Category Archives for "Spoonie Life"
posts about life with a chronic illness
posts about life with a chronic illness
It’s easy to get caught up in all the negatives that happen in life. Things don’t go your way, you fall ill, you lose people or your job, you feel sick, there are just so many things that can bring us down, but this is just part of life.
The minute we stop expecting life to be a fairytale and accept reality, that’s the moment we open ourselves up to the truth and the freedom that comes with it. It’s hard to expect perfection at all times. It’s hard on ourselves and on those around us. Nobody can live up to that expectation. Life doesn’t work that way.Continue reading
I have a date tonight – with Twitter! Every Wednesday evening I spend an hour on Twitter, along with a bunch of other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. You can join in the fun too, we’d love to have more advocates taking part!
We post memes, links to research or media coverage, personal experience, all sorts of things that will help shed some light on what life is like with this debilitating illness. We tweet and retweet for an hour, our hope to to make #MECFS trend on the front page to get the most attention we can. I hope you will join us, even if you only retweet other people’s tweets. Come find me on Twitter at: chronic_hopeful
It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue.
You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get over excited about something?
It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. Continue reading
People with ME all suffer at varying degrees, we cannot compare our flares to somebody else’s. What one considers an ME/CFS flare another considers just another regular day with ME. What one person with ME considers a normal day, might be somebody else’s idea of torture. Once thing they all have in common is that everybody’s battle is devastating.
We learn to acknowledge and respect everybody’s pain and everybody’s victories, because despite not fully understanding each other’s experiences, we can all agree on a few things: ME/CFS is life draining, heavy, isolating, painful, lonely, misunderstood and just plain horrible to deal with. And none of us would ever choose to have it or wish it upon our worst enemy.Continue reading
Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.
I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading
In the chronic illness community, you will find some of the strongest people you will ever come across. They are warriors who fight many battles daily, often against their own bodies or minds, just to get through each day. As much as there is hope and strength, there is also a lot of neglect and isolation.
I often come across people who are losing all hope. They feel so alone in the world, disbelieved or misunderstood, but in reality there is so much support and love available to them if they just reach out or know where to look.Continue reading
When living with a chronic illness, whether it’s a physiological or psychological condition, it is common to start doubting yourself. Your confidence dwindles as you lose the ability to function the way you once did. You might start to feel useless, helpless and hopeless, but there is so much you can still offer the world!
You have overcome so much already. Every day you wake up is a new victory and a clean page in your story on which you can write the next chapter. You’re brave and strong. Things that healthy people take for granted; their mental clarity, their energy, their physical strength – you fight for every little bit of it that you can find just to get through each day!Continue reading
I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s often an unnecessary risk to your own health. Let me explain why I think so…Continue reading
I am regularly contacted by people who have recently been diagnosed with Post Viral Fatigue or Chronic Fatigue Syndrome. They are often scared, worried and confused, but also hopeful and determined to return to their normal life. Their question is usually the same: what can I do?
Having a diagnosis of PVF or CFS is difficult to deal with because there is so little information out there and often doctors don’t know what to tell you. They haven’t been trained in the management of CFS and are often ill-equipped to give advice to newly diagnosed patients.
In this post, I will outline some of the main points you need to be aware of as a newly diagnosed patient. Things your GP might not tell you. I am not a doctor, but I am a patient, and I have spoken to many other patients with decades of experience in living with this condition.
Doctors call these long-term sufferers “expert patients” and the advice they gave was vital in my initial stages of PVF/CFS. I will summarise that wisdom below in the hopes that it will help many more.Continue reading
Good morning friends, I’ve just woken up and it’s almost 11.30. I’m stiff and achy, was a little shaky upon waking, but I’m so happy!
I was brushing my teeth and realised I’ve been wearing the same clothes the whole week! Waking and sleeping. That grossed me out a bit, but it isn’t the first time this has happened and won’t be the last.
As I was filling in my journal last night, I noticed that every day this past week, except my birthday on Friday (Yay!), was marked as a flare day. Every single day.
Sometimes, no matter how hard we try to do the right thing, we just flare amyway, I can’t even remember what might have caused this week long flare.
I didn’t even realise it had already been so long. It’s like my memory resets when I have a good day and I am emotionally energised by the good days for quite some time after.
It’s like that good day will stay in my memory and the joy it gave me will just last, like a gust of wind in my sails, pushing me ahead until the next one. Despite actually paying for it physically for some time after.
It doesn’t even have to be a good day really, it could be a good meal or a fun chat with a friend or a beautiful comment from somebody I’ve never even met who connected over something I shared online.
These are all small things to the heathly person, but they are accomplishments worth celebrating if you’re chronically ill and housebound.
The good experiences we have daily fill our sails and can carry us forward to the next port. That could be a celebration, a visitor, an outing – any of those beautiful occasions that are rare and exciting, but also potentially difficult exhausting.
The effects of such occasions are often quite positive on us emotionally and are great for out mental health, but can be quite draining or even painful physically, which will mean once again focusing on the small blessings each day brings until we’re able to enjoy the celebration at the next port.
So you can see how the small things in life are so important. When you’re stuck in bed paying for some semblance of normality you tried to experience, it’s those little things that can mean so much: a text or a card in the mail, the sunshine on your face, the sound of birds outside, a delicious meal, a soak in the bath, clean sheets, a quiet neighbourhood, the view from your bedroom window…
Search for the beauty, the joy, the silver lining in every day. Focus on the good. Practice gratitude over every small gift that each day brings and let that feeling fill your sails like a gust of wind until the next one comes.
Life is going to be full of waves and high waters, specially if you’re ill, it affects every aspect of your life: physical ability, relationships, finances, confidence, faith, mental health, your independence, etc.
However, you can focus on the waves and let fear, anger, anxiety and panic set in, or you can focus on the fluffy clouds above, the blue sky, the sunshine, the fresh air, and be grateful for the shelter and protection you have and for every gust of wind that fills your sails, even just a little, pushing you forward and closer to your next port.