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Thursday, 21 November 2013

Welfare Reform Impact Research, Carers, disability & that roller-coaster ride...

Hi guys, it's been a bit up and down again this week!

Remember I agreed to be involved and share our story with the Welfare Reform Impact Research people? Well today was the day! There were two researchers today.
Thankfully they were both friendly and easy to talk to and although there were a lot of questions to get through, it was a good experience. I felt they listened so far so good!

It's never easy being involved with this type of project but it's so important! Only by sharing our stories and honestly telling our Government just how badly current Welfare Reform changes are hurting disabled people and their Carers can we hope to find and shape a better way!

We had a bad night, there's been an increase in seizures too and Coo's developed a cough and temperature so I really wasn't surprised when our GP phone about the blood tests from last week. Seems there are yet more problems for Coo and I. The AED (Anti Epilepsy Drug) levels are up, the white cells are up and the blood calcium levels are on the low side too.
Coo will need more tests and the calcium levels will need to be monitored for now as for the Phenytoin (AED) levels? Well, he is now right out of the safe range and not for the first time - but an infection or for that matter, anything much else going wrong, really causes the levels to fluctuate!

Now he has a temperature and sniffle, we've decided to batten down the hatches and sit it out for a bit! If things deteriorate we'll adjust the doses again but it's not unheard of for things to settle so...for now we wait!

This time last week we were having a lovely respite day at Glasgow's Christmas Celebration and today? Coo's been asleep and seizing all afternoon! Being a Carer sure is a roller-coaster ride! I'm off to dig out my hard hat again as I've a feeling I'm going to need it!
Let's hope for some more settled times for us all!
Maz x


Jayne Egan said...

Hope Coo's seizures settle soon.You need a lot of stamina as a carer dont you? Hubby has woken me everyday at around 5 am with nightmares caused by his meds/ depression so Im on auto pilot. He spends a lot of time wrapped up in bed nowadays so I can at least have some quiet time in between my pennypinching and crafting. Hope you have a peaceful few days hibernating xx

Maz said...

Hi Jayne, I know what you mean! It sure is a roller-coaster ride for Carers. I sometimes feel we just tend to lurch from one crisis to another! Anyways, we're still hanging on in there for the moment! Stay strong my fellow Carer friend!
Maz x