Well, if you’re a beader, you probably do have a good imagination. So, I’m inviting you to exercise it here.
This is the third in my special blog series this month. In case you missed it, this November, I’m fundraising for a charity. The proceeds are going towards funding a clinical trial of a treatment for CFS/ME. So, I’m using my blog this month to explain what CFS/ME is and why it’s so vitally important that the trial goes ahead. I’m not sure if I’m doing a good enough job with this, but let me continue anyway!
Before I go ahead with today’s topic, let me say a HUGE thank you to the people who have donated so far. Their kindness and generosity is amazing and together they’ve raise over £400 towards my £1,000 target. So, we’re getting there!
The clinical trial needs £50,000 to go ahead. So, my contribution doesn’t seem like much. Which is why I am so, so grateful to everyone who is helping me to try and reach that £1,000 goal by the end of November 2017.
What you already know
In case you missed the first two posts, here is a brief recap. So, in this first post, I told you that slowly but surely, we are getting to understand a little about the illness. If you’re not sure what CFS/ME is or what the symptoms are, then check out the blog here to find out more.
In the second post I talked about treatments that are currently available (or not!). I was trying to explain why it is so incredibly important that this clinical trial can go ahead. At the moment, a lot of people are being left with a diagnosis, feeling terrible and desperate to feel better. So, they are facing a choice between doing nothing and trying treatments that they discover online, which may or may not be helpful. At best, they can simply waste money. At worst, perhaps they do further damage. So, if you haven’t already seen it, check out this post here.
So, those were the first two parts of my attempt to educate you, in the hope of getting some help for this cause. Perhaps they were rather dry and boring. After all, CFS/ME doesn’t affect you, so why should you care? (Although I did hope some people might be tempted by the chance of winning a special piece of beadwork…my cupcake!)
Do you have a good imagination?
So, today I’m inviting you to see whether or not you have a good imagination. I want to try and describe some of what it ‘feels’ like to have CFS/ME.
I’m inviting you to use that good imagination to try and put yourself in my shoes for a few minutes.
How are you feeling?
Let’s start by seeing if that good imagination of yours can create this picture.
Think back to the last time you had ‘flu. Or, maybe if you’ve never had ‘flu, try the worst illness that you have experienced. Do you remember how all you wanted to do was curl up and sleep? You were probably experiencing some kind of physical pain or discomfort. Perhaps you were struggling to think clearly. You really didn’t want to get out of bed and you certainly didn’t feel up to going to work or doing what you normally do.
Now, try and remember a time when you weren’t well, but you could still carry on. Maybe you had a cold and you felt pretty rough. But you dosed up on paracetamol to give you a bit of a boost and you managed to carry on with your life, just feeling very ‘under par’.
Right, if you do have a really good imagination, then you’re probably feeling pretty rubbish right now. I apologise for that – it won’t last forever!…
…unless you have CFS/ME. In which case every single day of your life is spent somewhere between those two conditions (except that paracetamol don’t cut it with this illness, so you might be using anti-depressants to try and cope). The precise symptoms aren’t so relevant – you just feel really ill. How would that feel to you?
Do you have good friends?
So, now I’m going to invite you to think about your friends and family. How much sympathy and help do you get when you’re ill?
Are they the type that run around after you and give you lots of TLC? Or do they ‘jolly you along’ and push you to carry on regardless?
How do you view illness yourself? Are you the type to take to your bed at the first sign of a sniffle? Or do you push on through however bad you’re feeling?
Well, let’s try and put that good imagination to work again. Now, let me ask you to imagine you’re the type who pushes on through. What if, instead of getting better, you get worse? At what point do you finally decide to give in and rest? How do the people around you react?
What if you were feeling like this and a doctor told you that resting was the only way to recover – what would you do then?
Well, how about if nobody could tell you anything helpful? So, you tried a few experiments on your own to see what made you feel better. You discovered that you did improve with rest, but it took a long time. So, maybe for the first few days people help look after you. Then they all get a big fed up with that and start making comments. Perhaps they start to suggest you could do more if you just tried.
So, you begin to think they’re probably right. You try to live a ‘normal’ day and you end up feeling worse than ever. If you’re really following along with this, you’re probably feeling a bit confused by now. What should you be doing? Why are you not getting better? Who can help? When will this end?
Is this the solution?
What if a kind and knowledgeable doctor then began to explain how this all works. It’s a bit like having a cut on your knee. At first it bleeds and really hurts. Then it starts to scab over and only hurts if you knock it. If you leave it alone, it eventually heals and you would never know it had happened. However, if you pick the scab off, it will start to bleed again. If you keep picking the scab off before it has healed, you will end up with a permanent scar.
So, what if that doctor told you that by constantly trying to push through, you’re doing more damage. Yet, there is no bleeding, no scar, nothing that anyone can see. So, do you believe the doctor and follow their advice? How do you explain this to other people and get them to believe it too?
What if the doctor was wrong and there is no cure for this? How would that make you feel? Would you find a way to tailor your life to work around the constant symptoms? Or would you attempt to take your own life? (The suicide rate among people with CFS/ME is very high).
Friend or Foe?
What do you do about the ‘friends’ that make comments like, ‘I really think now might be a good time to get out there and start living again’?
In the first blog, I said that a lot of people become ill in their ‘twenties. So, maybe this was you. Maybe you were in a relationship and your partner got fed up with you. Or maybe you’re still trying to ‘date’. Do you tell your new date about the CFS/ME or do you lie every time you have to reschedule some plans? How will that person react either way?
How do you support yourself?
So, how are you getting along here? Do you still think you’ve got a good imagination? If you do, then right about now, you’re feeling physically ill, emotionally unsupported and mentally totally confused about what is going on.
On top of that, you realise you’ve had far too much time off work. Maybe your employer is trying to find a way to make you redundant. Maybe that’s already happened. So, that’s ok right? We have State benefits to help with things like that, don’t we?
Well, where do you fit in the benefits system? If CFS/ME is an imaginary illness, then you’re not going to be able to claim any kind of disability allowance, are you? Can you prove it’s a real illness and you need help? Even if you can, you’re going to be looking at months of filling out forms and attending medical assessments to prove you’re not lying. And IF you do get the help, you will be constantly assessed and constantly asked to ‘prove’ you’re still ill. Bear in mind you are looking healthy and you have no test results to prove your diagnosis. So, how stressful would that be?
Maybe you decide that’s not for you. So, should you be looking for a new job. How are you going to get to interviews feeling like this?
In the unlikely event that you do manage to find a new job, what happens when you need a lot of sick leave? What if the job contract requires a medical? What do you tell your employer?
All the time you’re dealing with these questions, you’re struggling to function on any level. How does that feel?
Have I inspired you yet?
Or rather, has your good imagination inspired you? Have I managed to make you feel a little bit of what I feel, just for the few minutes it took you to read this.
Does that make you want to help?
I know that much of what I have described here can be applied to a whole host of ‘invisible’ illnesses and also to any mental health condition. Now, I can’t make all of that better. Neither can you.
So, I was thinking. Do I sit here and think about these issues and argue to myself that they are problems that are so big that I can’t make a difference? Or, do I do something small and hope that I can persuade a few other people to also do something small? Then, if enough of us do that, we actually start to make a difference.
What would you do?
So, this is my ‘something small’. It just so happens that my experience is with CFS/ME. I also happen to have found a clinic offering a treatment that is helping me. If that treatment could become more widely available and more affordable, it could help more people too. It’s a long road, but this clinical trial is a little step along the way.
