Most of you know that I have Myalgic Encephalomyelitis (M.E). It is also known as Chronic Fatigue Syndrome (CFS) 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.
As part of the preparation for International ME/CFS/Fibromyalgia Awareness Day on May 12, 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 to contribute to this blog chain (this is a longer than normal post as a one-off).
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? My name is Jenny and I have had fluctuating ME/CFS/Fibromyalgia since catching glandular fever in January 1998.
Where do you live? I live in a small terrace house in a city in the UK.
Age? Mid-thirties, my birthday is the day after ME Awareness Day (guess what my ideal birthday present would be!).
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related): 1. Although people perceive me as being enthusiastic about the internet, I value my personal privacy and get nervous about sharing personal stuff online. I don’t mean in terms of identity theft but the intimate details that you’d normally only tell close friends. This should show how much I care about ME Awareness, because this isn’t the type of blog post I’m inclined to write. 2. People I know probably imagine I’m sitting at home reading classical literature or poetry but I actually enjoy quite a bit of trashy TV such as Hollyoaks and Made in Chelsea. 3. Looking at pictures of plants on Pinterest takes up a surprising amount of my time. The reason this is surprising is that our garden is full of weeds and I don’t have any practical experience of gardening. 4. I have a long term ambition to be glamorous in middle age. I’ll have to build up to this because the last couple of years has consisted of pyjama and fleece based fashion choices! When does middle age start? 5. People seem to be impressed by my eclectic playlists but the truth is that I don’t really care about all the background info stuff that musos know. Most of the time I can’t remember the name of the band. The secret is that I have broad tastes and lots of time to listen to Spotify.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME: 1. Since 1998 (as far as I can remember) I have experienced a variation on feeling ill everyday, even when I have acted and worked ‘normally’. The few days I’ve felt well have been days just before getting a virus (e.g. ‘oh I feel clear headed today’ next day come down with the flu). 2. Tiredness, as other people experience it, is not one of my main symptoms. The fatigue in Chronic Fatigue Syndrome is hard to describe. It is somewhat like permanent glandular fever or flu. It usually refers specifically to Post Exertional Malaise which is feeling ill after doing something. For me this ‘fatigue’ is generally nausea, weakness, feeling like my head is too heavy, or my legs are like concrete so I can’t walk. 3. If you see me walk I’m probably walking normally, I don’t usually look frail. However, it is as if there is an invisible boundary around me that expands and contracts. Outside of this boundary my legs turn to concrete and I can’t walk at all. At the moment the boundary is usually around 15 metres, sometimes it is only as far as the bathroom and occasionally it is one step. 4. If you see me for an hour today and I seem well, the likelihood is that this is the main activity of my week. I will have rested the whole day before and will rest tomorrow. If I judge it wrongly and talk to you for too long my legs will turn to concrete (today or tomorrow as a delayed reaction) or I may have to spend the next week in bed recovering. 5. I have difficulty reading since my recent relapse. I am struggling to read back what I’ve written to see if I agree with myself… (touch typing skills not currently impaired)
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know? We want to maintain relationships but it can seem like we don’t care and want to live like a hermit. Our inability to socialise is due to the physical strain that this causes and nothing else (well perhaps also a little bit of feeling like we have no interesting news to share). If you have a friend with severe ME who can’t see you perhaps you could send them a card or a tweet without expecting anything back in the short-term? The worst feeling is realising that other people have moved on in their lives and formed newer, closer friendships while you can’t even maintain the old friendships.
What is the most frustrating aspect for you of living with ME / CFS? The unpredictability of having a fluctuating illness is very hard to live with. I’m hoping for a full recovery but I have no idea how long that will take, and when I’ll be able to start working again. We can’t book a holiday because it is unlikely that I’ll feel well enough to travel anywhere in the next few months. I have to accept a high degree of uncertainty in most aspects of my life because of this condition.
Anything else you’d like to say before finishing? It would be a huge improvement to our quality of life if officialdom would recognise the nature of our impairments more specifically. For example, when I was working part-time and fairly independent I was turned down for a Blue Badge (disability parking). I finally qualified when I got to the point of being bedbound! This was nearly useless because I had no need to park anywhere (the only place I went was the doctor’s and my partner drove me and pushed the wheelchair). I can’t say for certain, but maybe having a Blue Badge when I could drive myself would have saved me energy and stress and helped somewhat to prevent relapse. It would be great to have a campaign to change the Blue Badge criteria for people with ME/CFS/Fibromyalgia.
Carry on the Chain
Any other ME/CFS/Fibro/Spoonie bloggers who want to join the blog chain, please copy this and fill in your own answers. Share your post with #ThisIsME.
Then email Louise@GetUpAndGoGuru.com so she can link to your blog post in her original post.
Also, it would be interesting to record how the chain got to you, so people can easily read other perspectives.
By the way, I’m planning a picture based (rather than text based) post for 10am on 12th May as part of the #May12BlogBomb for ME Awareness Day. Are you taking part in #May12BlogBomb? See SallyJustMe.Blogspot.com.au for more info.