chronic illness

August Chronic Illness Writing Prompts – Catching Up

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

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.

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.

Educating, A Theme For My February Writing Prompts

by Anne Sweet 6 Comments

Each month I join up with Sheryl from a Chronic Voice to use her writing prompts to talk about my Chronic Illness and how it is affecting my life. This months the prompts are; Defining, Allocating, Uniting, Saving and Educating. Quite Timely for me, particularly as I have my children at home doing their education. There is a lot of defining, allocating and Educating going on this February. Let me see how I can link these up.

Educating

I won’t deny it. It’s tough having three school age children stuck at home because of the pandemic. Don’t get me wrong, I don’t want them to go back to school, it feels much safer having them home. Also, my youngest was the only one able to attend school full time, the older two were part time and not learning much at all.

This time around, though, I’m not expected to teach them. Which is good because I don’t have to organise their work and make them do it. Now it’s just making sure they know what they are doing and that they actually complete the work. It sounds easy, but it’s honestly a right royal pain in the butt!

I’m tired. It wasn’t easy getting them up and ready for school each day, making sure their uniforms were ready and they had all they needed for their day ahead. But, at least once they were gone I would get some peace and quiet. That is not happening any more. I feel like I am on high alert all day.

I do think it is having an effect on my health. I’m not feeling so good having to cope with it all. I’m not sleeping so well and my pain levels are high.

Allocating

I guess that brings me onto the next prompt, allocating. As well as all the home education going on, I have to carry on with my normal life. This means having to allocate things more carefully. It’s so easy to burn out. I know that I’m leaving a lot more cooking to Graham, but by dinner time I’m already worn out, if not physically, then definitely mentally.

I am also having to allocate time to do my work. I’m doing a lot of writing but also a lot of crochet as I aim to fill up my new Esty shop. I have enough to do without putting this extra pressure on myself, but by allocating my time carefully, I should be able to manage it.

I have a lot to deal with, both physically and mentally and it can all be very draining, but I can do it.

Uniting

Uniting my family is like a pipe dream. Sometimes I think I am the only link between them. Sometimes, it’s not so bad though and we have times when we get on better. Yesterday afternoon it felt quite nice watching a movie along with my son and my husband. Even when it comes to television we are all divided in what we like to watch so moments like this are like little precious pearls.

They pull together when I get sick though. If I am out of action then I can see there is more understanding and co-operation between them. It seems strange that it is my illness that unites them, but it also gives me hope that they will be there for each other if I’m not around for any reason.

Saving

I’m saving as much as I can at the moment. We are definitely going on holiday this year, that is paid for and if for any reason we can’t go in August as planned, we will go another time. I need to save for spending money. We probably won’t be able to do much when we go away, but we will be staying somewhere different (in a caravan) and will have a sea view. It won’t matter, it will still be a holiday and we need it. We won’t be leaving the country and will not be visiting any busy beaches.

I’m also saving money to do up my garden. I’d love a conservatory but I’m not sure if that will be possible this year. I definitely want to do all the things I planned but didn’t do last year though. I’m determined to have a garden to love.

This is all relevant to my health. The holiday is much needed, even if it’s only to see the sea and listen to it lapping against the shore. I need a break, some time away from home. I also believe that having the garden I want will improve my health too. I want to be able to spend more time outside, but I also want to be able to look outside my patio doors and see something that pleases me. Particularly as I spend most of my day with this view. I can’t do the work myself, but if I get the raised beds I want and a path put down, I can visit my garden easier and do some planting and tending. I would like a greenhouse too, but I may have to make some sacrifices if I do get a conservatory.

Defining and Educating

Defining brings everything together. We need to define what work the kids are going to do each day and make sure they stick to a regular time table to ease stress. It looks like we will be home educating all February at least. I also need to define my plans for our holiday and the garden.

Defining boundaries is important. I think with the pandemic and our household being in almost permanent lockdown we have let our boundaries go a lot and that means that chaos is seeping in.

Contentment is something we could all be needing more of and I have been educating myself with these great tips from the lovely Becky over on A Beautiful Space.

Thank you for joining me again for my chronic illness writing prompts. You can read other months here.

My Chronic Illness Writing Prompts for January 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.