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. 

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.