writing prompts

Chronic Illness Writing Prompts for September 2021

Regular readers will know that each month I join up with Sheryl at A Chronic Voice with her writing prompts to highlight what our lives are like living with a chronic illness. I have a very rare condition called Stiff Person Syndrome plus PERM, which has been with me for five years and nine months.

Sheryl’s prompts this month are Gazing, Shaming, Defeating, Concentrating and Empowering.

Gazing

I wasn’t sure where to go with this one. I guess it seems a strange word but I can put it into the context of my life in a few ways. I spend a lot of time gazing out of the window. I spend a lot of time in my living room and I don’t have the best of views. If I can get out into the garden I can gaze the other way at the trees. It would be nice to turn the room around and sit and gaze at the trees all the time. Better than looking at the shed anyway, which is mostly what I can see. I had this idea that we could paint the shed a nice colour ( I even bought the paint) and I crocheted a string of flowers to decorate it. I just wanted to make it prettier to look at seeing as it’s mostly all I see. Unfortunately, as usual, nothing has been done. I would have done it myself in a day had I been well. I even bought some lovely plants to put alongside it, but they’ve all died because of not being re-potted or looked after properly. I’d give anything to be able to look after my garden. It’s difficult because my condition means I can’t bend or stretch for more than a few seconds. and I can’t stand for more than a few minutes. And I have a lazy family who would rather spend the day in bed than help me.

Here’s my garland I made.

Shaming

I have experienced shaming, a close friend and family member called me out for attention seeking when I had my story published in an online magazine to raise awareness about my rare condition. My cousin said I had shamed the family and that she would never stoop so low. I’ve had little regard for anyone who feels the same way. Walk in my shoes for one day and then feel ashamed. I don’t care anymore. If I help raise awareness then I’m doing it for the good of people who suffer with this awful condition. Maybe one day doctors will take us seriously and treat us properly. I could write a lot on the abysmal treatment I’ve received in A&E. I was even refused a wheelchair once so I could get to the car, even though I can’t walk!

I have to admit though, the worst person that shames me is myself. I find it hard to admit I need help and will suffer instead. I walk around my home and look at my disability aids with disgust, even though I can’t live without them and they’ve been there for years. I hate my wheelchair even though it’s my only way of getting out and about. I get into a lot of arguments with my husband Graham because I won’t do things because I feel ashamed of myself and my disabilities. Yes, I’ve tried therapy but I couldn’t do ‘telephone therapy’ when Covid hit so now I get nothing. I really am my own worst enemy.

Defeating

Life is defeating me. Don’t get me wrong, I feel like we had a nice summer with some lovely activities. I love family days and spending time with my kids. I love having my kids around even if they ignore me most of the time. But, I’m sick of the pain, the constant, never ending pain which is defeating my body, my mind and my will to carry on.

I keep going because there is always something to keep me carrying on. For example, my kids birthdays, I have to be strong and happy for them. Our holiday, even though I was overcome with a feeling of dread and catastrophising the whole thing, I knew I’d put on a brave face and get through it. In the end, I didn’t have to, we had a lovely time. It wasn’t all completely smooth sailing but it was so nice to get away after so long. Then there was the back to school preparation, my children were so excited about their new beginnings. I couldn’t let my body or my insecurities defeat me. (Although it nearly did!)

There is always the next thing I have to stay here for, I just worry that one day there won’t be. Or maybe I don’t worry because then I feel I can go in peace.

On top of my illness I have other issues that try to defeat me every day, family battles, battles with getting help for my children, battles with my own doctors, even cooking the evening meal every day is defeating me. Please hire me a cook that will whip up whatever my fussy family wants at the time because I certainly can’t manage this impossible task.

Concentrating

I’ve found it difficult to find the time to concentrate on anything lately, but I do enjoy listening to my ebooks and doing my crochet. But if I’m honest, the less concentration the better, you’ll often find me slumped over my yarn with my earphones in, fast asleep.

I’ve been trying to concentrate on doing a course from The Centre of Excellence but I’ve not done much over the summer holiday. I will try and get back into it because it was helping me a little. I can’t stop until I get my certificate.

I’m also concentrating on writing a book. Something I’ve always wanted to do. Heck, I don’t know how people do it though, I have to keep reading and re-reading what I’ve written to the point where it bores me. And now I’m thinking that it would bore anyone else who read it, if it ever gets that far!

Concentrating is not easy for someone with a chronic illness but sometimes it’s a necessity, especially when you are trying to get help from your doctors, for you or your family members. If there was a super power going spare then I think I’d choose concentration. (Unless walking was on offer!)

Empowering

Whenever I try to say how I feel I get people trying to empower me with positive comments. It helps, but sometimes it triggers my shame too. I know I haven’t really accepted my illness and disabilities. I really wish I could, I really wish people could understand.

I think I need to be kinder to myself. I am always good at listening to others and trying to make them feel better, but I’m pretty rubbish at accepting the same for myself.

The struggle this week has been to empower my teen with the courage she needs to go to college. She’s finding the induction week very difficult but I’ve tried hard to give her coping techniques and I’m hoping beyond hope that today has gone better. If we can’t empower our own children what chance do with have.

That’s my writing prompts for this month. I think Sheryl has helped me to tune in to my negatives but it’s not always a bad thing, sometimes you have to accept that things are not right and life is a struggle. Then you build up the energy you need to just keep going.

Chronic illness writing prompts September 2021

My post for August

August Chronic Illness Writing Prompts – Catching Up

by Anne Sweet 6 Comments

Regular readers will know that I take some time out each month to join in with Sheryl’s Writing Prompts about Chronic Illness. I never intended this to be a chronic illness blog and I wasn’t even sick when I started it. Instead I choose to take this time each month to let my readers into a little of what my life is like now I do have a chronic illness. The writing prompts make me feel less like I’m writing a me, me, me post, and gives me food for thought while allowing me to express myself. I’m a bit late with this months prompts so I’m already playing at catching up.

This month the prompts are; Wandering, Catching, Compartmentalising, Regenerating and Visiting.

Wandering

We were away on holiday last week and I did a fair bit of wandering, probably a lot more than I’ve done in the last 17 months. The holiday camp site we stayed on was very wheelchair friendly and we were able to reach all the facilities without having to use the car. It was good to be able to wander around freely and even though there were will always be places inaccessible to me in my chair, I got around a lot more than usual. Unfortunately, I’ve managed to damage my wheelchair though. I’m going to see if I can get it repaired soon, but I’ll have to wait a week or so because the holiday has taken up all of my savings. My wanderings are over for now.

Here’s a little photo I took while having a wander one evening with my husband and youngest son.

wandering, a view from the holiday park showing a bench on the grass with a lake in the background.

Catching Up

Since we came back from our little holiday I have a lot of catching up to do. Before we went away the children had only just broken up from school, but I have plenty of experience of how quickly the summer passes by and there is so much to do. I’ll be catching up on paperwork for my daughter’s college, sorting out uniforms for the other two, while also catching up on my blog work and those posts that should have already been written.

And of course, when you get back off holiday it’s always a game of catch up with the washing, please let me have a few sunny days to dry outside.

I’m also trying to catch up on the birthdays, the Little Man had his just three days after getting home and then Star’s birthday is in a couple of weeks. Sometimes I don’t know if I’m coming or going.

Compartmentalising

I compartmentalize. I’m not sure if it is actually a good or a bad thing, I know psychologists tend to lean towards the latter. I don’t know how I’d get through life if I didn’t. Stress makes me ill, being ill makes me stressed. I have to do what I can to avoid stress and I do that by compartmentalising everything in life. Sometimes it makes me feel disconnected. But, other times it is a good coping mechanism.

I think of it like my bedside table of drawers. In the top drawer I have my family and daily life issues that I deal with all the time. Then the next draw holds all my worries about my family and the future. The third drawer holds my disability and illness, all the thoughts about how I’m going to cope, when my next appointments are, things I can do to try and improve my health. Finally at the bottom are my deepest darkest thoughts which have to be dealt with but not alongside everything else.

Just like in real life, sometimes things get put in the wrong drawers, and then things get messy. I prefer to keep it all in order as much as I can.

Regenerating

Having a short holiday, 7 nights away from home, has completely regenerated me. I really needed the break from routine and these four walls. I don’t think anyone else in my family understands how imprisoned I feel. I’m stressing now because my wheelchair is broken. I’m not planning on going anywhere soon…but even if I could I can’t. It’s hard for an able bodied person to understand. Of course I have my manual spare wheelchair, but that means having to rely on someone pushing me. I hate that.

While we were away I spent a lot more time outside and enjoyed being in a different environment. We stayed in a caravan which meant that I didn’t have far to walk inside at any time and even though I took my sticks I never used them once. I could walk around the caravan with ease (although the bathrooms were a little small and tricky.) The bed was comfy and I slept soundly. In fact I think I only woke up in pain once which was amazing.

I honestly believe that a smaller property in a seaside town would work brilliantly for my health. It wouldn’t work for the rest of my family though. I spent ten years hoping, dreaming and wishing for a bigger house and now I live in one I can’t cope with it.

It’s nice to feel regenerated though. Maybe I should plan a few more getaways in the future, I just need to win a lottery or something first. Eek, holidays are so expensive!!

Visiting

I guess I could harp on about my holiday because we visited the seaside. We were a little disappointed though because we went nearby to relatives and were hoping to catch up but they were self-isolating due to Covid. So we didn’t get to visit them.

We have some plans for the rest of the summer though. We are hoping to have some young visitors around this weekend to celebrate my Little Man’s birthday. We couldn’t invite them on his actual birthday because I am now self-isolating after getting pinged on the Covid app. I’m not sure how well I trust it though, I was never in contact with anyone but my family for any length of time inside or outside during our break. Inside we wore our masks and moved around a lot. We ate out a few times, mostly outside but when ate inside our table was well distanced from other diners. And my husband didn’t get pinged even though we were together all the time. I don’t think we are going to be visited by Covid but we’ve done the tests just to be sure.

Then later in the month we are hoping to visit a farm where the kids will be able to get hands on helping with the animals. It sounds really exciting and my children have something to look forward too. Fingers crossed I have my wheelchair fixed by then.

Chronic illness writing prompts August, catching up

My Last Chronic Illness Posts:

July

June

Being Thankful in May

by Anne Sweet 10 Comments

Every month I try to join in with Sheryl from A Chronic Voice and her writing prompts. This month her prompts are Pushing, Stretching, Disciplining, Preserving and Thanking. It almost sounds like a good physical, and mental workout and it’s been a while since I had one of them! However, I’m focusing on being thankful for the things I do have and here is my take on the prompts from a chronic illness point of view.

PUSHING

Have you ever felt close to the edge, like life keeps throwing all it’s stinky rubbish at you and you keep pushing it away, but it it pushes you further and further until there is nowhere to go but down? That’s a bit depressing isn’t it. I often feel this way, sometimes nothing goes right and no matter how hard I try I just can’t climb that pile of rubbish and escape.

I have a lot to deal with this year, with my teen finishing school and so many things to put in place. I have hospital appointments galore, for myself and my children. I have financial issues to sort out, my daughter switches from Disability Living Allowance to Personal Independence Payments this year and for anyone in the UK that has ever had to claim one of these benefits will know just how hard it all is, it’s physically and mentally draining.

Things at home have been stressful and I think we are all fed up of being around each other. Fingers crossed life will get back to normal soon…but that doesn’t make much difference to us, we never go anywhere or see anyone else anyway. My husband Graham will be happy to see his family again and maybe even have a night out with his friends, that will hopefully ease some pressure and reduce that rubbish pile.

STRETCHING

The pain has been awful lately. I just wish I could get comfortable anywhere for even a minute. Everything hurts and sometimes it’s just too much to even move, but if I don’t move it hurts even more, I have to stretch frequently, but carefully. There is nothing that makes me feel better apart from the pills that knock me out. I don’t want to be sleeping all the time, I want to do housework, cooking, gardening, even go for a walk. I miss going for a walk. I sit here sometimes and think how I would just pop over to the local shops to pick up a few things and talk to the shop owners. I knew them all, the ladies in the Post Office were particularly chatty. I don’t even know what the local shops look like anymore. I gave up when I found my wheelchair couldn’t get around most of the smaller shops without knocking over all the displays. And if there was a car parked across a drop kerb I’d end up having to go right up the road and cross over somewhere else to come all the way back down again. I never had the confidence to go alone, just in case I got stuck.

I’m stretching this out now, yes, I need to moan sometimes but don’t worry I’m not going to be all doom and gloom.

DISCIPLINING

I have three young children who are always in need of disciplining. They are by no means naughty children, but their grasp on doing what they are told, when they are told is not very good. If I tell them to do something, the reply is always the same ‘in a minute.’ But lately, the girls have been naughty by sneaking onto their tablets way after bedtime. This is causing them to be tired and moany the next day when they have school. I’ve had to take away their tablets from the bedroom now to stop them.

At the moment I’m trying to install some discipline in my teenager who is about to start her exams. She has no concept of revision and thinks five minutes browsing through a book is good enough. I find it so hard to understand as I’m a big believer in education and have always had loads of self discipline when it comes to learning new things.

PRESERVING

This is a harder one, sometimes it’s all I can do to preserve my sanity. I think Persevering would have been a better prompt.

I do preserve my energy to get through each day. I find that pacing myself helps a lot. I do something then sit down, then a little more and rest again. I’d love to get it all done in one but for me it’s the only way. If I do too much at once then I can pay for it for the rest of the day.

THANKING

Now to turn things around and add some positivity to this post.

Being thankful every day can lift you up so much. My lovely blogger friend Louise at Little Hearts Big Love finds something to be grateful for each day. I guess it’s similar to being thankful.

I’ve just discovered a Twitter hashtag #MyDailyThankYou started by @not_just_tired and it’s full of inspiration. I’m hoping to join in regularly.

I am thankful for our health system, the NHS. It’s by no means perfect but I have relied on them for treatment for five years now. I also need to thank them for saving my daughters life seven years ago, and for looking after the Little Man while his arm is broken.

I also thank my husband for sticking by me. He could have walked away many times with all the stuff we’ve been through but he stays and tries to do his best for us all. I really don’t know what I’d do without him.

I’m thankful to my children’s schools who have gone above and beyond to accommodate my children and their ‘differences’ and ‘difficulties.’ Star is getting amazing help with her GCSEs, Boo is getting real counselling for her issues and the Little Man is getting so much help while he is nursing his poorly arm. When I think of all the problems that some people have with school I feel really lucky.

Finally I would like to thank all of my readers of my blog, I truly appreciate every single visit, comment and share. If it wasn’t for you I wouldn’t be still blogging after all these years. You lot make me truly thankful.

Springing into April with My Chronic Illness Writing Prompts.

by Anne Sweet 15 Comments

Each month I enjoy joining in with Sheryl’s Chronic Illness Writing Prompts as it gives me a chance to give my readers more of an insight to my life. There are both good and bad things living with a chronic illness and the prompts give me lots of food for thought. This months Prompts are; Springing, Grounding, Luxuriating, Daunting and Sustaining. Here are my takes on these prompts.

Springing

I love the Seasons we get here in the UK and this week alone we have definitely been springing into April. Last week we had glorious sunshine and this week it’s been snow. It’s quite surreal but I’m honestly hoping that the cold weather will soon be springing away and we will get our sunshine back.

There is not much else springing up here. I don’t know what’s wrong with my garden but it really doesn’t like flowers or plants. Even if I keep them in pots they don’t seem to thrive. It must be the sun, it comes up at the front of the house and the back garden doesn’t get the sunshine until later. We are so enclosed that the sun only really shines on our back garden just before it sets. So, I literally have seen one flower so far, that was on my rose bush at the top of my garden, so maybe that’s were we get the most sun?

I most certainly haven’t had a spring in my step, I’ve been really ill and my Little Man has had an accident. I think we need winding up for some fun in the next few weeks.

Grounding

I can relate to this prompt. I have practiced grounding in the past but now I focus on reconnecting with the earth through Reiki and Crystals. I may write more about my experiences with these in the future, but as I am currently taking a course in Reiki healing with Crystals and I don’t want to share until I’m completely up to date.

I do remember many years ago doing a meditation exercise where I would imagine roots growing through my feet into the ground and connecting me to the earth. It used to make me feel connected to nature and the world around me. At the time I was fit and healthy body wise, but I used to suffer with my mental health and along with yoga it would help me feel much better.

I think grounding is a great way of keeping your mental health in check, it certainly helps with anxiety. It’s a simple holistic approach to make you feel better.

Luxuriating

I know a lovely lady who recently started a Body Shop business and she gave me a fantastic tip. By using their Body Butter and a razor it is possible to shave your legs without water. I haven’t shaved my legs in years. I did have a No No but it’s really old now and it’s one of those gadgets that you need to use regularly to work well. Being chronically ill means I don’t have the luxury of spending much time on myself, particularly if it takes some effort. Using the Body Butter method I was able to shave my legs while lying on a towel on my bed. It worked lovely and my legs were left nice and soft and hair free. Plus I smelt delicious too, there are lots of smells to choose from but I used the coconut body butter.

I don’t really have much time for indulging in luxuriating but I do like to take care of myself when I can. The occasional luxury product can make you feel so much better. I love my new crystal facial roller, it makes it easier for me to massage in my face cream and it feels so cool and massages lovely.

crystal facial roller — Crystal facial roller

Daunting

It has definitely been a daunting few weeks for me. Not only have I been ill, but I had a bad reaction to my treatment which lost me two days. It’s probably the illness I had before that caused the bad reaction to the treatment. Sadly, the illness has not cleared up and has actually got worse. I’m currently waiting for test results. Fingers crossed I can get whatever it is treated properly soon.

Having my son break his arm has been daunting too, he’s not coped with it very well. When I think back to all the health problems and operations that Star had I really believe that children cope better the younger they are. The Little Man is ten years old and he is more aware of what is happening to him than Star ever was at just seven years. As daunting as it all might be, it can surely only get better from now on.

Sustaining

Sheryl gave several different definitions for sustaining…

Sustaining an injury, tick (well, the Little Man is)

Sustaining every day life, tick. Boy have the last few weeks been difficult, we have tried to sustain normality.

Sustaining an interest in learning something new, tick. I’m always learning, taking new courses, finding new things out. As I mentioned earlier I’m currently doing a crystal reiki healing course, so hopefully I can improve things in the future.

We have also been sustaining a better diet for the whole family. I have family members with food issues and family members with gastric issues, so healthy eating is the basic key to improve.

Returning to Normal

This isn’t one of the writing prompts but something I wanted to add as I don’t talk so much about my chronic illness on my blog now.

In the UK the lockdown restrictions are easing, you can go shopping, go to the pub (outside.) have your hair and nails done, go to the gym and meet up with friends and family (outside.) My Social Media timelines are filled with people talking about what they are going to do and what they are looking forward too.

Me, I’m looking forward to my next issue of my crochet magazine.

For a lot of people with chronic illness, lockdown life is something we are used to. Spending weeks at home, not seeing anyone, not doing anything, is our normal. We don’t get visitors, we don’t really want to see anyone when we are going through a rough patch. We don’t get out, and if we do it takes a couple of days to recover. I honestly haven’t missed much at all.

Outing and holidays are restricted because of my condition and mobility. Even a trip to the hairdresser is a logistic nightmare.

The past year has been a strange one. To see people complain about not being able to go out when they wish, or go on holiday, or miss big family gatherings, makes you think even more about what you are missing out on. Usually I’m just seeing posts of gatherings that I’ve missed out on, but you kind of get used to that. When you hear about how much others are missing that it just brings it all home on just how much your life really sucks all the time.

I’m happy that everyone else is getting their lives back, no-one should have to carry on like this. I will never give up hope that there will be something that gives me my life back one day. I can’t wait to celebrate.

If you enjoyed this post you can read more of my monthly writing prompt posts here.

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Breathing My Way Through March

by Anne Sweet 9 Comments

Each month I take the writing prompts from Sheryl at a Chronic Voice to talk about my chronic illness and how it affects my life. Or I just ramble on about my life in general, I like to share. Here are Sheryl’s prompts for March, Incorporating, Breathing, Smiling, Stopping and Relishing.

Breathing

I want to start with Breathing because it’s very important to me. Well, okay, it’s very important to everyone, but I don’t think I’d be here today if I didn’t use my breathing techniques to keep me calm. I first learned about breathing techniques when I was pregnant with my first child some *cough* 33 years ago. I was quite into what was known as ‘New Age’ things which had become quite a thing in the 80s. I loved yoga, crystals, meditation and all of these focused a lot on breathing techniques.

I practiced some calming breathing techniques to help me through my labour and I’ve kept practicing them ever since (have you met my first born 🙂 )

Simple breathing techniques can be used to help keep you calm during times of stress and help you get through painful experiences. I now suffer from terrible spasms which affect my entire body and can cause my heart to race. My chest can feel tight and painful and I can be gasping for breath, it often feels like I’m having a heart attack. Thankfully, my experience has taught me that all I have to do is keep calm and breathe. (Sometimes I need a gentle reminder from my husband.)

The simplest techniques can often be the best, just counting as you breathe in and then again as you breathe out is such a easy way to calm yourself. I taught it to my kids from an early age, it’s so relaxing. I can’t have an MRI without using my breathing techniques because of my claustrophobia.

We take breathing for granted, I think everyone should take a moment every day and just focus on their breathing. You don’t even need to know any specific techniques, just think about your breathe going in and out, feel it, see how your body rises and falls. Keep breathing. Stay calm.

Incorporating

I feel like I’m going back in time as I am re-learning all about crystal healing but I’m incorporating it with something new and learning Reiki too. It’s not really all that new to me as I did something called ‘hands on’ healing back when I was younger. I also used my crystals to transmit healing. It might not be something that all people understand or believe in, but I do find a real connection when working on this kind of healing. I feel a kind of power whenever I walk into a shop that sells crystals, I really do think they resonate within me.

I’m learning a lot more now than before though. Back in the beginning I had books to learn from, and I would go and speak to people who were also learning the same things. Now there is a whole world of information at my fingertips thanks to the Internet. Incorporating the new found information along with the things I already remembered has been an amazing experience. I just want to keep learning more.

I started my course using The Centre of Excellence which offer so many different courses in many subjects but particularly mental health and healing. I am an affiliate so if you do click through and purchase a course I may earn a little money at no extra cost to you. Thank you for your support. If you are interested do take a look, the courses are really cheap at the moment.

sprouting seed in sunlight — Centre of Excellence All courses £29

Smiling

When you have a chronic illness it’s difficult to find things to smile about, but it’s true that smiling makes you feel better. There is even such a thing as laughing therapy. Sadly, laughing causes me pain. Seriously, if something makes me laugh out loud I get terrible painful spasms, its so not funny! I do love smiling and finding things to smile about.

It can be a happy story you have read, an action from one of your children, a kindness from a neighbour, a pretty flower, a cute animal, anything at all that can make you smile. Smile and the world smiles with you. It really is contagious.

If you want to learn more about the benefits of smiling then please take a look at this lovely post Smile Power! Emotion and Physical Healing from Katie at Pain fully living blog

Stopping

While I have been turning back the clock and re learning healing techniques, it has also encouraged me to stop a lot of things that cause me distress. I have found that I am spending less time watching the news and waiting for the latest Covid updates. I am slowly learning to stop fretting about things that I cannot control and focusing more on those that I can. I have already had my first vaccination and hopefully it’s the start of a better future. I don’t know how long it will take for things to get back to normal if they ever will, but I have decided that stopping fretting about it all is the best thing I can do.

Relishing

I guess the thing I am relishing the most is the ‘thought.’ It’s something my Mum always used to say, I relish the thought. She meant, if only! But, my Mum was never a really positive person, honestly, I think we were both opposites in personality, where she was always expecting the worst and only wishing for the best, I tend to accept the worst for what it is and relish the best things in life. Sometimes you have to look a bit harder for the best things but they are there.

I relish every cuddle from my children, I know that they are growing up but even the older ones are still up for a hug. I don’t remember getting many hugs from my Mum so I relish every one I can share now.

I relish every bit of weather. It can be snowing, it looks beautiful and if I’m cold I can snuggle under a blanket. I’m lucky I don’t have to go out. It can be raining and I’ll relish listening to the downpour, I love nothing more than falling asleep at night to the sound of pouring rain. I relish the sunshine and the warmth it brings and I know that warmer days are coming where we can spend more time outdoors. I think March in the UK can bring us different weather every day and I love it all.

There is not a lot to enjoy in these difficult times but we can relish every happy moment and hope that more freedom and enjoyment is to come. I relish the thought!

Thank you for joining me for this months indulgent post and thank you to Sheryl for making the link up party and giving us the prompts.

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