Category Archives: Lupus

Just one of those…..

Posted by Rose on

Do you ever feel like you are being pulled in many different directions?
That everyone and everything wants a piece of you?
I’m totally there right now and feel as if the world is crashing in on me.
I love to be busy, mainly to keep my mind and heart away from the torment it likes to play. If I’m busy, I have no time to think, no time to let the pain take over. My busyness is my protective armour but boy right now I feel as if I’m being pulled into three or four pieces. I’m grateful in a way but 5 minutes time out would be pretty damn welcome.

So my week, what can I say about my week?
I’m been a hard one.
Firstly, my baby girl is being bullied at school because of her heart problems. She cries her little heart out every morning and bursts into tears the minute she sees me at the end of the school day.
These bullies tongues are pure evil and if they are like this now, I dread to think once they hit mainstream school, what on earth they will be like.
I know they say a bully, is a bully, because they have their own problems and they take that out on the easiest victim, my heart goes out to them but when it comes to them hurting my daughter, I will not let them get away with it.
I wrote the harshest email I’ll ever written yesterday, telling the school that I will be moving Marly-Kate from the unsettling nasty environment until I have proof that it is safe for her to return.
Trust me, they didn’t like that one bit.

On top of that, I’ve notice that when I wake, my jaw is nearly locked and that my mouth, teeth and Jaw ache. My teeth through my medication have grown weak and while I brushed my teeth yesterday one just fall out. I was horrified and phone the dentist who managed to fit me in.
She was super lovely as I went into a nervous talkative state and rambled on about any crap that came to mind.
I’m not at all scared of the dentist or treatment, what scares me is that as soon as they touch my teeth I get an abscess and that alone terrifies me.
I was told that my teeth have grown weak due to my meds and bad health and that she will not be able touch or work on my teeth because I do not bleed easily. You need to bleed in order to heal and stop infections, so it’s now a trip to the hospital, to be knocked out and any work that needs doing to help support and strengthen them will be carried out.
I’m kind of relieved if I’m honest, but also saddened by that fact that my meds are taking the goodness away from them.
I’ve alway gone 6 monthly to see the dentist and the hygienist, I’ve always been proud of my teeth so this is a kick in the gut for sure.
It’s just a waiting game now to get seen, I hope I can stay on top of the awful pain that toothache brings.
When ever I have a little niggle of discomfort, my mind always flashbacks to when Ross and I first started our friendship/relationship. Bless him, he had the worst abscess and I remember the awful pain he was in, even back then at the very beginning all I wanted to do was take his pain away, to hold him, comfort him, still to this day I want to do that.
It’s funny how you remember those moments, the moments that are part of life and not at all exciting but they stay with you for a life time. It’s funny that even back then I was so in love him without even knowing it.

This week hasn’t all be bad, I’ve managed to get a little research done, a little work and a massive house clean.
I find that when I feel myself falling, I begin to clean, cupboards are emptied, skip bags are filled and every surface to scrubbed.
If I can’t clear my heart and mind of the emotions I feel, I empty the walls that surrounded me. At least the house feels lighter and refreshed even if my mind doesn’t.
Here’s hoping that the weekend will offer time out, rest and relaxation.
Here’s hoping.
🌹🌹🌹

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Flashback Friday

Posted by Rose on

After a fab start to the week and a weekend full of great company, fun, games and freedom, the week hasn’t ended the way I hoped it would, well it is Friday the 13th!!!
I really did have great hopes for the week and even with the storm that took out the phone lines, I was pretty content in writing a blog post on my phone and walking through muddy fields until I could find 3G so I could post it. I guess its all part of moor life, a part I love about being there.
I’m cut off from the world. No phone signal, and internet that only works when it decides to.
Even though I love technology, it’s a welcome break from, being able to be got hold of. When the body and mind needs a time out, it’s the perfect getaway.
The weekend was great, even the weather didn’t stop us, stepping back in time and finding freedom of mind as well as freedom of our souls.
It really was a delight, care free, until that moment I fall off the swing and landed in freezing cold water.
That moment changed everything.
Not only did it send my mind into overtime but my body went into shock as the cold took hold.
So my plan of a fun-filled week, doing not much but enjoying the freedom that Devon brings, I ended up, spending most of the week wrapped up in front of the fire with hot water bottles, pain killers and pile of blankets over me.
My mind was free to play every trick it could, every emotion reared its ugly head and I felt pain deeper than I have let myself in a while.
All those emotions I had pushed deep within my soul came flooding out, grief surrounded me as I fall lower than I have been in a long time.
Life carried on around me as I spent days staring into space reliving every moment, I’ve forbidden myself to think about.
I’ve had to workout all over again to suppress all those feelings, gain strength and put a smile firmly back on my face. I’ll admit, it’s been hard, extremely hard but I got there and took that journey home.
I never thought that I would ever feel grateful to return to the rat race we call life. Here I have to get on, I have no choice but the busy myself.
Life goes on no matter how you feel or how you are coping, you have no choice, you have to get your butt out of bed and live your day the best you can.
You have to answer the hundred and one emails waiting for you, you have to do all the tasks that have built up since you were last at home and work your way through that mountain of washing you brought home with you.
It’s what I need right now, I need to feel as I have a purpose, I need to busy my mind with the endless crap that running a family home gives.
I need to dull out the pain by doing all those brain numbing chores.
I need to remember that life doesn’t just hold heartbreak, it’s beautiful in its own way, it holds memories that I don’t want to forget, that I never will forget.
And that leads us to this weeks flashback, to memories that bring a smile.
So without further ado, I’ll wish you good health, a happy home, a smile on your lips and freedom that the weekend ahead may bring.
Enjoy guys.
Stay safe, stay true, stay you.

🌹🌹🌹

Life without friends is like life on a desert island…

imageI wanted to say thank you and sorry also for the weekend.
It was lovely to all get together and spend time with you all for Sammy’s birthday.

Visiting the Isle of Wight for the first time in like forever brought peace but also some very painful but happy memories.
Drinking hot chocolate in my favourite cafe was a trip down memory lane.
I did chuckle to myself over a finger of fudge 😃

And it brought a smile to my face, yep a real one not forced.
I wish I could bring back those feelings again, when the world was mine for the taking.

Watching you all, walk almost skipping along the sea front, splashing each other like you all have no cares in the world was a beautiful warm feeling but also sad because I couldn’t join in and feel freedom.

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As I wrapped up warm, sat in the car, I thought about how many wonderful weekends we have spent there, without a care in the world, and as I blissfully fall asleep with the memories floating around, I had the most care free sleep I have had in a long time, one where he didn’t haunt my dreams.

I don’t know how you all got back in the car and drove to Freshwater without me even knowing it.
Waking up to the view of the most delightful beach as the sun set was like stepping back in time, to when life was easy and pain wasn’t the ruling factor in my life.
I want to say thank you for giving me a feeling of hope and peace but I also want to say sorry that I couldn’t join in, in your antics.
I know you all understand but I still have to say it.

At times like those, I really miss having good health.
It makes me realise that the things I took for granted really do matter.
Watching Al set up his camera to capture the moment, to frame the beauty of the sea and all its hidden gems, it makes me feel sad that I can’t jump in the shot at just the right time to put a ghostly figure in his photograph.
It makes me sad that I can’t look for a different view and catch the shot of the day.
What one eye sees as beautiful an other eye sees perfection.
I miss those days of stealing his thunder, lol. (Not going to happen with my mobile)

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I miss capturing Sammy and Lee, sneaking a kiss or walking hand in hand across the sea’s edge, in their own little bubble, captivated by their love for each other.
I miss seeing their faces alight as I show them the stolen moment I caught on camera.
I miss seeing Brett and Cassie acting the clowns, and plotting how they can get everyone drenched.
I miss the way I would lose myself as I watched the waves come tumbling into shore, wondering what secrets, life’s and regrets have been lost to the sea.
But what I miss most of all, is our dear friend Porter being there.
How we would all sit round the fire and watch the flames as he sang “Amazing Grace, Chasing Cars and We are sailing.”

How he loved the Island, how his passion rubbed off on us all and made us all fall in love with his place.

I really thought it would be harder going back there but it almost felt like he was with us.
I’m sure he was with us in his own way.

As night fall upon us and we sat around the fire, talking for hours about him and our memories, it just felt right to write a little letter to him and throw it out to sea.
It was the perfect end to a lovely day. (Thanks Sammy, great idea.)

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Thank you all, so much for sharing your tears, laughs and memories with us all and bearing with me as I struggled throughout the day and evening.
I couldn’t ask for better friends.
Thank you xxx

Flashback Friday

Posted by Rose on

Days blend into one another, with no clue to which day of the week it is until Marly-Kate jumps uncontrollably up and down at the prospect of the weekend.
I’ve one very excited little lady willing no school and the freedom that the weekend brings her.

The last two weeks have been hard ones as the weather has changed and my body seems to have gone into shock as autumn chills my bones to core.
How I use to love autumn and winter, winter was by far my favourite time of the year.
Roaring fires, soft snuggly blankets, hot chocolate with all the trimmings 🍫 over sized hoodies, chunky socks, movie days, the crackle of frost under your feet, clear sky’s showing the winter sun in all its glory, moonlit starry sky’s, are just a few of winters pleasures.
Now those colder months bring fear, as well as bad health, constant pain and sleep deprived nights.
How I already long to feel warm even though autumn has only just joined us.
My last few weeks I’ve spent way to much time at the hospital either at appointments with consultants, X-rays, MRI’S, blood tests, infusions, venesection, just to name a few, then straight to bed with a hot water bottle, pain killers and extra blankets.
Sleep seems an impossibility even though my body is screaming at me to rest.
I feel, while I let my body try to heal I’m wasting my life away. It’s a no win situation that I so wish I didn’t have to deal with.
Thank goodness for Sammy, Rich and Brett, they have all been pretty amazing over the last few weeks.
I really don’t know where I would be without them.
On an up not, I actually managed to spend the day yesterday in my happy zone, I battled the elements, wrapped up warm and spend a great day, looking through census’, parish records, reliving history in my mind. We accomplished lots and answered the unanswerable questions that come with family stories that have been twisted and turned over the years and I feel pretty damn proud of myself right now. I rock at this research shit.😝
I also finished a project that I’ve worked on for months and its beautiful. The pride I felt as I made that last stitch, weaved in the ends and wrapped this huge blanket around myself.
I can’t believed I made it, I actually made something so beautiful that anyone would be frightened to use it. And what makes it even more special it’s big another for Marly and Me to both snuggle under and still room for another.
I don’t often find myself feeling pride, it’s always a case of “I could have done better” but I really wholeheartedly feel pride run through every inch of my being when I look at it. I really can’t believe these sore, ice-cold hands stitched every stitch. I’m over the moon with it, truly I am.
Hopefully Marly one day will pass it down to her children and her children’s children. Not that she is allowed to even talk to guys until she’s at least in her 30s.😂

Marly is still struggling with going to school, which breaks my heart, but the law is law and she has to go until I can work out if home schooling is the best foot forward.
I’m torn, totally torn on what is the best way forward. How can I teach her when some days, ok most days, I muddle my words and make no sense to myself let alone others? Along side that my brain will not remember facts, figures and information that she will need to grow her education.
Ask me anything about a time, a place, a memory in my life and I will remember the smallest simplest details. Memories are not a problem, my brain stores them instead of educational facts, which can be a bitch as I love knowledge, I love to learn. I think I’ll blame my meds and a constant morphine state of mind, lol. (I have to laugh it off or it will grind me down)

So anyway another week is over and the weekend is just out of reach and that means one thing, it’s time to take a little trip down memory lane with this weeks flashback.
So I’ll wish you good health, happiness and a free spirit and leave you until next time.
Stay safe, stay true, stay you.
Toodaloo.
🌹

Shimmer and Shine.

You are like a building with stained-glass windows.
You always shimmer and shine when the sun is out, but when darkness sets in your true magnificence is revealed only if there is light shining from within you.
It’s your duty, and yours alone, to keep your inner light shining bright. So learn to love yourself first. Loving yourself does not mean being selfish and narcissistic, or disregarding others. Rather, it means welcoming yourself as the most honoured guest in your own heart and mind…a guest worthy of extra care and respect. Whatever you are doing, love yourself for doing it. Whatever you are feeling, love yourself for feeling it. That’s a great start.

A royal pain in my…..

Posted by Rose on

As I sit here wired up to a machine and blood slowly, definitely not surely twinkling out my arm, I’ve started to think about the effect lupus has on my life.
One thing is for sure it’s a royal pain in my ass.
It’s not the pain that gets to me the most, not even the exhaustion but the other ways it changes ones life.
The brain fog is a massive problem, the constant medicated state grinds on me probably more than it should. If those few things are not already enough to deal with, add in the hours and hours that I sit in this chair either having venesections, like I’m having today or the 8-10 hours of infusions which are a 5 day course.
They bring their own amount of stress, pain and the most awful headaches I’ve ever encountered.
The hours and hours I’ve lost from actually living isn’t even worth thinking about, I think I would walk out and never return if I let myself count how many days even months I’ve lost due to them.
Then add in the god damn butterfly rash that has haunted me all my life, the bullying I’ve dealt with, the tears I’ve cried and all the makeup I’ve gone through in hopes of covering it up, which then leads to rashes and irritation. I truly dislike having to wear makeup and now I only do, if I really have to, I will wear a little, in hopes of a miracle, that my face won’t glow.
Of late I’ve had to deal with the hair loss, the handfuls that come out in the shower, or I wake and my pillow is looking more like a cat than a white pillow case.
Then comes the weight loss or gain, this drives me mad, it’s not that I’m vain, I’m far from that, take me as I am or not at all. It’s the comments of “You are so thin” or “oh my you’ve put on weight” not that I ever go above a UK size 12 but when I’m sometime a very small 6, that’s a big gain.
There really isn’t much point even making the most of it and shopping until my heart’s content, as my sister in law would do, I’m to exhausted for that and I’ve never been a great lover of shopping.
Clothes also hurt so it’s extremely difficult to find something that doesn’t make me look like I’m  from the workhouse, I’m pretty happy in my hippy clothes, I was born to be a hippy. My height really doesn’t help when it comes to clothing, I’m a short ass so clothes are already limited.

My confidence has taken a massive down hill spiral, I get very panicked when I’m not sure where I am or who’s walking too close behind me. Be it the meds or the lupus, I don’t know but it’s a mother of all bit..es. I won’t let it beat me down though, I have to try to do as much as I can because I have one little lady relying on me.
The thing that gets to me the most, is the lack of understanding, the lack of knowledge, hence why I’m trying to explain a little of what it’s like, not to rant or moan but in hopes of educating.
With all the said, I’m happy, I’m breathing and one day hopefully there will be a cure, here’s hoping. 🤞
Anyway my time sat in this chair is almost up so I’ll wish you a good day and hope to see you back here soon.
Have a good one.
🌹

Cocktail with a twist. 🍹

Posted by Rose on

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?” (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 🍹 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
Hydroxychloroquine
Naftidrofuryl
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. 😖

Screw you

Posted by Rose on

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.

Posted by Rose on

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 🎭 (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.🐺
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 !!! 🐺

How they would laugh

Posted by Rose on

img_3905I mentioned in yesterday’s blog that I love history.
Well of late that interest has returned to me with full force. It really couldn’t have come at a better time, my mind has been a light with pain and grief and to be totally honest I’m a little lost soul, disconnected even.
I need something to focus on as my normal hobby is proving a little too much to manage while I’m in a bad flare. This flare up has beat me sideways giving me too much alone time to let my mind flow, with no rest. That really isn’t a good thing, I’ve always kept myself busy when grief and life take hold. I’ve battled too hard and for too long and the small cracks of exhaustion shock until they became huge holes that sent Lupus into full force, sadly though that means I have to sit and chill, that’s not me, I’m not one for sitting unless I’m in total contentment, and then it was the easiest thing on earth. I smile as I write these words, remembering the year that I felt so content that I could let the days slip away doing not much but love the company I was it. That year was just so incredible and I long to feel that free, that happy, that whole, that complete.
Sorry I’ve gone off track but boy it felt good remembering the most important and incredible feelings.
So back to it, history has always been a passion, I think it goes back to not knowing my roots, a childhood of wondering who I had come from, what was my blood fathers family stories. I still know very little about my dads lifeline but I have researched a get deal, dating back to the 1500s on my mum’s side.
This has added to the passion, I feel I need to understand how these people lived, their hardships, their battles, their loves and theirs lost.
I’ve learnt some incredible facts, stories and rumours but I’ve also learnt that life for us is so simple. What we class as hard work, really isn’t. Our lost ones, would laugh at us when we roll in exhausted from a hard days work.
Anyway so lately I have been watching a few different tv series all about different historical events and times, one being “The Tudors” which I must say was pretty damn shocking, what cruel people they were but I’m intrigued to know more as the most famous of my ancestors has links to Queen Elizabeth the first.
One day I will share his story but for now I can not concentrate long enough to remember all facts or to double-check the research I’ve done and the stories I’ve uncovered.
Until then, I can imagine that I’m sailing the high seas, with Rum, gunpowder and that famous black patch over one eye.
Farewell me hearties, until next time.

One wolf to another

Posted by Rose on

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 😀

Flashback Friday

Posted by Rose on

imageTime is flying by, can’t believe we are heading towards the middle of August already.
Another Friday has come and another week is nearly over and what a strange week it has been.
It’s been a week of pain and feeling really under the weather. But I’ve somehow got through.🤒
One thing I’ve realised is my short-term memory is shocking. I’ve forgotten to take my meds a good few times this week, mainly due to my Fitbit not charging which I had set all my alarms to take different medicines at the right times. Feeling really lost without it.
Secondly down to not having a set routine in the mornings with no school runs to do life is a little slower and relaxed, I really need to get my self sorted because flare days kick me for six especially were I won’t give in and stay in bed.

A few major things have happened this week.
The scaffolding finally went up and work on my house starts next week I believe. (Fingers crossed)
My baby cousin who has lived with me while he was at college and before he signs up for the army got himself a full-time job and I really couldn’t be prouder. 😄
It’s his first day today, which started at 6am this morning. Bless him he had to leave here at 5.30am. He sure did look sorry for himself. He’s a little trooper and hard worker so I know he will be fine. Going to miss his ugly mug around the place though.😞

So let me get to it, its flash back time and as I’ve felt so poorly this weekend I thought I would share a post that I wrote about living with lupus but not just lupus, about all invisible illnesses. I’m not really sure if I ended up posting it on here or not, I know I meant to.
So here goes ……..

Life – isn’t it meant to be lived to the full???
So what happens when it is taken away from you, when everything you have ever known changes and you start losing the person who you really are.
What do you do, when every aspect of your life is controlled by your health, the weather and the people around you???
What do you do, when you can see your life, your soul, your spirit, your passion, your goals, your dreams disappear in front of your eyes???
What do you do, when your body is so against you, it fights you every single second of every day???
What do you do, when you have no energy to get out of bed, get dressed, carry out a normal day??? When you are too exhausted to even put the right words together, making you sound when you talk that you are from another planet???
When your memory fails you on a daily basis, because the medicine you have to take daily starts to destroy your mind, your sanity, your spirit???
What do you do, when the light hurts your eyes, and sound makes you hurt, shake, panic and twitch, making you have no control of your body???
What do you do, when your body feels like you have no air in your lungs, no matter how hard you try you just can’t draw enough air into you???
What do you do, when the panic takes over and you have no energy to fight it anymore???
What happens when you try to live a normal life, like trying to walk around a shop but the pain and exhaustion cripples you, making every step incredible painful??? Is it easier to give in and sit in the wheelchair and get the look of pity from everyone that notices you???
What do you do, when every step you take feels like you are walking through sinking sand or you’re trying to escape drowning???
What do you do, when people only think that you have cold hands and feet and think you are lazy because you can’t do things as fast as you use to and sit down every few minutes???
What do you do when the slightest human touch, makes fear run through you, swallows your air, and sends pain through your veins???
Not just human touch but clothes make you ache, sore and feel that you are suffocating.

What do you do???

Do you give in and waste your day in bed? Or do you do your best to carry on, not giving in to the invisible illness that is taking over you???
Or do you try to educate others by bearing you soul???

This holds my answer!!!!