motivation

What it is like Living with a Chronic Illness

January 16, 2019 by Anne Sweet 20 Comments

I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood.

Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days.

Then you get better and go back to normal, glad that it’s over, you survived intact.

Now imagine you don’t get better and it just carries on like that for weeks on end. Or maybe it gets better for a while but you know it will be back again in a week or two. That’s what living with a chronic illness is like.

The Spoon Theory

A lot of people refer to the Spoon theory. When you are not well you can imagine a day where you wake up with a number of spoons. Then after every activity you take away a spoon until there are none left. Sometimes they can last all day and you may even have an extra one for the next day. But you can also have days where the spoons get spent very quickly and you are left unable to do anything else for the rest of the day. You can even overdo things one day, leaving you with fewer spoons for the next day.

A lot of chronically ill people refer to themselves as spoonies, I am a spoonie.

My Story

Three years ago I was taken ill quite suddenly. I don’t know what caused it but I’ve learnt since that shocks can trigger your body into attacking itself. And I’d had a shock when my Father-in-Law had suddenly dropped dead in front of me with a heart attack,while I was taking him for a hospital appointment.

Two days later I was back in the same hospital myself, virtually paralysed. Totally numb. I was originally diagnosed with Transverse Myelitis and told I would recover within a couple of months. A year later I was diagnosed with Stiff Person Syndrome plus PERM and told that recovery was unlikely.

Things I have Learned Since I Have Had a Chronic Illness

Life with a chronic illness is hard, harder than you can imagine.

Life is also difficult for loved ones, they have to watch you suffer and see someone they depended on become someone they have to look after instead.

It’s difficult to carry on with a normal lifestyle, even if you are well enough to continue working you will need to take lots of time off sick.

It’s hard being a Mum, especially when your child needs you and you can’t be there for them.

You’re mental health deteriorates, you may start out feeling positive that you can beat the illness, but as time goes by you feel like it’s just not worth living any more.

People don’t like to be around sick people.

You find that people just don’t understand how you can be ill so often.

People stop asking how you are.

You stop being invited to events because people just assume you won’t be well enough to go.

It’s difficult to plan for anything because you don’t know if you will be well enough.

A lot of partners cannot cope with life with a chronically ill person and decide to leave them.

Staying Positive

It’s amazing what a difference having a positive attitude can have. I am not always positive, but when I pull myself out of my self-pity and hold my head up I feel so much better.

Life is not always easy, not for anyone whether you have a chronic illness or not. But, it’s up to you how you approach life, how you deal with it, that makes things better. I may not find any relief from my pain, but it certainly makes me feel better when I can laugh and have fun with friends and family.

I’ve just had an awful weekend, I’m not sure if it was side effects from my infusions, or related to something else but I really was ill. I could barely do anything but watch television. My family just left me to it. But there is only so much I can take, I will push myself to do things, not give in to the pain, probably even make myself feel worse in the end. But, in my mind I want to be the winner, not the giver upper!

There has to be a balance though. Sometimes when you are rock bottom it’s okay to admit it and give in, so long as you are willing to fight for it when you are ready. I gave in, I watched 3 hours of Friends and 4 hours of Doctor Who over the weekend. I’d had enough by then, enough lying around and giving in. But I’d also allowed myself to wallow and rest. It was time to fight.

One day I know the fight will be gone, but until then I’m going to polish my spoons and keep on keeping on.

courage is not having the strength to go on, i'ts going on when you don't have the strength

Control My Pain Project

September 18, 2018 by Anne Sweet 6 Comments

The control my pain project is an online course which helps those with chronic pain restore their health, comfort and happiness.

The six week holistic pain management program leads you week by week into understanding your pain and how it affects you both mentally, physically and socially. It provides you with resources that you can use to thelp you reduce your pain and improve your attitude towards it.

The Program

The program is split into six weeks, but takes around an hour and a half maximum to work through the videos and quizzes. You are then required to put what you have learned into practice for the rest of the week. The aim is that by the end of the program you will have practised each weekly tasks so that they become natural to you.

There is nothing too difficult to digest or to do, the program is pretty easy. It explains everything really clearly and the tasks and quizzes are not difficult to complete.

The program begins by explaining the way our body, mind and what we can physically do are all connected. You are introduced to the biopsychosocial approach to pain management. For this you will learn about how your thoughts and feelings affect both your pain and your social life.

You will learn how things like mindfullness and communication skills can improve your mental and physical health. You will also learn how to practice these alongside relaxation and thought processing techniques.

Each week has video presentations by Pam and Jackie. Jackie is your guide and Pam is a professional in pain management and rehabilitation and has over thirty years experience.

My Thoughts

The program is a detailed weekly plan which teaches you why an holistic approach can work, what techniques work and how to put them into use.

Personally, I already use a lot of the techniques described but I did identify some problematic areas that I still have and I am putting what I have learned into practice.

Of the techniques that are offered that I already use I can sincerely recommend them. A lot of people with my condition spend a lot of time in the Accident and Emergency Department. I am convinced that the reason my visits have been more limited is because I know of these techniques. During an attack I am able to control my body’s responses with my mind and relaxation techniques. I truly believe that everything is connected and a calm and relaxed approach can improve your physical condition.

I am sure that if you do not know these techniques you will be able to relate to the opposite effect. Just think to a time when your emotional distress has left you feeling physically drained or in pain. Excessive crying can leave you exhausted and may even give you a headache.

Support and Information

Signing up to the program gives you access to a closed Facebook group and support by e-mail. There is also lots of extra information which supports the program available on the website in the form of a blog and a load of downloadable resources.

If you want to know more you can sign up to a free masterclass in the form of three videos sent by e-mail, this gives you a real feel for the program.

Joining the program gives you the full course and all the resources along with a support group. Full access costs $59, around £45 at the time of posting this.

If you do sign up for the free class or the course, be sure to let me know how you get on and what you think.

Disclosure: I was able to try the course for free in return for my honest review.

All You Need is Love and Compassion

May 21, 2018 by Anne Sweet 9 Comments

Last week I talked about Self-Love and how I believe it is so important to give yourself a break and show yourself some compassion. This week I want to spread the love a bit further.

It was hard to hide away from the Royal Wedding of Harry and Meghan, everyone was talking about it. In particular, the Bishop Curry, who made a big impression with his fourteen minute sermon, which was supposed to have been only six minutes. He talked a lot about love and how he believed that love could cure the world. The sermon was passionate and moving and very different to anything anyone had heard at a royal wedding before.

Love Can Cure The World.

There is certainly not enough love in this world. Just think for a moment, if we replaced all hatred with love what a different world it would be. There would be no violence, no war, no segregation, no fighting. There would be a better distribution of wealth and a more democratic society. There would be less illness and more compassion to those who were sick.

There would be more happiness, and every human desires happiness, it is our life goal.

There are some that would disagree, those that say that anger and hatred is a part of human nature that we cannot ignore.

Tenzin Gyatso; The Fourteenth Dalai Lama speaks wonderfully about compassion and the individual. If you have the time it’s well worth a read. In the meantime here is a small snippet.

Some of my friends have told me that, while love and compassion are marvellous and good, they are not really very relevant. Our world, they say, is not a place where such beliefs have much influence or power. They claim that anger and hatred are so much a part of human nature that humanity will always be dominated by them. I do not agree.

We humans have existed in our present form for about a hundred-thousand years. I believe that if during this time the human mind had been primarily controlled by anger and hatred, our overall population would have decreased. But today, despite all our wars, we find that the human population is greater than ever. This clearly indicates to me that love and compassion predominate in the world. And this is why unpleasant events are news, compassionate activities are so much part of daily life that they are taken for granted and, therefore, largely ignored.

This In compassionate World

I could list a million ways in which this world lacks compassion but I’d like to focus a little on Social Media and the Internet. I think we have a platform in which we can show so much compassion and love but instead, so many decide to attack instead.

We get people who are determined to make others feel worse or miserable, or even just pick an argument.

We get people who take every comment as an attack on how they are feeling.

The Internet can be a miserable place, so many people have the wrong kind of attitude.

To break it down into a few categories (I know there are more.) We have, those that complain about personal issues all the time, we have those who paint their lives as perfect and rosy and would never admit they had just had a blazing row with their partner and we have those who are determined to just tell it how it is.

It’s a personal decision how much you disclose about your personal life to those online. If you want to keep stuff back, that’s fine, if you want to tell all, that’s okay too. What’s not okay is if someone takes what you say and uses it to attack you. Doing this makes both parties unhappy. Even if the person being unkind thinks it makes them happy, it really doesn’t. In the long run it will only bring them misery because no-one wants to be friends with someone like that and we all desire the friendship of others even when we think we don’t.

A little compassion goes a long way. Deep down we all know that showing kindness makes you feel better and the other person will feel better too.

Love is Strong.

These days we have lost the belief that love is strong. We see it as weak, we see compassion as weak. But it’s not, it’s strong.

In a world where people are hell bound on not giving a f**k we think that love will just bring us down.

I’m all for getting rid of the rubbish in your life, cutting out the stuff that makes you miserable. And of course there is only so much you can care about isn’t there?

Compassion is not all about giving in, or allowing other’s to control you. Love is strong, it will make you feel better, it will give you a better life. You don’t have to care about everything, but if you start to practice compassion regularly it won’t matter, you will find yourself caring without stress. Hating is much harder work than loving and much more draining.

What do you think?

Would you be prepared to show a little love to someone today.