May is M.E Awareness Month, & as well as raising awareness at work, there’ll be plenty to look forward to here too!
There won’t be a blog post this Sunday- because from 6th to 12th May I will be releasing a blog post every single day! Make sure to stick around for teenage awkwardness overload.
Despite the recent surge of developments in medical research surrounding the condition, the internet is rife with a myriad of pseudo-scientific theories from non-medical experts describing what causes the condition, how it can be prevented, and how it can be cured. These theories are often demeaning to sufferers of M.E (a.k.a. CFS), claiming that we simply don’t look after our bodies or that it is nothing but a cry for attention. They also tend to support the claim that M.E is not a real disease, reinforcing the negative stigma surrounding what I can assure you is a very real illness.
There is, however, one redeeming feature of these theories; they can be down-right hilarious.
One I hear a lot from people who know that I have a first class honours degree in nutrition is that my illness is the result of multiple nutrient deficiencies, and could be cured by using over-the-counter nutrient supplements. Considering my knowledge of the subject, my ability to tailor my diet to my needs, and to recognise the symptoms of nutrient deficiencies in myself and others, this theory denies all logic. Similarly, if I needed nutrient supplements, the doctor would prescribe them. The only noticeable effects of the store-bought nutrient supplements in the absence of a deficiency is the excess nutrients excreted (meaning the expense quite literally gets flushed down the toilet) and sometimes the onset of nutrient-overdose. Which can have quite serious and permanent effects, such as death.
This is far from the only ridiculous theory I hear. One commonly encountered by M.E sufferers across the world is the idea that we simply need to exercise more. Our “laziness” has led to us being so unfit that this becomes symptomatic. This of course does not apply to all the other unfit people on the planet who suffer no symptoms at all when resting, or walking to the bathroom. I have been told time and time again that my symptoms result from muscle wastage, despite the fact that while I do have much weaker muscle tone than average, you can still see some muscle definition across my whole body. I am told to push through the “pain barrier” but I can assure you that the pain barrier does not exist for M.E sufferers, and the pain simply gets worse the longer you remain active for.
I have also been told to get pregnant. The logic behind this one is as follows; after undergoing nine months of growing a miniature parasite inside your body, which takes a great deal of energy, and then squeezing the thing out like trying skinny jeans on while being in denial about your clothes size (we’ve all been there), the maternal instinct of holding the baby would override the tiredness signals from my brain. Now I don’t know about you but my personal encounters with new parents show a distinct trend of utter exhaustion from the lack of sleep and constant nappy changing, plus the energy requirements for mothers who choose to breastfeed are substantial. This is all without mentioning the fact that attempting to cure a disease is entirely the wrong reason to have a baby (I know a lot of women suffering from endometriosis hear the “just get pregnant” theory a lot too).
The most ridiculous theory of them all, however, is that I am possessed by a demon and need to be exorcised. I doubt this one needs to be explained and I have nothing more to say about this one other than “what the F is wrong with some people?”.
So please, medical research is a serious career path and these people know what they’re talking about. Listen to them!
Transcript:
Hi guys,
It’s the big day in M.E Awareness Week and, as promised, I am going to publish a video of me answering your questions about living with the disease. So without further ado; we have a question from Bre-Am (I apologise so badly if I’ve pronounced that wrong).
Bre-Am has asked me if I appreciate it when people offer me help or if they’re only doing it to show off to others.
I think if someone sees me struggling, I can’t open a door, I can’t reach something, or they just think I might need some help, and they come and ask, it’s always appreciated. Now, I might say to them “yes, actually, I would appreciate some help,” at this point, or I might say to them “no, thank you, I’m OK.”
It’s OK to say no, and it’s OK to want to be independent. If you ask someone disabled if they want help and they say no, that is OK. Just say “OK, no worries, I’m here if you need anything,” and walk away; there’s no shame in that.
Obviously asking for help I am never going to take offence to; someone’s trying to be nice, and if I say I want help and they do help, then that’s brilliant. The important thing is to always ask first.
Now, my personal experience is that I’ve not had many people do this to show off to others. Very occasionally you’ll get a charity representative in a middle of a shopping centre who might try and be seen to be inclusive with the disabled person, to be seen as a better charity representative.
Other than that, very few people do it to show off; the biggest problem is actually someone asking if I need help and continuing even after saying no, or just barging in without asking in the first place. It’s my personal space, it’s my equipment; the wheelchair is an extension of my body; do not push yourselves on me unless I ask for help.
But, you know, the offer is always appreciated.
And then we have a question from Sophie, who has been a friend for a long time after we met on forum for people with CFS. She has asked me how my experience of CFS compares to that of others.
I think there are some central aspects to this disease which, like every person with this disease on the planet, I have experienced. That is things like the fatigue, pain, headaches, dizziness, itchy eyes, and poor short term memory and concentration. I think also that the general disbelief in the condition that I have encountered is pretty universal.
But, my experience does differ in things like I went to a GP who believed in CFS and I was diagnosed within 12 months of becoming ill, and I got access to painkillers, physiotherapy, and counselling. That is really, really good; some doctors don’t believe in the condition and refuse to have anything to do with it and they won’t diagnose or treat it at all, and people end up going from GP to GP. So I was very lucky in that respect.
I think CFS varies in severity; some people are house bound or bed bound, and for them the wheelchair to go outside in would be useless. They don’t have the energy to even do that. For me, the powered wheelchair has enabled me to be independent, get an education, get a job, and live a relatively normal life, and again I’m very lucky in that respect.
And I think the other big thing that separates people with this illness is actually experiences with social services, and this particularly applies to children.
When I was a teenager someone anonymously reported my parents to social services, claiming that they were using me as a sort of disability benefit fraud, that they were forcing me to be in a wheelchair for the attention and financial support. Social services barely looked into it before dropping the case; they said it was ridiculous, but that mark is still against my parents name and they’ve never been allowed to defend themselves. That is still quite a sore point for us because on their record there is a complaint against my parents that will always be there, however wrong and invalid that complaint is.
Some people never experience that, and they never experience how devastating and how heart-breaking that is; to be the child in that situation, to be the one who is getting their parents into trouble for being sick. It’s awful.
But, again, I’m quite lucky. There are people who get separated from their families and put into institutions, and other cases that go to court; these are not rare, I know people who have been through this.
If you see the Millions Missing movement on social media, particularly Twitter, that’s what it’s all about. It’s talking about the people who get removed from their families because people don’t believe in their illness and think that their parents are psychologically abusing them. So there’s a big movement at the minute to get CFS recognised as an actual illness, and to stop social services marching in and pulling families apart, which only tends to make the illness worse, and it’s sheer madness.
Now that’s it for all the questions I’ve had about living with CFS, and I’m going to take it that my blog is so good and so well-explained, that no one has any more questions about the disease. I hope these answers have been good, but if you have any more questions feel free to ask; I’m happy to message or make another video.
So, please, please, please keep a lookout for tomorrow’s blog post, which is all about the ridiculous theories people have about M.E, what causes it, and how to treat it. It is hilarious.
Also, don’t forget, do donate. 25% of this week’s donations are going to the M.E Association, so not only do you support my writing career, but also a charity who support people like me.
So please, please, please; donate, like, subscribe.
You’ve seen the first blog post of M.E Awareness Week yesterday, about how bad M.E can get. You’ll get to see a more humourous blog post next Sunday, all about the ridiculous theories I have encountered concerning the cause and treatment of M.E.
What else am I doing for M.E Awareness Week 2018?
That’s 25% of ALL donations, not just profit. I should also clarify that I will be donating 25% of the money donated BEFORE PayPal take their cut. If you donate £10, $2.50 goes to the M.E Assocation. Click on the donate tab in the menu to proceed!
Find out more about the M.E Association here: http://www.meassociation.org.uk/
You can send me your questions via social media, through social media private messaging services, or by going to the contact tab in the menu above. I am willing to answer anything about living with M.E, so submit your questions! The video will be posted on here on Saturday!
