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