ME/cfs research ✋HELP NEEDED ✋ QUESTIONNAIRE PARTICIPANTS WANTED☺️

Okay, so when suffering with this illness you’re pretty limited to what you can do and now it’s summer it really sucks! Due to this I decided to start a project looking into the illness and the explanations and approaches!! I’ve got quite far with this, but I need the opinions of some fellow suffers so please if you’re reading this and suffer with ME take a moment to fill in the questionnaire linked below! After all a little bit of awareness is better than none right ?

https://docs.google.com/forms/d/1EsrwsiADBTzb6AzFSs1z4xr96dilYvg3HQijes4V9gA/viewform

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Introduction

FATIGUE DOCTOR (THE LIFE OF A PHYSICIAN WITH CFS)

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Welcome my dear friends to my very first blog post dedicated to fatigue, and in particular chronic fatigue syndrome, fibromyalgia and numerous others conditions that all result in often incapacitating feelings of lack of energy. What makes this a little different is that I’m a fully qualified doctor. And I am a sufferer. One that has experienced and still do fatigue and pain for close to 10 years. I am on your side and know howyou or your loved ones feel. I know the stigma, the suspicious looks from your physicians, the endless barrage of doctors in hoping that one will finally be capable of making a diagnosis or cure.

In this blog, I’ll take you through my own experiences behind the lines with these conditions which are often derided by my medical colleagues. I will discuss my own experiences in dealing with these conditions and having met experts in…

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~ dealing with the everyday issues and chronic fatigue ~

‘Just because I look fine, it doesn’t mean i’m okay’

 

      Probably one of the most common problems with ME is that its not always noticeable on the outside, for example you could look like you’re okay but on the inside you’re completely falling apart. This part of the illness make it especially hard as people then lack belief in you and the struggles you are feeling. Obviously people can not just simply understand this because they can’t feel it, so for me on these days I ensure that i have some sort of contact with fellow suffers, and usually this comes from an online source. The comfort of knowing you’re not the only one led up in bed, in pain, not being able to move as others around you go on with day to day events is somewhat nice – if anything it makes me fell less like a waste of space. 

    The other thing that really bugs me is the comments you receive from others such as; “just sleep” “get some rest” and “everyone gets tired”. I just find them the most demoralizing thing, because they really have no clue, they don’t know how it feels to have a full nights sleep and wake feeling totally unsatisfied knowing there is nothing you can do. The thing is, there isn’t much we can do about these ignorant people except ignore them, and i am sure fellow sufferers know that ignoring things does not come easy when you have nothing to do but lie and rest and think. The only solution is raising awareness and making them realize what life with ME is really like but that is something that we are struggling to do, but must not stop. On the basis of this, I aim to do some form of charity event, although my options are limited! Please keep reading to see this aim develop! 

Happy Blogging 🙂 

 

Chronic illness and loneliness

I’m alone, literally and metaphorically. I sometimes wonder if this is because of ME or whether I am just a lonely person, then I think get a grip, I did have a life and did go out etc. The thought of the life I had, can sometimes be the biggest goal for me but can also be my biggest downfall..
See it’s like there is this great way of living and I had it once before but due to illness it’s gone, and the fact an illness took it from me makes me want to get it back. I’m desperate for my old life. although it’s not always like this, especially when I’m having a bad day, my ‘old life’ shall we say reminds me what I now can’t do and what all my friends are still doing setting me into a pretty depressive state. It’s okay tho because they day later my attitude will change completely, it’s totally inconsistent but that’s a whole new issue in itself !

~ Happy blogging ~

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Here we go!

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Okay, so i am totally new to the whole blogging thing, so please excuse any mistakes or errors !
I suffer from ME (hence the picture) and like many of us, have a few good days among the bad ones. Throughout my many lonely bad days, i have found support online through ‘social media friends’ who are in the same boat. There is a strange amount of comfort that comes from knowing you’re not alone and others feel the same as you. When you scroll down your twitter feed and instead of seeing tweets about what every ‘healthy’ person is doing, you see tweets from people in the same situation as you and being able to have conversations with them lightens the day. Well.. it does for me.
So among my bundles of thinking, i decided that i would start a blog, most likely it won’t be great, i’m no A grade english student, but its going to be real and true and that is the main thing i’m aiming for. Even if others out there don’t want to read it and don’t find it useful, i think at least it will help me express my feelings and anger from the illness.
if you have got this far, thank you 🙂