BEWAREÂ All burglars that take the time to read my blog and have magically figured out where I live by the power of their minds…….!
My mum has requested that I inform you she is here pooch sitting so breaking in is not a good idea, she will not be impressed 😛
Bless!
I just wanted to let you lovely lot know that I am off off and away for two weeks and haven’t abandoned my blog! (hence no smiley round up yesterday – I was busy bossing hubby around with the packing!!)
I am really hoping that this break will refresh me after such a rough ride of late and that I will come back revitalised and feeling amazing!!
I hope that you all keep as well as possible, keep smiling and find the strength that you need to fight through your daily battles.
Much loveÂ
x
I wanted to write a really meaningful post today to embrace the final day of M.E awareness week but it just didn’t happen!
I started my day with a fall – a good old, Bridget Jones style, crash bang wallop of a fall, resulting in some attractive cuts, bruises and lumps just in time for my holiday! Needless to say  I haven’t felt all that fabulous for the remainder of the day and writing a post was the farthest (or should that be furthest?!) thing from my mind!
I am not even too sure what and why I am posting now, my brain is all in tangles and I am really quite out of sorts. I just can’t let today pass without saying something!
I have already posted lots of facts and figures both here and on my facebook page so I think I will post a little personal insight….
It hurts. All day, every day, every minute….something hurts. My muscles and skin burn, I have constant headaches, I can’t eat or drink without feeling sick, I wake up every day as if I have not had a moments rest. My memory is shot to pieces, my concentration levels are ridiculously inept and trying to learn new things, for me, is like trying to climb Mount Everest! I have no temperature control in my body – hot one minute freezing the next. I can lose the use of my legs without a moments notice. My body punishes me for doing anything and it punishes me good!Â
And… well I lose my train of thought! Like now. I know there is more I wanted to write but I can’t, it is gone! Argh I find it so frustrating, so annoying!
I guess the point is – all of this goes on and yet there are times when you could look at me and have absolutely no idea I was sick in any way. I just ask that you not judge anyone with these kinds of illnesses. There are so many stigmas, so much disbelief and so little evidence. They are still there regardless. They still cause so much disruption to the lives of those of us that suffer and those that love us. People still die from M.E. So you may not know much about it, you may not understand it and you may not see it but please support those that you know have it. They need you.
x
It isn’t. I agree with that whole heartedly.
However….
What I do not agree with is how this debate seems to get handled sometimes. I have noticed that through various social media and the media in general this topic seems to be raising it’s head more and more and whilst that is a great thing, I don’t like what I read sometimes.
I’ll get back to that but first let me tell you the little that I know..! In a nutshell, M.E is a neurological condition with a different onset and different symptoms to Chronic Fatigue Syndrome. M.E can be fatal, CFS cannot. The problem is that, over the years, the two illnesses have been ‘lumped’ together by the medical profession, charity groups and other sources. This has led to misdiagnosed and miseducated patients. There are tests that can be done for M.E but the problem we have is that our doctors don’t do them as a rule and so a solid M.E diagnoses is never reached for the majority of patients. All of which is very confusing.
Take my experience for example. I got really poorly really quickly with a virus that then left me in a state of reduced function (an M.E thing). When seeing my doctor about it there was the ‘have you been ill for six months or more’ question (a CFS thing) to which the answer was a kind of yes (I had always been a sickly girl since a bad case of glandular fever at 16) but not ill like this no! Some of my symptoms were /are; Debilitating fatigue (more a CFS than M.E thing), Cognitive dysfunctions such as memory lapses and sleep disorders (an M.E thing), Poor blood circulation causing cold extremities and unstable body temperatures (an M.E thing), Muscle ‘twitches’, pains and weakness (an M.E thing) and so the list goes on, I could type up my symptoms ’til Christmas! The point is that it is not straight forward and without the medical profession embracing the correct tests I can see where all this confusion is coming from.
So, let’s get back to my little bug bear…! What I don’t like to see is the way people are talking to each other on this topic. M.E patients get very “Oi CFS sufferers get off our M.E territory” and those with CFS get all defensive and “Oi M.E sufferers don’t you say we are not ill” and so on and so forth. I find it really distressing actually. I have no qualms what so ever with everyone getting on at the organisations that have misrepresented these illnesses, there needs to be a change so that the right treatments can get to the right people BUT what we all need to bear in mind is that each and every person, regardless of their diagnoses, is ill. They are suffering and need our love and support. So what if they put up posts that say ME/CFS , I know it is a misrepresentation but right now, at this moment in time, that is the material that is available. I know some of you will say “well that will just continue to add to the confusion” but in the grand scheme of things a few blog posts and pictures are not going to sway the ‘bodies’ that are responsible for changing this. What they do do however is help those that are ill and suffering communicate what they are going through and I don’t see that as a bad thing.
The whole ME, CFS battle is one that has and will rage on for a long time. Of course I hope to see things change but what I also hope to see is us being tolerant of one another along the way.
This website is a fantastic place to gain a much more in depth understanding of it all:Â http://www.hfme.org/
(Now I just have to have the guts to press publish…..! I am not good at ‘controversial’!)
I tried my hand at blogging before and didn’t get very far with it! I don’t know if it was my state of mind at the time, the platform I was using or a mixture of both, I guess it’s not that important really, I’m just waffling! The reason I bring it up is that I am going to recycle a post that I did there as I feel it is more than appropriate for this weeks awareness campaign – enjoy 😉
Whilst having another go at wracking my brains last night I did come up with something short and simple. So I thought I would share it, after all something is always better than nothing!
Imagine, if you will, a poster. Not a small, tired, dog eared poster fighting for a bit of space on an over crowded notice board but a big bright shiny loud poster plastering every wall you can see. At the top of the poster is the man from the old army posters pointing straight at you and this is what is written….
Are you close to someone with a chronic condition?
If the answer is yes then can you honestly answer yes to the following:
Do you understand their condition, have you read what they have given you and done your own research?
Do you know who they see about it, when they last saw them and what happened?
Do you know what treatment and medication they have and why?
Do you know what their prognosis is?
Do you know how it is affecting them on a day to day basis?
Do you know how they are feeling right now?
Don’t just care, Be Aware!
The biggest support you can give to somebody is to understand, as best as you can, what they are going through. Many people will wait to be told things but you need to remember that the person is ill, they will do their best to keep you informed but, what is a simple task for you can be daunting for them, even picking up the phone.
Also an informed understanding will help you see how the person you are close to is functioning and why. You will want to give help and advice to those close to you but do you know enough about their condition to be sure that the advice you are giving is practical and won’t put undue stress and upset onto the person to whom you are giving it? Such things may seem trivial to you but can have such a huge impact on the person living with their illness.
So always keep in your mind the ‘poster’ and don’t just care, be aware!
 (poster designed by Fibrography http://www.fibrolife-thrualens.com/)
x
This week is M.E and Fibromyalgia awareness week (6th – 12th May) and although I always aim to raise awareness of these illnesses I will make an extra huge concerted effort over the next few days because any opportunity is a good opportunity when it comes to raising awareness!
So lets start with some facts:
Fibromyalgia
Fibro means fibrous tissues myalgia meaning muscle and connective tissue pain
M.E : Myalgic encephalomyelitis
Myalgic means ‘Muscle Pain’. Encephalomyelitis means ‘inflammation of the brain and spinal cord’.
Also known as Myalgic Encephalopathy
Encephalopathy means ‘Altered brain function’
These conditions, along with many others, are classed as invisible illnesses because when you look at someone with these conditions you won’t always know that they are ill.
M.E Symptoms: (This list is by no means exhaustive nor do all symptoms listed apply to every sufferer. There is a huge cross over of symptoms that apply to both M.E and Fibromyalgia)
It is by no means a pretty list and living life with symptoms such as these is hard. Things have to change. In my case, I had to stop working and everything I do get to do comes at a heavy price. Going anywhere or doing anything takes careful planning, lots of pre rest and even more post rest to get over it no matter how small the event.Â
Imagine running a marathon with a bad case of the flu and an almighty hangover to boot. That is what my base level feels like before I do anything.Â
However, the biggest pain of all is the disbelief. I am lucky, the majority of those in my life know and fully understand what I have and how it affects me. However, there are so very many people that just don’t get it, or don’t want to, even people in the medical profession and people that should know better. Â They are still stubbornly stuck in the ‘it’s just yuppie flu’ stigma and are blind to the facts. These illnesses are wrecking people’s lives, some people have even died.Â
Just because these illnesses are practically invisible doesn’t mean they are not there, that people are not suffering. We are.
There needs to be more awareness, we need to get this out there and get some recognition. We need funding and research so that the future generations will find it unbelievable that so many of us went untreated and disbelieved.
I have completely lost track of what day is where this week so it really is of no great surprise that the usual Sunday round up is being written on Monday….oops!
This week in smiles:
I hope you have been able to find reasons to smile no matter what else has been going on 😉
x
Having had a hell of a month in April health wise I am feeling pretty ropey. Two chest infections and the pleurisy seem to have really taken their toll on me and although they have gone, I am feeling like I’ve been run over by several heavy vehicles!
I know that I am bound to take some time to get over it but I can’t help worrying that it has made my M.E worse. This kind of thing can be what kick starts M.E Â in the first place, could it have made mine worse or am I just being utterly over dramatic?!
I have always fought as hard as I can but lately it is like a part of me has flown the white flag and surrendered to those gremlins. Things that I could fight through before I simply can’t now, and it is not through lack of trying. I have tried to use the power of my mind to force me through things but it has been a no go (proof that I am sadly not a Jedi!). Take the other day for example. A shower led to two days in bed…. two days, and there was not a darn thing I could do about it, my body would quite simply not work. I have hardly been able to eat and the normal pain, headaches and nausea are ramped up to a new hyper power.Â
I just feel like things are spiralling out of control a bit. Not that things are particularly in control normally but more out of control than the normal chaos.
I really hope that this is just a blip, an April aftermath, and that I will find things improving because I just can’t bear the thought of the gremlins getting a stronger hold of me.
You did it! 30 posts in 30 days. Which was your favorite prompt? Which was the most difficult? Which ideas will you reuse? Who was your favourite fellow blogger?
April has been mad! Bonkers, crazy, far too fast….mad!
I cannot believe it is May and the writers challenge is over…..it’s just…well….it’s mad!!
It is so hard to pick a favourite prompt as I enjoyed nearly all of them. Looking back over the last months posts there are many days that I enjoyed but if someone was to pin me down and force me to choose a favourite then I guess I would say the third person post. I love writing fiction and being able to write about myself ,but not in a first person way, enabled me to use my fiction writing skills! (well…I say skills, maybe it was rubbish?!)
The most difficult was, without a doubt, the miracle cure prompt. I can’t really begin to imagine what, how or by whom a cure would be and, although I gave it my best shot, it was wishy washy at best. I think many people found it quite emotionally draining as it just served as a reminder that there is no such thing and it would indeed be a miracle if a cure became available.
I will probably reuse a few of the prompts. The third person, open a book and six sentence story to name a few. It will be great to have something to use on those ‘my brain can’t think of anything’ days!
There is just no way I can single out a favourite fellow blogger. I have found so many peoples posts interesting, heart warming and funny and each and every blogger has taught me something I didn’t know or given me something to think about. However, I can (and will) say that I love love love Jules at What the Jules. She is a friend of mine from Twitter and she is just pure loveliness.
Finally I just want to thank WEGO health for this challenge. It has been amazing and it has encouraged me to get off my butt and put some real effort into writing my blog, raising awareness as I go and taking time to learn from others.
So… I guess it’s goodbye writers challenge, you will be missed!
x
Once upon a time... 