Stiff Person Syndrome

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.

September writing prompts, feeling, gruelling, tempting, running, mending.

July Chronic Illness Writing Prompts

July 2, 2020 by Anne Sweet 10 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 July.

Writing Prompts for July

BOTHERING
DEMANDING
NOURISHING
TELECOMMUNICATING
TOLERATING

Bothering

I was thinking about this only this morning. Since we have been stuck at home because of the Corona Virus I have been bothering less about the little things that used to drive me crazy before. Particularly with my husband not doing stuff. Before I’d be moaning about him not putting up a shelf or painting the bathroom, but now I really can’t be bothered. I can’t really explain it, I thought being at home all the time would be the perfect time to get things done.

But we have sort of developed a more relaxed type of life. I’m not busy getting the kids ready for school or appointments, and we don’t have to worry about visitors. Why not chill out and bother less? In a way, it’s been a lot less stressful for me, I would have done so much of this stuff myself before I became disabled. If I was healthy now, I doubt there would be anything left to do…but I just can’t motivate myself to bother my husband about it. And he certainly doesn’t seem bothered.

Demanding

I’ve found looking after the kids pretty easy, but the school is demanding they do more work. Honestly, I can get my Little Man to sit with me and go through his stuff, but the girls are older, they are responsible for doing their own work. But it seems the more I demand of them, the less they want to do. I’m pretty sure they’d jump up if one of their teachers asked them to work. But they just don’t listen to me. I had a fall out with Boo and demanded that she took her headphones out and listened to me. She wasn’t happy about it.

I try not to be too demanding. Yes, I believe their education is important and I really don’t want them to fall behind. But, on the other hand, I’m pretty sure that they will catch up again once given the chance.

Nourishing

Eldest son is a little overweight, as am I. We don’t get much exercise and since I got sick the weight has piled on through inactivity and medication. Some people say that steroids do not make you put on weight, but I guess that’s because in many circumstances, steroids give a person more energy to do stuff. I have had high doses of steroids on two occasions now, both for six months. Each time I’ve put on the pounds. Then I’ve found it hard to shift them again.

So, I sat down with eldest son and we worked out some healthy meals we’d like to try. If we can’t get out or exercise much (he has an exercise bike) then we can try and lose some weight by changing our diet. In my case it has to be a change because currently I don’t eat very much. It makes sense, if you don’t do much you don’t get so hungry. Not only that but I have some bad digestive issues. So, we are now nourishing ourselves with at least three healthy meals a week and eating a lot more fruit and vegetables.

Telecommuncating

I’m not a telephone person. I don’t like video calls either. I find sitting with the phone against my ear uncomfortable and concentrating on conversations over the phone difficult. I’ve never even tried zoom or face time. It’s just so alien to me. I used to talk to my Mum on the phone until my ears burned, but I really don’t talk to anyone much now.

I’ve found that trying to talk to anyone on the phone these days has become more difficult too. A call to the surgery, or the chemist, or basically anywhere at all for assistance has been a nightmare. I’ve lost track of the hours I’ve spent listening to ‘on hold’ music over the last few months. I’m beginning to hate the phone even more.

chronic illness writing prompts July, a mobile phone

I’ve had to give up counselling. I was half way through a six month session with a really good counsellor just before lock down. She wanted to keep in touch by phone, but it just didn’t work for me. I didn’t feel comfortable talking in my own home on the phone. So, I decided to stop and now I’ll have to wait for another chance to continue in the future.

I also have an appointment with my consultant next week on the telephone. It won’t be the first time, so I know what to expect. I will have my ‘script’ in front of me so I don’t forget anything I need to tell him. I’d rather see him in person, but I guess it’s best not to visit the hospital just yet.

Tolerating

I have been tolerating the weather better. Last year I found the hot weather really difficult, but I have managed to get through hot days okay, and slept through hot nights. Colder weather brings me more pain and it keeps changing from hot to cold. Over all, though, it has been fairly tolerable.

One thing I have not tolerated is my pain. Part of me wishes I’d never stopped my infusions. Not that I’d be able to have them right now anyway because of the virus. I always believed that they didn’t help much. But, there are so many differences I’ve noticed since I stopped. I have no chance of getting them back now, but maybe my consultant can help. I don’t know, he’s not really found anything so far that works.

The dystonia on my left side is a regular occurrence now, I get it at least once a day. I’m beginning to think that it’s so regular it’s going to become permanent. That scares me. Losing half of my body is something I would not be able to tolerate. I only manage to get through it now because I know it will pass. It’s scary when you lose control over your body, even temporarily.

I’m also having regular spasms that are becoming worse, they affect my throat, shoulder and chest. Sometimes I find it difficult to breathe and I need help to move me into a position to help me breathe better.

The headaches come and go but they are becoming more frequent. I wake up with a headache and it gets worse as the day goes on, to the point where I can’t wait to go to bed. Then I wake up in the night because the pain is still there. I wake up in the morning and it still hurts. It can go on for days. In the morning it’s tolerable and I can do things, but by evening I’m fit for nothing.

I don’t want to end on a bad note though. My health problems may be getting worse, but one thing I have noticed is that we are tolerating each other better as a family. We have spent more time together while being stuck at home all the time and I thought it would cause more arguments. However, apart from the occasional falling out, they have got on so well. We’ve had fun together as a whole family on a few occasions which is very rare, as usually everyone is off in their own space.

Last months chronic illness wriring prompts Link up post.

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