Saturday, 15 September 2018

A day in the life of a fibro warrior

Before I even open my eyes the pain hits.
Before my brain acknowledges the pressure sensors in my bladder the pain hits.
Before I move a single muscle....see where I'm going?

I lie in bed in agony with my eyes shut dreading the first move I need to make. 
The first move every day is the one for my medication tower.  So with gritted teeth I prop myself up on my screaming shoulder to shovel my morning meds into me. Gone are the days where I used to have to take them one by one, for fear of them getting stuck,  these days I have the skill to swallow 8 pills at once, some skill eh?!

After the effort of pill taking I collapse back on my pillow trying really hard not to groan and moan. This morning it was 6.30 so I really don't want to wake my partner as he will have a long enough day as it is.
The next battle is the one of bladder vs pain killers. Which one will win?
Every day I cross my fingers that it will be the pills because if not it will be the agonising hobble to the bathroom with full on accompanying sound track of moans and groans. 
The bathroom visit feels like an extreme sport. 
Today I held out for 45mintes, woohoo!  At least my meds have started to kick in before I have to put my sore feet on the floor.

Then it's back to bed.

Already exhausted.

Every day the same but every day I'm still surprised by how shit I feel. 
I mean how can EVERYTHING hurt?!
Makes no sense to my nurse brain.
On nights where I've slept well I blame that for some of the pain (from lying in one place for a while longer than I can normally tolerate), but then nights like last night when I had to take pain killers in the middle of the night, it puts pay to that theory. 
I really do feel sorry for my fiance trying to sleep next to me as I must change position every hour, often more frequently if I'm honest.   I'm lucky he still wants to marry me lol (next month! Woohoo!)

By 8.30 I was grateful for my CBD (Cannbidiol) and was at least able to nod off again.

Sadly I was unable to move enough to get up with my darling son.  This is the same 99% of the time. Cue Mummy Guilt.

It seems like my day is ruled by the clock as by 10.30 I'm thinking I could take another dose of pain killers... starting to think how to plan the rest if the days doses as I've now had 2 out of my 4 doses and it's not even midday.
I just about manage get out of bed to say goodbye to my boys as they head out for a while.
What do I do? 
Collapse back into bed. 
The pain is easing by now but I'm exhausted.... thinking about what i might be able to do today....

It's now 12.30. I've been sat on my gym ball for a while doing some stretches and now feel able to move.

No shower or hair wash today, oh no no no. That would put me back to bed for sure.  Plus I cringe at the thought of the water hitting my skin.  It's like hundreds of needles stabbing me. 
Today I'm going with my staple Dry Shampoo and baby wipe combo! 
There's a gift idea for you carers lol
Oh AND CHOCOLATE don't forget chocolate 😂
So half way through the day and I've just got dressed (tracksuit bottoms,  inside out knickers, stretchy seamless bra top and inside out t shirt), and opened my curtains. In that order you'll be pleased to know.  Wouldn't want to scare the neighbours.
Having a quick lie down as a bit knackered from the getting clean and dressed malarky.  Had another dose of CBD and wondering what I might manage this afternoon.  The sun is shining....a drive out in the car maybe,  walking is not going to happen today so it's my scooter or stay in the car.

Anyway I think you get my point by now. You don't need me to give you a blow by blow account of the rest of the day.

The point I'm trying to make is that our pain is not your normal pain.  Remember we've more Substance P in our body's so Fibro suffers feel 10x more pain than the norm.
It's also global,  it's not a case of having a sore back,  or a sore hip.  It's a case of having a sore back,  painful hips,  shoulders,  arms,  wrists,  neck,  toes,  ankles, soles of bloody FEET ffs,  you get the picture.
Add to that our fatigue.
We are not just tired.  This illness is EXHAUSTING.
I didn't sleep particularly badly (for me) either last night, thank you CBD ❤. However with fibro we don't get to the big deep restorative sleep level so we wake up exhausted.
This exhaustion only serves to amplify the pain. 
Of course there's more too it than pain and fatigue but I've kept you long enough.
A big thank you for taking the time to read this far. 

If you're a warrior then this will resonate with you I'm sure.  Share this so maybe your friends and family will understand.
If you LOVE a warrior I hope this will give you some insight, a million thanks to you for caring enough to read this blog.  It means A LOT

Much love and gentle hugs to all

Thursday, 19 July 2018

A good news story (for a change)

It's so nice to be able to write a positive blog for a change.

To recap:
We were made homeless in Ireland. 
Let down by the system completely. 
To be honest both me and my partner were at breaking point. 
The very real possibility of being on the street was horrific. 
I'm in enough pain in my bed 20 hours of the day... take that bed away from me,  along with roof, it didn't bare thinking about. 
That was beforeI even right of my 4yo on the street....

So we decided to STOP.

STOP looking for houses for a while. 

STOP the constant rejections when landlords didn't choose us. 

STOP begging for the help that should be offered.

STOP being made feel like utter crap. 

We will probably be judged for doing this but tbh our mental and physical health was in too much danger to do anything else.

Instead, we took the decision to pack up or remaining possessions, (after we had sold or gave away the majority) and head to the UK for some much needed respite.

We are staying with my parents. My son is absolutely LOVING being with his grandparents, and we are finally not fighting all this shite alone. 

We don't know where we will end up but we did decide that there was something proactive we COULD do. 


We've been engaged for years but been waiting on the divorce (that made us homeless funnily enough) to be able to do so.  

The old clichè We don't have much but we have each other, couldn't be truer.

Obviously it's not going to be a lavish affair,  a small registry office "do" is the plan. 

I'm currently having fun whilst lying in my bed seeing what bargains I can find.  It's amazing what's out there. 

I don't know how I'll cope with the Day itself but I'm hoping a late seated Ceremony and relaxed evening will be doable.

I'm going to pimp up my walking stick and may even pimp up my scooter with some just married stuff lol

If any of you reading this have any tips I'd love to hear them. 

Anyway, as always,  thank you for reading. 
Remember we can't give up people, we HAVE to keep fighting.

Gentle hugs and much love to all

Tuesday, 15 May 2018

I'm Done

I'm sad.
I'm dejected
I feel thoroughly let down.


Some of you may not know of the struggles my family are facing aside from my health issues.

My partner got divorced last year and was ordered to sell the house. 
Pretty standard I guess. 

What's not standard is us having nowhere to go.  Nowhere.

I've lived in Ireland for 15years. Brian is Irish as is our son. 

The Irish government has failed us. 

Last year when we first learned of our fate we engaged with the council and the Simon community. 
All the time when we asked "what if we don't find somewhere?" We got the reply "that won't happen" time and again.  As the months passed and we were getting knock back after knock back "That won't happen " "you'll be fine".
Well 12months later and guess what!!??


We've travelled for countless viewings, meetings in Wicklow council (an hours journey is no fun for me I can tell you), filled out forms galore (not an easy task for either of us with our health issues), begged for help,  been on the radio,  in the paper,  written to MP's, appealed for help from councillors.

Now we are done.  At the end of our rope.
Totally failed by the Irish government. 

HAP does NOT WORK. I believe it's hard for family's who are working but for us? Nope.
Nobody wants a disabled woman,  her child and her carer who's only income is benefits (which have been fought very hard for,  still awaiting appeal decision on latest one but that's another story).  Landlords aren't legally allowed to discriminate but we are proof it happens.
This all falls firmly at the government's door.
Their lack of social housing let alone housing suitable for those with special needs is at the heart of all this. 

So now with a court summons sitting on the kitchen table we are selling our worldly goods (including said kitchen table).

There is NOWHERE to go here in Ireland.  We have no choice but to go for respite in the UK with my aging parents and hope you God we can return to Ireland to a suitable home for my family. 
We simply cannot take any more. 
My health has suffered enough. 

This morning saw email number 4 sent to Simon Harris this year. The previous 3 having gone unanswered. 
He is our local TD and
I've been in touch with him since last year, we can see how much good that has done. 


You see now why I've not been writing my blogs as much as is like.  I've so many reviews to do.  A whole host of blogs on CBD to write. For now though that's all on the back burner. 

Thanks for reading and gentle hugs to all. 
Keep fighting my unicorns ❤

Friday, 27 April 2018

Cannabis: part 1 "What is CBD"

CBD (Cannabidiol ^canna-bid-i-ol) is one of the many compounds found in the amazing cannabis plant, called Cannabinoids.
There are over 100 of them and they all work together in harmony to create what is known as the Entourage effect.

Cannabis and Hemp both come from the same extended family.
Hemp is useful for industrial purposes and has numerous uses but also has high levels of CBD and extremely low levels of THC making it profitable to grow large amounts of it.
Cannabis plants tend to be much higher in THC and can fall into 3 categories Sativa, Indica or a Hybrid of the two. (Hemp is usually Sativa or Finola)
Sativa products are generally more stimulating, whereas indica and hybrids tend to be more relaxing.
(There are always the exceptions though where people fall outside of this norm, we are all different after all so how we respond is likely to differ too.)

It is argued that this difference all comes down to the terpenoid profile. Terpenes are the essential oils of the cannabis family, but we will discuss them in more detail another time.

We each have our own cannabinoid system known as the ENDOCANNABINOID SYSTEM.

Commonly our systems become under used and dormant.  Some illnesses such as Fibromyalgia have been linked to a clinical Endocannabinoid deficiency.
When the ECS is firing on all cylinders, it helps or bodies achieve homeostasis and even treat numerous common conditions.

CBD has been shown to have many wonderful properties.

These include:

Reduce Inflammation
Anti spasmodic
Anti anxiolytic (reduce anxiety)
Anti depressant action
Anti Psychotic
Treat Epilepsy
Relieve pain
Anti Emetic (treat nausea and vomiting)
Treat inflammatory Bowel diseases
Neuroprotective agent
Treat skin conditions
Encourage bone health and growth
Anti proliferation effects ( stops cancer spreading) and anti angiogenesis (cuts off blood supply to tumours) in cancer.
Symptoms of diabetes.

This list is by no means exhaustive but gives you an idea of what a wonder compound CBD is.

It is essential at this point to emphasise what I mentioned initially, the entourage effect.
CBD is great, yes, no doubt, BUT it's even better when combined with other cannabinoids. CBD alone (CBD isolate) has been shown to be less effective when compared with whole plant extracts that contain some of the other cannabinoids.

CBDa, CBDv, CBC, CBG (to name just a few) and of course THC all work  best when taken together.
Different products contain different amounts of each cannabinoid so it is useful to request lab test data to see if you can see what the cannabinoid profile is.
This way you can see if there are higher levels of CBDa to treat inflammation for example.

For me there is no comparison, it's whole plant all the way. 

For help choosing a CBD product to suit your needs, and for details on what products I use to help my symptoms, you're welcome to apply to join our closed group "CBD HAVEN" **

Thanks for reading and good luck on your CBD journey.

Gentle hugs as always ❤️❤️❤️

Future blogs will feature more information on the ECS, Cannabinoids, terpenes, medication and CBD and so on.

** please note we have criteria for joining so do read group description before applying and be sure to answer all 3 questions.

Monday, 26 March 2018

"Just" Fibromyalgia

Your vision blurs and doubles but nothing can be done...its Just Fibromyalgia
You cannot stand bright lights, going around like a Z last celeb with your sunglasses on.. it's just fibromyalgia

You cannot distinguish noise so conversations are hard to hold.... it's just fibromyalgia
Those noises you do hear set your teeth on edge.. guess what?  It's JUST fibromyalgia

Your migraines floor you and your body hurts all over, but you know what?  Is just fibromyalgia
Every day is like you've got flu.  Every step like walking through glue.... Yup, it's Just Fibromyalgia

Trying to hide the grimace from a simple touch, lying in bed recovering from getting up,  you're ok,  it's Just Fibromyalgia

Two words that cover so much "Just Fibromyalgia" yet don't do justice.  Much like "You don't look sick" We should be pleased to hear.
Fibro is the chameleon, for one the battle is fair and days are just a little tough for others days are long and hard and make you think "I've had enough"

But remember you're not alone, there are others that feel your pain.  Together we will keep on fighting,  never giving up. 

So every day think of one thing that makes you smile,  keep hold of that and never forget,  you're not alone,  you're still alive. 

#invisibilityhurts #justfibro

Sunday, 25 February 2018

The Black Dog

Feels like ages since my last blog but it's actually only been a couple of months.
A very very very long and dark couple of months.
One of great reflection and introspection though.

I am depressed.

I'm not ashamed to say it.

For the past 4 years I've been on anti depressants.

Following the birth of my wonderful son I suffered severe Post Natal Depression (PND) and started taking anti depressants.
And was actually well controlled.

My history of depression and  diagnosis of fibromyalgia (plus many other conditions) were two different parts to my story, but I've so often been angered, upset, frustrated when professionals want to focus on the depression, rather than looking at fibromyalgia as a physical condition in its own right.

This fear of judgement causes great anxiety, it's reached a point now where I suffer extreme social anxiety.  I can't even comfortably talk on the phone these days. Even the thought of it, typing about it here now is making me anxious! How crazy is that!

Do you have any idea how hard it is to battle the system and yet deal with the anxiety to just pick up the phone and chase an appointment!?

This is foreign to me, I was never the anxious one. I was the confident competent nurse who helped save lives!!
Now I'm a shadow of that person.
I'm not beaten.

I'm still climbing out of the hole now but the first step in training the black dog is to acknowledge him.

So even in the face of my battles with health, my partner's struggles with depression, my son's learning difficulties and facing homelessness.


We will get there.
We just have to take our time and accept help when offered and continue to fight for it when it's not, no matter how hard that is.

I know I am not alone.
We all have our individual battles to face, but do you know just how common depression is within the chronically ill!?


It's HUGE!

However we need our health care professionals to see that it is a symptom of our conditions and NOT the cause.
We are depressed BECAUSE we are in pain day in day out, hour by hour, minute by minute.
We are NOT in pain because we are depressed.

My pain is better managed thanks to the wonders of CBD but believe me it's still there, and some days I am still in agony.
This recent extreme cold weather having caused a massive flare.

But you know what!?
The good thing about this clash with the black dog? 

Now I actually KNOW I AM depressed but my pain IS NOT worse because of that.

To me that's a HUGE affirmation. it proves to me that what I thought is true. When all those "professionals" choose to gloss over the condition and focus in on depression as the cause to all our woes.

I shall continue to battle and share my story.

So please if you know someone with chronic illness.

Don't tell them to snap out of it.

Don't tell them Its all in their head.

Take the time to LISTEN and be there.

Help them make that phone call maybe?
Write that letter.
Go with their appointment.

On that note I'll stop babbling, once again thanks for reading.

Sending gentle hugs to all ❤️❤️❤️❤️

Sunday, 21 January 2018

Waking up


I'm finally off Amitriptyline!!!!
I've been off it a week now and despite still getting over the flu,
I'm not joking but it feels like I've woken up!!!

I've been trying to get off it for so long but my nerve pain always flared.
That drug really did turn me into a fat zombie!!

Amitriptyline is an old school drug (originally an anti depressant in higher doses) and is often the first thing thrown at us fibromites as it can dampen down nerve pain.
I can say yes it did do that, hence why I stayed on it so long,  but it also made me extremely drowsy. Thanks to my chemical sensitivity I could only tolerate a small dose so I never really twigged with the insidious grogginess and the intense carb cravings. Sugar in particular!
Sugar, as many of you know is so incredibly bad for us so I was just making things worse!!!!

Don't get me wrong, I'm not cured, I'm still writing this whilst lying in my bed but my brain has woken up!!! I can't tell you how happy this is making me.

These pharmaceutical drugs get pushed at us so easily and yet they can do so much harm. We trust our doctors, of course we do, they're the experts BUT with an illness like fibromyalgia we need MORE.

We need vested interest.

So many of the so called experts still harbour doubts about fibro because it doesn't show up in standard testing.
No x-ray or blood test will tell you anything.

We don't get functional MRI scans that would actually show them that our brains are working differently. Firing way to much, our central nervous systems in overdrive.

We don't have our Substance P measured to demonstrate that our pain levels are 10 times higher than a "normal" person when experiencing the same stimuli.

BUT all that aside.....

Thanks to CBD, (cannabidiol) which is one of many wonderful cannabinoids found in the cannabis plant.

I've now come off {over months mind you}:

Oxynorm (opiate pain relief)
Tramadol slow release (strong long acting pain med)
Zopiclone (sleeping tablet)
Lyrica/pregablin (nerve pain med)

In addition
My doses of standard tramadol has more than halved.
My dose of anti depressants has halved.
My migraines are also much less frequent.

CBD is legal but underutilised.
Our medics are quite frankly ignorant about it. When in group we hear from a member that's had a positive experience after an appointment we all get so excited!! Maybe the tide is turning.
We need access to WHOLE PLANT CBD without being judged!!
It's reefer madness gone insane!!

I could go on but you've done well to read this much so I thank you.

My eternal thanks to #cbdbrothers they've given me my life back.
I dread to think of the dribbling mess I'd be if I was still taking all those chemicals.

Anyone wanting to know more about CBD we've a support group
CBD consumers group UK/EU
(Be warned though we don't allow bigotted trolls in)

Sending much love and gentle hugs to you all. ❤️❤️❤️❤️❤️