Today I’m off to the hospital to have my IVIG. Just in case you are wondering it’s intravenous immunoglobulin and it’s an infusion which is one of the few treatments for my condition, Stiff Person Syndrome. It’s not bad, I go in, sit in a recliner chair and have my weight and bloods tested before being fitted with a cannula and receiving my infusion. Then I sit and rest for around four hours. Every half an hour an alarm bleeps and the infusion is pushed through a little faster. Then I’m given a little flush of saline through the drip and sent home, usually with the cannula in place so they don’t have to fit it again the next day.
I have my treatment on a day ward along with around five other patients. Sometimes I chat, sometimes I read and sometimes I drop off to sleep. It’s all very relaxed. This week I have a new audio book to listen too if I’m in the mood. Before I’ve been there for five days, but this week I think it’s only two. I say think because it will depend on whether they can fit me in again next month. I normally have five days every three months, but my consultant wants me to change to two days every month.
I’ve always enjoyed the Easter holiday but this year I’ve not really been feeling it. I’ve not been well for a few days now which hasn’t helped but that’s not all I mean.
In the past I’ve enjoyed Easter Celebrations at church. But I’ve not found a church like my old church where we used to live. It’s strange because it felt like my family there and when we moved we tried a new church which made my old church seem boring and stuffy. But the new church didn’t work out because I didn’t feel comfortable there. So, there has been no church.
In the past I’ve enjoyed Easter celebrations at the kids’ school. Easter Bonnet parades, egg decorating competitions, Easter assembly. This year there was nothing! I can understand it with the girls as they are older now, but my youngest is only seven and his school did nothing to celebrate Easter.
In the past I’ve enjoyed Easter activities with the kids, baking Easter biscuits or making our own chocolate bars but I felt too ill this year and the kids were not interested. We just about managed a little Easter Egg hunt on Easter morning. I felt proud that I’d managed to label the eggs and hide them. That was my effort.
Easter lunch was nice, hubby cooked a fabulous lamb dinner. I didn’t even get up to help him. I think the highlight of the day was probably watching Charlie and the Chocolate Factory with Star in the evening.
We didn’t manage to go out on our planned Easter Egg hunt at a National Trust Property.
We still have two weeks left to fit in some fun activities though. I’m thinking of surprising them with a trip to the Science museum, but it really depends on my health. Fingers crossed.
Curry and Casualty
Hubby went out again on Saturday Evening. I felt ill but I said I could manage the kids alone for one night. We didn’t even have a take out! Go me, I cooked dinner, albeit a curry from a jar. Boo made some fantastic naan bread all by herself, what a star she was, she insisted on helping me with dinner.
Usually when hubby goes out I have the kids in our room and we snuggle on the bed to watch Casualty* before they go to their own beds to sleep. They watched it last week where it ended in a car crash with some of the main characters. They survived the car crash but we all knew that the man was already dying with a brain tumor. Anyway, to cut a long story short, he died, but right at the end of the program. We were all in tears it was so sad, but I’m so glad that I let them watch it because of the way he died. You see, they could have killed him off in the car accident, which is probably what you expect from a television drama, but no, he died peacefully, with his wife and baby daughter by his side. There was no struggle, no pain, just a peaceful slipping away which was so sad, but then so lovely. I was glad that my kids could see that death doesn’t have to be so awful. It was very moving.
*Casualty – A BBC hospital drama