Disability

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

July Chronic Illness Writing Prompts, the Ageing Process.

by Anne Sweet 11 Comments

Welcome to my monthly post where I talk about my chronic illness through writing prompts from Sheryl at A Chronic Voice. This month I’m looking at Ageing, Suffering, Transforming, Navigating and Visualising.

Ageing

I remember feeling that I was getting so old when my 50th birthday approached. It just seemed like a major milestone and I wasn’t mentally ready for it. I wasn’t ready for ageing! But, then it happened and I had a wonderful day, I was thoroughly spoiled and at the end of it all, it was just another year older. I was fit and healthy and running around after my family, sometimes a bit too much.

Shortly after my 50th birthday is when I got sick and had my first stay in hospital. I didn’t realise at the time that it was going to be permanent and I strived to get well again. When I realised that I was going to spend the rest of my life sick I suddenly related it with age. For one month I relished in the feeling that 50 wasn’t old after all, then I was left feeling like a 70 year old.

I read about other’s in the chronic illness society who have suffered and are so much younger than me. I feel lucky that my illness didn’t strike until I was much older, but it still depressed me that I will spend the rest of my life like this.

My teenage daughter is also chronically ill but seems to be coping quite well at the moment. She is enjoying her teenage years and hasn’t been an in patient in hospital for six years. She still has hospital check ups, but apart from her stomach issues you wouldn’t know she was sick. She just gets on with it and feels she has so much to look forward to. I hope this continues for much longer.

I have an older brother, he just celebrated his 70th birthday. He has relatively good health and does a lot more than I can even with the age difference.

Suffering

I’ve just spent a week having my IVIG treatment in hospital. The side effects were not so bad this time. I drink plenty of water and take pain relief, this means I generally just suffer with headaches and tiredness. I did have a couple of days feeling nauseous, but it wasn’t too much. Sometimes you have to suffer a little for your treatment that ultimately makes you feel better.

I have been suffering on and off lately. I have days when the pain is unbearable, and other days when I just want to do stuff and keep on going. Then there are the days were I want to do stuff and end up suffering because of it. I think suffering is just something a person with a chronic illness has to put up with.

There is no end to my suffering, no cure, no treatments that work. I can only hope to keep on going and ageing enough to see my children grow up.

Transforming

I think I have always been transforming, I’ve had so many different stages in my life; a difficult childhood, an early marriage and motherhood, being a single parent for years, continuing my education at a later age, meeting a new partner, having children at a later age, then becoming disabled. I’ve had loads of different jobs, at one point I was working three jobs at the same time just to keep afloat while being a single parent (yes, I don’t know how I did it either, but I guess I was young and determined.) I have watched myself transform a lot.

The last six years have seen even more transformation, this time much more physical. I went from being an active and healthy person who one year was running for charity and the next confined to a wheelchair. I still can’t walk more than a couple of metres. Imagine walking on a really hot shingle beach where every step is painful. How far do you think you could go before giving up. Sometimes I push myself further but end up paying for it afterwards by not being able to move at all.

I have transformed into a much slower person, and forever ageing, but my brain is still as active as ever (Even it refuses to connect to my body sometimes!)

Navigating

Navigating is a good one for me. As a child learn to walk and navigate around, I have found myself learning again. I often use furniture or objects to help me move from one place to another. Like a toddler will cruise around the furniture when learning to walk, I cruise around the kitchen cupboards so I can prepare a meal.

I have also had to learn to navigate in a wheelchair. I tried a self propelled chair but I honestly don’t know how people actually get anywhere like this. Maybe I am weak or too heavy, but I was so very slow. Not only that, my arms and hands just don’t work properly sometimes, so self propelling was not for me. I couldn’t get used to being pushed around so I invested in a power wheelchair. Now I can move along just using my one hand. It still requires some learning, especially navigating a crowd of people. Thankfully, this is something I’ve not had to endure since this pandemic began, but it’s also something I’m not looking forward too. A lot of people think you can swerve out of the way or stop instantly when you are in a wheelchair, but that’s not always the way. If you get in my way you could get hurt.

Visualising

I love this prompt because visualising is what keeps me going. When I’m really sick, perhaps in a really painful spasm and I can’t move, then use breathing and visualisation to calm my mind and re-connect my body to make it calm down again.

I use visualisation techniques to help me sleep at night, especially when I am in pain. I practice self reiki, visualisation and meditation on a regular basis. I know it’s not for everyone but it’s something I’ve done for many years, even before I got sick. I used these techniques as pain relief while labouring my babies. I’ve also used them to help my mental health and to assist me in my life goals.

Visualisation is an extremely powerful tool, you only have to believe in it. I’d recommend anyone to give it a go, even if you are healthy.

I try to visualise my future as one where I am well again to continue my life normally. In reality, I have a progressive illness, but if I can stop the progression, maybe there is a way to reverse it too? I’ll never give up hoping just like I can’t stop ageing.

I often wonder what it would be like to consult a psychic about my future and have my fortune told. My sister-in-law was a great fan of fortune tellers and would visit regularly. These days you can call them from places like CARTOMANZIA.VIP and have your fortune told over the phone. I had a lovely friend who actually worked for a service like this and she took her job very seriously.

Last months Writing Prompts can be found here.

Harmony is my theme for this Months writing prompts.

by Anne Sweet 5 Comments

Each month I like to join in with Sheryl’s Chronic Illness Writing prompts over on A Chronic Voice. It helps to think of my life through the prompts that she provides and gives me the opportunity to read and connect with other bloggers with chronic illnesses. Sometimes it’s nice to feel less alone, even if it is pain that connects you. This month I’ve picked out the prompt harmonising from the list as harmony is something I need so badly in my life.

So here are the prompts for this month and my interpretations: Accumulating, Harmonising, Prioritising, Carving and Training. Remember, this is a chronic illness link up so it’s the time I generally focus on how my illness and disabilities are affecting me. I have a rare disorder called Stiff Person Syndrome with PERM. You can find the official website for the UK here.

Accumulating

As someone who spends a lot of time at home, I do tend to accumulate a lot of things. One of them being wool. I love to crochet when my hands are behaving and I have huge stash of wool. I had a big sort out the other day and I am now working on a lot of projects that use up your stash. I tend to write more about my crochet over on my other blog At Home A Lot and I have a few things for sale in my Etsy shop. I’m hoping to get some sales once people need scarves and gloves again 🙂 I am also planning on adding some baby items as I guess they will always be needed.

I also accumulate new symptoms on a regular basis. I write these down in preparation for when I see my consultant which is generally twice a year. I often forget everyone once I’m in the office, or on the phone.

By connecting with other people with Stiff Person Syndrome on places like Facebook, I can also accumulate more information on how this condition affects people. It seems that we have as many differences as we have similarities. One similarity I have discovered lately, though, is that a lot of sufferers seemed to have symptoms start after a traumatic experience, some physical, some mental. I’m thinking there is a lot more in this. I had both physical (falling down the stairs) and mental (bereavement) just before my symptoms became unbearable.

Harmonising

Following on from the information I have accumulated I have realised that I need much more harmony in my life.

Sometimes it’s very difficult living with so many people under one roof. In my home there are four adults, two teenagers and a child. It can be stressful and finding harmony is difficult. I am working on it though, I feel like I am the key, I’m the one that everyone offloads onto, the one that gets the blame for everything. I am central to the family and it’s hard for me sometimes. Tackling an argument between teenagers is a walk in the park in comparison to a disagreement between adults.

Last week my attempts at harmony failed miserably and we ended up with a family member leaving. They just couldn’t take any more, packed some bags and left. It was a bit of a shock as I thought we could get through anything together, especially after all we have been through already. I guess the Virus and it’s restrictions has had a bigger affect on this family member as they are the most sociable and often spent a lot of time with friends before Covid hit our shores.

It seems that the break worked for the time being and it’s made us all make a better attempt at keeping the peace and harmony within our home. That person is now back home and we are trying to improve things little by little

Harmony is vital for me as the more stress I am under the worse my condition becomes. I can understand my family members finding this all so difficult though, it’s not just my health that suffers when we don’t stay harmonised.

Prioritising.

I think the events of last week have made us think more about our priorities and what is most important. Of course, harmony is one, but we also need to think about respect and the needs of all our family. From young to old we are all so very different and have differing needs. Having four special needs family members also creates friction. We need to prioritise what works and stick with it.

When you think about prioritising needs you generally work from the one who needs the most down to the one that seems to have it easy. But the truth is, we all need some TLC sometimes and we definitely need some space and self care. So, a healthy person can feel that everything is too much to cope with, while the ones needing help tend to rely on the the healthy person for everything. There has to be some priority to the needs of those that are healthy, putting too much stress on them can be even worse that any of our disabilities or illnesses.

To create the sort of harmony in our home that I long for we have to shift our priorities to include everyone, even those that are fit and healthy.

Carving

This seems like a strange one in the mix but I thing that we have to start carving out a better and more harmonious future for us all. I am, of course, using the word figuratively here, but apart from carving the Sunday roast (which is generally my job) I don’t know how much carving we do.

I suppose I could say that I’m carving out a new career for myself, but that wouldn’t be entirely true. I have actually started writing a book, but this is something I’ve thought about for many years but never really got around too. I doubt very much it would lead to a new career, but it’s something that I am really enjoying.

Training

I have already talked about my training to be a crystal reiki healer, I’m not sure where I will go with this. I’m hoping that maybe I can do something remotely to help others. That’s still ongoing though. I’m also doing some Positive Mind Training which I’ve found really helpful. Learning to positively accept things has been an eye opener. I have always been a relatively positive person, but just a few little points have made me see things even more positively. It was honestly a brilliant, short training course that I have taken so much away from.

Final Words

After a couple of really difficult weeks I think we have found some kind of harmony for now. I just hope it lasts. As for my chronic condition I have found that the warmer weather has been making me feel better. I’ve never been a sun worshipper but feeling warm seems to have lessened some of my worse symptoms. I can’t cope with high humidity or strong heat, but the lovely weather we have had lately has been just perfect. If only it could stay like this all the time.

I have had less spasms and fewer headaches. I still can’t stand for long but my legs are not hurting so much for the short periods I use them. If only this was a sign that I was recovering, what a lovely dream that would be. I’m back in hospital for treatment on June 21st, fingers crossed for fewer side effects and better results.

Harmony, my chronic writing prompts for june banner.

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.

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