Category Archives for "Spoonie Life"

posts about life with a chronic illness

ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour

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

Do you feel like giving up?

Giving up?

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

Believe in yourself

Believe in yourself header

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!

2 Timothy Spirit of Power and love

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

Why I don’t go to A&E when my ME/CFS flares

waiting in the ER

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

Are you struggling to adjust after an ME/CFS or PVFS diagnosis?

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

Reflections: the wind in my sails

wind in my sails

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.

Update on my itching and ME/CFS flare

Low spoon warning

It’s been a while since I wrote a personal update. I have recently been extremely drained and weak, so haven’t been very social or active online. My primary focus this month was on my itching. I wanted to try to get it under control as it was really getting me down, much more than my ME/CFS does. I was in tears and so very frustrated. The scratching was utterly exhausting and to top it off, I caused myself a massive ME/CFS flare too!Continue reading

Natural Health Worldwide: an innovative patient-centred portal

natural health worldwide

Natural Health Worldwide (NHW) is a new website that launched on 1 June, this year. It is a portal which connects patients from all round the World with NHW health practitioners. These practitioners, also from all round the World, can be Medical Doctors, other qualified Health Professionals or Experienced Patients.

Each practitioner has an individual webpage where they can describe their qualifications, their experience and what they specialise in. Patients can search the site by type of practitioner and or illness/problem.

Appointments are booked through the website and can be conducted by Skype, Facetime, ‘phone or email. This makes the process very convenient and also caters to a forgotten patient population – the housebound and bedridden.Continue reading

MSM for Chronic Pain Relief

MSM for chronic pain relief

I’ve had quite a few people ask what I’m using for pain management. One of my favourite things since falling ill is MSM. It is my one staple since I first heard about it and it’s potential to help the body heal from all sorts of things.

It is sometimes referred to as the “miracle supplement” and also the “beauty mineral” because it is so beneficial in so many areas. One of the reasons for this is that MSM makes our cell walls more permeable, meaning that toxins can be more easily removed and nutrients can more easily be absorbed.Continue reading

How I’m tackling this ME/CFS flare

It’s almost noon and I’m still in bed. I just Sat up actually when my sis brought me a nice big mug of decaf with coconut oil and quercetin in. Part of my morning routine now, though I’m starting to wonder whether coffee is one of my histamine triggers, despite being decaf. I might stick to golden tumeric milk instead.

The heavy ME/CFS passenger

I had been doing so well for so long that I had almost forgotten how bad these flares can get. It can be discouraging when you are reminded so unexpectedly of the horrible passenger you carry with you always.

This ME/CFS might be managed or worked around for a time, but it does come back to show itself from time to time, makes sure you remember it’s still there and just how strong it is.Continue reading