Friday 11 August 2023
Sunday 9 June 2019
(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.
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).
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.
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.
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.
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!!
Sending gentle hugs to all who need them.
Awareness is key. 💜❤️💚💙
Tuesday 2 April 2019
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.
Monday 11 February 2019
I wobbled on unsteady legs holding onto my husband and the walls to get to the bathroom.
Then back to sleep. Keeping my eyes lids open was an effort.
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.
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.
"You just need to get a bit of fresh air" and the old "you need to get out more and do some exercise".
Saturday 9 February 2019
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
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.
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!
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.
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.
It's not THE answer though.
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.
Saturday 15 September 2018
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.
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
It's so nice to be able to write a positive blog for a change.
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