Tuesday, 1 August 2017

Allodynia and Hyperalgesia


Allodynia is a type of pain associated with Fibromyalgia and is considered a rare type of pain. With allodynia, there is a triggered pain response from stimuli that does not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation or "sparkler burn". Clothes will hurt against the skin. Even a breeze will feel painful against the heightened and tender skin. There is no exact cause for allodynia, but it is considered to be from central nervous sensitization where there is an increase of excitability in the neurons of the central nervous system. As such, harmless stimulus – like a light touch – activates the nociceptors which are usually activated only in response to intense stimulus causing damage to the tissue and thus causing pain where there should be none.

The pain caused by touch is called tactile allodynia; when caused by movement, it is mechanical allodynia. Thermal allodynia is related to temperature. Other pain conditions can create this response such as neuropathy, post herpetic neuralgia and migraines. In fact, with migraines, allodynia is common in the scalp, although it can occur anywhere.

Allodynia can range from mild to severe and can be all over the body or only in certain areas. It can be continuous or come and go. My own allodynia is one of my main symptoms of Fibromyalgia.  The constant feeling of skin burning.  As I write this I'm aware of my hands, forarms and thighs burning. There's not a lot I can do about it. Sometimes a cooling towel or gel like Aloe or MSM GEL is nice but the effects are limited often offering just a few minutes relief. CBD balm is another thing that does help but rubbing it on is done with gritted teeth as it may as well be sandpaper (I hasten to add it's my skin causing that, the Balm is smooth and soft).

For me, allodynia is a constant companion. It does vary in severity but it's always there.  Some experience it with migraines  however I don't have to have a migraine for it to affect my scalp. Its like someone has yanked your hair leaving a residual bruised sensation. Washing hair is torture as is brushing. You'll have seen I've shaved hair off in an effort to reduce the weight of my hair on my head.
During extreme weather, I also get thermal allodynia that can cause a great deal of all-over sensitivity and makes it difficult to be out on hot days I used to LOVE the sun but now if I'm out I have to be shaded. The opposite is also true, being cold causes physical pain.

Clothing is a common problem with tactile allodynia. There can be a burning or constricting feeling from waistbands, even if they are not tight. Bra straps can create a lot of discomfort. Any clothing closely pressed to the body can seem to be putting ‘pressure’ on the burning sensation, including tags and stitching. Generally, fabric choice can be a real issue as some will seem quite aggressive against the tender skin, but when it is severe, all fabrics will be equally aggravating.
I've ditched the bra, wear clothes inside out and have to wear bigger sizes even maternity clothes to keep clothes away from my skin. I'm one step away from a kaftan lol

I'm currently awaiting a lignocaine (lidocaine) infusion and then the next step will be ketamine!

Here's hoping for relief soon ❤❤❤

https://en.m.wikipedia.org/wiki/Allodynia

https://en.m.wikipedia.org/wiki/Hyperalgesia

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.

https://www.gofundme.com/invisibilityhurts

Much love and gentle hugs to all 💜💜💜💜

Monday, 24 July 2017

Is it me?

Some of you may know I'm a big fan of CBD (the none psychoactive part of Cannabis) this wonderful plant has allowed me to reduce my medications significantly. I'm off my morphine type drug, I was feeling really positive......

(CBD deserves a blog all of its own so I'll leave that for another day ❤)

So what happened? Two particular Health care professional's happened that's what.
What the hell is wrong with these people!?!?
It feels so odd to say that because I was one not too long ago. I can kind of excuse myself as an ICU nurse (I still feel guilty for not acknowledging chronic pain conditions more), but if pain and rehab is your ballywack then at least do your research. 
I knew it wasn't going to go well as soon as the nurse specialist in rheumatology hadn't heard of CBD. She looked at me like I had two heads....hey that's a point!! Is it me? Do I have 2 heads? 
I mean like seriously, No body, and I mean NO BODY would want to live like this. The constant pain, the constant flares, a scalp so sensitive you shave off your hair. Hugs from your loved ones making you grimace with pain.  
I understand how stress makes the pain worse, of course I do. If anyone wants to take away the very real causes of my stress then have at it!! 
To be given no help apart from being told I really should engage with Psychiatric services is quite frankly insulting. 

Like i said I'd gone into this appointment up beat (I'd cut down on so many of my meds since my previous appointment thanks to CBD), making it quite clear that I'm fighting every single day but suggesting I may need more help, another stint in rehab.....and yet I came out a shadow of myself and YES ironically probably in need of psych help.  The people we turn to for help have no idea how much faith we put in them. How much we trust them. How easily they can shoot us down.

This was a couple of weeks back. I've since picked myself up, dusted myself off and gone back to the fight. 

I know now it IS NOT ME, it is NOT all in my head.....unless you are referring to my brain, yes that is in my head (I saw it on MRI)....

So I can wholeheartedly reassure all my fellow fibro warriors (and all other invisible illness sufferers) YOU ARE NOT ALONE and IT IS NOT ALL IN YOUR HEAD. 

I BELIEVE YOU ❤❤❤❤❤

This illness is real and it is Debilitating. It causes more pain than any "normal" person can comprehend. 10 times more intense so I believe. 10 times!! Hyperalgesia it's called if you want to name the beast. This is on top of the migraines, eye problems, allodynia, joint pain, bowel issues, sensory overload, cramps, and so much more......

So I urge you again to share, get the word out. It's the only way we can hope to be listened to. 

Thank you for reading lovely people. 
Sending gentle hugs to all that needs one ❤❤❤❤❤❤❤

If anyone is interested in CBD then please join our Facebook group:

CBD CONSUMER GROUP

https://www.facebook.com/groups/356332264751778/


Thursday, 29 June 2017

Perception

How others look at us, the chronically ill, impacts on our lives tremendously.

I have recently been refused motability and my GP refused to approve my OT's request for a scooter.

We go back to that same old statement
"But you don't look sick"

(And the silent reply "and you don't look .....insert adjective here" )

The thing is. You can't see my pain. No one can. As I've said before I've a terrible habit of playing it down. Wearing my mask.

I want to try and explain my pain to you. This is not intended for you to say "oh poor you" but to enlighten you to the hidden suffering that people with hidden illnesses endure. I warn you this is a long one. Grab a cuppa and get comfy.

So....where to start.

Before I do, I need you to remember this, it is not a case of one symptom at a time for a short period (chronic pain by definition is pain that persists after 3 months) but ALL of these symptoms ALL of the time, going on for more than a year now.

So let's begin....

Some of you may have seen pictures of me sporting half a shaved head (wouldn't been a full GI Jo if I'd had the guts).
This has nothing to do with fashion I assure you. My hair literally hurts. The weight of my hair pulling on my scalp causes pain. God forbid my hair gets pulled (I've a toddler) then it is literally like how I imagine a knife stabbed in the head to be.

The next knife in the head is this weird "headache" (hard to call it an ache because it's stabbing but hey), the nerves / blood vessels around my temple and the side of my head literally can't be touched. The pain is immense. On top of that, is the random, out of the blue ice pick in the brain agony. That one you literally have to cradle your head and DO NOT MOVE until the ice pick let's up.

Added to this is the good old migraine. Centred mainly around my right eye of happily gouge it out with a rusty spoon at times.
As an aside, turns out my eyesight is failing too. Nothing correctable it seems but structural and not improved by glasses, knowing that will likely deteriorate is really scary.

Following on from that is rather boring neck pain. Base of skull pain.
Shoulder pain.
Back pain from top to bottom.
Hip pain
Knee pain
Ankle pain.

These are all up and down like a yo yo, the "worst" but can change in the blink of a site eye.

All this is wrapped up in skin that hurts.
This is really hard to understand for some I think.
Remember that whacking bruise you got from hitting your leg off a table or the like? Apply that tenderness (when you press on bruise) to your ENTIRE BODY......and now burn it.  Sunburn I mean. Bad bloody sunburn ALL OVER.

Clothes hurt me, cuddling my son hurts me. Ahh jeez I could go on and on, I think you get the picture.

Add to this light, noise, smell over sensitivity my poor nervous system is ramped up constantly.

Now don't get me wrong they're not all at max all of the time. They are all there though ALL OF THE TIME.

None of this is visible. You can't see it. A lot of you probably don't believe it.
It's somewhat incomprehensible. All this pain and suffering non stop.

I think maybe you can see why I get frustrated, upset, angry when denied something that would really help.
Make my life more bearable.

I rarely get out. The car hurts me. I can't walk for distances. Pain and fatigue stops me after 20m. I can't push my wheelchair myself as my hands and wrists hurt (oops missed them off my list). Yet I am not entitled to a scooter because I will become complacent and "stop trying".

I'm getting some relief from CBD and I'm very passionate about this, I'm desperate to find something that works for all of my pains. This is another thing not available on prescription of course. Not everyone knows about it though and of course money is an issue.  Doctors would still rather prescribe medications that have so many interactions and side effects they can sometimes make matters worse.

I guess the point of that essay is to implore you to look beyond the mask we wear. Consider the pain and suffering endured daily.  You may be the person affected or have a loved one who is.  I ask you to please share this blog.

Awareness is needed! This awareness is needed in the medical field too, knowledge is sadly lacking when it comes to Fibromyalgia. I know other sufferers of invisible illnesses feel the same. To all of you suffering I give you the very gentlest of hugs.

Thank you so much for getting through that ramble, you taking the time to read it is the first step.

I do have a Go fund me page if you are in a position to help at all.

Much love to all, keep fighting peeps xxx

Sunday, 28 May 2017

An up hill struggle

Blimey O'Reilly it's never ending!!
I've had enough of this ride, can I get off please!!???

I've been in a flare for a while now with the severity going up and down.
Well last night and this morning I'm in the worst flare to date!!

What's a flare you ask.

It's different things to different people. Not all flares are the same. If someone says to you they are flaring, please don't dismiss them. They are telling you that their pain etc has spiked and they are struggling to function.

For me the skin started last night. All over sun burn. Clothes or even BREATH touching skin causes pain. I've now got all my clothes, Inc socks, on inside out. Something I've had to do for a while but now my old faithful top is causing pain too. So that's inside out as well.
On top of that is bone, and muscle pain. My entire body hurts. I can barely move. My ribs hurt to breath. Every joint hurts. It's hell.

What did I do to set this off you may wonder?

I sorted out our kitchen drawers ahead of having to leave our house (another story).  That's all I did though. I even had a chair positioned to help.

Life with Fibromyalgia is life on a knife edge.

You never know what will set you off.
Granted with me my tolerance level is very low, I will invariably pay for any activity.... But cleaning the drawers!!!??? I mean come on!!!???
How the hell are we going to manage moving house with a burden like me and a 3yo!!???
My partner is amazing but he is shattered.

My point dear readers is to ask you to please take the time to listen to your loved ones. If you are the person suffering below you will find a link to an interview I did with the journal. Please feel free to share with your family members. Some of you have reached out to me and said how much it resonated with you so please do share the heck out of it.

We need to raise awareness!!

http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below. Being sick and being on disability with zero income is no fun. Especially with a young child. We put ourselves after him. Always. As all parents do. Anyway. Much love and thanks to all 💜💜💜💜

https://www.gofundme.com/invisibilityhurts




Sunday, 9 April 2017

The toll it takes

Its kind of hard to keep track. Its only when you look back it hits you.
The hours lost to pain.
The words no longer able to find
The confidence vanished.
The tears shed.
I can't believe it's been so long since my last update. Oh I'd love to be able to tell you that things are on the up.
Errr NOPE, just when you think it can't get any worse.....oh yeah it can.
My health is much the same, on its way down again. My hips will need injecting soon, I don't seem to have a follow up appointment after all that hard work in Harolds Cross Hospice and no follow up...eh??
Just get on the phone you may say. I can't think how to explain how hard it is to talk on the phone. Writing is one thing. This piece was started a month ago. The phone though. There's no hiding the fact that you can't find a word. Have a total, and I mean total mental block, not one word. You can almost see the blank space. The more you realise what you're stumbling over then the anxiety kicks in and the stuttering starts.
This is me remember, the ICU nurse. Never had a problem talking, my friends and colleagues can attest to that! Lol
So, the phone call goes unmade.....
That seems so insignificant now though.
My darling partner is finally divorced from his ex.
I will soon (and my 3yr old son) will be made homeless.  Oh and having to rehome our fur babies that we've had 10 years!! That's heartbreaking enough as it is!!!
No income, no savings, living hand to mouth on disability allowance. Waiting on a carers allowance appeal. Yup, appeal. I'm not disabled enough. Ugh.
So here we are appealing for emergency housing. 
Sounds so dramatic but it's actually true.
When you are really ill, you rely so very much on others. The stress of all of will only serve to make me worse (dread to think how).
Again I stress, I'm not alone, these struggles are not isolated. Please if you know someone with a chronic illness, just see if there's anything you can do for them? Can you make that phone call?
Once again I've waffled on.
Thank you so much for reading this, please share my story if you can.
I recently did an interview for the journal.ie which I would love for you to read, watch and share.
I've not mentioned CBD here but you will see me talk about it in my interview.  I'll discuss it properly at another time.
http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond
Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.
https://www.gofundme.com/invisibilityhurts
Much love and gentle hugs to all 

Monday, 3 April 2017

A public letter to Simon Harris Minister for Health AND my local TD


Dear Simon,

I am pleased to say I was recently awarded Disability allowance. 

That's where the good news ends.

My partner was refused Carers allowance!!! 

We have appealed but is there any way you can help us on this? They stated I wasn't disabled enough. Its a sick joke. 

With this and the ongoing issue with medical cannabis. And the press glossing over the fact that 10's of thousands of pain sufferers are going to be left with no viable alternative to opiates. 

I can tell you this without a shadow of a doubt, as I have seen both sides of the coin now, "We" are simply desperate for an alternative. One that is less likely to KILL US. That statement is not an overly dramatic one. It is fact. Opiates kill. Cannabis doesn't. 

I haven't heard from you in a good while. 

I trust you will make time to reply to me this time. 

Regards, 

Jo Allen 

An update

Hi everyone, I wanted to check in with you all and let you know I'm not being rude, I have not received any of the money recently raised yet so I can't show you what you've got me.

I was just concerned that people might be thinking I was ungrateful. Most definitely not!!! I love that people would do these things for me. Honoured in fact.

I'm pottering around, trying not to spend too much time in bed (she says lying in bed shhh 🙈🙊).
I've been flaring now for 5 days, at least, and its exhausting.
My whole body is burnt and bruised with no outward evidence of injury. It makes it so difficult to wear any clothes (no I'm not in the buff), or lie on anything but my softest bedding in my softest PJs.

When I get some of the money its on my list!
Along with a lot of things lol

Anyway, thanks again and much love and gentle hugs to all.

💜💜Jo💜💜

Sunday, 26 March 2017

Happy Mothers Day!

Happy Mother's Day to all you wonderful mothers out there!!

I am sure I am not alone and spending this lovely day in bed, in pain.

Not just "normal" pain though, but this incredibly awful Skin Flare. Its hard to describe, kind of feels like your skin is on inside out, all over body sunburn.  I can feel every stitch of clothing and bedding and it hurts. There's nothing I can do to help except take my heavy artillery meds and hope it passes.

What did I do to deserve this one you ask?

I went out for a drive with my boys yesterday. Yes, I sat in a car for an hour.  That is it!! Oh and I pushed my darling boy on the swing in our back garden. Let's not forget that one!! Ffs!!

As a result I didn't sleep well, tossing and turning (waiting to basically pass out) and when I did sleep, I woke up in agony.

My Darling boy climbing over me this morning was insanely painful. Sadly he is too good at saying Ouch because it leaves my mouth before I can stop it.

But I pasted on a smile and thanked him for the wonderful card he had made (thanks Daddy) and hid my agony to give him a cuddle.
His my relief when I knew they were going out so I could suffer in silence. Cue mummy guilt (my constant companion). She's a right b@tch that one. Follows me around constantly.

Anyway, I know I am not alone. It saddens me to see just how many people are living a similar hell to me.

To you, if you are reading this I want to say. Stop. Take a breath. Take a moment to think about what's good in your life. Embrace the love and GIVE YOURSELF A BREAK!!  Don't be too brave, take your meds, take it easy.  Shut mummy guilt in a freaking box and shut the lid! She has no place on your shoulder today.

To everyone else, do you love a chronic pain sufferer?
See if you can do one small thing for them to help them take care of themselves.
Do they need anything from the shop? A shoulder to cry on? A non judgmental ear? Someone to take the kids to the park??

Whatever it is don't let them put on their mask and say No "I'm fine"
Its not true!!
If they're having a good day please remind them not to over do it. There is always a price to pay sadly.

Anyway, that's me done waffling. I'm following my own advice. I'm chilling, relaxing in bed, waiting on meds to kick in.  Listening to an audiobook (can't hold books these days) and giving myself a break!
Its OK not to be OK!!

Much love and gentle hugs to all 💜💜💜💜

Thursday, 23 March 2017

Heartfelt thanks 💜

I want to take this opportunity to thank everybody who was involved with The Great MoJo run (mojo was my nickname at primary school), I am truly thankful.  From the organisers to those who participated and /or donated. Thank you 💖

I have a massive wish list of things that will help me with my daily struggles. Trust me when I say I'm thinking very carefully about what to spend the money on.   I am very conscious of all the hard work and effort that went into this event and I want you to know just how much it means to me.

This is not just about money, this is about you all helping me with my pain and daily struggles.

I am truly blessed. Thank you!!





Friday, 10 March 2017

Humbled

Huge day tomorrow.

https://www.facebook.com/The-Great-Mojo-Run-1138175352947409/

The MoJo run is on tomorrow.
I still can't believe that my friends and neighbours are doing this for me. It is truly humbling.

Love and Gentle hugs to all 💜💜💜💜💜

Friday, 17 February 2017

The rehab bubble

As some of you will know i recently spent three weeks in Our Lady's Hospice in Dublin.

To say it was emotional and challenging, is a HUGE understatement.
I truly cannot speak highly enough of them. I count myself amongst the most fortunate to have been able to access such care. Its been a long time coming but there are those out there that just cannot access such a service. They are stuck in the same hell I was with no hope in sight (believe me that's exactly what it felt like, hell).

The team is amazing. A true multidisciplinary team. Between the nurses, doctors, physio's, OT's, social work, ancillary staff, portering, they are all fantastic. They truly wanted to get me back on my feet, help me to become me again.

To begin with it was quite traumatic, telling my story again and again. I was pure exhausted from crying my heart out.
One of many such meetings was with the clinical nurse specialist who had me in tears by stating off by saying just 3 words.

"We believe you"

I literally sobbed. She went on to acknowledge my pain, our struggles as a family, just everything. When you live with an invisible illness its so very hard to live with the judgement. The "you look too" "you don't look sick". Those phrases burn deeply. Its not just the phrases though. It's the looks too. I hang my head these days as I don't want to see people looking at me.

As well as changes in my medication, injections into both hips, I also  had daily Physiotherapy, Hydrotherapy and Occupational therapy. Unfortunately my heightened sensitisation (yeah thanks Fibromyalgia) meant my eyes and my ears were being constantly bombarded. Those bloody lights and the NOISE!!! omg it's constant!! That stimulus sadly meant I was hit badly by migraines. That b@stard meant some days I just couldn't do what I was there to do. I couldn't lift my head off the pillow.
I took to walking around like a pop star, sunglasses a permanent fixture. Not for vanity but necessity.

Anyways it was easy to forget that when you are in Hospital getting such amazing treatment, you are actually living in a bubble. No 3 year old, no stairs, no bills, no other stresses.

Back at home that bubble ain't there. Just pure harsh reality. I am still in a back to reality shock state, but I'm glad to say I am walking without my crutches in the house. I am able to climb the stairs a couple times a day. I can even leave the house some days (wheelchair on standby, crutch in hand, but that's ok).
I have to plan plan plan, chose what I'm going to use my energy for that day. Another thing I have to do is be kind to myself. I'm fighting a daily battle, it is incredibly hard, but I am TRYING!!  Thank you all so much for your kind thoughts and words. It means a lot.

As always much love and gentle hugs to all, don't give up!! 💜💜💜💜

Please please share my story, spread the word, share the love.

If you are able please help me continue my fight. 

http://www.gofundme.com/invisibilityhurts 

Friday, 10 February 2017

An injustice!!!

I had a post here ready to go about my stay in the rehab centre in Harold's Cross Hospice. I am going to put that on hold just for now as I simply MUST comment on the HPRA report released today.

I am quite confident that I am not alone when I say I am thoroughly disgusted by the reference to chronic pain in the afore mentioned report, and the overt exclusion of chronic pain from the list of approved conditions.

Firstly I will state that, of course I am delighted for those people that this report will help. I would have to be heartless not to. However, I feel a whole range of emotions about being essentially devalued once again.

I have attached a screenshot of the key part of the report (it's 80 odd pages long so good luck if you want to read it yourself, I'll post the link at the end).
I will paraphrase a bit here because my memory is that bad.

"while the evidence for cannabis in the treatment of chronic pain is acknowledged, the HPRA does not support it's inclusion as a specified medical condition for the following reasons"

1. The causes of chronic pain are wide and varied -

Yes they are. And?? Pain is pain is pain. Cannabis has been shown to help pain.   Next!!

2. Physical, social, emotional and spiritual factors influence a person's pain and therefore makes it more difficult for a doctor to assess it's effectiveness.

Obviously written by somebody never affected by chronic pain, because of course it bloody is!! We are social creatures, we are affected by our environment and the lives we are part of. The life of someone in chronic pain is one that can literally dig you into a hole that it is extremely hard to get out of.  Chasing pain relief is an ordeal in itself. The stigma attached to an individual seeking pain relief is quite remarkable. You leave yourself laid open, bare, inviting judgement and having to justify your very existence it is nothing short of soul destroying.

3. There are a large number of authorized medications that are of proven effectiveness....

Oh really, are there? And do they work for each person in the same way? Are they easily accessible without judgement and being labeled a drug seeker? Are they free from risk of addiction? Will one drug work for your condition infinitely?
That would be a big fat f@cking NO!!!!

This leads us on to a doozy at #4

4. Chronic pain is common. 

Well pardon me, but no shit Sherlock. The number of people that would be looking to access MMJ (medical marijuana) for their pain relief is HUGE!!
Let's ask ourselves who would be the loser in that equation? It certainly wouldn't be us the potential user. It's the pharmaceutical industry and ultimately the government through revenue it brings.

I personally had been in touch with Simon Harris, Minister for Health, on my journey to date as I've tried and failed to get help. Here again it shows he is about as much use as a chocolate fireguard.
I feel hugely let down. I can't actually list the number of feeling that have been spurred by this but you can be guaranteed they are not positive. I will continue to fight and I ask, nay beg! That you petition Simon Harris on behalf of all the chronic pain sufferers that have been sorely let down by this latest failure. 

The fight goes on. 

As always much love and gentle hugs to all, don't give up!! 💜💜💜💜

If you are able please help me continue my fight. 

http://www.gofundme.com/invisibilityhurts 


Sunday, 29 January 2017

The story continues

As some of you may know 3 weeks ago I was forced to visit ED again thanks to the pain associated with my Fibromyalgia (blog title Third time unlucky).

I've been in touch with the minister for health Simon Harris before and I've just sent him another email, I will not go quietly, will not suffer in silence.

"Dear Simon

Yet another unsuccessful ED visit left me quite literally at breaking point. 

I received atrocious treatment from a senior nurse who deigned to comment on me in my wheelchair. 

Asking me what I was doing in the chair, could I not walk, after saying "no not really" her response was "well how did you get in the chair". This is absolutely DISGUSTING treatment of any person in a wheelchair, at the time though I said nothing and justified myself to her. 

This however, is not why I am writing today. I will get dates etc and be in touch re an official complaint. By the way I've heard nothing from Tallaght hospital....

You may recall I was waiting on Rheumatology and Pain clinic appointment's. 

I saw Rheumatology assessment physio in December. At this point I was referred to Our Lady's Hospice in Harold's Cross for their programme. 

Following my disastrous last visit to SVUH my partner got on the phone and basically begged for my assessment to be done as an emergency. Finally we were taken seriously! My ED visit was Monday and I was seen in OLH on the Wednesday. 

I was finally acknowledged for my condition and was admitted as an emergency the following week. 

I am at the end of my second week as an inpatient and will be back next week for a third. I count myself as lucky to have accessed this service. Many people in similar situations are not as lucky. 

This brings me to my reason for writing. 

I've been following the progress of the Medical marijuana bill avidly. I strongly believe that this needs to be made available for those of us with specific conditions. 

However, it is not as simple as that. I MUST be available on the Medical card. If not, yet again, those of us who need it most will not be able to access it. History will repeat itself like with the Nabilone. 

I'm doing lots of research into the benefits of cbd and am in contact with suppliers from the uk. I am also part of a team of users who are starting a consumer group for users of CBD. 

I would appreciate your feedback with regards to whether we are looking at CBD or a full spectrum product (some people should actually avoid THC), and whether you plan for this to be on GMS. I do plan to reach out to Vera in the meantime too."


Tomorrow I'll be back in for week 3 away from my boys, the fight is real and unrelenting.

Please support those of us with invisible illnesses. Share share share!!

Gentle hugs and much love to all 💜💜💜💜

Saturday, 14 January 2017

A Glimmer of hope

I wanted to put this in with my last blog but I also was very aware that I'd been babbling on.

I will pick up where I left off in my previous rambling.
Third time UNLUCKY http://invisibilityhurts.blogspot.com/2017/01/third-time-unlucky.html

So....We got home last Monday night and I literally hit rock bottom. I felt myself disconnect, I was numb, I couldn't stop crying. I took every tablet I had to hand (I know) and I eventually slept.
Thankfully when I woke up I did not feel like I had the night before, that had scared the poo out of me.

On the Monday I had received a letter from Our Ladies Hospice in Harold's Cross stating they had received my referral from the rheumatologist in Vincent's. I put it down, just thinking Oh well...I'll wait. Then of course ended up in ED. Told by the doc there that I'll just have to wait.

My man was not giving up though. He got on the phone and spoke to a lovely lady in patient services at OLH. She said she would look into it for me.
Let's just say I didn't have the best day Tuesday, Brian ended up phoning her again bless him because he didn't know what to do with me.
He gets off the phone this time and she had only got me in for my assessment the NEXT DAY!!

Wednesday I went for my assessment. I met with an Occupational therapist, Physio, and Nurse and my faith in my peers was restored!!
They knew EXACTLY what I was talking about. I can tell you I dehydrated myself with the amount I cried. The understanding, empathy and compassion was as it should be. They all agreed that I needed an emergency admission.

I left that day thinking "it's ok, I can cope for another couple of weeks, only a couple more weeks"

Got home and into bed Wednesday afternoon, received a phone call a couple of hours later saying I was being admitted next week!!
I was overwhelmed! I think I must have thanked her about 20 times lol.

This brings us to tonight. I've knackered myself packing. Topped up on my tablets and am hoping for some sleep tonight (more than 3 hours PLEASE!!!). I go in for 2 weeks tomorrow. It's a Mon to Fri ward so I get to come home to my boys at the weekend.

I am filled with mixed emotions, I am excited, kind of. I'm scared (what if last Wednesday was the anomaly and no one will understand), I'm heartbroken at leaving my son.....But...He needs a Mum that can do more than lie in bed crying.

I'm not giving up yet.  Watch this space!!

Once again thank you for reading.

Please Please share folks. Let's raise awareness! People with chronic illnesses do not WANT to be in ED, in fact I'd go as far as to say most of us would try ANYTHING else first.  If you are in the medical profession please remember compassion, it may not seem much to you but believe me it means A LOT!!

Also the Link to my gofundme page is below. As embarrassing as it is to need to ask. This is what it has come to.

Gentle hugs to all 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts

Tuesday, 10 January 2017

Third time UNLUCKY

You know what its like...you think it cannot POSSIBLY get any worse!!?? Then..guess what!!?? Yup..it pigging does!!!!

So.....I'd gone to my doctor last Wednesday and she saw the state of me, we made a plan that I go back in on Monday to get bloods done and formulate a plan. Monday arrives and she admits that she wanted to send me in to hospital the previous week, but with the bed crisis being critical she didn't want to put me through it. Now though, my condition had gotten so bad my motor function was being affected. I was spiralling down and we didn't know why!!!

We decided that as my Rheumatologist and Pain doc was at St Vincents in Dublin, then that's where I should go. Neither of us for one minute thinking they wouldn't give a shite! Sorry but its true.

Anyways.....off i trot to St Vincent's UNIVERSITY Hospital in Dublin!!

Un-flipping-believable treatment. Not in a good way.
Reception staff, lovely, kind, understanding.
Triage? Err not so much. Remember now I've deteriorated to the extent to needing the wheelchair for anything bar pottering to the loo at home. First off, my wheelchair would not fit through the triage door. I kid you not. Its 2017 and my wheelchair could not get through the door and be maneuvered into place. That's not even it though.
You will probably have read me previous blogs about ED treatment well this takes the biscuit. The triage nurse in her fancy navy scrubs looks down her nose at me in the chair and starts to question my NEED of said chair!  She asks me in such a derogatory tone, if I can walk to which I said "well no not really", her reply?? "Well how did you get in the chair then?" At this point I'm a bit shocked so I just say "with difficulty".
Yet again I wear my heart on my sleeve and pour my heart out only for it to fall on deaf ears.

Yes I KNOW I am not dying, and I KNOW I do not have a limb falling off. And yes I KNOW this is not the way to access diagnostics. However I was at a point of true desperation. I was there pleading for help. Begging for help.

What did I get? Incorrect medical advice. Told to just take more drugs. I did inform the doctor I was already taking the max daily dose, she said no, take more frequently. I don't trust my brain any more so I just say okaaaay.  In my head thinking, I'm SURE that's not right. Turns out I was right!!! Imagine if someone didn't have my knowledge (such as it is these days)??
With this gem of advice I get told to go home and basically wait for my appointments to come through.

Yet again makes me ashamed of my peers. Someone does not choose this life. If you think at any point this is a choice we make, think again!

Anyway I've waffled on long enough, again. Thank you for reading.

Please Please share folks. Let's raise awareness! People with chronic illnesses do not WANT to be in ED, in fact I'd go as far as to say most of us would try ANYTHING else first.  If you are in the medical profession please remember compassion, it may not seem much to you but believe me it means A LOT!!

Also the Link to my gofundme page is below. As embarrassing as it is to need to ask. This is what it has come to.

Gentle hugs to all 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts