The Day That Life Changed

2nd of January will now be the date that we remember as being a bad day not a good day.

The start of the new year was meant to be a happy one but instead became the day that life changed for all the family.

Now a little insight into my life.

I’m 37 years old, married to my amazing husband for the last 11 years. We have two beautiful children

  • Adam is 10 in 10 days time and is the most caring and understanding of children we know.
  • Lewis is 7 and isn’t like your ‘typical’ child. He has multiple disabilities and is dependent on us for all his care needs & his social, physical and mental well being.  I am classed as his primary carer.

Well not now I’m not. I’ve well and truly had the rug pulled from underneath me.

I was admitted to hospital on 2nd January late evening after losing feeling in my legs whilst in the shower. Managed to get out and phone 111 & they sent an ambulance.

I went through A&e and spent 4 hrs lying on a bed in majors whilst blood was taken and lots of scratching of heads.
I was then moved to AMU. Nothing happened on the Sunday but at 6am morning I was taken for a spinal MRI.
Was told nothing obvious was seen.
On Monday evening I was taken to the NRTU and it was there on the Tuesday that I was introduced to my lovely neuro consultant. She was quite concerned by my lack of feeling and sensations from my bra line down and sent me for a spine and brain MRI under contrast ( a special dye is put through a cannula to shown up any inflammations or abnormalities)
I had this late Tuesday night after I had been subjected to the torture that is a lumbar puncture. I don’t think I’ve ever cried in so much pain. My husband had to help hold me down for about an hour +

On Wednesday the consultant came to see us and broke the news to us that I had a lesion on my spinal cord at T1 and one at C3. These lesions were glowing away on the MRI so we’re classed as active and we’re attacking the nerves and the myelin that protects them.

I was also told that I have lesions in my brain but these weren’t active.

These lesions led to the diagnosis of a rare neurological disorder called Transverse Myelitis.

We knew nothing about this condition so did what all of us do these days and Google it! We were shocked by what we read and the consultant confirmed it.

There is no cure for it, there are three groups of people with TM
1 – those who go back to full normal lives with no indicators of their illness
2 – those who recover some of their mobility back but left with some impairment
3 – those that are left with no mobility,wheelchair bound.

As you can imagine we hoped I would be in the first group but as time went on we were told it looks like I may be group 2 or 3

On the Thursday I moved up to the specialist neuro ward and start with physiotherapy, IV steroids (1000mg methylprednisolone) for 3 days to try and shrink the inflammation.

From that day on we have been in a hospital bubble.

Physiotherapy,daily consultant checks and bloods bloods and more bloods..

I was put on more and more pain killers to try and rid of the horrific pain in my lower back. It’s the only place I have any sensation.

On Monday 2nd Feb I was transferred to Snowdon Rehabilitation Unit at the Western Community Hospital

What a change from hospital. It is like a private hospital but better.

The staff are very friendly and supportive,the other 13 patients are kind and caring.

I have physio,OT, psychologist, Dr’s, therapy assistants all doing their best to help me achieve my goal of getting home. I want to go home desperately as I miss my family so much but right now I am in the best place.
I will go home when I can safely manage round the house with a stick or frame safely and use a chair outside.

Right enough from me prattling on.

Till next time

#Transversemyelitis
 

 

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