writing prompts

My Chronic Illness Writing Prompts for January 2021

January 2, 2021 by Anne Sweet 4 Comments

Every month I try to join in with Sheryl from A Chronic Voice and her writing prompts. Using her prompts gives me the opportunity to write about how my chronic illness affects me and my hopes for going forward. These are the Chronic Illness Writing prompts for January 2021

Beginning

Yesterday, January 1st, marked the fifth anniversary of when I was first admitted to hospital. I’d had a previous indication that something was wrong and my GP was arranging a scan, but my condition escalated quickly and I ended up spending the first two weeks of 2016 in hospital. I was initially diagnosed with Transverse Myelitis and was told it would take about 8 weeks to recover. I was devastated. A year later I was re-diagnosed with a progressive condition, Stiff Person Syndrome plus PERM. I have been coming to term with this for the last five years.

Last year was a strange one. It felt like the rest of the country had a little taste of what it’s like to not go anywhere. I spend most of the year going nowhere but hospital. I have very rarely done ‘normal’ things for the last five years and it’s felt like my home is my prison. I think a lot of people have felt similar but for them there is hope, a light at the end of the tunnel. Freedom. Enjoy it. I know I will make the most of every moment I get to spend away from home from now on.

Symbolising.

I used to be quite spiritual, many years ago a lot of things held symbols for me. The last year I have revisited some of this with natural healing. I feel I have got lost somewhere along the way, life hasn’t been kind, not just with my illness, but in general and I’ve taken all the negative symbols and absorbed them as my fate. Maybe it’s time to reverse this.

We cannot control our fate but we can control how we react to it. If I chose a symbol to represent my life it would be an infinity symbol. Life revolves around and there are places revisited, some good, some bad. But it goes on and the best way to survive it is to accept it. Keep revolving, keep accepting, keep learning, there is no end.

Enduring

After such a difficult year like 2020 I think most of us need a big pat on the back for enduring it. I have found it quite peaceful and calming. But, I have accepted that there is danger out there and together as a family we have worked to stay safe.

I know others have not fared so well. It’s been tough and many lives have been lost. My heart goes out to anyone who has suffered at the hands of this virus. The biggest thing I’ve found hard to endure is the ones that ignore the warnings, believe the most ridiculous conspiracy theories and have acted with no concern for others. And yes, that includes our government!

speeches made by Jacinda Adern and Boris Johnson at the beginning of the pandemic.

Revealing

The past year has revealed a lot to me, in particular about humanity. I have been humbled by the acts of people who have come to the aid of others. The kindness and caring nature of people who have looked out for others less fortunate. Helping when people have been confined to their homes due to illness, raising money to help out the NHS, showing support and generally caring.

Then there have been the revelations of people who are quite the opposite. People that have really shown their true colours. Those that have broken every rule made to protect us. It’s been a tough time for small businesses, and even big businesses have suffered. It’s not been easy for anyone, but we’ve managed to keep the cogs turning as much as possible. Sadly, if we had acted sooner and people had followed rules, we may have been able to get through this a lot better and quicker.

I won’t even go into the revelations of the lies and conspiracies on both sides of the fence. I’ll be here all day!

The biggest thing that has been revealed is that even though a majority of people have been kind and helpful, there are still some, that profess to be caring, that would deny a child a meal. No matter what the circumstances, a child is not to blame.

Gracing

This prompt I am finding the most difficult. I’m not one for fanciful and graceful things.

I guess I can use it as gracing the future with respect and hope and take all that is thrown at me with strength. Where I will find that strength I’m not sure, but I will try my best. All we can ever do is hope for the best. Maybe this year will grace me with the tools I need to get my life in order.

Thank you Sheryl for writing these prompts each month and encouraging us to reflect on life.

Thank you for reading my chronic illness writing prompts for January and allowing me to indulge a little in my illness and how it affects my life.

Finally, a very Happy New Year to all my readers, I hope it will be graceful, peaceful and as pain free as possible.

Chronic illness writing prompts for January 2021, beginning, symobolising, enduring, revealing and gracing.

Previous Chronic Illness Writing Prompts, January to December 2020

December Chronic Illness Writing Prompts

December 14, 2020 by Anne Sweet 7 Comments

Each month I join in with Sheryl’s Chronic Illness writing prompts link up. I’m a little late for December, but it’s not been good so far so I’m catching up with everything. This is where I write about my illness and how it affects me, using prompts from Sheryl and the December Chronic Illness Writing Prompts are:

Exhausting
Exciting
Socialising
Indulging
Cutting

Exhausting

I have found it really difficult to accept this part of my chronic life but sometimes you have to give in. Everything I do is exhausting. I could spend the whole time in bed I’m so tired all the time, but I still try and get up and be normal. Saturday was spent in a vomiting induced coma which I couldn’t avoid. It’s times like this that I realise I have no choice but to rest.

I have days when I feel I’ve been productive though and I hold on to these. Yes, there was a time when I’d be rushing around here there and everywhere. I’ve been a single Mum with two kids rushing from work to childcare, cooking dinner, bathing the kids and putting them to bed each day without any help. It seems like a whole other life now when I can’t even fetch something from upstairs without exhausting myself. These days, I count making a sandwich and putting the washing in the washing machine a big achievement. If I feel good I may even run the broom across the kitchen floor or fold up the washing.

Exciting

The run up to Christmas has always been an exciting time for me. I love buying and wrapping gifts, shopping, seeing the lights and decorations. Baking and getting lists ready for Christmas day treats. This year has been very different. We have no school concerts or carol services, no Christmas markets or fetes. I’m so sad that I won’t get to see my youngest child’s last ever primary school Christmas play. The last two years have been really good. Last year it was ‘The Greatest Snowman,’ and the year before, ‘We Don’t Want to Do No Nativity’ which was absolutely hilarious. I could almost cry knowing that I won’t be crying at any more Christmas nativity/concerts.

It will still be exciting though. The kids are getting older but they are still looking forward to gifts beneath the tree and fun family games. I’m excited about being able to indulge in chocolate and maybe even a little tipple of my favourite drinks. I will pay for it health wise, but it won’t stop me.

Socialising

When we heard of the COVID rules for Christmas our first thoughts were about how we could still see family. Then we came back down to earth and thought sensibly. Graham’s Mum has been in his ‘bubble’ and he’s been able to visit her at times. But, we haven’t seen her, just Graham. We will invite her over for a while to see her grandchildren just before Christmas. Our house is bigger than hers so it makes sense she comes here. We’ll have sandwiches and cake and swap gifts. I think 90 minutes is the time limit. She’s not classed as vulnerable, but we are.

My brother will probably stop by for a short visit too, he might bring his wife. He’ll come on a different day and won’t stay as long. That’s as far as my socialising will go, there will be no parties or events this year. I’m not even going to my usual ballet which I love. (I can stream it live for a small fee but it won’t be the same. I might just pay to help them out as I know they are struggling.)

I am lucky though. I live with my five children and husband so we have a full house anyway. We don’t need others to socialise we have each other. (Sometimes, it is nice to imagine what it would be like to be alone!)

Indulging

Christmas is the season for indulging. I’m just hoping my body can hold up to the abuse it will endure…oh dear, even a bar of chocolate can make me feel ill. I’ve learnt how to cope though….treats earlier in the day mean that my sleep isn’t disturbed. I’m not supposed to drink, but a little glass is ok, I just have to miss off a couple of my drugs. So long as I’m not doing it all the time then I should be okay.

I have been indulging in Christmas movies. I get up early at the weekend and the younger ones always have other stuff to do on their tablets or laptops. So I sit her with my blanket and put on a Christmas movie. I don’t care how corny it is, or if I know exactly what is going to happen within the first ten minutes, I still enjoy just switching off and enjoying. I’ve not been able to read or listen to many books lately so its been my escapism.

Cutting

In a year where we have had to cut back on so much it seems hard to even think about cutting back on anything at the moment. I’ve nothing bad to cut out of my life, not even habits. But I will be cutting down on spending after Christmas. This year I’ve not really thought about it. I knew I’d have enough for Christmas because we’ve had no days out or holidays to pay for. But I have been a little frivolous particularly with take away food and giving the kids whatever they wanted. I really want a holiday next year if possible, even if it means a caravan in the middle of nowhere. I do have a holiday booked already so hopefully that will go ahead. I will want to cut back on spending before then so we can indulge ourselves while we are away.

Chronic illness writing prompts december.

Thank you for reading. I hope you all have a Merry Christmas and I will look forward to reading you all again next year.

If You liked my December Chronic Illness Writing Prompts post you may enjoy some of my previous posts.

My take on the November Chronic Illness writing Prompts

November 4, 2020 by Anne Sweet 3 Comments

Each month I take part in The Link up party from A Chronic Voice where Sheryl gives us writing prompts. Here is my take on the November chronic illness writing prompts which are:

Incorporating, Experimenting, Sanitizing, launching, writing.

Incorporating

Sometimes I sit here and think that things are not right, I shouldn’t be so responsible for so much when there is a chance I’m going to be around the shortest time. I’m a control freak, I really believe that no-one can do anything better than me.

I need to start incorporating some new habits, new ways of doing things. Letting go a little more and giving more to other family members. I think this is going to be one of the most difficult things for me. Once upon a time everything I did was controlled by someone else. I didn’t mind too much, because it’s strange how you accept things sometimes. But then I had to cope alone and I had to take control. The hardest thing now is letting some of that control go.

But, I don’t have to turn things back to how they were before, I just need to incorporate some new ways of doing things that release me from total control, but also allow me to be in control of my own life. Can I do this?

Experimenting

I experiment a lot, especially with my health. I’m always trying new ways of trying to improve things. Whether it’s a new drug, a new therapy or a new diet. I’ve tried so much over the years.

You have to keep experimenting, because you have to keep hoping that one day you will find something that makes things better. This year I became really bad when my infusions were paused. It was my idea to stop them because I didn’t think they were working and it seemed such a waste of time and money to continue. But after a break I realised that they were keeping me more stable. It might not have been the cure I’d hoped an wished for, but without the infusions I went downhill very quickly. I’m now back on them, experimenting, along with my consultant, the best dose and frequency. They might not be my miracle, but at least I’ve stopped feeling so surprised that I’ve actually woken up in the morning.

Sanitising

With Covid around I have been through all sorts of issues with sanitising. We are now careful but have settled into our new routines. I clean door handles in the home much more carefully, we remove our shoes on entry and the kids change their school clothes before they even come to say hello to me. Hand washing is happening much more frequently.

It doesn’t really matter though. You can be really careful but still get bugs in the home. We have had stomach bugs and colds in abundance this year, despite our extra efforts.

Launching

I would so like to be ready to start the launch of my Etsy shop this month. I’m not sure I will ever be ready though. They say it’s best to have at least ten products available before setting up shop. I have three, not very impressive is it. I am thinking of making some smaller items to get the number up. I really need to get a move on.

I’m also re-launching a blog of mine. Zebra Hooves. It’s been live since 2013 and I recorded a lot of my daughter’s journey there. But it has been neglected in the past couple of years. I was going to start a new blog, but there is a lot of background information on this blog so I though maybe a relaunch would be a better option.

I have Facebook pages where I update myself and my daughter’s medical issues but I have become very disillusioned with Facebook lately and I’ve decided that if people want to continue reading our stories then they can do on Zebra Hooves. It’s a place where I will be offloading and informing. I’m a big believer in blog therapy.

Writing

I love writing, here on my blog and in my journals. Last year I took part in NaNoWriMo which is a writing event for the November where you just write as much as you can each day. I’m not doing it this year but I did get really far last year so I may take some time to go over what I wrote and see if it’s worth writing more.

Or, I may start writing something else. There is a lot I want to say but I hold back so much. I truly believe that putting it all down really helps. It doesn’t matter if you intend it to be read by others or not. It just helps you get things off your chest. I find writing an amazing, wonderful therapy.

I will also be writing my Christmas cards. Last year I didn’t bother, but this year it’s been such an awful time for everyone. I really think that a nice card with a message is the only way to connect this year. There won’t be any big family get togethers, or parties. I won’t be seeing anyone but my direct family. But I do want to reach out to those who I have neglected in the last few years. I hope a little card through the door will make a difference.

And I’m also happy to be here writing my November chronic illness writing prompts, thanks Sheryl.

Lockdown 2

A little addition from me as we in England approach our second lock down. Nothing has really changed much for me or my family. We are still staying home as much as possible and not mixing with other people.

The Little Man is going to school which is going well at the moment although I am in the belief that if we are locking down then the schools should close too.

The girls are going to school on a reduced timetable in a special classroom where extra care is taken to keep them safe and isolated from the other students, but still giving them the option to stay on the school register and get some work done. I am supplementing this work at home with a program of educational lessons which compliment the school curriculum.

I don’t have to go back to hospital until January, so fingers crossed things will be a little better by then.

It seems like this has been the craziest year I’ve experienced and I’m so sad that my children have had to go through this. I just hope that we can come through the other side real soon.

Stay safe everyone x

This is my chronic illness writing prompts for November, if you wish to see more you can find them here.

August Chronic Illness Writing Prompts

August 1, 2020 by Anne Sweet 14 Comments

Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for August.

Unlocking
Limiting
Studying
Watching
Healing

These are my Chronic Illness Writing Prompts August

Unlocking

First we were in lock down because of the pandemic. Then slowly we have come out of lock down. Then suddenly, it was like lock down never existed for so many people. Back to work, back to life, back to friends and the pub. Things had changed with masks and social distancing, but basically life was back to normal. (And masks and social distancing was ignored a lot.)

When you have a chronic illness, the last thing you want is a virus that could cause so many more implications. I worry about the neurological symptoms that have been reported. I have enough of them already, thank you.

So for us we are very much staying in lock down. I had a letter from my consultant last week that states

“given the significant disability and chronic neurological illness, it is best that strict social distancing and if practically possible, shielding is followed as best as possible – to avoid any complications.”

Saying that, we did unlock the door for the first time and had a socially distanced day out.

Limiting

I guess this follows on from Unlocking. Even though we are being careful, by limiting our contact with others we are striving to keep safe. My eldest daughter returns to work next week but to limit her contact with others, my husband is taking her to work and picking her up. She normally takes the bus as she doesn’t drive herself. She really does need to learn to drive though. As soon as it’s safe to do so.

We are also limiting ourselves to some time away from home. We had two holidays planned this year, and in fact we should be away right now. But instead I’ve postponed them until next year. Instead we have some other things planned that are safer than crowded beaches and long travelling times.

My husband is the only person who leaves the house regularly. He’s the one who pops to the shops. He’s visited his Mum and his friend. Like a lot of others he hasn’t been careful and has stopped his limitations. When we were in lock down he would go out only once a day and then only if it was necessary. But now, he doesn’t seem to care anymore. He even forgot his mask yesterday and the woman in the shop still served him but asked him to remember it next time.

Studying

School is out for summer and the kids were so happy to drop their home education. I actually enjoyed spending an hour or so teaching my youngest. And although he was a pain to get started, I think he enjoyed a lot too. And we both learned so much.

All the kids struggled with learning out of school though, and they are really looking forward to going back in September. I am putting my faith in the school that they are doing all they can to ensure the virus does not end spreading around the schools.

My studies have not been going so well. I was trying to learn British Sign Language. But it’s hard to fit it in. Each day seems so busy and there is never enough time to fit everything in. I need my relaxation time in the afternoon when I read and crochet, or I can’t cope with making dinner in the evening. Then after dinner I am too tired to do anything.

Watching

I have been watching the James Bond movies again. Some I’ve not watched for years, I have been a little shocked at the cultural references from some of the earlier movies. They wouldn’t get away with a lot of that these days.

I also watched The Titanic with the Little Man. It’s really not one of my favourite films, the last hour is the most interesting. But The Little Man wasn’t feeling too good and we were flicking through the tv while he was next to me on the settee and the movie was on, it had already started so we missed an hour of it (yay) but watched the rest. He loved it.

Another day when the Little Man was bored I asked him if he wanted to watch a movie and he picked ‘Detective Pikachu.’ That’s the third time I’ve watched it now, but it still doesn’t beat the girls favourites when they were younger…I’ve seen High School Musical (1, 2 and 3), Frozen, and Monsters Inc. at least six times each.

Healing

Again, I’ve turned to healing from the inside. Everytime I try I get sidetracked with cake or chocolate. I tend to go by a little of what you fancy does you good. I have found some new ingredients I love, like baobab and moringa, which are so healthy for you and can be added to home made smoothies, treats and breakfasts. I’ve been drinking more water and herbal teas rather than regular tea and coffee.

I’ve been making meals from Mindful Chef, a food box delivery, every fortnight. They are healthier meals and have helped to introduce us to some ingredients and flavours. I love it when I can eat a meal that makes me feel full but not bloated. And especially when it doesn’t keep me awake all night with gastric problems. (Like the time I decided to make chocolate brownies at 10 pm and each one warm.)

I’ve also sought out my crystals again. I used to find them so healing many years ago. I remember going to an old warehouse which had been turned into a market and one stall was just full of crystals. I’d never seen so many beautiful stones, but what really got me was that I ‘felt’ them. They instantly had an effect on my emotions. So I bought some and started a collection. I learnt a lot about crystals and the powers of each of one. But then I put them away and forgot about them.

Recently I bought some crystal bracelets on Etsy. They are lovely and I instantly feel something when I wear them. One of them helps me to ward of negativity, the other helps with pain. So, then I found out some of my other crystals and bought a gorgeous flat bowl, also from Etsy, to display them in.

a white bowl with flowers and filled with crystals. August chronic illness writing prompts.

But, I’ve not talked much about my health. In my last post I talked about not tolerating my pain and that I had an upcoming telephone consultation.I talked to my neuro consultant and he has decided that my best option is to go back onto the IVIG. It was obviously helping to keep me stable, even though it wasn’t offering a cure (I remember when I first had it I was hoping it would be my miracle cure.) Sometimes you have to accept that management is the best you can expect. That will be arranged soon. Five days treatment every 3 months.

I am also going for another brain scan to check on Walter, my haemotoma. Fingers crossed he’s been behaving himself.

Thanks for reading, if you want to see what others make of these prompts please check out Sheryl’s link up.

These are my Chronic illness writing prompts August, to see other months you can click here.

Monthly Chronic Illness Writing Prompts. Why I stay!

March 3, 2020 by Anne Sweet 11 Comments

Each month I like to join in with Sheryl’s writing prompts. She gives the prompts and then I have to write about each of them and how they apply to my life. This month I’m really thinking about why I stay.

The prompts this month are

STAYING
DOING
BEING
TARGETING
WEIGHING

Staying – Why I Stay

So much of the time, especially in the recent months, I’m thinking why I stay. Yes, I mean why I stay alive, why I stay here on this planet, why I stay here in this house, this home. A lot of the time I don’t want to stay, I want to be anywhere but here.

My family drive me nuts, my illness drives me nuts, my daily routine drives me nuts. My work, my words, my life, waking up in the morning, going to bed at night, it all drives me insane. I so often don’t want to do it anymore.

But then I think again. We only have one shot at this life and so far I’ve been through a lot. But that’s my life and that’s the one I was given. Yes, I could have been given a life of luxury with a nice house, plenty of money and lots of holidays. I could have been given a life in war torn Syria. But I wasn’t, I was given this rather ordinary life in England. Which got messed up along the way, but it’s still my life.

And I still have things I can be proud of. Especially my children. And that’s why I stay.

Doing

What will I be doing this month? Well, we are currently in the process of having our family bathroom turned into a wet room. That means an accessible shower for me. So, although I won’t be doing the work myself, I’m coping with the workmen every day disrupting my daytime routine. (You know, the one I’m sick of!)

Then I’ll be helping my husband re-arrange our bedroom in preparation for my lift. He’ll be doing all the hard work, but I really need a huge purge, so I’ll be telling him what has to go. (including two bookshelves full of books.)

Being

I guess I’m being me. My usual moany but unable to ask for help self me. My hope is that I can be different. I feel as though I have learned so much recently. I have done a lot of studying and reading and learning, but the last couple of years I’ve become so much more aware of people. I’m not so sure I like people very much which is strange seeing as I have a degree in psychology. You would think I understood how people behaved, but trust me, it’s takes more than a psychology degree to understand people. So, I’ve decided that I have to start really being who I am and forgetting about what other people think of me. So watch out for me being different. Although, I may just appear to be the same. Some things I refuse to change.

Targeting

What am I targeting this month? Well, I guess it has to be my health. I’ve been reading through my consultant’s letters and something clicked in how my health has changed over the past few years.

There are two things I need to target. My mental health, which I’m already working on with a counsellor, but I also need to work on more pain management. I thought I was pretty good at mindfulness and mind over matter, but it turns out that, yet again, I have much to learn. I will be focusing on this a lot over the next month (And forever.)

The other thing is my weight, or more specifically, my diet. I have learnt that specific things trigger me, too much, or too little sugar can have an adverse affect on my health. Also, my stomach suffers after eating certain foods so I really need to avoid or find alternatives for bread, milk, some fruits and coffee. There are probably a few more things I need to add to list, but it’s not so simple as following a specific diet, this has to be ‘my’ diet. I do need to lose weight too. Before I got sick I used to fret about being 7 lb overweight, now I’m more like 28 lb overweight and it’s hard to shift being so immobile. I barely eat anything as it is so it’s going to be hard to shift, but I’m sure it will make me feel better.

Most of the weight I put on after having high doses of steroids. Not everyone is the same, but after the first dose of IV steroids I put on a few extra pounds. Then a year later I was given a second dose of IV steroids followed by six months worth of them titering them down each week so I didn’t stop suddenly. This dose caused me to put on most of my weight and also destroyed three of my teeth. (My dentist said that steroids do not affect teeth, but after talking to others I found out its quite common.)

Weighing

I’ve just confessed about my weight gain and how I need to change it, so now I’ll talk about something else.

I’ve been weighing up my life in general and working out the things that have the biggest effect on my health. As I’ve already stated I’ve identified these as mental, food and weight.

Overall, my current quality of life isn’t good but after weighing everything up I am coming up with plans for improvement. My home will be improved to help my ability to cope, my mental health is having a real good spring clean, and my physical health will hopefully improve too.

For four years I’ve been looking for a cure, and came to the conclusion that there wasn’t one. But after weighing it all up, maybe I was wrong. Maybe I can get better, or at least improve a little.

I started this post by talking about how I have been so close to ending it all, but as you can, my positivity has won over and I am already working on how to make life better. I lost faith in myself and in humanity, but my cup never fully emptied and I know I can fill it up again.

Thanks for reading and if you’d like to see how other’s have interpreted these writing prompts then please click the image below.

My Writing Prompts for February

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