestion was to work with a highly trained team to get my modality too better levels, which means hours and hours of hydrotherapy, or aquatic therapy. This has been tried before, sadly with no happy outcome. The other treatment I will sure write about when they start, but they all seem interesting, time-consuming but hopefully helpful.
Any way, I decided to take things into my own hands with a little help from my friend Rich.
I brought myself a push bike.๐Ÿšด
I have brought Marly-Kate one for her birthday as she just loves to scoot around on the farm but she is fastly growing out of hers. (Sssshhhhh don’t tell me as she doesn’t have it yet. I can’t wait to see her face light up when she sees her big girls bike)
I will admit that when we took are first ride, I was very nervous even scared. It would be her first time riding solo on a road without someone next to her in case she wobbled but in true Marly-Kate style she proved that she can hold her own and how determined she is to succeed. I’m very, very proud of her.
My fear just wasn’t for her but for myself also.
I knew it would be very painful, hard work and I didn’t want to disappoint my very excited little girl.
I had to do this even though I knew deep down that I could be making myself fall at the first hurdle. I knew the pain would be extreme and that I would have to grit my teeth and push through, also there was the fact that I haven’t been on a push bike for a very long time and that alone was a small fear all by itself.
Well we did it, slowly but surly we did it. Through gritted teeth and determination we had our very first bike ride together.
I will admit that it hurt, it hurt like hell, and by the end of it my foot was black and totally numb. But it felt so good, so, so, good.
So our new adventure started and we carried it on yesterday, sadly though we didn’t get any further than the day before, which I secretly hoped we would but as Rich kept reminding me, small steps are the way to go, no point pushing it and doing more damage.
I totally get that but there is that side of me, that has always pushed me to do better, to go faster, to win.
I really didn’t think I had that still in me, I have competed in sport for a very long time, I guess you never lose that competitiveness once it’s in your blood.
I was once a great athlete, with an amazing further in front of me, I guess that still lives on, I just didn’t release it.
I know I can never be that fit, determined athlete again but it’s kinda nice to know it’s not totally lost. That somewhere in me lays the person I once was before I lost myself through love and heartbreak.
Not only that but hopefully that fire burning deep within my soul can be the flames I need to burn is illness into control and I can take my life back.
In turn making my daughter happy and giving her the freedom of the countryside around us.
I say roll on 3.20 when school ends and we can try to do it again, and hopefully get a little bit further, in time get to Salisbury where we can sit eat ice cream and motivate ourselves for the ride home. It’s a long way off but we will get there, I’m determined not to let my health beat me. I’m determined to give my daughter the memories she deserves.
I would like to say a huge thank you to Rich for being by Marly-Kate’s side and support us through this adventure. Don’t forget that helmet this time, if only so we can take the piss. ๐Ÿ˜ No really it’s best to be safe than sorry.

Have a great day guys and enjoy this gorgeous weather.
Toodalio ๐Ÿšฒ

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.