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 

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