Stiff Person Syndrome

Springing into April with My Chronic Illness Writing Prompts.

April 12, 2021 by Anne Sweet 13 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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My Chronic Illness Writing Prompts for January 2021

January 2, 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

December 14, 2020 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.

My take on the November Chronic Illness writing Prompts

November 4, 2020 by Anne Sweet 3 Comments

Each month I take part in The Link up party from A Chronic Voice where Sheryl gives us writing prompts. Here is my take on the November chronic illness writing prompts which are:

Incorporating, Experimenting, Sanitizing, launching, writing.

Incorporating

Sometimes I sit here and think that things are not right, I shouldn’t be so responsible for so much when there is a chance I’m going to be around the shortest time. I’m a control freak, I really believe that no-one can do anything better than me.

I need to start incorporating some new habits, new ways of doing things. Letting go a little more and giving more to other family members. I think this is going to be one of the most difficult things for me. Once upon a time everything I did was controlled by someone else. I didn’t mind too much, because it’s strange how you accept things sometimes. But then I had to cope alone and I had to take control. The hardest thing now is letting some of that control go.

But, I don’t have to turn things back to how they were before, I just need to incorporate some new ways of doing things that release me from total control, but also allow me to be in control of my own life. Can I do this?

Experimenting

I experiment a lot, especially with my health. I’m always trying new ways of trying to improve things. Whether it’s a new drug, a new therapy or a new diet. I’ve tried so much over the years.

You have to keep experimenting, because you have to keep hoping that one day you will find something that makes things better. This year I became really bad when my infusions were paused. It was my idea to stop them because I didn’t think they were working and it seemed such a waste of time and money to continue. But after a break I realised that they were keeping me more stable. It might not have been the cure I’d hoped an wished for, but without the infusions I went downhill very quickly. I’m now back on them, experimenting, along with my consultant, the best dose and frequency. They might not be my miracle, but at least I’ve stopped feeling so surprised that I’ve actually woken up in the morning.

Sanitising

With Covid around I have been through all sorts of issues with sanitising. We are now careful but have settled into our new routines. I clean door handles in the home much more carefully, we remove our shoes on entry and the kids change their school clothes before they even come to say hello to me. Hand washing is happening much more frequently.

It doesn’t really matter though. You can be really careful but still get bugs in the home. We have had stomach bugs and colds in abundance this year, despite our extra efforts.

Launching

I would so like to be ready to start the launch of my Etsy shop this month. I’m not sure I will ever be ready though. They say it’s best to have at least ten products available before setting up shop. I have three, not very impressive is it. I am thinking of making some smaller items to get the number up. I really need to get a move on.

I’m also re-launching a blog of mine. Zebra Hooves. It’s been live since 2013 and I recorded a lot of my daughter’s journey there. But it has been neglected in the past couple of years. I was going to start a new blog, but there is a lot of background information on this blog so I though maybe a relaunch would be a better option.

I have Facebook pages where I update myself and my daughter’s medical issues but I have become very disillusioned with Facebook lately and I’ve decided that if people want to continue reading our stories then they can do on Zebra Hooves. It’s a place where I will be offloading and informing. I’m a big believer in blog therapy.

Writing

I love writing, here on my blog and in my journals. Last year I took part in NaNoWriMo which is a writing event for the November where you just write as much as you can each day. I’m not doing it this year but I did get really far last year so I may take some time to go over what I wrote and see if it’s worth writing more.

Or, I may start writing something else. There is a lot I want to say but I hold back so much. I truly believe that putting it all down really helps. It doesn’t matter if you intend it to be read by others or not. It just helps you get things off your chest. I find writing an amazing, wonderful therapy.

I will also be writing my Christmas cards. Last year I didn’t bother, but this year it’s been such an awful time for everyone. I really think that a nice card with a message is the only way to connect this year. There won’t be any big family get togethers, or parties. I won’t be seeing anyone but my direct family. But I do want to reach out to those who I have neglected in the last few years. I hope a little card through the door will make a difference.

And I’m also happy to be here writing my November chronic illness writing prompts, thanks Sheryl.

Lockdown 2

A little addition from me as we in England approach our second lock down. Nothing has really changed much for me or my family. We are still staying home as much as possible and not mixing with other people.

The Little Man is going to school which is going well at the moment although I am in the belief that if we are locking down then the schools should close too.

The girls are going to school on a reduced timetable in a special classroom where extra care is taken to keep them safe and isolated from the other students, but still giving them the option to stay on the school register and get some work done. I am supplementing this work at home with a program of educational lessons which compliment the school curriculum.

I don’t have to go back to hospital until January, so fingers crossed things will be a little better by then.

It seems like this has been the craziest year I’ve experienced and I’m so sad that my children have had to go through this. I just hope that we can come through the other side real soon.

Stay safe everyone x

This is my chronic illness writing prompts for November, if you wish to see more you can find them here.

Chronic Illness Writing Prompts for September

September 3, 2020 by Anne Sweet 13 Comments

Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for September.

Writing Prompts for September

Feeling
Gruelling
Tempting
Running
Mending

Feeling

I think being at home so much means that you focus on your feelings a lot more. Sometimes it’s good, but sometimes it’s not. When we first went into lock down I felt scared but soon settled into a kind of peacefulness. We had passed the period where we knew we were safe and stayed home to keep it that way. Most people were doing the same so it didn’t feel like we were missing out. We were happy in our little bubble.

image shows a bubble to represent our happy, safe, family bubble

As time as gone on, my feelings have changed. I’ve found myself getting angry at people not taking the pandemic seriously. I’ve felt annoyed, sad, confused, misunderstood and practically any other feeling in between.

I missed my holiday this year, the change of scenery the peace of listening to the sea roll in, and the enjoyment of the children running around having fun. Instead we’ve been stuck at home, being entertained far too much by screens and totally missing any kind of pleasant scenery. I wish I had a nice garden but gardening is beyond my abilities and no-one else seems interested in helping out. Sometimes being at home has felt good, other times not so.

Gruelling

When you have a chronic illness sometimes getting out of bed is gruelling. Making your way through the day is gruelling, then trying to sleep at night is also practically impossible. I found some of the tropical nights we had this year particularly gruelling. I couldn’t sleep because I was way too hot, but the fan would give me a headache and having the window open just let in the noise of the neighbourhood. By the sound of it, I wasn’t the only person who couldn’t sleep but I don’t think I was quite so vocal about it. Probably because I wasn’t fuelled with alcohol.

Also, I have just had another MRI. I find these particularly gruelling, although I am getting used to them. The first one I ever had was abandoned when I had a panic attack. The second was so long it gave me nightmares. Since then I’ve learnt how to cope with them much better. This last one was not so bad at all. I had to be pinned down which I hate, but at least I didn’t have to wear a mask too. I was given ear plugs and head phones which I’ve not been offered before. It all helped to make it an easier experience. It’s just a shame that my body doesn’t like them either. When they pulled me out I’ve been lying still so long I couldn’t move. They had to wrench the panic button out of my hand and massage my limbs to get me feeling again. Then sitting up was incredibly painful. I was so disappointed because I’d managed so well while inside the machine.

Tempting

Quite the opposite, I think I’ve done really well in resisting tempation. I’ve cut down a lot on foods that are not good for me. I have made some big changes to my diet and it has definitely helped me health wise. I’ve had much less problems with bloating for one.

I’ve used Mindful Chef to help me improve my diet, it’s easy when you can get all you need given to you in one box to cook. But, I’m learning a lot and I hope that soon I will have a lot more on my menu that will help to make me feel better as well as full!

Running

I think, as someone who can’t use their legs, I’m going to use this prompt to write about the things running about in my head.

The COVID-19 virus is never far from my mind and it astonishes me that some people just don’t feel the same. People carry on as normal, adamant that the virus won’t affect their lives. And it’s true, for a lot of people it won’t, they could even catch it and recover in just a few weeks. They are the lucky ones. But would it hurt for them to think of others less fortunate?

I read something today that made me think again. More thoughts to add to the marathon in my mind. If someone has never experienced chronic illness then how can they understand how it affects a life. It’s not something that anyone can really understand, it’s hard enough to understand when you are living it day by day. I sometimes wonder how I’m going to carry on living when I know that each day will be filled with pain. Even to me it can be unthinkable.

If you have not experienced being sent to hospital in pain and then told, oh, we don’t know what to do, we can’t treat you, then there is no way that you would believe it to be true. But it is. If you are fit and healthy you instantly think that if you get sick then the doctors will fix you again. It’s not that simple, but it’s hard to think otherwise.

If you don’t have anyone in your life that you fear might die if they get the slightest illness, then how can you imagine what it would feel like having an invisible virus that’s ready to jump on them at any moment?

These thoughts have been running around my mind and I’ve been trying my best to understand. Had this virus been around 10 years ago, I would have reacted very differently too. People can’t comprehend that life can change in an instant. People protest about confinement, masks, social distancing, not being able to work or go to school. Apart from the masks, these are things that have already restricted my life for a long time. I have no choice and it’s doubtful it will ever be any different for me. For others, a normal life will resume, it’s tough, but it’s not forever.

I know there are others out there who understand only too fully. For everyone else, all we can ask is please be patient. Your life will resume, providing you don’t catch the virus too bad.

Mending

I’m always trying to mend, my health, my state of mind, my family disruptions the list could go on. Mending is just a way of life for me.

At the moment though we have our car in the garage because it needs mending. After just a year it broke down and couldn’t fixed by the RAC so it’s off to the garage. We have a courtesy car so we still have transport which is good because next week more mending will be going on.

Starting from Monday I will be on the day ward each day all week at the hospital receiving the infusion that mend my immune system. I’ve read that my treatment IVIG was given to patients with COVID in China which helped their recovery. I am hoping that by giving my immune system this boost it may make me less likely to be affected by COVID should it come into my life.

For those that don’t already know I have Stiff Person Syndrome plus progressive encephalomyelitis with rigidity and myoclonus (PERM)

Do check out Sheryl’s site for more chronic illness blogger’s takes on these writing prompts for September. Click pic below.

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