chronic illness

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.

Why choose Thrive CBD Oil?

November 17, 2020 by Anne Sweet 1 Comment

I’ve written about CBD oil before and I’ve used it myself for quite a while. I’ve tried so many different types, it can be difficult to choose one that really suits your needs. I was really happy to try Thrive CBD Oil, and I think it’s my favourite.

Why Choose Thrive?

When I was asked to try Thrive CBD oil I was given the choice of peppermint or blood orange flavour. I was a bit stunned, a CBD oil with a nice flavour, was that even possible? I chose blood orange and was excited to try it. I was sent a bottle for free in return for my honest opinion.

Thrive CBD oil collage, one pick of the box and the other a light purple bottle of Thrive CBD oil

The CBD oil arrived in a lovely box and on opening I found a lovely lilac coloured bottle. It actually felt like a treat to open rather than something medicinal.

I followed the instructions and used the pipette to administer the oil under my tongue. Now, being a CBD oil user I was prepared for the awful taste, but Thrive was truly tasty, it was like biting into a chocolate orange. Yes, the oil residue was left behind, but it still wasn’t as unpleasant as most oils I’ve tried. Trust me, this is a huge bonus.

The taste isn’t everything though. Thrive is a transparent company that lays down everything about their products so you can make the best choice. It’s lab tested twice, internally and by a third party. Thrive use the best hemp from organic farms, it’s gluten free, vegan and GMO-free. It’s produced naturally and there is no THC or toxins in the product. They also use recyclable packaging to post the oil out in.

Why Use CBD Oil?

CBD oil has many benefits for chronic pain sufferers and those with anxiety problems. Every person has an endocannabinoid system in their body (even if you’ve never used cannibis.) This system affects a lot of your daily life including your sleep pattern and pain levels.

Using CBD oil causes an interaction with this system and can help the receptors respond properly. This is still being researched, but the amount of people using CBD oil has increased and the results are looking good.

CBD oil can be useful for pain and stress relief, but mainly it helps to maintain your entire wellbeing by creating a balance within your body.

My Thoughts and Results

I loved the packaging of the CBD oil, it’s so much prettier than the usual brown bottle, but the content has to be just as good.

I loved the taste, I can honestly say it’s the best tasting CBD oil I have ever tried and I’m now keen to try the peppermint too. CBD oil can be a big put off because of taste, so I think this is important. It doesn’t take away the residue oil, and you can still taste the CBD a little but it’s so much nicer to take.

Does it work? Well, I’m a chronic illness sufferer. My pain is constant and I’ve yet to find anything that will take it away completely. But, keeping myself as healthy as possible and using things that help me do that can stop me from getting worse, or having ‘flare ups’ where I can feel ten times worse. CBD oil does help with that It also helps with keeping calm when I feel like I’m losing control.

I’ve been taking Thrive CBD oil three times a day for just over a week now. I’ve been sleeping better and shortly after a dose I tend to feel a lot more relaxed and able to cope with my pain better.

If you were thinking of trying CBD oil then I’d recommend Thrive.

Here is a little photo of the things that make me feel better, CBD oil, crystals, plants, candles and oil burners. Taking a little time for self care and relaxation can make big improvements to your health.

Photo showing a candle and oil burner in the background, a bowl full of crystals, two little plant pots with cacti and in front a bottle of Thrive CBD oil

Disclosure: I was sent a bottle of Thrive oil in Blood Orange flavour to try out. I have given my honest opinion of the product.

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.

Chronic Illness Writing Prompts for October.

October 1, 2020 by Anne Sweet 8 Comments

Each month I write about my Chronic Illness following the writing prompts from Sheryl at A Chronic Voice. I appreciate the chance to talk about my chronic illness as it part of who I am. This October the writing prompts are:

Producing
Acquiring
Switching
Dissapointing
Forming

October Writing Prompts

Producing

I’ll be producing a lot this month. For starters, I’m taking part in Blogtober which means I’ll be producing, or attempting to produce, a blog post for every day of the month. I have taken part before and it’s such a lovely way to meet new bloggers and spend a lot more time writing.

I’m also producing a lot more with my crochet. I have three works in progress on the go and I have plans to start making Christmas gifts and decorations. I really wanted to make some pumpkin beanie hats which are so cute, but I don’t think I’ll have them ready in time for Halloween, so I’ll focus on Christmas instead.

I feel pretty confident I can do this, despite being back in hospital next week. My treatment seems to be working and I am feeling better than I have done in ages.

Acquiring

In Sheryl’s October writing prompt she talks about maybe acquiring new symptoms, but I feel the opposite. My last MRI came back clear so now I have less worry about what is going on in my brain. (Not my mind, that’s another matter!)

With my IVIG going ahead I feel that I am acquiring more strength and health. When I first went for IVIG treatment I thought it was going to be my miracle cure, and I was pretty devastated that it wasn’t. After about 18 months I decided to stop the treatment as I felt it wasn’t working. I went downhill pretty quickly, acquiring dozens of new symptoms and so much more pain. After talking with my consultant we agreed that the IVIG may not have been a cure but it was keeping me stable. I have a progressive condition so it’s bound to get worse, but the IVIG was delaying the progress. So now I’m back on it and already feeling better.

Switching

I find it hard to switch off. I don’t just mean digital devices, they are just a part of life. But, I find it hard to switch off from all the things going on in the world and in my home.

I watch the news and follow social media, I do research, I never take things at face value. I have to know everything, both sides of the story. But there is so much going on in the world it’s driving me crazy.

Then I have my family issues with two of my three youngsters refusing to go to school. I’m constantly talking to the school and working on ways of helping them. I feel like I never get the chance to switch off.

When I think of all the things I fit in to my day I wonder if I have any space at all to even breathe.

This is when switching off becomes vital. An early night, a movie, a good book, a moments meditation, peace and quiet. There are many ways to switch off and I try to practice them often. Otherwise I risk my brain exploding again!

When you have a chronic illness you feel like you don’t do much. Housework is practically impossible for me (apart from folding washing which takes up a lot of my time) as is shopping, the school run, cooking dinner all the usual things that a busy mum has to do. But, sometimes there are just not enough hours in the day to do the things I do. Plus I have to think about making money too, that means working from home. Physical work is not possible, but that doesn’t mean that I don’t do anything!

Disappointing

Well, if I wrote a list of all the things I’m currently disappointed with I’d be here all day.

I find the human race disappointing at the moment. We are in the middle of a pandemic and all we can do is argue about what is right and what is wrong. Why can’t we all just work together and beat this damn virus down.

The girl’s school has been both disappointing and helpful. Star has failed to attend, but they do keep trying new stuff and tomorrow she is going to try school again, in a classroom with one other child, both socially distanced and with masks, with a teacher with a shield. They will be there for two hours catch up lessons and not have to mix with any other children. It sounds extreme, but it’s what she needs. Her anxiety is through the roof.

Boo, is now having issues which are different to Stars but I am disappointed that they have not managed to keep their original promises and things have gone haywire. It all adds to my stress and causes conflict within the family too.

I will not disappoint my family and I’ll do my best to make everyone happier.

On a brighter note, The Little Man is doing brilliantly, he loves his school and his new teacher and is so much happier since he went back.

Forming

October is definitely the time of year when I form new groups and friendships, especially through Blogtober and This year I’m also joining in with 20 books for Christmas over on my other blog At Home A Lot.

I am also hoping to form new routines and habits. The world is changing and we need to change too. I have to try and get two of my family members to understand this and form new ways of getting them to survive these changes.

I’m also forming so many new ideas, for my personal life, my blog and my crafts and I’ll be excited to share a lot with my readers. Last week I created my very first crochet pattern which was really exciting, so I’ll be forming many more I’m sure (if life gives me the time.)

As Autumn is upon on and changes are happening everywhere, my objective in life is to form a new path, a new direction, a new outlook on life.

Thank you for reading, and thanks to Sheryl for writing these October writing prompts and creating the link up each month.

Subscribe to blog via Email