Category Archives for "Spoonie Life"

posts about life with a chronic illness

MAIMES: Medical Abuse in ME Sufferers

As anybody with ME/CFS and their carers will know, many doctors and health care practitioners still treat ME as a psychological disorder, when in fact it has been proven to be physiological. Patients have been dismissed for decades, disbelieved, misunderstood and symptoms ignored.

The current treatment recommended for ME/CFS patients is CBT (Cognitive Behaviour Therapy, a type of psychologically based talk therapy) and GET (Graded Exercise Therapy, a controlled exercise program). This came about due to findings that came out of the PACE Trial which has been reviewed recently and found to be based on flawed principles. The whole trial was unscientific and skewed, not at all a sound basis for deciding how to treat ME/CFS.

Nonetheless, the PACE trial has formed the basis for the NICE (National Institute for Health and Care Excellence) guidelines which medical practitioners have been using for years as their basis for treating patients with ME/CFS.

The CBT and GET treatments both cause harm to patients. CBT can make some patients believe they’re causing the problem by erroneous thought patterns or not trying hard enough, while GET absolutely makes patients worse if they are forced to push beyond their limits.

The very nature of this illness is the intolerance to physical, mental and emotional exertion, these treatments only stress patients in those areas and do not at all address the underlying causes or physiological abnormalities in the patients’ bodies.

The abuse is not limited to patients, but even the few doctors that might try to help them in ways that have proven to actually improve the patient’s condition! The General Medical Council (GMC) has even targeted and prosecuted any doctors that try to use unconventional methods that are not in the NICE guidelines, the very guidelines which are based on the flawed PACE Trial.

MAIMES is a campaign to get as many Mps as possible to sign up to demand an inquiry into the continued abuse of ME/CFS patients over the years.Continue reading

ME/CFS Awareness, 15 Nov 2017

ME Awareness Hour

As you might know by now, I spend every Wednesday evening on Twitter, along with many other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening.

We tweet about what life is like with this life draining illness. We tweet and retweet for an hour, hoping to to make our hashtags trend on the front page of Twitter so we can get the most attention possible. I hope you will join us, even if you only retweet other people’s tweets, every bit helps!

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Life is like a twisting roller-coaster ride

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.

There is no normal or perfect apart from God, there is just life and it is filled with good and bad, daily. It’s a constant flow, like your laundry and dishes… You fix it once, but soon there will be more. It’s a part of life, why do people act shocked and surprised that they have to deal with it over and over again. Accept it, embrace it and experience the freedom it brings to no longer go through life in those chains of, worry, disappointment and resentment.

Life isn’t a flat line, it’s not linear, it’s a messy, twisting and turning rollercoaster ride. Some parts are fun, others are terrifying, sometimes you’re heading forward and then there’s a sharp turn and you feel like you’re going the wrong way and everything is upside down. But it’s all part of the ride, you’re still going towards the same general direction, it’s just not ever going to be a boring, predictable straight line.

Look at the stars

Focus your gaze on the good things each day brings. Focus on being grateful for all the small things people so often overlook.

The positive words, the beautiful view, the comfort and protection of your home, the smells, sounds and colours around you. The people God has brought into your life whether in person or online.

You are not alone in your struggles, but focusing on your struggles can make you feel very lonely. Take your eyes off yourself and your hurt, give yourself a break, focus on the good stuff. It’s not going to make the struggles go away, but it will certainly make your experience of life more enjoyable and rewarding.

Here’s a little exercise that really brought this point to life for me: If you hold your arm up and make a fist. Your fist represents you problems, you can see your problems, but you can also see the room (life) around it if you look around your fist.  But if you bring your fist right up in front of your nose, staring at it, so it is the only thing you’re focusing on, the rest of the room gets lost behind it as the closer it gets the bigger it seems. It’s not really got any bigger, it only seems like it because now it’s all you’re looking at, it’s what you’ve chosen to pull close and focus on.

Focus on good stuff

You might not have a choice when it comes to your circumstances, but you do have a choice when it comes to what you spend your time, energy and focus on within those circumstances. Try your best to focus on the good stuff!

ME/CFS Awareness, 8 Nov 2017

ME Awareness Hour

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

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Update: current ME/CFS flare is slowing me down

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. 

This is what I’ve been going through the past couple of weeks. I initially thought I had a flare from my histamine overload and coming out of ketosis, but I’ve been back on the wagon for over a month and I’m just not getting better, some days even much worse. 

I’ve learned to accept what is, though I still shake my head at the bizarre symptoms that pop up every day. 

This week the main and most prominent symptom, apart from the increased exhaustion and pain, is the heart racing. 

I’ve moved my Fitbit back onto my wrist as I’m going to stop focusing on my step count (which is affected by arm movements, hence moving it to my ankle previously), and I’ll start focusing on my heart rate instead.

It is well documented that people with ME/CFS can pace effectively by monitoring their heart rate and staying within their personal limits. Mine, it turns out, are the same as an 89 year old! (I’m really only 36)

And during this current flare, my heart rate is almost constantly in my fat burning zone (supposed to be for moderate activity) even while resting in bed. When I stand up, go to the loo or brush my teeth it shoots into cardio zone, sometimes just turning in bed or lifting my head off the pillow can have the same effect!

A couple of days ago it shot right into peak zone at 130 from simply brushing my teeth (way past my personal threshold of 92)!

I’d love to know how a healthy person’s heart rate responds to these simple activities. 
Needless to say, I’m not getting much done as every little thing pushes my HR up so high and I feel awful until it settles again.

The slowing down of my heart rate can take quite a while sometimes, and other times it comes to a super rapid screeching halt and feels awful in my chest!

I haven’t figured out patterns yet, but all I know for sure is it helps to take note and behave accordingly, since I started paying attention to HR, I have been able to avoid awful going-to-pass-out moments that I was having up to just a few days ago.

I also know that right now it would be unrealistic and even detrimental to continue aiming for 1000 steps a day. I just cannot manage it. I occasionally hit 800, but mostly I’m not even checking. 

This November is all about a shift in priorities and definitely a shift in pace. I have been so much more active this summer, and the weather could even be a factor, that it’s of course frustrating to feel like I’m going backwards again.

The important thing to remember is that I’m not going back to square one. I’m just changing difection and waiting for the next gust of wind to push me forward again. 

This is just a season and it will pass. My aim now is to pay close attention to my body, the signals and the reactions, so that I can adjust and adapt to this new normal as soon as possible so I don’t accidentally  cause more damage. 

Another sign I’m flaring quite badly is that it’s only 10 pm and I am falling asleep! My usual bed time is between midnight and 1am so this is super early for me. I was already dozing around eight, but I’m trying to keep to my regular schedule else I risk causing sleep disturbances or even insomnia. I don’t want to go back to that.

Routine and structure are important. My brain is switching off now, the fog is coming so I’ll end this here for now.

ME/CFS flares: what do they feel like and how to cope

ME/CFS Flare

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

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

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!

I know that in the lonely dark times, you feel like you’re alone in your struggle and you doubt you’ll pull through it sometimes, but you’re never alone! Your Heavenly Father is with you always, He has promised to never leave you or forsake you. Never. No matter what you/re going through, how dark it may seem, you’re never walking this road alone and all things are possible with Christ who gives you strength.

Just think about this: You’ve got through 100% of your worst days so far! That’s amazing!

You’ve got what it takes to get through whatever you’re going through. He doesn’t call the equipped, but equips the called. He will provide you with the strength and the courage and even the very breath that you need to get through each moment. Just keep your eyes on Him and believe.

You’re a warrior, a survivor!

believe in yourself

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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…

From personal experience, and what I’ve seen happen over and over again in my support groups, it’s better for you to not go out during a flare. It would only make you worse, it’s a lot of exertion and sensory stimulation. Plus there is the added stress that inevitably comes from them not really knowing what to do with us or how to help.

I’m not a doctor, and you will know your body better than anybody else, but if I’m just flaring, and if I think about it I could probably tell whether I’ve overdone things and am paying for that or not, then I do not need to go to the emergency room. They will just carry out unnecessary tests, stress my body and my mind and the bright lights and noise will just cause my symptoms to increase, not to mention the travelling there and back that will affect me for days or even weeks to come.

If I feel like I’m about to collapse from exhaustion, I’ve already overdone it and need to be in bed, not driving around town and trying to explain this very misunderstood illness to hospital staff who won’t be equipped to do anything for me. Most people in emergency services won’t have even heard of ME/CFS and it won’t show up in any of their tests unfortunately.Continue reading

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