Disability

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.

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 14 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.

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.

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