chronic illness

Harmony is my theme for this Months writing prompts.

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.

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

Previous Chronic Illness Writing Prompts, January to December 2020

December Chronic Illness Writing Prompts

by Anne Sweet 7 Comments

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

Exhausting
Exciting
Socialising
Indulging
Cutting

Exhausting

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

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

Exciting

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

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

Socialising

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

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

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

Indulging

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

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

Cutting

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

Chronic illness writing prompts december.

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

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

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