hospital

Word of the Week – Spending

April 6, 2018 by Anne Sweet 5 Comments

Tuesday and Wednesday I was in hospital having my IVIG treatment. It should have been five days but it’s been reduced to two as I’ll be having treatment again in four weeks instead of twelve. I was happy because the kids are off school this week and I didn’t want to be spending most of my time away from them.

So, Dad took them out for lunch on Tuesday and on Wednesday he took them to see their Nan. I think they had a good time without me, although they did manage to spend a fair bit of money. Not only on the food but on Wednesday they went to a shop near Nanny’s house and bought a load of new books and pens.

On Wednesday I’d still not managed to sort out the shopping so we ended up having take out for dinner, the kids had pizza and grown ups a Chinese meal. No complaints except from my bank account.

Then on Thursday we got to the supermarket, but had decided to go somewhere different where we couldn’t find half the stuff we usually buy and ended up buying a lot of stuff we wouldn’t normally buy. We went to another supermarket nearby but still couldn’t complete our shopping so we’ll have to shop again tomorrow…sigh, at least it will be only for the weekend.

I’ve also bought some new blinds for the kitchen. I’ve been meaning to do so for a while but decided to do it this week, then the following day the blind in the bathroom broke so I had to buy another one! If the bathroom blind had broken first I may have left the kitchen one for another time.

Last week I managed to crochet a teddy bear which was claimed by Boo who loved it. Then she asked me to make her another toy, a mouse this time so I bought the wool for that. Then Star said she’d like a fox so I ordered some more wool. Then today the Little Man asked me if I’d make him a cat! How can I say no? At least they are made with baby wool which is easy to get fairly cheap. I can make them lots of interchangeable clothing from my leftover bits of wool. I’m going to have to buy a new cupboard to store my wool stash in at this rate!

Next week is not going to be any cheaper for me either. We have to go into town for a hospital visit for Star and have decided to have lunch and do some shopping while we are there. We’ve not been into town for a long time. Also, we didn’t manage to have our day out Easter Egg hunting, so a fun day out is on the cards. Only we can’t decide where to go just yet. Graham wanted to go to the zoo, while I thought the Science Museum would be better. He said the zoo would be cheaper but when I looked up the prices it was nearly £10 cheaper to visit the Science Museum. When did the zoo get to be so expensive? Graham would argue that you shouldn’t need to pay to go into a museum!

IVIG, Easter, Curry and Casualty – Keeping it Real

April 3, 2018 by Anne Sweet 6 Comments

IVIG

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.

Easter

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.

7 different pics of my kid in easter bonnets that we have made in past years

here’s one (or seven) we made earlier!

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

Word of the Week – Star

January 26, 2018 by Anne Sweet 11 Comments

On Monday, Star was sent home from school. She didn’t go in on Tuesday and just lay on the sofa all day. Then on Wednesday she had a hospital appointment that she really couldn’t miss.

So Wednesday morning.we set off to the hospital only to find her consultant was running late. We had to wait two hours! The time passed fairly quickly though and Star was great at waiting, in fact she was more patient than her Dad. Then we had a good chat with her consultant. While in his room we saw some post op x-rays that we hadn’t seen before, so hubby grabbed a quick pic. It’s hard to believe that it all started when she was only seven years old. My little girl has been through so much and yet still carries on smiling. Her consultant was a little surprised at how much she had grown in the last year. I think she’s surprising all of us, she’ll be taller than me soon and she’s only twelve.

Star’s x-ray, this is how her spine is connected to her skull!

Thursday she was back at school. She’s been having some problems with some of the kids at school teasing her and getting very upset. The school have been great about it and have told her that there are loads of things they can do to help. The first step has been to move her to a different form class, one that is quieter. So, on Thursday she went into this new class and came home really happy. I’m hoping that things work out for her. We sometimes feel so close to thinking that she’s not going to make it through mainstream school. I so hope she does but when things get bad I can see it all falling apart. But my girl keep soldiering on. That’s why she’s my Star!

If You Fell Down Yesterday, Stand Up Today.

January 15, 2018 by Anne Sweet 11 Comments

photo courtesy of Les Anderson

If you read my post last week, Let Me Not Beg for the Stilling of my Pain, then you would have probably noticed that I was not as upbeat as I usually am. I try my hardest to be positive but sometimes, even while trying, I feel pretty bad inside.

I was really ill, I’d been ill for weeks and I really thought it was time to just give up. But giving up is not really in my vocabulary.

Last week I spent every day in hospital as an outpatient. I received my IVIG treatment for the third time. The first time I’d had very little result, the second time I’d had some good signs but the side effects nearly killed me. This time I was scared about the side effects and had little faith in the treatment. I also harbour guilt for taking such an expensive medication when it was not doing me any good, but talking to other patients they all said I needed to keep going as it does get better.

So, last Monday I had fallen. I had fallen hard and didn’t have much hope in getting back up again.

But, I did. I had my treatment, I have had very minimal side effects, and I feel much better!

Okay, it’s not been a miracle cure, but I have less pain (I have to say that again, I have less pain!!) and I have a little more energy. I feel better inside and my positivity has returned. I’m standing up again. (Almost literally but only for short periods,) and it feels good. I have already been booked in for my next two treatments but I will see my consultant before then. Depending on how long I feel better for he may change my treatment dates.

I have a lot to look forward to this year, and although it started pretty rough, I now have lots of hope that things are going to be just fine.

Let Me Not Beg for the Stilling of my Pain. I need a Miracle

January 8, 2018 by Anne Sweet 13 Comments

It is during our darkest moments that we should focus to see the light - aristotle

photo credit Annie Spratt – Unsplash

Today I’m off to the hospital for my third round of IVIG (Intravenous Immunoglobulin.) The first time I had big hopes that it would be my miracle cure. The disappointment after nearly broke me. The second time I had less hope but thought it was worth it to keep trying, I’d had a lot of people telling me that it gets better each time you had it. I had a little relief from some of my symptoms, the tingling was reduced, I had a little more energy and my twitching was decreased. However, the side effects were huge giving me massive migraines worse than any I’ve had in my thirty year experience of migraines. This week I am prepared, I’m going to keep hydrated, at least three litres of water a day. I will take pain killers at regular intervals, and I’m going to ask for slower infusions which can help. I am hoping that the results will be better than last time and that the side effects will just leave me alone.

I’m going to be honest. Life isn’t good at the moment. I have so many issues going on and I feel useless, helpless, I just can’t cope. How can I be there for others when some days I can barely hold my head up. I can’t deal with it all, it’s driving me down into the darkness. And if life’s problems are not enough, my health is truly depressing me. I’m scared, really scared, I’m not improving, I’m getting worse. Some days I really believe that I am dying.

I need someone to rescue me, to save me, to make everything okay again.
Maybe that someone is me, maybe I’m the only one that can do this. Let me not beg for the stilling of my pain, but for the heart to conquer it. Maybe there is a miracle out there somewhere.

Let me not beg for the still of my pain, but for the heart to conquer it

photo credit David Ragusa – Unsplash

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