I’m a day late with this one, so I’ve changed one or two details to reflect that; rather than for International ME/CFS/Fibromyalgia Awareness Day I’ve changed it to Awareness Week. But the important thing is I’m joining in this blog chain created by Louise on http://www.getupandgoguru.com/

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 Dysfunction Syndrome (CFIDS). A new name that has been put forward in recent times is Systemic Exersion Intolerance Disease (SEID) (love it or hate it as you may!). 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.
As part of International ME/CFS/Fibromyalgia Awareness Week, I have 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 on to 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 Clare and I’ve officially had ME for 10 years as of today.

 

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

I live in Chelmsford, Essex, England.

 

Age (if you’re willing to share)

22

 

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

1. I love gardening. Every Spring I sow fruit and vegetable seeds in order to grow my own throughout the Summer months. There’s something rewarding about growing your own food, and generally it seems to taste so much better than the supermarket bought items!

2. I love Disney films, especially musicals! Frozen, High School Musicals and Camp Rock live in my DVD collection!
3. I’ve been blogging for three years now, and love every minute of writing blog posts. Writing my thoughts out online like this somehow helps me deal with anything that’s going on in my life. Some people like talking, I prefer typing.
4. I’m hoping to set up my own business from home once I finish doing my degree. I’m not too sure of the details just yet but it’s the only way I can see of earning an income.
5. I love making things; knitting and sewing are just two of my hobbies relating to this. I love a hand knitted jumper or doing tapestries in my spare time. I hope to start quilting soon.

 

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

 
1. I have to have my parents help me with a lot of basic tasks when I’m at my worst. Showering, dressing, brushing my hair and cutting up food are just some of the tasks I can’t always complete myself.
 
2. I do not receive any benefits, despite being unable to work. I am completely dependent on my parents for everything financially, which just makes me more determined to find a M.E. friendly job or build a business myself so I can be financially independent.
 
3. I try to be as open and honest about my symptoms and illness when writing online but in person I often try and appear as normal as I can. To the best of my ability I hide all my symptoms, so to an outsider it can look like I am perfectly healthy. In reality at the very least, I am always in some level of pain. If I hide how I am for too long I inevitably end up feeling a lot worse when I drop the act as the symptoms I’ve been ignoring during that time hit me full force.
4. All my activities are carefully planned and managed. Not because I’m a control freak but because it’s the only way I can keep my symptoms at a manageable level. Without doing so would cause me to do too much and my illness would become a lot worse. (I’ve learned that from experience) Don’t get me wrong I still do things which are technically too much for my body to handle, but a day or two of light or no activity has to follow in order for me to maintain the status quo of symptoms. And by activity even things like washing and dressing have to count.
 
5. I never know what each day might bring. Even with being ultra careful managing my activity levels I never know what I’m going to wake up to. Sometimes a day of resting can mean the next day I will be able to manage what I consider a normal level of activity, other times I can wake up feeling worse. There are days when for seemingly no reason I feel like I’ve been hit by a truck and I’m forced to cancel any plans I had for the day in order to rest and relieve those symptoms. Unfortunately there are also days when the plans are unchangeable and I have to push through the symptoms, making the following few days a lot worse.

 

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

It’s a constant challenge. It often feels like you’re struggling to keep your head above water; every time you see the slightest hint of improvement it can be cruelly snatched away. There are many times you feel like giving up altogether. You question the point of living a life when so much of it seems to be wasted on doing nothing, resting, in the hope that by doing that you will recover to the point of being able to live life again. You spend the majority of your time just existing, unable to join in the things going on in other people’s lives. But you do your best to live your life to the absolute max of your ability. That might not mean the big things other people would think it does; it could just be getting out of the house for 10 minutes, or going to one shop in a wheelchair. While doing that you hope that one day your absolute max will increase to mean the big things it does to everyone else.

 

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

There are so many frustrating aspects it’s difficult to pick one. I think the most frustrating aspect of living with this illness is my dependence on my parents – financially and otherwise – at 22 I should be washing and dressing myself, earning a living, cooking for myself. Basically being a lot more independent than I am, yet this illness has left me completely dependent on them for seemingly everything. I am immensely grateful for the fact they do so much for me, stuff no parent should have to do for their 22 year old daughter.

 

Anything else you’d like to say before finishing?

I can’t remember what it is like to be healthy. To be pain free. To be fatigue free. To not have to carefully balance activities and rest in order to maintain the current level of health. I cling on to the hope that one day I will rediscover what it is like to be healthy.

 

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

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.

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