Sunday, 9 June 2019

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. 💜❤️💚💙

Tuesday, 2 April 2019

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.

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.

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 ❤️❤️❤️❤️

Monday, 11 February 2019

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 ❤️❤️❤️

Saturday, 9 February 2019

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 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.