hospital

Word of the Week 14- This Week is my Word is Hospital

Hello and welcome to the home of Word of the Week. A nice and simple weekly linky, with everyone welcome to pop by and share. The idea of the linky is to reflect back on your past week and share it with us. It’s great if you can sum it up in a word or phrase, hence giving us your Word of the Week. My word this week is ‘hospital’ and you can read more about that below.

I’m not totally strict on using just a word or phrase. But please try to stick to the theme of summing up your week. There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. I will read and comment on all posts and tweet them out for you. I also have a Pinterest board devoted to Word of the Week and I will add posts to Mix Please add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW

Word of the Week is open from 6am on Friday Morning to 12 noon on Monday. Plenty of time to join in!

If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.

MY WORD OF THE WEEK – Hospital

It’s treatment week for me. It’s kind of weird because I started last Friday and won’t be going in today because it’s Good Friday. But, I’ve been to the hospital every day for 4 hours of infusions of IVIG. I bought myself some new clothes because I would be leaving the house every day. Some people buy clothes for holidays or special occasions, I buy them so I’ve got something different to wear in hospital every day.

The treatment is going well, it makes me tired and gives me the most horrendous headaches, but lots of water and paracetamol as well a rest and I’m surviving. Give me a few days and I’ll be feeling a lot better. And hopefully it will last a few weeks. I’ve already made up my mind to pester my consultant for a different drug (Again.) He’s turned me down twice, but he’s not been honest with me so I have my argument ready. The only problem is, I don’t speak to him again until October. I might try and get an earlier appointment, but it’s doubtful.

Graham has had limited success with his busy routine of driving everyone to where they need to be. Sacrifices have been made. It’s annoying because even though it was a difficult plan, it was certainly doable, and roll back five years ago when I was fit and healthy (but still older than Graham is now) and I would have taken it all in my stride. In fact I had busy weeks like that most weeks. I don’t want to put Graham down, but sometimes I wish he’d get his act together, especially when we rely on him so much.

By the time you read this I’ll be chilling and recovering from my week in hospital and looking forward to a chocolately weekend.

Now it’s over to you, what word or phrase sums up your week this week?

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COVID Diaries Day 193 with some Good News

by Anne Sweet 7 Comments

It’s been a while since I wrote an update on our life since the outbreak of COVID so I thought I’d let you know how things are going right now, with a little good news too.

None of us have had COVID but I do know three people who have, one pretty badly. My eldest daughter is back working for the NHS in a local hospital. We are hoping it doesn’t get too bad again.

My Chronic Illness and some Good News

With the COVID pandemic my appointments with my consultant have been by telephone only. This has been fine and he even arranged my hospital treatment which went along well, although it was quite surreal being in a socially distanced and masked hospital.

Just before the lockdown in May I had an MRI which showed that my brain had been bleeding and I had a swollen part on my brain. I talked to my consultant and he said it was okay so long as it didn’t get any bigger. So he said I would need another MRI in 3 months to check there was no change. Because of the pandemic the MRI was actually nearly 7 months later and I did start to get rather anxious. Then I had the MRI and the results were really good. My brain is now behaving itself and there was nothing else to report. Phew!

It did make me think though. A lot of people have complained about appointments being delayed and people missing out on vital treatments and diagnosis, especially for cancer. (My anomaly was not cancerous.) I had to wait an extra 4 months for my scan and it was fine….but what if it wasn’t, what if it had grown and become dangerous, what if it had reached the point that treatment had become dangerous? It’s not good for me to think like that, but it does make me think of all the other people who have not had the good news I had.

The hospitals have had it difficult. People are constantly saying that there was never an issue, but I really don’t believe that they would deliberately delay treatments and appointments unless their hands were tied. It’s a really difficult situation and it’s not likely to get any better as we approach even more COVID hospital appointments. I just hope they have learnt a lot of lessons both in the hospitals and the government. Fingers crossed.

Back to School

The Little Man went back to school first but it was a hard decision. It didn’t help that on his first day back he ended up having a really nasty fall and spraining his wrist. He also caught a tummy bug which he kindly shared with us all just as the girls were going to go back! Then I had to spend a week in hospital for my treatment and the whole school situation became a nightmare. We decided to give up on the first week back and start again. The schools were understanding.

So, they all went back and afterwards the Little Man and Boo were happy but Star went to her bedroom and refused to talk to us. She then refused to go to school the next day. I chatted with the school and they said it was ok for her to do a gradual return of just a couple of hours a day to start with.

She went into school, spoke to a teacher and seemed okay. Then she got sick again. She’s still not been back. I’m not sure if her illness (Which I know is very real and physical) is down to anxiety. I am waiting for a call from our GP to try and get to the bottom of it (Bottom being the relative word here!)

The Future

For us, the future will be just taking precautions so that we don’t catch the virus. The Little Man is much happier being back at school, but I know that Boo is struggling (even though it’s hard to get her to open up about it.) And Star is struggling with her health and anxiety. I’m putting a lot of trust in the schools to keep them safe.

My daughter is back at work and Graham is the taxi driver of the house. She used to go to work on the bus but we don’t want to take that risk just yet. Especially as the numbers of COVID cases in our area are really growing at the moment.

My life hasn’t changed much. I don’t get out of the house very often anyway, usually it’s just hospital appointments. It feels kind of sad that summer is over without our summer holiday. We will make up for it next year I’m sure.

I’m still planning Christmas, it won’t be cancelled here. We generally only spend Christmas with our immediate family though. There are seven of us that live here so plenty of company. We do usually have a few relatives around to visit before Christmas but that will probably not happen this year.

So many months now we’ve had this virus hanging over us. We have to carry on with our lives, but we have to be careful too. We should take better care of our elderly population who have suffered so much. I can’t believe how much they have been let down. There is so much that could have been done better, but so much that needs to be done still to help us get back to normal. Some people refuse to accept a new normal, and many will reject a vaccination, but we all need to stand by our choices and make sure that whatever we choose we can always choose to be kind and think of others.

Or maybe I’m a dreamer?

(I’m not the only one!)

My Sunday Snapshot and Ordinary Moments, Calm

by Anne Sweet 6 Comments

image shows a red oil burner with a rose shaped wax melt.

I still have a some of my Etsy gift vouchers left so this week I treated myself to a new oil burner. It came with some lovely little rose shaped wax melts that smell of lavender. I always associate lavender with peace and calm and that’s just what I feel I need right now.

Ordinary Moments – Calm

The kids haven’t been to school. They have had tummy bugs which has been highly unpleasant. Luckily most of the adults didn’t get sick which was a relief.

So, the girls haven’t actually been back to school yet and the Little Man has lost three days this week.

I have been in hospital having my treatment, although I have come home each evening. No worries about spreading anything in the hospital with all the COVID precautions. No visitors allowed, and I had to have my temperature taken before entering the ward. Then I was at least 2 metres from anyone else apart from the staff, and we were all masked.

Overall though, it’s been a stressful week and I’ve had so much going on in my head. This morning I wrote a (very long) brain dump blog post which will probably stay in my drafts, but it was very cathartic and now I feel calm.

It’s all about taking deep breaths and dealing with things as they happen. The kids are going back to school tomorrow and I have everything ready. I’m not sure how it’s going to go, but we’ll try our best and I’m going to try not to stress about it.

Everything else is just a blip in life. There is just too much to deal with right now and I can’t bury my head in the sand but I can do everything possible to install a feeling of calm in my home. I’m going to do this by stepping away from Social Media and focusing on the things I need to get ready for tomorrow. We will have a lovely Sunday Dinner (we are having a roast today, but it will be a late one as no-one is ready to eat at lunch time.) We will all shower and get our clothes ready for tomorrow. We will spend the evening playing games or watching television. Calm and peaceful and organised. Away from the chaos in the world.

Today we are going to keep calm.

The rest of the week will happen no matter what.

Chronic Illness – What Am I Looking For?

by Anne Sweet 8 Comments

Each month I join in with Sheryl from A Chronic voice with her writing prompts. This months prompts are:

LOOKING
PLAYING
JOINING
INVIGORATING
DITCHING

Looking

In just a few days I’ll be having large Magnetic Resonance Imaging machinery taking a look inside my head and neck. Oh, I hate the MRI machines. The first one I had when I was admitted to hospital four years ago. They didn’t know why suddenly I could no longer walk or move my arms so they sent me down. I had no idea what to expect, I was already terrified as I didn’t know what was happening to me. One day I was fairly okay, the next I was paralyzed and I had no idea why. They took me down to the MRI and put me on the bed. They fastened my head down in a casing and put me in the machine. My nose was just inches from the top and I panicked. In fact I panicked so bad they had to take me out.

The next day I was given a sedative before they tried again. I got through it, but I was in there for an hour and fifty minutes. It was my worst nightmare and I hoped that I’d never have to go through that again. A wuss I know, but I am claustrophobic and I don’t even like small toilet cubicles. To me, It was on par with being buried alive.

I’m dreading Wednesday, but I’m more prepared now. I already have my sedatives to hand. I will take one in the morning and another as I arrive at the hospital. Thankfully, my MRI is real early so I don’t have to spend the whole day worrying about it. I’ve been practicing breathing and mindfulness techniques to get me through. I can do this, even though I’m not looking forward to it.

QE Hospital Birmingham Looking at the hospital from the front.

Playing

Playing is associated with fun stuff, but at the moment, I don’t feel like life is much fun. Everything is playing with my emotions to the extreme. I feel like I can’t cope with the pain, the struggle of day to day life and dealing with my body and what it keeps throwing at me.

But, I do have kids and sometimes the best times are playing games with them. I can’t do the things I used to, but we can still get out a board game or a card game to play. It does help to take my mind off things looking forward to playing games with my little ones.

Many years ago I had a pc game on a CD which I bought from the cheap basket at PC World. It was called Mahjong Four Winds. I have long lost the CD and despite searching I’ve never found anything that played like it. I loved that game so much but nothing compared. Then my eldest son came to me with a game called Mahjong Souls. It’s not identical, some of the rules are different and the cards are not quite the same. But the graphics are very similar and the game play the same. It has lots of extra features where you can play against other, real people, and win prizes. You can also choose who you play as. I love it, and it’s a great way of passing time.

Joining

I don’t know if you can call this joining but I couldn’t think of anything else to put in this prompt. This week I am joining a therapist to talk about my feeling about my illness and life in general. I’ve been waiting a long time to do this, I’ve spent so much time thinking I can do this alone. But I can’t, and I know that now. So, I’ll be joining up with someone else to help me with the mental issues involved in dealing with daily pain and disability. I’m looking forward to coping with life better in the future.

Invigorating

This is another area I am having difficulty with. I find it hard to find anything in life invigorating at the moment. I know, I’m all doom and gloom. It’s not good for me though. I know that the brain and body are connected, the sadder I feel the more pain I feel. It’s the same for everyone.

Maybe I could look for something more invigorating. I can’t do much physically so I could focus on something more stimulating for my brain. Each year I try to learn something new. Last year I did a poetry course, I’m still looking for something I can learn this year.

Ditching

I’m going to be ditching some bad habits. Something that is never easy to do. I remember when I gave up smoking, some fifteen years ago, and I thought that was really hard, but now I know it was one of the best things I could have done. So what else can I ditch?

Unhealthy food comes to mind. I find that when I cut out certain foods I feel better. I really need to get more of a grip on this. I’m overweight, but it’s hard to lose weight when you are immobile, and I barely eat a full meal. I’ve started having trouble swallowing a lot of food lately, another new symptom perhaps? Maybe something the MRI will shed a light on.

So, ditching crap food is a good start, and also the habit I have of procrastinating. Now, I can’t do much, but I can make others, or try to make others do things. I’ve been so rubbish at this. So, the bathroom needs painting, I can’t do it myself, but I don’t ask for help to do it, or I don’t insist that it should be done. I’m going to ditch procrastination, but not for me, for my whole family. Even the kids are no longer going to be sitting around doing nothing all day. It’s no good for anyone. They probably won’t like it, and I’m going to find it hard, but I think we will all benefit in the end.

Final Words

Physically, things are getting harder for me. I’m falling or stumbling more often. I’m having to use my wheelchair more inside the house. I’m not sleeping well at night, which means I tend to pass out a lot during the daytime. I’ve had trouble adjusting to my new medications but since I stopped the IVIG I am taking so much more. I’ve also noticed a lot more symptoms that have crept up on me. Life isn’t so good right now, but I will keep fighting and hopefully I can turn things around and make life better for everyone. This year I should be getting my lift and wet room fitted in my home. It will be so much help, so that’s something I’m looking forward to.

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Word of the Week 2 – Plans

by Anne Sweet 13 Comments

I’m not totally strict on using just a word or phrase. But please try to stick to the theme of summing up your week.

There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. I will read and comment on all posts and tweet them out for you. I also have a Pinterest board devoted to Word of the Week and I will add posts to Mix Please add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW

Word of the Week is open from 6am on Friday Morning to 12 noon on Monday. Plenty of time to join in!

If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.

My Word of the Week

Plans

This week we had many plans. Some good, some not so, and some changed.

The kids didn’t go back to school until Tuesday but we had plans for Monday. First it was a hospital cardiology appointment for Star. Then we planned to have lunch in town and a little walk around the shops. We did have lunch but the walking around was abandoned as we all just wanted to go home.

Tuesday the plan was back to school. I think it’s going back after Christmas that I dislike the most. The kid’s have so much fun with all their new stuff and games and it just seems a shame that it all has to end and everything cleaned up. It’s truly the end of Christmas. The girl’s had a good day, the Little Man not so.

Wednesday, no plans, which was good because I was really not well all day!

Thursday it was time for another hospital appointment for Star. This time to see her neurologist. We’d made lots of plans on how we were going to pick her up from school just after lunch, then Graham was going to leave us at the hospital while coming home to pick up the other two from school. Then he was dropping them at my sister-in-law’s before coming back to town to pick me and Star up. It was a plan, but it was also stressful. Star was stressed about leaving school at the right time. I was stressed at being left alone with Star in town for nearly 3 hours, and Graham was stressed about driving in and out of town and dropping the kids off and getting back to us in time.

But, on Wednesday afternoon we had a call from the hospital to say that the appointment had to be re-arranged. After all that planning!

The change of plan had a big effect on Star and the stress ended with her not going into school on Thursday.

Future Plans

I’ve also been thinking of some future plans this week. I’ve booked tickets to another ballet in February, I’m taking my friend to see Matthew Bourne’s ‘The Red Shoes’ and I really can’t wait. I love Matthew Bourne’s take on the classics.

Then towards the end of the month it’s my eldest’s birthday. He want’s to go out for a meal as usual but we are having trouble figuring out plans. He wants to go out lunch time with the kids and in the evening with the adults!! I’ve asked him maybe to split it over two days as I don’t think my stomach could take that much food.

Now it’s over to you, what have you been up to this week?

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