Tuesday, 29 September 2015

Take a step back

As M.E. sufferers we get beyond frustrated by the remarks of those who don't understand. We hear people say "well at least you don't have x y or z"

But take a step back. If you didn't have M.E. and had absolutely no experience of it, what would you say? Honestly!

The majority of people respond in a way that shows how we all tend to search for a positive in a terrible situation. There might not be an obvious one but we try to find something that might offer some comfort.

Granted not everyone we come across who comments on our situation means well. But I believe that the majority probably do. 

It is not their fault that the stigma still exists. It is not the fault of medical professionals that they were taught either nothing about our condition, or to be incredibly wary of those hypochondriacs with their 'psychosomatic illness'. Yes we've pretty much all come across at least one GP who ruined not only our day with their remarks but also our confidence in the system. And that is so wrong it can't even find the words to describe it. But we must remember that they are General Practitioners. General. They must know a little about a lot. It's just a shame that the little they know about M.E. is either non-existent or scarily inaccurate. 

But...lets again focus on the majority. People get uncomfortable when the answer to their question of what do you do for a living is "Well actually I've been a little under the whether and unable to work for the past 5 years." The response is nearly always something along the lines of "Oh I'm sorry. Still, nice to get to stay at home all day." 

If you weren't a sufferer what would you honestly say?! I like to think I'd respond 'better' but it would be completely natural and not wrong at all to respond in the way that so many do.

Yes it is damaging and frustrating. But if the only experience the majority of people have of M.E. is what they read through the propaganda infused media then can you blame them? That right there is one of the reasons is started this blog. How could I ever expect anyone to understand or know the truth if I wasn't telling them...

Thursday, 10 September 2015

Another year bites the dust

Five years. Five years?! 

That's 1827 days of illness with not one day off. 

There isn't much else to say today. So I shall stuff my face with my I've-survived-5-whole-years-of-having-M.E cake!!!! With candles. Naturally. You have to milk it for all it's worth my friends. 

Wednesday, 9 September 2015

Text Club - The Beginnings

Over the five years of being a sufferer of chronic illness, I have found that it is incredibly easy to feel isolated and alone. There are so few people who genuinely seem to grasp and understand what the chronic illness sufferer is going through.

The ‘Get Well Soon’ messages soon stop because it becomes apparent that chronic illness is not something that one can recover from in the way you’d expect to be back on your feet within a few days or weeks of suffering with the flu or a stomach bug.

Text Club was an idea that came from a blog post I wrote called ‘Where Are You?!’ which highlighted how friendships struggle to last between those suffering and those struggling to grasp the reality of the sufferer’s situation. There are so many chronic illness sufferers out there that perhaps we could join together and become each other’s support system. Social media has been wonderful in this way. I have ‘met’ so many wonderful people in the same position as me who understand that when I say I am ‘okay’ it doesn’t mean what it means to a healthy person.

Why texting?

While social media is wonderful, there are times when we sufferers are too ill to get the laptop out and log onto Facebook or Twitter or check our emails. This is why I have chosen texting. It just seems easier and more personal somehow, and that is what I am aiming for. I may not always be ‘up to’ checking my emails and replying to them, but I do tend to have my mobile phone by my bed all of the time to read any text messages that come through.

I am not currently in a position to open and run a chat room. This has been suggested to me a few times now. Again it feels like more energy is required to open a web page, sign in with an email address, and then remember a password. For many of us too, looking at a screen for an extended period of time can exacerbate our symptoms.

My aim is to have us sending the odd text message to each other. Hopefully friendships will develop and the walls of isolation will begin to crumble. A daily joke or sharing something that was good about our days seems ideal, rather than focusing on the negatives all of the time.

WhatsApp messaging service

As there has been interest in Text Club on an international scale(!!!) a messaging service seems the best way forward to avoid steep mobile phone bills. WhatsApp can be found in your app store if you have a smartphone. 

It is my understanding though that you need an internet connection to use it. The app can be found in your app store and is free to download for the first year. After this I believe it is less than £1 to keep them app on your phone.

If you are in the UK and do not wish to download the WhatsApp app then please do not worry. You can still be apart of the club ;-) It's really just so that our friends across the pond can join in and not cost us all a small fortune!

Group Messaging

I will add each new member, with their permission, to a WhatsApp group named Text Club - Introductions. Alas, it is not my intention for members to be bombarded with messages and notifications. The Text Club group will therefore only be used for members to introduce themselves and then to save the numbers of the other members in the group.

If you would like to start up another group message for daily chats then I am more than happy to do this, but , like me, you might struggle to follow a conversation with more than one or two people at a time.  

Rules and Disclaimer

  • There is never any obligation to reply to a message.
  • You can opt out at any time and your number will be deleted.
  • Your number will be shared with the other members of Text Club, with your permission. With your permission, you will be added to the Text Club - Introductions group on WhatsApp where other members will be able to see your number and contact you. If you would be happier with only me (Anna) having your number then that is fine. Please specify whether you want to share your number with the other members or not.
  • Please do not share anyone’s mobile number with anyone else outside of Text Club. The only place to share numbers will be in the Text Club - Introductions group on WhatsApp.
  • There is no fee to join Text Club but you will have to pay your mobile phone provider for any messages you send that are not included in your monthly allowance. Please check your allowance. M.E. myself and I cannot cover the cost of this for you.
  • We are all entering into this in good faith. Should you share any personal details with other members you do so at your own will.

It's all a bit trial and error I'm afraid but I hope that receiving a message will give people at least one thing to smile about each day.

Tuesday, 8 September 2015

Text club

As mentioned some time ago in my Where Are You?! blog post, I thought it might be nice to have some kind of Text Club for anyone who'd like to receive a message every other day or so.

Chronic illness can be incredibly isolating, and when you suffer with an invisible illness I believe you do not always receive the support you'd expect or get if you suffered from other illnesses. 

My aim for the Text Club is to share a daily joke or something that has made you smile or something similar, and to not focus on our symptoms or our restrictions.

If you're interested in becoming a part of the Text Club, please get in touch via the Contact form on the right hand side of this page. 

It will obviously mean sharing your mobile telephone number at some point, but I am currently thinking of the safest way to approach this.

I look forward to hearing from you.