Stiff Person Syndrome

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.

This post contains ads and affiliate links.

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.

Subscribe to blog via Email