writing prompts

December – Life with a Chronic Illness

December 2, 2019 by Anne Sweet 6 Comments

Each month I join up with Sheryl from A Chronic Voice for some writing prompts aimed at living life with a chronic illness. This months writing prompts are Travelling, Bonding, Warming, Coping, Ending.

Travelling

I don’t do much travelling around this time of year. My family are all close by, and the only ones who are not come to visit us. This will be on December 14th.

In November, I only left the house three times, and one of those outings was an hospital appointment! The other I was only out for an hour, and the final outing was on the very last day when we went to the local Christmas Tree lights festival. (Anyone who follows me on Social Media will have seen me saying that I’ve only been out twice in November, but that’s brain fog for you, I completely forgot about the other time.)

I will be going out more this month (Fingers crossed) but not really travelling much. I have booked our holiday for next year though. It’s still in the UK but I love a seaside holiday. I have also realised that as my kids get older these families will become a thing of the past. I still remember when my eldest kids became to old to come on holiday with us. I even remember when I got too old to go on holiday with my Mum. I feel sad, but maybe it will give me an opportunity for more travel seeing as it will cost less paying for so many children. Let’s just hope I stay healthy enough.

Bonding

We have had a week of a sickness bug running it’s way through the family and suddenly I have had children again and plenty of bonding. In particular, my Little Man. Instead of wanting to be glued to a laptop or phone or other device, with his headphones on and seemingly in another world, he has spent time talking to me and we even cuddled up together on the settee one day and watched a movie together. I think we all need this special time, either as a family or just two of us. I also got to watch a movie with my husband which rarely happens. He’s generally more interested in watching the sports channel upstairs, sometimes life is too hectic for this kind of bonding.

In past years Christmas was always a time of bonding as my Nan, who was the glue of our family, would bring us all together for the holiday. She left us many years ago now and the family drifted further and further apart. In fact I barely see any of my cousins, aunts, uncles, nieces, nephews and so on. I don’t even see one of my brother’s. So it’s just Graham’s Mum and brothers and my eldest brother and his wife. It seems so distant, those days of a house full of relatives, when the furniture would be moved around to fit them in and the chairs from the kitchen dotted around the living room.

These days the only bonding I get with my extended family is through sending Christmas cards. And sometimes I don’t even manage this.

Warming

I suffer so much from cold weather, even at home I find myself covered in blankets and layers of clothes just trying to keep warm and the pain at bay. Sometimes, you just have venture out though and that’s when the warmer clothes come in handy.

In no particular order, the things that make me feel warm in December are;

Hot chocolate with cream and marshmallows (And maybe a tot of Baileys)
Christmas Carols, I love them and know all the words
Believing in Father Christmas, the kids might be getting older but I will always believe in him as it gives me a warm fuzzy feeling.
Christmas bells, we are lucky to live near a carrillion which plays the most wonderful Christmas music on a Saturday afternoon.
Christmas feel good movies. I can watch them all, no matter how corny.
Christmas decorations, trees and lights. I get a warm fuzzy feeling just looking at them.
A lovely real fire. We don’t have one, we don’t even have a chimney (But it’s okay, Father Christmas has a magic key) but I can put the You Tube video of a real fire on my TV and put my feet up in front of it. There is no heat but it still makes me feel warm.
Christmas food..yummy, everything from chocolate to brussell sprouts. I love Christmas dinner with all the trimmings, and all the treats and deserts that are okay to indulge in over Christmas.

And there is nothing nicer than coming home after a cold outing to a lovely warm house, or cuddling up on the sofa with a blanket, or getting into a lovely warm bed. There are so many ways to feel warm.

Coping

This is a big one for me this month. I stopped my treatment, on advice from my consultant, nearly three months ago. So it’s probably completely out of my system now. It’s been hard and I’ve almost phoned the hospital on many occasions to ask them to give me my treatment (my consultant said I could do this any time.) But, on the other hand, I’ve coped better than I thought I would, and although I’ve gone backwards on many things, I’ve also noticed that some of the side effects are starting to disappear.

That’s one of the problems with a rare chronic illness like Stiff Person Syndrome, no-one really knows what will make it better, and everyone who has it reacts differently to treatments. So coping is the best I can do.

As for the season’s festivities, I cope with them by taking everything slowly. There was a time where I’d be in a tiz if my decorations were not put up on December 1st, but we have a lot on in the following week so I doubt my husband will be able to get the decorations out for me any time soon. We will also have to move furniture, something I can’t do. The Christmas shopping is mostly done online, so that’s how I cope with that. Along with very careful planning.

Ending

The end of the year, such a bittersweet time, especially as you get older. I often wonder if this will be my last year on this earth, will I even make it through another year. I often wonder how I will make through a night so this is not an isolated feeling. Some people say they are glad to see the back of the year, especially when things have not been so good. But I always look back and think of all the positive acheivements I’ve made. The bad times don’t just disappear, but it’s much nicer thinking about the good times, and there is always more than you think.

In past times the period between Christmas Day and the New Year has brought much sadness, grief and pain. It’s a difficult time for us as a family and we realise that all we have is each other, so we try to spend the time quietly, bonding with each other and coping in our own way.

I was admitted to hospital on New Years Day 2016 which is when my chronic illness journey began. So this year it will be four years sick.

Thanks for reading. I’m linking up with Sheryl here and you can click through to see other bloggers interperete the same prompts.

The Meaning of Life, the Universe and Chronic Illness

September 2, 2019 by Anne Sweet 16 Comments

It’s time for my monthly writing prompts from the lovely Sheryl at A Chronic Voice. This week I’m looking at the meaning of life.

Finding

I laughed when reading this prompt. It seems like I’m forever searching for stuff lately. I can’t remember where I’ve put anything and it drives me and my family nuts. I’m not the only one though, the rest of my family are just as useless at finding things so I don’t think this is down to my illness but probably an inherited trait.

But on a deeper level I’ve been looking for the meaning of life and wondering why some people have it so much more difficult than others. Is it true that there is a form of re-incarnation, where karma plays a part? If that’s the case then I must have been something real evil in a previous life and now I have to pay for it. The more I look into my life as a whole the more I find that things have been pretty crap since I was a very young child. Not just health wise.

However, I do appreciate every day the good things that have happened in my life, even if they went from good to bad, at least they were good for a while and that’s what I have to focus on.

It’s not Just Me!

Then I hear of other’s stories and realise that so many people have such crap lives and it is actually a very few that have blessed time while here on earth. (And even those I know who outwardly seem to have blessed lives are still hiding some dark times.)

So in conclusion, I’ve found that life is pretty crap!
But, we are only here for a short time, and for some, it’s far too short. So, as a positive minded person, I have to make the most of the time that I’m here and try and make it better for those around me too. At least then I will feel that life really does have some meaning.

Life has no meaning. Each of us has meaning and we bring it to life. It is a waste to be asking the question when you are the answer.

Researching

I’m constantly researching the effects of my illness, I think it’s one of the natural things you do when you have a chronic condition. I am keeping a log of things and have some ideas for my consultant next time we meet. I don’t think my current treatment is working so well, and I’ve always asked for more. Well, this month I went to my GP and asked for less! Yes, I requested a reduction in my medication. Sometimes the side effects are worse than the benefits and it’s so difficult to work out.

Earlier this year I was having heart problems, I had severe palpitations which at times made me think like I was dying. But it turns out that a change in my medication was all that it took to lessen them. I’m not completely cured but it’s gone from happening almost every day to once or twice a month. It was only through researching my medication that I worked this out. The Doctors were too busy looking for reasons within my body for these symptoms, attaching me to machines and recording my heart patterns. I researched the reactions of my medication and which worked best for me.

We humans are amazing creatures, every one of us is so different in body and mind. Sometimes Doctors, even though they are brilliant, work too methodically to realise this and often miss the real meaning behind what’s happening

Dating

I wasn’t going to answer this as I’m a married women. Dating is not something I do. I don’t even have ‘date nights’ with my husband. But, if I’m honest, dating is not something I’ve done much of all my life.
I met my previous husband at the age of 16 and he was my first serious boyfriend. When we split up, I dated a total of two guys before meeting my current husband. I’m no expert on dating.

But, when I did meet my current husband I decided that I was never going to get married again. He was never happy about that but we spent many years together. Then when I got sick (my illness happened quite suddenly) he stuck by me and wanted to do all he could to help me. I hear so often in the chronic illness society about relationships just not lasting because the partner couldn’t manage with their loved one’s illnesses. But Graham was prepared to stick around no matter what. So I married him and we are just coming up to our third anniversary, despite being together for eighteen years.

If he did leave me, then I don’t think I’d even bother trying to date again. I know it’s never the end of the line and that there are plenty of older guys out there that would probably make suitable partners. But honestly, sometimes looking after yourself makes it way too difficult to factor someone else in, so I’d probably just stay alone.

Reusing

I’m taking this as a prompt to write about recycling or changing from throw away products to protect our earth. I hate it when people who are trying to be more ‘green’ get labelled as ‘snowflakes.’ Our planet is our most precious resource, of course we need to protect it.

Sidenote: I hate the term ‘snowflake’ as being used as a derogatory word anyway. One of the most beautiful things in life are snowflakes and each one is individual, just like us humans. So, in fact, every one of us is a snowflake anyway. And trust me, any one of us can melt away in an instant too.

I have recycled for many years but I’ve stepped up the mark lately by cutting down hugely on resuable plastics. We’ve gone back to using bars of soap instead of plastic bottles and flannels and cloths rather than throw away wipes. I went one step further this week when my son complained that his duvet was not keeping him warm. Instead of throwing it out and buying another. I found an older duvet and put both inside his cover, all it needed was a quick wash and freshen up and now he has a big thick duvet ready for the colder months.

I could go on and on about reusing and saving our planet. But that would be a whole blog post on it’s own.

Recounting

I’ve already touched on recounting the good memories and weighing them up. I may have had a lot of bad things in my life, but there have been good times to remember. I had a lot of memories come up recently while clearing out my old wardrobe and going through old photographs and memory boxes I’d created.

One thing I was thinking about recently was how quickly things change. I remembered all the times when we were going through difficult times and now they are just distant memories. Recounting past experiences can be therapeutic.

I remember when my daughter was young and I knew I had diary that I’d written while my eldest daughter was the same age. I decided to read through it and suddenly realised that it had been one of the worst years that I’d ever experienced (up until that point anyway!) But, I’d gone there because I’d wanted to recount the good things about my baby girl and it saddened me that these good times had been overshadowed by the bad…but only in my writing..in my head it was still good. The brain is an amazing tool.

Finding Meaning.

So, in life, no matter how awful, we have to focus on the good. One good day a month maybe the only thing I can acheive these days, but it doesn’t matter. Even on the worst days I can do something worthwhile. I love creating things and I’ve found crochet extremely therapeutic. I love reading and absorbing stories, I get excited and engrossed, and even though it’s not my life, it’s something I can ‘live’ even for a little while.

I’ve also discovered the power of Netflix. I haven’t been such a television addict for many years. But now there is nothing I like more than waiting for the kids to go to sleep and then switching on a program or series that I can truly lose myself in. It’s not wasting your life, it’s enhancing it. Giving you those little thrills, whether it’s enjoying something else’s romantic encounters, being on the edge of your seat with the thrills, or even feeling scared. When you can’t get out there yourself and experience these emotions it’s good to find them in other ways.

Writing Prompts for August

August 5, 2019 by Anne Sweet 6 Comments

Prompts for the Month – Capturing, Financing, Controlling, Exchanges, Motivating

Capturing

Ever since I can remember I have been capturing memories. I have boxes and boxes of photos and photo albums from the days before digital photos were a thing. My many digital photos I wouldn’t dare to count, it would take me forever.

I have also been capturing memories with diaries. Hidden in my wardrobe I have a selection of handwritten diaries starting from around 1982! The most regular years are from when my older children were little, 1988 to about 2000. I stopped writing things down then because life got too tough and the memories from the next couple of years are imprinted on my brain and I don’t need reminding of them.

By the the time my younger children were born then online journalling was a thing. I started my first blog in 2003. In more recent years I’ve been capturing so much of our life right here on Raisie Bay. It’s full of all our lovely memories, and some of the not so lovely ones.

This post about Stars 7th Birthday Party has been one of my popular posts of all time.

And here’s a captured memory of my Little Man in a Fire Engine in 2014

A little blonde haired boy looking out of the window of a fire engine

Financing

Being in the UK, I am lucky to have the help of the wonderful NHS. However, it’s sad to see that it’s struggling so much. If I decided to go private then the cost would be well beyond my means, and my lovely NHS consultant could refuse to treat me once my money ran out.

Why would I want to go private? Well, I don’t complain about the NHS because I know I owe them so much, but my treatment has not always been good. I’ve even had to go to the complaints department because of the way my daughter has been treated. But my treatments cost a lot and the NHS funds them.

There are other treatments I could have that would cost a lot more. There have been mixed results from these treatments, but I guess I’ll never find out if they would work for me. My consultant is trying to get funding for one of them, but he is very doubtful it will be approved.

Another treatment is HSTC a form of stem cell treatment. I could fight for the treatment on the NHS but so far I only know of two people with my condition in the whole of the UK who have had it on the NHS. One worked, the other didn’t. I could go private, there are groups which encourage you to fundraise and got to Russia or Mexico for treatment. I really can’t see myself doing that. I’d never be able to raise the money needed, I’d not want to leave my family for the months it takes, and I wouldn’t be entitled to help from the NHS if it all went horribly wrong.

So, although unlike many other’s with my condition in other contries. I’m lucky that I get treatment for free. But Finances also play a big part in my treatment.

Controlling

When it comes to my illness I like to think that I’m controlling it rather than it’s controlling me. It’s the cup half full approach and you have to have the right mindset. It doesn’t always work and I have my dark moments. But I have to have faith in myself that I can do this.

I have three young children and there is no way I’m not going to be the mother they deserve. They know I’m sick, it’s a little too obvious, but they have dealt with it well so far, because I don’t let it control our lives.

On bad days I could very easily lose control and let the pain take over. I have done and it’s awful for everyone, not just me. But mostly, I have learned that I need to take care of myself and hopefully take control of what I can and can’t do.

Exchanging

The only thing I can think of for this prompt is that next week I’m exchanging my view of my back garden for one of the beach! I’m so looking forward to getting away and enjoying a different view and more relaxed life for a few days.

Motivating

After last months dip into self pity and despair, I feel the sunshine on my face and the fact that I have a holiday due very motivating. I have my children at home on their school holiday and they help keep me motivated too. It’s so much easier not to be self absorbed when you have little ones around to keep you on your toes.

Of course, life can be more difficult too. The pain doesn’t subside just because you have more to do. And some days have been very difficult. But I keep going so I guess my children are my motivation for getting through each day, and indeed for getting through life.

Linking up with the lovely Sheryl from A Chronic Voice who gives us these prompts each month. Together we have built up a lovely community, together we are able to express our voices about our illnesses.

Writing Prompts for April

April 6, 2019 by Anne Sweet 9 Comments

Each month Cheryl from A Chronic Voice sets out a list of writing prompts for those that suffer with a chronic illness. The prompts this month are;

Tiring
Educating
Receiving
Giving
Quieting

Tiring

I made a vow that I needed to get out of the house more, at least once a week. I made this vow after spending 14 days without leaving the house at all. However, I think I may have overdone things by going out several times a week and tiring myself out.

When you live with a chronic illness it’s hard to strike a balance. If I stay home all the time then I just feel tired constantly. If I go out I feel tired, but in a different way. I do get so sick and tired of looking at these four walls though. Maybe I can get a balance when it’s warm enough to sit in the garden, that’s going out without going out!

Educating

This is quite a relevant prompt for me this week, there has been a lot of educating going on.

I did a course in poetry, it’s something I’ve always loved writing but I’ve never really spent time learning the basics. I enjoyed the course, which was online, but in a group of people so it was good to get and give feedback.

I’ve also been educating myself about the drug Rituximab. I’m going to see my consultant next week and I’ve wondering whether to ask about it. So I did some research first. I’m still not sure it would help but a few others with my condition have had good results so I’ll see what my consultant says.

Another thing I’ve been learning about is Bi-lateral Alternating Stimulation Tactile (BLAST.) I won a pair of Touchpoints from a competition I entered at Naidex and was keen to find out how they work. I’ll definitely be writing more about them as they do have an affect on calming stress amongst other things.

Receiving

There has been much receiving going on too. As I’ve already said, I won some Touchpoints from Naidex. It’s the first time I’ve won a competition from an exhibition, despite entering them all the time.

I’ve also received a new cooker as my old one kept cutting out. My eldest son paid for it but I’ll be giving him some money back towards the cost. I haven’t really felt inspired to cook more though.

I also received some news this week. My youngest son is believed to be on the Autistic Spectrum. It wasn’t really a surprise, but it’s always like taking a huge leap from thinking it to knowing it. He’s still my gorgeous Little Man though.

Giving

I’ve been busy with my crochet and I gifted my Nephew’s daughter a baby blanket for her new baby due in a few weeks. I also sent along a rabbit that I’d made for her other daughter.

a soft toy bunny in grey with a purple scarf and pink nose — Hop the bunny

I’m also in the process of making a baby blanket for my other Nephew’s daughter, she is due in June and is having a little boy.

I can’t believe that both my brother’s are great grandparents already. I know they are older than me, but I’m not even a grandparent yet, never mind a great grandparent!

Quieting

I’ve been so busy it’s taking it’s toll as even though I’m just a week after my IVIG treatment, I’m feeling totally worn out. I need to take some time out and rest.

My favourite ways of spending quiet time is by crocheting and listening to an audio book. I also like to get engrossed in a good tv program.

I love it when I’m left alone in peace and quiet, I’m quite happy with my own company. It doesn’t happen too often though. I need to fit in all the peace and quiet I can in the next week as it will soon be time for the kids to break up from school.

Linking up with the lovely Cheryl from A Chronic Voice for this months writing prompts

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