chronic illness

July Chronic Illness Writing Prompts

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.

May Chronic Illness Writing Prompts.

by Anne Sweet 17 Comments

Each month I join up with Cheryl from A Chronic Voice, to use her writing prompts to tell my readers about how I am coping with my health. The May writing prompts are; Foreseeing, Panicking, Upbringing, Accessing and Soothing.

May Writing Prompts

Foreseeing

As someone with a chronic illness I think I kept a close eye on the rise of this pandemic and I guess I did foresee how bad it might become. That is probably why we have been staying home a little longer than most. My children and I had a virus (not THE virus) just before COVID-19 became big news and the kids were off school unwell. I took the decision not to send them back and was worried how long I’d be able to do that. Then within a week the school was closed anyway. The kids don’t seem to be bothered about the amount of time they’ve been off school, despite it being longer than the Summer Holidays right now and not knowing how much longer it will be. We’ve not even done any of the fun days out and stuff we generally manage during the holidays.

Maybe not foreseen but prepared. My poor kids are used to not going out thanks to their Mum being sick. It really doesn’t bother them.

Panicking

I will admit I was panicking about the virus when the pandemic was first announced. I had nightmares, I was scared. My daughter was still working although my husband was taking her in the car so that she didn’t have to catch the bus.

Since being at home for so long our immediate panic is over. We know we are not sick and are less likely to get sick from this virus. We have also been chosen to take part in regular testing for scientific research, so we will know if we have had the virus (I doubt this) if we are immune to it, or indeed if we catch it. It does sort of help with the panic.

There are other things I have had panics about though. I had a confusing letter from the hospital about my MRI scan. It said that ‘something’ was wrong with my brain but I was not to worry too much. What that ‘something’ was I couldn’t work out from the medical terms in the letter. So, I arranged a telephone consultation with my neurologist.

He explained that my brain was under pressure, but it was low pressure which is not as dangerous as high pressure. At some point my brain had bled. This could have been from a blow (which I can’t pinpoint, but I have so many accidents it’s hard to say) or it could be idiopathic. (It just happened) Anyway, I have fluid covering my brain that shouldn’t really be there but it’s not much, not enough to worry about. I also have blood clot, but it’s more like a scab on the surface of my brain, so it’s not in my blood stream, it’s not going anywhere or going to cause me any trouble. (Although, they will keep an eye on it.) I’ve named it Walter, because I always believe that naming things make them less scary. Walter may have caused a little panic at first, but he’s fine now I know what he is.

Finally, I had a panic when I found out that I was robbed! My bank was emptied over the Easter Holiday with someone taking every penny I had. Thankfully the bank was very understanding and I did get my money back pretty quickly. I’m still waiting for Paypal to sort things out though as my account there was hacked too. In fact, I think it was through Paypal that they got my bank details as they were connected.

Upbringing

As Sheryl explained in her list, upbringing is a little mismatched. But I guess it does shape how we live our lives.

I know as a child my family was probably a little different to many. My Mum had five sisters and two brothers and I had many cousins. I also had a few disabled cousins including peers with Down’s Syndrome and Severe Brain Damage. We were brought up to treat them as our equals, and not to focus on their differences.

This prepared me to be more accepting of disability as I grew older and one of my first jobs was working with disabled young adults.

I have three autistic children. The first was a shock, I found it difficult to accept his differences despite my upbringing. This was my child and he was perfect. Over time I realise that he’s still perfect, as are my other children.

I even have to accept that I am now disabled, I do wish my Mum and Nan were around to help me get through this.

me and my Mum a long time ago, paddling in the sea. The photo is in black and and white. — *Me and my Mum*

Accessing

As someone who doesn’t get out much, I have had experience of poor access for disabled people. The lock down has meant that I don’t have to worry much about this now. There are some areas where I have seen better access though.

As a vulnerable person I’ve had priority access to online shopping. This is so important as I have a big family to feed. I could send my husband shopping if needed, but then he’d be at risk of picking up the virus and bringing it home, which in turn would put me and the rest of the family at risk. There are seven of us at home and many of us health issues we can’t risk bringing the virus home. We also need to eat 🙂

With three children missing school I’ve also found having access to lots of learning facilities really helpful. The schools have been great with providing the access. I’ve already shared one of the Little Man’s p.e. lessons which made us all laugh but which get the kids moving every morning. The Internet offers access to almost everything and it’s wonderful that we have this resource at our hands. I feel if this had happened when my older children were young then we’d be relying on books and television. I guess we wouldn’t even have been able to access regular e-mails and ‘school pings.’ I feel so lucky and appreciate everyone who has worked hard to make all this information so accessible. Teaching at home is a difficult job.

Soothing

Every morning, when all is quiet. I open up my patio door and spend at least a few minutes (depending on how cold/warm it is) listening to the birds. Over on my Instagram highlights, I even have a couple of recordings of this sound. This is how I begin my day, and no matter what is to come I find it very soothing.

Other things I find soothing are my crochet and audio books. Sadly, for the first two weeks of lock down I wasn’t able to get motivated to do anything. I guess that was fear and panic taking a hold. I have now started to get into that place now where I can soothe myself with hobbies again. It’s good to spend some time thinking about something completely different.

I don’t know how long this disruption to life will last, I don’t know what we have to look forward to. I don’t think anyone can really predict it. But taking one day at a time is soothing. It’s all anyone can do really. You can’t really plan for an uncertain future. As someone who plans everything meticulously, I’ve found that not planning has not been as bad as I thought it would be. I understand that for many others that the uncertainty can be very scary and that so many people are suffering and will face more suffering. But, we all need to take one day at at time and start to work out how we can plan changes rather than plan to continue our lives as they were before.

Click the image for more blog posts on the same May Writing prompts.

If you enjoyed my May writing prompts you may want to read more with my April prompts.

Monthly Chronic Illness Writing Prompts. Why I stay!

by Anne Sweet 11 Comments

Each month I like to join in with Sheryl’s writing prompts. She gives the prompts and then I have to write about each of them and how they apply to my life. This month I’m really thinking about why I stay.

The prompts this month are

STAYING
DOING
BEING
TARGETING
WEIGHING

Staying – Why I Stay

So much of the time, especially in the recent months, I’m thinking why I stay. Yes, I mean why I stay alive, why I stay here on this planet, why I stay here in this house, this home. A lot of the time I don’t want to stay, I want to be anywhere but here.

My family drive me nuts, my illness drives me nuts, my daily routine drives me nuts. My work, my words, my life, waking up in the morning, going to bed at night, it all drives me insane. I so often don’t want to do it anymore.

But then I think again. We only have one shot at this life and so far I’ve been through a lot. But that’s my life and that’s the one I was given. Yes, I could have been given a life of luxury with a nice house, plenty of money and lots of holidays. I could have been given a life in war torn Syria. But I wasn’t, I was given this rather ordinary life in England. Which got messed up along the way, but it’s still my life.

And I still have things I can be proud of. Especially my children. And that’s why I stay.

Doing

What will I be doing this month? Well, we are currently in the process of having our family bathroom turned into a wet room. That means an accessible shower for me. So, although I won’t be doing the work myself, I’m coping with the workmen every day disrupting my daytime routine. (You know, the one I’m sick of!)

Then I’ll be helping my husband re-arrange our bedroom in preparation for my lift. He’ll be doing all the hard work, but I really need a huge purge, so I’ll be telling him what has to go. (including two bookshelves full of books.)

Being

I guess I’m being me. My usual moany but unable to ask for help self me. My hope is that I can be different. I feel as though I have learned so much recently. I have done a lot of studying and reading and learning, but the last couple of years I’ve become so much more aware of people. I’m not so sure I like people very much which is strange seeing as I have a degree in psychology. You would think I understood how people behaved, but trust me, it’s takes more than a psychology degree to understand people. So, I’ve decided that I have to start really being who I am and forgetting about what other people think of me. So watch out for me being different. Although, I may just appear to be the same. Some things I refuse to change.

Targeting

What am I targeting this month? Well, I guess it has to be my health. I’ve been reading through my consultant’s letters and something clicked in how my health has changed over the past few years.

There are two things I need to target. My mental health, which I’m already working on with a counsellor, but I also need to work on more pain management. I thought I was pretty good at mindfulness and mind over matter, but it turns out that, yet again, I have much to learn. I will be focusing on this a lot over the next month (And forever.)

The other thing is my weight, or more specifically, my diet. I have learnt that specific things trigger me, too much, or too little sugar can have an adverse affect on my health. Also, my stomach suffers after eating certain foods so I really need to avoid or find alternatives for bread, milk, some fruits and coffee. There are probably a few more things I need to add to list, but it’s not so simple as following a specific diet, this has to be ‘my’ diet. I do need to lose weight too. Before I got sick I used to fret about being 7 lb overweight, now I’m more like 28 lb overweight and it’s hard to shift being so immobile. I barely eat anything as it is so it’s going to be hard to shift, but I’m sure it will make me feel better.

Most of the weight I put on after having high doses of steroids. Not everyone is the same, but after the first dose of IV steroids I put on a few extra pounds. Then a year later I was given a second dose of IV steroids followed by six months worth of them titering them down each week so I didn’t stop suddenly. This dose caused me to put on most of my weight and also destroyed three of my teeth. (My dentist said that steroids do not affect teeth, but after talking to others I found out its quite common.)

Weighing

I’ve just confessed about my weight gain and how I need to change it, so now I’ll talk about something else.

I’ve been weighing up my life in general and working out the things that have the biggest effect on my health. As I’ve already stated I’ve identified these as mental, food and weight.

Overall, my current quality of life isn’t good but after weighing everything up I am coming up with plans for improvement. My home will be improved to help my ability to cope, my mental health is having a real good spring clean, and my physical health will hopefully improve too.

For four years I’ve been looking for a cure, and came to the conclusion that there wasn’t one. But after weighing it all up, maybe I was wrong. Maybe I can get better, or at least improve a little.

I started this post by talking about how I have been so close to ending it all, but as you can, my positivity has won over and I am already working on how to make life better. I lost faith in myself and in humanity, but my cup never fully emptied and I know I can fill it up again.

Thanks for reading and if you’d like to see how other’s have interpreted these writing prompts then please click the image below.

My Writing Prompts for February

I’ve been Robbed.

by Anne Sweet 4 Comments

I wrote a post three years ago, I wish I didn’t Hurt and it still gets lots of hits. Probably because of the image included which is actually a quote for Fibromyalgia. Now I feel I’ve been robbed!

This is my life. This has been my life for more than four years now. You see, I was educated, ambitious, hardworking and tireless. Then, literally overnight I was robbed of my ability to work, clean my house, exercise, think clearly and ever feel awake or healthy again. Ever again. I was robbed, it was taken away.

Stop, think about that for a minute. Argh, I don’t want to do the washing up I want to watch Eastenders, replaced with, argh, if I do the washing up I’m going to be in so much pain I won’t be able to concentrate on the television anyway.

Pain has Robbed me

I wake up in pain. My back, my legs, my neck, my arms. It hurts to get out of bed. Occasionally it hurts too bad to even turn off the alarm. But I do it because I have to. I have children who need me. But, it’s not only that, its my determination to live a normal life as possible. If I stay in bed I will be giving up, giving in, letting the pain win. But the worst bit is, the pain won’t go away or get any better if I don’t get up. In fact, I’ll just feel as bad, or even worse.

The relentless pain covers most my body but mostly my legs, feet and lower back. Then suddenly my arms and hands will hurt. I turn and my stomach or neck hurts. I bend to scratch an itch or pull up a sock and the pain in my side brings tears to my eyes. I stand at the work top to make food or even a cup of tea and my legs feel like I’ve just walked 20 miles in stilettos. I sit down and my back feels like its burning and my bottom like I’ve just sat on a concrete rock. I can’t curl up on the settee, I can’t cross my legs, comfort is a long lost memory. I go to bed and I lay on my side and suddenly my legs start shaking and my toes go into spasm. This is just the tip of the iceberg. A tiny insight into my pain.

Then today I read a post on the Brainless Blogger on Why do I Undermine my Pain? And I realise that I do it too.

It’s Not That Bad

I have always had low blood pressure. Not too low to be an issue, but sometimes they were a little concerned during my pregnancies. The only other time I’ve seen concern was when I spent two weeks in hospital, they practically forced me to have salt on my food! So, you get sick, one of the first things they do is take your blood pressure, and hey presto, it’s fine. So you are fine. Right!

I also have some great breathing techniques to keep my heart rate normal. I started this many years ago, before I got sick. I can bring myself out of a panic attack just by breathing. The only time I had issues was last year when one of my medications was causing my heart to ‘play up’ a little. I’ve stopped the medication and now things are much better.

When the pain gets too bad I can use distraction techniques, or if all else fails I can pop a couple of extra diazepam. The drugs don’t work they say, well they may not take all the pain away, but used right they can take the edge off, even if the payment is not being able to stay awake for five minutes.

I’m good at keeping calm, using breathing techniques and even meditation. If the pain gets to bad then I use my head to keep it under control. Most of the time it helps a lot. Sometimes, I genuinely feel it’s saved my life, in particularly one time when I had a bad spasm and almost choked myself.

Hey, it’s real bad!

I went to hospital after an IVIG treatment. I couldn’t hold my head up it felt so bad. I couldn’t feel my left side, but then that’s quite common with my condition. They took me to triage and did my SATS, they were okay, just a bit hot. The nurse could see I was suffering so she gave me a little dose of morphine. It did nothing, not even touch the side of the pain.

I went into a cubicle and the doctor did the FAST test. Nope, I wasn’t having a stroke. You have a migraine, he told me. I have had migraines for over 30 years, I wouldn’t have gone to A&E with a migraine. He called my neuro consultant. Ah, I have a rare condition, I’ve just had treatment, it’s a side affect. Bye, Bye. Did I make a fuss? No, I felt too ill and the morphine made me feel dopey. I went home.

On my notes it says drug induced aseptic meningitis (DIAM.) Nothing to worry about then.

The Crash

No, I didn’t need resuscitating. I was in a car accident. At the scene my body had reacted to the impact by going completely stiff. Which is quite normal for me. The ambulance crew had to help me out of the car onto a trolly and into the ambulance. I was panicking I know, but my Little Man was there and I didn’t want to scare him. So, I closed my eyes and breathed. I got it under control, my heart rate was okay, my blood pressure fine, temperature fine. “How’s the pain on a scale of 1-10 where 10 is the worst imaginable, and 1 is perfectly fine” I was asked. I looked over at my frightened Little Man. “About 7” I replied calmly. In my head I was screaming 99!

At the hospital I was put on a trolley in a corridor for 2 and a half hours. Every so often a nurse came along for the usual temperature, blood pressure and heart beat. I’m fine. The pain seared up my spine, my foot hurt real bad, my head was pounding and I felt sick. But I was fine. And the Little Man had been picked up and taken home. Everything was good.

Finally, I was taken into a cubicle. “Can you lie on your side?” Yes, with a little help. ” I’m just going to feel your spine” ouch, ouch, ouch, ouch, ouch. No more control, my body took over and I went as stiff as a board. “I can’t feel any swelling, can you relax for me” Time for husband to explain that it was part of my condition, my body would go stiff and I was unable to do anything about it. I couldn’t even speak properly. Husband told him I was worried about the pain in my foot and the doctor went to look. There was some blood but it was soon cleaned up. He tried to move my ankle but it wouldn’t. He said he’d come back in a while when maybe the spasm would have stopped. It didn’t.

I was given a leaflet for whiplash and sent home. I couldn’t weight bear on my ankle for weeks, it was sprained. I felt that my condition had prevented my having any real treatment, despite waiting for so long. When I was told to go home my husband asked for a wheelchair. The doctor, a little confused, asked why. My husband explained it was because I was unable to walk and the doctor assumed it was because of the ankle. Still, he didn’t seem too concerned and said I should be able to walk on it. Then My husband explained that I couldn’t walk anyway. Honestly, by this stage I just wanted to go home and didn’t care. With afterthought, I did think he was insensitive, quite rude and fairly incompetent. But at the time I just felt like I was being an awkward annoying patient because I just wasn’t simple to treat.

Trapped and Robbed

I feel trapped in this body of pain and immobility. I feel robbed of the life I once lived. But what can I do? I’ve fought for treatment, I’ve practiced mindfulness, I’ve tried to accept.

I feel trapped and robbed because I can no longer complain about how I feel. I’ve been sick for years now, people are bored of hearing about it. I should stop moaning and get on with my life.

I feel trapped and robbed because I have friends and family that have refused to understand. I shouldn’t focus on my illness, writing it down will make me feel worse, complaining will only drive people away. And, hell, trying to tell my story to an online magazine in the name of awareness for my rare condition was completely unforgivable.

I wanted to write this, not for sympathy or admiration for how brave I am. Not even to raise awareness of my ultra rare condition that no doctor seems to understand. I wanted to write this to let you know how I feel.

Trapped in this stupid sick body and Robbed of my life and any kind of respect.

it's all about me - poetry in stitches — Poetry in Stitches

Do you have an illness or disability that has robbed you of your former life?

Chronic Illness – Welcome to 2020

by Anne Sweet 7 Comments

Welcome to 2020

This is my monthly link up post where I join in with the lovely sheryl from A Chronic voice and give my ideas on her writing prompts.

The prompts this month are Purging, Seizing, Opening, Revamping and Envisioning. Welcome to 2020!

Purging

Getting rid of stuff, hey I really need to do that. I need to keep my house clearer to assist my mobility. At Christmas time when the kids had their toys all over the floor, it made me very unstable and I even had a fall landing on my daughter. (I didn’t hurt her.)

The Christmas toys and decorations have gone now but it’s made me think of how I can get rid of more things to make more space. In particular my bedroom. I’m slowly getting there in getting it all sorted out, but there is so much more I need to purge. I will be needing a lot more space in there later this year.

I have also purged my kitchen cupboards of tins and jars that we will never use. I’ve asked my husband to take them to the local foodbank. Hopefully they will be more useful to others in need and it’s a great way of making more space while helping someone else. Of course, all the outgrown clothing goes in the charity bags too.

Seizing

I wasn’t sure what to write here but at times I really feel like giving up altogether, so I guess those are the moments when I seize every day. It can be hard living each day in pain and not being able to do things you used to do, but sometimes you have to seize the moments you can and make the best of them.

These days those, most of the seizures happen within my own body, but I will keep fighting and find a way of getting rid of them.

Opening

I’ve had my eyes opened a lot over the past four years. A lot of my previous thoughts and beliefs have been turned upside down. It’s not a bad thing although it hurts at times. Especially when you find that trust isn’t kept and ideals not shared.

I have always believed myself to have an open mind but in fact it’s been very closed. This year I will open my eyes even more and instead being shocked and dismayed I will do it with understanding. Everyone is different after all.

I’m also going to open my mind to other kinds of therapy. As the song goes ‘The Drugs Don’t Work’ they may help a little but I want more. I used to have so many things I believed in, I thought the mind could heal anything. So maybe it’s time to start thinking outside the box, or even the consultants office.

Revamping

I need a lot of revamping in my life. I am going to change my daily routines and give my soul a revamp. I think this will call for a lot more organization and work, but that’s maybe what I need. I have too many things going on, I always do, but if I can organize them I can give them the attention they need. First of all I need to decide what I can and can’t do and to focus!

Also, there will some revamping of my home, if you can call it that. This year I’ll be having a new wet room installed so I won’t be risking my life everytime I take a shower. I will also be having a lift put in so no more stairs for me. Some days going up and down the stairs is my worst nightmare.

Envisioning – Welcome to 2020

Each year I make sure I have a lot of things to look forward to, whether it’s a holiday, a trip to the theatre or a new project. There always has to be something to keep me going.

This year I think it’s time to think bigger and better and do those things I’ve always wanted to do but never managed. If I can envision it, I can do it, right? Watch this space!

December link up Post

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