Disability

April Writing Prompts for those with a Chronic Illness

April 2, 2020 by Anne Sweet 1 Comment

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 April writing prompts are; Returning, Understating, Distancing, Stressing and Celebrating.

Returning

These past couple of weeks I have returned to home schooling. This isn’t something new to me, I’ve done it four times before. However, I’ve only ever had to home educate one child at a time. Now I have three at home, aged 9, 12 and 14 years and it’s very different. The older two are very much left to their own devices, but I know my 14 yr old is having problems. The 9 year old needs lots of encouragement. It’s not been easy, but I’m trying not to put to much pressure on them or me. I’m no teacher!

Understating

So many people have understated the danger of this COVID-19 virus that has taken over the world. The government understated the importance of social distancing and staying home. And when the schools were closed a lot of British families took it as a chance of taking a holiday. The results of which will surely be evident very soon as the cases of the virus infections rise rapidly.

Distancing

We decided to distance ourselves a little earlier because of my weak immune system. So the kids did not go to their last week of school. I’ve been keeping a diary of our isolation so I won’t go into that here.

When you are chronically ill though, staying home becomes the norm. I rarely go out anywhere. I find going out stressful and I’m rarely well enough. I felt so guilty when the kids had a week off for half term. We managed one day out shopping and that was it. I promised I’d make it up to them at Easter..but now we won’t be going anywhere until we are sure we are safe.

I distance myself from friends and family when I am not my best too. I don’t like them to see me too ill, I hide a lot of what I feel. But, I’m both lucky and unlucky. I have a big family at home, there are seven of us. This means I am never really alone, which is good in case I need help. But it also means I never really get any peace and quiet. I don’t mind being alone, I can cope without social interaction. But that’s never going to happen in this house.

Stressing

Stress is a big factor in my illness, the more stressed I become the more ill I feel. When this whole COVID Pandemic started I felt the need to know everything, I spent ages watching television and reading about it. I felt the need for information, I needed to know everything, I wanted to be armed and ready. Instead I overdid it and stressed myself so much I made myself physically sick.

Now, I’m keeping my stress levels down by limiting my news and learning about the virus and choosing mindful activities instead. I’m still worried, but no longer stressing.

Celebrating

Oh my, Easter is my favourite time of year, two weeks off school and loads of chocolate. It’s going to be so different this year. We are not going to be able to go to the farm to see the baby animals or enjoy days out in the warmer weather. I’ve bought Easter Eggs nice and early so the kids (and grown ups) will get their chocolate treats. They also have eggs off my brother and his wife which they exchanged before the lock down.

Spring is coming, we’ve had some sunshine and I can see the leaves on the trees at the bottom of my garden started to appear. I love to celebrate the changes in the Seasons which involve lots of colour changes. I love to celebrate the new life that Spring brings too. But these celebrations are not the same with that big dark cloud of COVID-19 hanging over us. I know one thing, I will celebrate when it’s over and life can return to normal, or whatever new normal we will have to endure.

April Writing Prompts

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Monthly Chronic Illness Writing Prompts. Why I stay!

March 3, 2020 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.

February 12, 2020 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 – What Am I Looking For?

February 3, 2020 by Anne Sweet 8 Comments

Each month I join in with Sheryl from A Chronic voice with her writing prompts. This months prompts are:

LOOKING
PLAYING
JOINING
INVIGORATING
DITCHING

Looking

In just a few days I’ll be having large Magnetic Resonance Imaging machinery taking a look inside my head and neck. Oh, I hate the MRI machines. The first one I had when I was admitted to hospital four years ago. They didn’t know why suddenly I could no longer walk or move my arms so they sent me down. I had no idea what to expect, I was already terrified as I didn’t know what was happening to me. One day I was fairly okay, the next I was paralyzed and I had no idea why. They took me down to the MRI and put me on the bed. They fastened my head down in a casing and put me in the machine. My nose was just inches from the top and I panicked. In fact I panicked so bad they had to take me out.

The next day I was given a sedative before they tried again. I got through it, but I was in there for an hour and fifty minutes. It was my worst nightmare and I hoped that I’d never have to go through that again. A wuss I know, but I am claustrophobic and I don’t even like small toilet cubicles. To me, It was on par with being buried alive.

I’m dreading Wednesday, but I’m more prepared now. I already have my sedatives to hand. I will take one in the morning and another as I arrive at the hospital. Thankfully, my MRI is real early so I don’t have to spend the whole day worrying about it. I’ve been practicing breathing and mindfulness techniques to get me through. I can do this, even though I’m not looking forward to it.

QE Hospital Birmingham Looking at the hospital from the front.

Playing

Playing is associated with fun stuff, but at the moment, I don’t feel like life is much fun. Everything is playing with my emotions to the extreme. I feel like I can’t cope with the pain, the struggle of day to day life and dealing with my body and what it keeps throwing at me.

But, I do have kids and sometimes the best times are playing games with them. I can’t do the things I used to, but we can still get out a board game or a card game to play. It does help to take my mind off things looking forward to playing games with my little ones.

Many years ago I had a pc game on a CD which I bought from the cheap basket at PC World. It was called Mahjong Four Winds. I have long lost the CD and despite searching I’ve never found anything that played like it. I loved that game so much but nothing compared. Then my eldest son came to me with a game called Mahjong Souls. It’s not identical, some of the rules are different and the cards are not quite the same. But the graphics are very similar and the game play the same. It has lots of extra features where you can play against other, real people, and win prizes. You can also choose who you play as. I love it, and it’s a great way of passing time.

Joining

I don’t know if you can call this joining but I couldn’t think of anything else to put in this prompt. This week I am joining a therapist to talk about my feeling about my illness and life in general. I’ve been waiting a long time to do this, I’ve spent so much time thinking I can do this alone. But I can’t, and I know that now. So, I’ll be joining up with someone else to help me with the mental issues involved in dealing with daily pain and disability. I’m looking forward to coping with life better in the future.

Invigorating

This is another area I am having difficulty with. I find it hard to find anything in life invigorating at the moment. I know, I’m all doom and gloom. It’s not good for me though. I know that the brain and body are connected, the sadder I feel the more pain I feel. It’s the same for everyone.

Maybe I could look for something more invigorating. I can’t do much physically so I could focus on something more stimulating for my brain. Each year I try to learn something new. Last year I did a poetry course, I’m still looking for something I can learn this year.

Ditching

I’m going to be ditching some bad habits. Something that is never easy to do. I remember when I gave up smoking, some fifteen years ago, and I thought that was really hard, but now I know it was one of the best things I could have done. So what else can I ditch?

Unhealthy food comes to mind. I find that when I cut out certain foods I feel better. I really need to get more of a grip on this. I’m overweight, but it’s hard to lose weight when you are immobile, and I barely eat a full meal. I’ve started having trouble swallowing a lot of food lately, another new symptom perhaps? Maybe something the MRI will shed a light on.

So, ditching crap food is a good start, and also the habit I have of procrastinating. Now, I can’t do much, but I can make others, or try to make others do things. I’ve been so rubbish at this. So, the bathroom needs painting, I can’t do it myself, but I don’t ask for help to do it, or I don’t insist that it should be done. I’m going to ditch procrastination, but not for me, for my whole family. Even the kids are no longer going to be sitting around doing nothing all day. It’s no good for anyone. They probably won’t like it, and I’m going to find it hard, but I think we will all benefit in the end.

Final Words

Physically, things are getting harder for me. I’m falling or stumbling more often. I’m having to use my wheelchair more inside the house. I’m not sleeping well at night, which means I tend to pass out a lot during the daytime. I’ve had trouble adjusting to my new medications but since I stopped the IVIG I am taking so much more. I’ve also noticed a lot more symptoms that have crept up on me. Life isn’t so good right now, but I will keep fighting and hopefully I can turn things around and make life better for everyone. This year I should be getting my lift and wet room fitted in my home. It will be so much help, so that’s something I’m looking forward to.

Previous post Welcome to 2020

Chronic Illness – Welcome to 2020

January 6, 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!