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This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain

09 May 14
Megan
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This blog chain (This is M.E.) was set up by Louise from Get Up and Go Guru. Check out her original post here.

This Is M.E

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.

I also suffer from Fibromyalgia and Pelvic Congestion Syndrome.

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have joined in with the This is M.E. made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! :-)

What is your name & how long have you had ME / CFS?

I’m Megan and I’ve had CFS/ME and Fibromyalgia for 13 months at differing levels of severity.

Where do you live? (Country, State, City – however detailed you want)

I live in South Australia, Australia. I’ve lived here my whole life.

Age (if you’re willing to share)

28

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

1. I meditate at least once a day as part of my daily rest times. This has helped me come to terms with where I am and keeps me focused and relaxed.
2. I have watched all the M.A.S.H., QI, and Grand Designs (both UK and Australia) episodes that we have at home at least twice. Most afternoons are spent crashed on the couch with the tv on for company.
3. Although I’m not working at the moment I don’t get bored. My days are full of writing for this blog, drawing for the Foggy Frog and the Pain Gang picture book, meditating, exercising or attending appointments (doctors, physio, exercise physiologist, accupuncture and naturopath). I’d love to have some extra time to do more research into my conditions so I can better advocate for my health, but at the moment I’m using all my available energy.
4. My life is good. Even with the physical pain and complete and utter exhaustion I face every day, I’m happy and have found ways to fill my life and feel like I’m making a contribution.
5. I miss being able to catch up with my friends, but really appreciate the few close friends who visit or contact me regularly. A message or phone call every now and then is enough to make me feel happy and know that you still care.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1. No matter how healthy I look, the constant pain and fatigue I face means I’m very limited in what I can do without causing an increase in symptoms.
2. I don’t cope with large groups or activities that involve bright lights and loud noises. Within 5 minutes of being in these situations (including watching tv) my brain fog increases. Within 15 minutes my pain increases. This is why I often seem to not be paying attention or joining in the conversation. It’s also why I may decline or leave early. I’m not trying to be rude or avoid you.
3. With most activities I can only do 15 to 30 minutes before I need a break. I have regular 20-30 minute rests in the morning and a 1 hour or more sleep/rest mid-afternoon. If I don’t do this the pain and fatigue becomes unbearable. Usually after 3pm I’m completely out of it and I’m not the best company.
4. I have a disabled parking permit. Without this I would be struggling to go to my appointments and library or shopping outings. My husband does most of the shopping trips without me because they are just too much for me.
5. Even though I have these conditions and I’m in constant pain and exhaustion I still want to participate in all the activities I used to. Unfortunately I’m learning that this isn’t possible. I need to really consider what the possible side effects are before agreeing to an activity. 

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

This is a real condition with physical symptoms. It is hard to get a diagnosis and many doctors don’t even believe it is real. Several of the doctors I have seen have suggested that it is a form of depression. I accept that depression is also a real condition but I know for a fact I’m not depressed (psychologist has also agreed that), so please stop suggesting it! Treating ME/CFS as a psychological condition does not allow for treatment of some of the most prominent symptoms. Yes a lot of what is causing this illness is all in my head, but it is not all in my mind. Increasing exercise does not help and can actually be harmful for people with ME/CFS. We have to pace ourselves and live within our limits.

What is the most frustrating aspect for you of living with ME / CFS?

Not knowing if I will ever be healthy again and the impact of that on our life choices. As many of you know I’ve always wanted to be a mother. I still don’t know how any of these conditions react during pregnancy or beyond. I’ve read stories of people getting better with pregnancy and others where the pain and fatigue got worse. My husband wants me to be healthy before we even try for children but I’m scared I will never be 100% again and that this will mean we’ll never try to concieve. Even if I could convince him to try before I was 100%, I know that the pain from the Pelvic Congestion Syndrome will definitely increase and probably the pain from Fibromyalgia as well. I could be lucky and have remission from the ME/CFS during pregnancy but I can’t plan on it.

Anything else you’d like to say before finishing?

ME/CFS and Fibromyalgia have no known cures. Doctors don’t know what causes these conditions and some still argue that both of these aren’t real illnesses. As I said before, these conditions are real and real people are living with the impacts of them every day. We are not drug seekers (If it were up to me I wouldn’t take any at all, but I can’t do anything without them), we are in pain all the time. It can be hard to explain the symptoms because they are so varied and so different to what a normal person feels. I hope that by raising awareness we can help both the medical and the general community understand what these illnesses are like.

Contact details (if you want to give them) – blog, Twitter, FB etc

Blog: www.mychroniclifejourney.com Twitter: @ChronicMeg  Facebook: facebook.com/ChronicMeg

Any other bloggers who want to join the blog chain, please copy this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a Tweet so she can link to your blog post in her original post.


#May12BlogBomb

I am also joining with Sally at SallyJustMe.Blogspot.com.au who is orgnanising a#May12BlogBomb where bloggers all post a blog about living with CFS / ME / Fibro on May 12 so keep your eye out for another interesting post on Monday. Read her article here about #May12BlogBomb.

 If you do a #ThisIsME post, Louise will link to your post. If you do a #ThisIsME blog post and then schedule it to go ‘live’ on May 12 you can be part of both the #ThisIsME awareness campaign and the#May12BlogBomb. Wins all round!!

Looking forward to reading all your #ThisIsME posts. Use this hashtag on Twitter or Facebook to encourage more people to take part and to help people find #ThisIsME posts. And please let Louise know when your post is up and she’ll link to your page!!


#ThisIsME Posts By Other Bloggers

TipsForME.Wordpress.com – Posted 1 May 2014

SallyJustME.Blogspot.co.uk – Posted 2 May 2014

BeingTheImperfectMom.com – Posted 5 May 2014

Granualie.blog.de – Posted 7 May 2014

No Comments

  1. tipsforme May 9, 2014 at 5:14 pm

    These conditions are so complicated that when I read other people’s #ThisIsME blogs I think “yes I have that experience too, maybe I should have written that”, but that is why the blog chain idea works because together they represent our collective story.

    • Megan S May 9, 2014 at 5:21 pm

      Exactly right! I read everyone else’s posts and definitely recognised a lot of what they were saying, but there’s so much to get across I don’t think one person can do it alone!

  2. salkeela May 9, 2014 at 6:44 pm

    Good #ThisisME post Megan – our stories are all similar, yet unique…

    Thanks also for the shout out for #May12BlogBomb I look forward to reading your post then. (If you have the link in advance, send it to me and I’ll add it to the links page. Cheers).

    • Megan S May 12, 2014 at 10:00 am

      Hi Sal, thank you for the positive feedback. My #May12BlogBomb post will be going up today so I will send you the link once I’ve finalised it.

  3. This is M.E. – ME / CFS / Fibro Awareness Day 2014 – Blog Chain The Get Up 'N' Go Guru May 10, 2014 at 2:06 pm

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  4. jpeggytaylor May 10, 2014 at 4:36 pm

    I recognise so many of those things you describe, Megan, in the people I have known who suffer with ME/CFS. One that struck me particularly is the impact ‘busy and noisy situations’ have in exacerbating symptoms. I have seen this too – it seems as if the ME/CSF suffering person’s brain cannot process all of the surrounding noise and activity as a healthy person would and they become exhausted and debilitated as the brain tries in vain to keep up. There is so much yet to understand about these conditions.
    Best wishes 🙂

    • Megan S May 12, 2014 at 9:58 am

      Thank you so much. That is one of the symptoms that I find most frustrating! It limits what I’m actually capable of doing even if I’m feeling reasonably OK.

  5. International ME/CFS/Fibromyalgia Awareness Day: A letter to my illness | my chronic life journey May 12, 2014 at 10:48 am

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  8. TwoWishes Tara May 13, 2014 at 2:13 pm

    Visiting from the ME Awareness Day link-up, and I’m so impressed with how well you’ve described many aspects of the illness here. It’s sad to read everyone’s stories of suffering, but there is a solidarity in knowing that people around the world are sharing similar experiences and finding sources of strength throughout these difficult days.
    I was already disabled by CFS when I got pregnant. I hadn’t planned on children because of the illness, but got careless because I thought I was basically infertile due to age (over 35), illness, and a history of fertility-destroying chemo. Surprise! The first few years of trying to keep up with a baby were the most difficult thing I’ve ever done by far. But now that she’s settling into routines, doing more things for herself, going to school every weekday, and just generally all-around easier, I am terribly, terribly grateful that life sent this particular change of plans our way. She is the light of our lives, and completely worth the harder years at the beginning. Please don’t hesitate to email if you want to ask any questions about being pregnant with or parenting with CFS.

    • Megan S May 13, 2014 at 2:35 pm

      Thank you so much Tara! It’s nice to hear about others who have been through this. I may take you up on that offer of emailing when I’ve got enough strength to do more!

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