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 💜💜💜💜

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!!

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 💜💜💜💜💜

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 

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 

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 💜💜💜💜

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