This Is M.E 2o15

This Is M.E
This is my second M.E Awareness Week since being diagnosed back in August 2o13. Even though my fellow M.E Warriors & I will be spending the week raising money for various M.E Charities, raising awareness on Social Media or doing both this week.  Today, Tuesday 12th May 2015, is officially M.E Awareness Day!

As I did last year for my first year getting involved, I'm again taking part in the Blog Chain, though my main way to join in with M.E Awareness Week is going to be on Instagram, so if you want to give me a follow & get involved that would be great.

Ok so here we go, with my updated This Is M.E Questionnaire:
What is your name & how long have you had ME / CFS?

My name is Louise & I was diagnosed with M.E in August 2o13 by my GP & then had my official Specialist diagnosis in March 2o15. After becoming even more informed about what this illness entails, I realised I have felt the effects of it in its mildest form since I was a teenager.
Where do you live?

I'm in Lancashire, in the North West region of the UK.
Age

31 years old
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1) I can only wear gold earrings, my body doesn't like any other metal. 
2) I've only had two formal jobs since leaving school.
3) I don't like butter.
4) The smell of Bananas makes me feel ill.
5) I don't like Pizza. 
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1) I experience extreme exhaustion every single day.  Taking time out to rest does help but in no way completely takes away the exhaustion or makes me feel refreshed.
2) A daily task that a healthy person takes for granted like having a shower or even making a cup of tea, can some days leave me with very little energy to do anything else.
3) Even though I am exhausted everyday, there are nights when I struggle to sleep. This can be simply due to my body being unable to relax properly due to the pain & tingling I'm experiencing. This means I can't get comfortable enough to sleep.
4) Hyper-Sensitivity to Light, Sound, Touch & Smell are an issue. This means most days my curtains are kept closed. The TV is on a low volume or not on at all & my mobile is on constant vibrate.  I also have to do my best to avoid overly noisy places & people.  Being sensitive to touch means I do my best to avoid those that I know that are "huggers" or politely inform people not to touch me as doing so, will hurt me.  Heighten sensitivity to smell causes me to have nausea & headaches when I am around even strong food smells or people's fragrances. I do wear perfume myself but only a very light fragranced one & only when I'm on a goodish day & am going somewhere.
5) A big part of M.E is Post Excursion Malaise (P.E.M) which is the body's reaction to activity. P.E.M usually shows itself after pretty much every type of activity someone with M.E does, even something as 'small' as getting a shower. It shows itself mainly by extra extra feelings of exhaustion, brain fog & an increase in pain. There are other symptoms that flare or increase too. P.E.M is very variable & is dependent on how active the person has been, to how badly the flare can be. I see this symptom as the potential joy taker & regret maker side of this illness, making you feel like you shouldn't have done the activity you did or dared to even leave the house at all! This is why having a positive attitude toward having M.E is so important & not letting the P.E.M make you upset & regret what you achieved. That can be hard to do believe me but thinking back on the things you've managed to do despite having M.E is a great feeling & holding on to that really does help you through the P.E.M. 
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

Living with Moderate M.E, I have to plan out my weeks to ensure that I balance out my high energy activities with rest so I can actually do what I need to each week. That even means sacrificing some activities so the more important ones are possible. But even then, there's no guarantee being able to do all that is planned as some days I am simply at the mercy of my body thanks to the variability of the condition.  This is where very understanding friends & family come into play.  This illness can make you quite unreliable at times, through no fault of your own.  Having people who understand that & don't abandon you because you can never meet up is essential! Be understanding if plans have to be cancelled & as the healthy person, ask if your poorly friend is up to a short visit later in the day or week to make it easier for them to see you. M.E isn't an illness that makes people rally round & support you, like other illnesses. It's a very lonely illness to have at times & this makes dealing with it even tougher.  So if you know someone with M.E please I beg, don't abandon them to face this alone.  Just take a moment to think about how you would feel on top of being told you have a chronic illness & can no longer do the things you loved, you are abandoned by the people you thought would always be there for you!

What is the most frustrating aspect for you of living with ME / CFS?
Not being as independent as I want or use to be.  Relying on people to do things for me, either making me a cup of tea when I can't manage the stairs or having to run errands for me because driving myself, doing the errand & then driving home, is simply too much for my body to cope with most days.
Anything else you’d like to say before finishing?
I just want to say a huge thank you & love you to the wonderful Spoonie community. Without their love, support, mutual understanding & the celebrating of the small victories achieved, I don't know where I'd be. They are a positive force & do so much good despite what they have to deal with!
Also a massive thank you to my mum, I don't even what to think about where I would be without you.  I know how hard it is to watch me struggle on my bad days but you help me through them every time & help me realise how much I can do despite this illness.
Lastly but not least, thank you to my best friend & partner in crime, knowing I have your support & someone to tell all I'm going through with this illness & that you're not going to abandon me is a blessing & I'm so very grateful.
Contact details
Here's a couple places to find me if you wish:

Twitter: @losheps
Instagram: @losheps

Thank you so much for taking the time to read this.  I hope it's helped you gain a bit more understanding of ME/CFS. If you've any questions, then please contact me, either on twitter, Instagram or feel free to leave me a comment below & I'll be happy to help.

Take care all of you & I hope your M.E Awareness Day is a good one!

Don't Forget To Wear Something Blue!

L xxx