Invisibility hurts

Back in 2016 I wrote this. 

I was inspired to start writing this blog because of the utterly overwhelming response I received to a recent facebook post (see below).  

In all honesty I wrote that because I was fuming and upset.  I just had to vent. I truly had no idea the emotional impact it would have.  I cried when I read your replies.  I think I had allowed myself to believe that I had become invisible and no longer mattered.

So here is the post that started it all......

After a weekend of being unable to walk.....

I wish I could say I made the right decision going to A&E. Not so.

**It's a long post. Fair warning. **

As some of you may know my quality of life has taken a nose dive over the last few months. For the past 4 months now I tend to only leave the house for hospital or doctors visits.

I put up with A LOT of pain. Trying this combination of pills, then the next.

The ones recommended by my pain consultant are not covered by the medical card and cost hundreds a month. In fact I think the chemist was quoted €1000 for one of them.

I've been turned down for hardship funding twice now.

So I go without. Relying on pain killers. Trying with all my might to avoid opiates (morphine).

I struggle on. Staying in bed most days. It takes an awful lot for me to admit I can't take it any more. I avoided going to A&E all weekend as I knew in my heart how those with chronic pain get treated. I was in bed. Crawling to bathroom. Unable to walk.

I held out hope though. When I hobbled into my GP yesterday. Barely able to put weight on my left leg. Unable to use crutches due to wrist pain. No wheelchair, sure how can Brian push 2 of us? I couldn't push myself anyway.

She took one look at me and said I needed a few days in hospital for pain control and a regime put in place that might actually for me.

So I went. Letter in hand.

I sent the boys home. I knew I would wait. But not prepared for the reality of what it would do to my poor body.

It was freezing and drafty. The chairs hard wood.

I ended up spending 5 hours sitting in A&E waiting room. I was stoic for a couple of them. Keeping my mask in place. I don't usually let people see the real suffering. By the 3rd hour I was crying in agony. I could not walk to get attention.

When staff did come out they looked at me crying and said nothing. I'm so ashamed of my former colleagues. I would NEVER have ignored someone in agony. I fully understand the pressures of the ED. I have worked there. However, I am proud to say I never ignored someone who was suffering. If I was too busy I went back or asked a colleague to.

I can't imagine this would have happened if I'd gone to my local hospital.

The reason I didn't was to access rheumatology and pain services. Pah!

The honest truth is I ended up calling Brian to get me as the pain after the 5hours and the sitting and cold had caused my muscles to spasm. Not forgetting my original pain of course. Inhumane is a word that springs to mind.

I got home to my own bed. Made my own decisions on my medication (not something I advocate but I do have a lot of experience and knowledge to draw on) I actually slept.

I am now covered with heat pads. Waiting on Brian to tip me into a bath.

My order of CBD (cannabinoid), that I saved for, arrived just now.

Omg such joy!! It might bring me out of spasm.

The pain is still there. Friends are telling me to go back.

I'm scared. That's the honest truth. I'm still debating.......

I truly feel for all my fellow chronic pain sufferers who fall between "majors" and minors"

Love and gentle hugs to all

❤❤❤❤❤

If you got this far. Thank you.

If you want to share my story please feel free.

Let's hope something changes so that those in such pain are not invisible any more.

#invisibilityhurts 

Trigeminal Neuralgia- Face ache and then some.

As with so many of my chronically ill buddies we generally don't have just one illness.
(Why have one when you can have a bumper pack hey!?)
Thankfully though, they generally don't all peak at the same time, (don't even want to think about that) but for me it is quite common to have a few joining in at once.
My constant companions being, of all over pain from my Fibro, open wound feeling from my nerve pain, plus various ME symptoms being my "usual" companions.
So, when one of my lesser ones rears it's ugly head it's generally met with an eye roll and a loud groan.

Tonights joy is Trigeminal neuralgia. For a proper description see link below. ⬇️⬇️⬇️⬇️ (It's a challenge being eloquent during an attack).

There are a few symptoms of this horrible condition.  So far I've actually been "lucky", as it presents for me as a deep aching, burning sensation down one side of my face into jaw.

Thus imagine my surprise when whilst rubbing my poor cheek I got one of the more typical "shock" feelings usually associated with TN.
Oh. My. God. This was a cry out loud, eyes on stilts, moment.
A WHAT THE F@#K WAS THAT!!??? Moment (whilst knowing exactly what it was).

Thinking noooooo I most certainly don't want THIS monster adding to my current TN experience. Believe me this face ache is horrible enough.
It's a bit like after dental work where the anaesthesia is wearing off, so your face is stinging yet numb at the same time along with aching badly from being drilled and having your mouth open for hours but instead of being just one tooth it's them all on one side. There's more to it but as I said, eloquence isn't in my wheelhouse tonight.

Back in Ireland my pain doctor had prescribed Lidocaine patches which I would cut up and stick on to my face (a great look for scarring your child).  If you  get hosuffer can yourself with TN I'd certainly request them from your neurologist or pain doctor.  I find them more effective than a Lidocaine cream because you have to rub the cream in and keep applying it which sets off more pain.

Sadly however, now I'm living in the UK, my NHS trust does not provide these  patches so I'm down to my last few trying to cut into the smallest pieces I can get away with, position my wheat pack against it and trying not to touch it or move.

Do you know what though, I'm actually LUCKY! I know, crazy talk right, but for some people, that single zap that I'm talking about is their EXISTENCE!

It may only last a second per Zap but believe me it takes your breath away.
Imagine getting those Zaps ALL THE TIME. Runs of them. One after the other after the other. I shudder at the thought.

Triggers can be simple things like cleaning your teeth, touching your face (as I proved to myself), even talking! Attacks can last hours, weeks or months.

TN is another invisible illness that is a quality of life vampire. Where it's sufferers (unless mid attack of course, because it's pretty obvious then that they're sick), tend to look healthy.

As with so many invisible illnesses ignorance remains a major obstacle to sufferers.

Diagnosis can be hard to get, especially if you don't fit the narrow documented criteria.
My own diagnosis was a tentative one as I (up until now) presented with atypical symptoms. At least I'll be able to go back to my neurologist and say I've got my "proper" TN badge.

There is good news though!! When you've got this precious diagnosis there is treatment available.
This ranges from  pharmaceutical options  (but thanks to my chemical sensitivity, I'm unable to tolerate 95% of meds so instead I'll be reaching for my CBD oil and vape),  to surgical procedures that can mean relief for many sufferers.

After writing this I went on to have a few more zaps. Then back to the face ache/soreness topped up with bone numbing fatigue.
I've actually slept today away.

Thank goodness my husband is so good. Helping me and minding our SN son.
I'm now hoping it will go back in its cave.

I will be going back to my Bowen as soon as funds allow as I'm sure that's the reason I'd not had a TN attack or migraine for 6 WEEKS!!

Anyway, as always, thank you for reading.

Sending gentle hugs to all who need them.

Remember #invisibilityhurts so share share share.

Awareness is key. 💜❤️💚💙

https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

An intimate horror

There are many invisible illnesses. None quite as intimate as Vaginal Mesh Injury.

The use of mesh was banned last year following increasing numbers of reports about debilitating effects felt after its use.

https://news.sky.com/story/vaginal-mesh-surgery-suspended-in-england-over-risk-of-life-threatening-injuries-11431613

https://www.bbc.co.uk/news/topics/c7z4n8xjz27t/mesh-implants

Don't know what it is? Put VERY simply it's a super fine mesh that is basically used as a patch to cover a weakened area / hole in tissue that is allowing a prolapse to occur.

Great idea in theory but sadly for some it's a life changing horror.
Why? Because even if the body rejects it by its very nature the bodies own tissue knits into it making it impossible to remove without further damage to the affected area.

Frequently reported complications from transvaginal mesh include chronic pain, infection, bleeding, pain during intercourse, urinary problems, and exposure of the mesh through the vagina. This mesh in some cases can gradually dislodge from the vaginal wall and move into surrounding tissues and organs.

It was a small triumph when it's use was banned in England because this meant that more people would not suffer the same fate. Today however we see it reported that NICE guidelines are allowing it's use once again albeit under strict specifications.

https://www.bbc.co.uk/news/health-47735253

Similar meshes are used for rectal prolapse as well as hernia repair so men are also at risk too.

The onus is on us, the potential patient, to research fully and to reject this as a treatment option.

Please please share this with your loved ones. We need to shout very loud about this.

Sending very gentle hugs to all you warriors out there ❤️❤️❤️❤️

#invisibilityhurts 

I'm not "just" tired.

As you know I usually talk about my primary condition, Fibromyalgia. However, like so many other sufferers, I have multiple conditions as well as Fibro. 

CFS/ME, Migraine, Trigeminal Neuralgia, to name just 3. All of these come and knock me down regularly.

Yesterday CFS came and kicked my ass. It's always there lurking and keeping me from functioning but every now and again it TOTALLY FLOORS me.

As soon as I woke I knew I was in trouble. I always wake fatigued and in pain but this was on another level.

I could barely lift my head. I had to try and get up on an elbow to take my meds but the effort of doing this even with a straw for my water was more than I could handle. I physically collapsed back on the bed. Huffing and puffing like I'd run a mile, 

Immediately falling asleep.

I couldn't hold my phone, couldn't even prop it up and type (like I'm doing today).

My body, head to toe felt like it was encased in lead. Even breathing was an effort of will as my chest wall felt heavy.

I wobbled on unsteady legs holding onto my husband and the walls to get to the bathroom.

I was unable to eat. In order to get some nutrition I had a protein shake sipped through a straw.
Then back to sleep. Keeping my eyes lids open was an effort.

So I slept.

Our bodies use energy for EVERYTHING. When healthy we take these for granted and don't give it a second thought. 

Every cell in our body needs energy to do it's job. To breathe in and out. To swallow and digest food, to move a limb, and so on.  These things are done automatically with our brains in charge running us like a well oiled machine.

When someone has CFS/ME the energy storage and release is out of order. The brain doesn't do things with ease and without thought. Everything is an ordeal.

Thankfully, after 24 hours sleep. Of being unable to stay awake long enough to even talk to my son, let alone play with him, I am feeling marginally better.

Today I am able to stand on wobbly legs.
Walk holding onto walls to bathroom.
Today the phone is propped on my leg as I type. 

I know some sufferers of severe CFS feel like I did yesterday 24/7 and my heart truly goes out to them. 

It's so incredibly scary having your body fail you completely.

So I ask, if you know someone with CFS/ME  please do not think of it as them just being a bit tired.  This is SO much more than just needing a bit of rest. This is complete and utter system failure.

Your friends or family that are affected need your understanding and support.

Not phrases like "a nap and you'll be grand",
"You just need to get a bit of fresh air" and the old "you need to get out more and do some exercise".

Believe me I would LOVE to be able to get out for a walk with my boys, be able to do ALL the things I used to take for granted.

So please, before you speak, just, think.

Thank you for reading.

Gentle hugs to all ❤️❤️❤️

Postcode Lottery for pain

I'm sure you're all well aware of the stories you've heard about people being unable to access the healthcare they need due to wear they live? 

Today saw me experiencing this for the first time.
Some of you may not know that my family and I relocated to UK from Ireland last summer and as such I've been having to start the whole health care thing all over again. 

So far it hasn't gone to plan, today proving this once again.
If it wasn't so painful the conversation would've been laughable 

Today's appointment was with Community Pain Services in Poole, Dorset. I'd been nervous about it hoping for an understanding doctor.
I must say she was that. The consultant was absolutely lovely. Very compassionate and, yes, understanding.
I gave her my collection of letters from previous consultants that detailed what treatment I'd tried and what the plan was going to be had I not moved.

She was open and interested in all my ideas from Low Dose Naltraxone to (of course) Medical Cannabis. She was interested to hear how I'd got on with Nabilone before (Nabilone is synthetic THC basically). Sadly I had to explain that although I had consultant prescriptions I was unable to obtain the drugs under the GMS system in Ireland and couldn't afford to pay the thousands I was quoted privately.

There I sat thinking omg this is actually going to be proactive. We will find something that works!!

Then she said the few words that would become her mantra for the rest of the appointment.

"We don't do that here / not available on NHS"

We discussed lignocaine infusion that I'd had with minimal relief and how the next step was Ketamine infusion, all along she's nodding.... "but we can't do that here".  Turns out that the trust doesn't do Ketamine. I'd have to get referred to Bristol pain services!!! Ah sure, only 5 hours away 臘.
Then onto LDN "not available on NHS" , Nabilone "not available on NHS" and of course Cannabis is "Not available on the NHS", even lignocaine patches are not available on the NHS.  Or rather not available on the NHS HERE!

"So how can I help you?" she asked. I actually nearly laughed.

We agreed that all the things that could be beneficial are not within her power to deliver.
She was however going to ask my GP to prescribe lidocaine cream...do they do it in buckets I wonder?? Small win but a win none the less.

So where to from here??

I do plan on writing to the trust to challenge their pain management provision because apart from the lidocaine cream the only other thing she could suggest was the "pain management program".

For those that don't know this is usually a 6 week or so program where you have to attend and sit in a room for a full day and learn about your pain and how to manage it. 
I've already done "retrain my pain" course, seen psychiatry (who incidentally documented how my depression was BECAUSE I'm in pain 24/7 and NOT in any way causative), try to practice mindfulness etc etc. Besides that I'm not physically ABLE to stay out of bed all day let alone travel to a class and sit all day.

Now I'm not dissing it as for some I've heard that it can be useful.
It's not THE answer though.

Practically though it was clear that my only option was to go private.
However like so many chronically ill this is simply not an VIABLE option. A lot of us scrape an existence, so private healthcare is simply a pipe dream.

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
💜💜💜💜💜💜💜

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 are GETTING MARRIED ❤

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
❤❤❤jojo❤❤❤