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.