chronic illness

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 – 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!

December link up Post

December – Life with a Chronic Illness

December 2, 2019 by Anne Sweet 9 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.

All You Need is Love, waiting, perservering & affirmation.

October 1, 2019 by Anne Sweet 15 Comments

This is my monthly post which I link up with Sheryl’s Chronic Illness link Up Party. This month I’m talking about Waiting, Parting, Perservering, Affirming and Love. This is also doubling up as my first Blogtober 2019 post.

Waiting

Last month was not a good month. I’m still waiting for test results, but this is the second lot and the first came back clear. If these are clear then once again my symptoms will be put down to Stiff Person Syndrome. When you have a chronic illness, everything that goes wrong seems to be blamed on your current illness.

I’m also waiting for my daughter’s genetic and chromosome test results. I know these take a long time, but when the time I was given arrives I always get anxious. I’m praying so hard they don’t find something serious. Coping with her illness was hard enough when I was well, I can’t bear the thought that she may have worse to come.

Parting

In August a friend I’ve known for about 15 years passed away after a long battle of cancer. She was buried last week. It was a sad parting. I still can’t believe she’s gone. I’m not afraid of death, but grief is so hard to deal with. I hate to think of the suffering of my friends family, especially her husband who is not well himself, and her two children. It’s so sad.

This month is Breast Cancer Awareness Month. I’ll be posting about it on my Social media accounts. This affects so many people, more needs to be done to help. Ironically, yesterday I had my first ever mammogram.

Perservering

Oh my, this has been a tough month health wise. I’ve suffered so much. Some days I feel I can’t go on like this but it’s my family that keeps me going. There is no way I would leave them intentionally so I have to keep perservering with trying to make life better for me and for them. Some days it’s so, so difficult to carry on. I don’t want to feel like this anymore. I want to carry on with my life and do all the things that need doing, but sometimes even the simplest tasks take so much out of me.

What choice do I have? Sometimes it seems hopeless, I keep suffering and I know my family suffer by watching. But I will keep perservering in trying things that will make things better for us all.

“Life is waiting for you. You might be stuck here for a while, but the world isn’t going anywhere. Hang on in there if you can. Life is always worth it.”
― Matt Haig, Reasons to Stay Alive

Affirmation

I truly believe that the brain is stronger than the body. Mind over matter. Sometimes it’s all I have. So I continue with the self help, keeping my affirmations, telling myself that I can get better and believing it. I take time to live in the moment. I love reminiscing about the past, but it won’t make it come back. Making plans for the future is fun, but you can’t live something that hasn’t happened yet. So, the only thing you can do is live for today. Get through one day at a time, good or bad and look for the things that make me happy.

I love my Little Man and Boo coming home from school and coming to give me a hug. Star is not the hugging type, she’s like huggin an ironing board! I was feeling unwell the other day and she gave me a very rare hug, it meant everything to me. The hugs off my children keep me going, even my big kids hug me. (As a side note, I barely remember hugging my Mum, apart from when she was in hospital, and after she had died. I guess I was an ironing board too, but my kids have taught me otherwise.)

Back to Affirmations, I’ve been reading a lot of Matt Haig lately and he seems to speak to me. I love this quote.

“Make sure, as often as possible, you are doing something you’d be happy to die doing.”
― Matt Haig, The Humans

Love

As I said, I’ve had a bad month health wise, so reading has been my friend. I’ve loved reading Matt Haig, but I’m also halfway through a very sweet classic book, I Capture the Castle by Dodie Smith. I think I may stear away from some of my usual murder mystery type novels and maybe add a little romance to my reading. After all, they say, all you need is love.

“No one will understand you. It is not, ultimately, that important. What is important is that you understand you.”
― Matt Haig, The Humans

I’ve never really classed myself as a romantic. I’ve always found the conception of love quite difficult. I mean with family it’s unconditional and that love I find comes naturally. But loving others I find difficult. I think my life needs a little more love.

When my friend passed recently, it was obvious how much she was loved. Am I loved like that? I thought that the way to find love was to please people all the time, or shower them with kindness or help. But, some people just don’t respond in the way you would expect. Love is a strange old thing, and I don’t just mean romance.

“Maybe love is just about finding the person you can be your weird self with.”
― Matt Haig, Reasons to Stay Alive

Thank you for reading my round up this week, by clicking the picture below you can visit Sheryl’s link up and see how other’s have interpreted these prompts.