Disability

July Chronic Illness Writing Prompts

July 2, 2020 by Anne Sweet 8 Comments

Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for July.

Writing Prompts for July

BOTHERING
DEMANDING
NOURISHING
TELECOMMUNICATING
TOLERATING

Bothering

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

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

Demanding

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

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

Nourishing

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

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

Telecommuncating

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

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

chronic illness writing prompts July, a mobile phone

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

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

Tolerating

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

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

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

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

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

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

Last months chronic illness wriring prompts Link up post.

June Chronic Illness Writing Prompts

June 2, 2020 by Anne Sweet 10 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 issues. The June writing prompts are; Searching, Hoping, Traumatising, Honouring and Responding.

Searching

I have been searching online for gifts for my husband for Father’s Day, my brother for his birthday and my eldest daughter for her birthday…all in June. Then I have the kids birthdays in July and August. Searching often takes place online anyway as I don’t get the privilege of browsing shops like I used to. Now, I am even less keener on going out.

I’ve also been searching for some comfort and peace in this crazy world. It does sometimes feel like the world has gone mad and people just don’t seem to make sense to me. I know that my out look on life has become different since I became sick and disabled, but I always feel as though there is always a place for compassion. Sadly, this world often seems to be missing compassion and I feel as though I’m missing something. So, somewhere in this crazy world is my place, but I’m still searching for it.

Hoping

I always try to live by hope. If you don’t have hope then things start to fade fast. I have lost hope in the past but deep down I still hope that there is a treatment for me that will actually work. I also hope that one day I’ll be able to move and walk again. When I first got sick I was told that I’d be walking again in around 8 weeks, it seemed like a lifetime to a generally fit person. 12 months later I was given a different diagnosis and although my consultant said I could get better, nothing we have tried so far has had any effect. Hope is easy to let go of in these situations. But I will keep trying, maybe my diagnosis is wrong, maybe the treatments aren’t working because the real cause isn’t being treated? I hope that I can find a way.

I also have to keep hoping that my children will be okay. My daughter is getting older and her physical problems are becoming even more of a problem. But I can see signs in my younger two children as well. They don’t complain much, but I still hope that when they have their genes tested that all will be okay and we can all hope for a brighter future.

Finally, I hope that there is healing for this world and the crazy situation we find ourselves in. There has to be an answer out there, surely this can’t be how it has to be from now on.

Traumatising

Last month was very traumatising. Luckily we have been untouched by the virus thanks to our carefulness in staying home and avoiding contact. As part of the Office of National Statistics testing we are also positive that we are not infected with the virus as we get tested regularly and will be tested for a year. But that doesn’t mean there hasn’t been trauma.

I’ve been traumatised by a couple of poorly episodes. One day when my pain was so bad I couldn’t move all day, but the pain seemed to be starting from the right side of my brain, right where my unwanted resident Walter resides. It was quite worrying for a while, my family were quite traumatised.

Then last week I had a spasm just as I was getting into bed but it worked in a different pattern affecting my right side when they are usually left sided. Also, the spasm affected my neck and caused me difficulty in breathing. Thankfully my husband was there and he was able to move me into a position where I could breathe properly and then the spasm in my neck eased quickly. The rest of me stayed in spasm all night which wasn’t much fun. But at least I didn’t feel like I was dying.

Also, Star, who has Elhers Danlos Syndrome and has had surgery on her cervical spine, had a day when her neck was hurting real bad. We decided she needed a better pillow and bought a special one to support her neck. The pain subsided after a few days, but I hate seeing her suffer and it brings back all the trauma of what she’s been through in the past.

Finally, and I did say it had been a traumatic month, Graham had a nasty accident while attempting to fix our washing machine. It should have been an easy fix but it involved stretching a wire and fixing it together, his hand slipped and hit the metal rim of the inside of the washing machine. It sliced right through his hand severing the tendon to his thumb by 50%. Had it been any more he would have lost the use of his thumb permanently. Now, he has his hand in plaster and won’t be able to use it for weeks.

Honouring

Tough one this, but I’ll have a try. Can I go with honouring a promise? My entire life has been built around protecting my family. I’ve not done a brilliant job in some cases, especially in the early days, I got a lot of things wrong. But I promised that we would stay safe during this epidemic and we have done everything we can to honour that. We haven’t been out, Graham is the only one to have left the house, and then that has only been when necessary and he’s taken every precaution. Also we haven’t socialised, met up with friends and family, taken trips or been in crowded places.

We don’t have any plans to be going out any time in the near future. We are not safe yet, this epidemic is not over and I will do what I can to honour my promise to keep my family safe.

Responding

I have to admit that my personal response to the events of the past month have been quite intense. I’ve felt like shouting at the television and computer screen on many occasions, but I think I’ve reigned myself in quite a lot. Its not that I don’t want to have my say, get my views across or stand up for what I believe. But I do think that sometimes you are yelling into an echo chamber and it’s not good for your health.

I try to inform people when they have got things really wrong or are spreading things that are simply not true. But to be honest, I have almost given up completely on responding to anything. There is just no point, everyone has their own opinion and, well, they are entitled to it.

Click image for June’s Link up

See my last Chronic Illness Writing Prompt here.

April Writing Prompts for those with a Chronic Illness

April 2, 2020 by Anne Sweet 9 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 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

Click the banner below to read other blogger’s take on this months writing prompts.

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.