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.
22 thoughts on “This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain”
Thank you so much for sharing so generously in order to bring further awareness to the experience of ME/CFS. You are the first person (other than myself) to put up a #ThisIsME post, and it’s made me so pleased that I decided to post the #ThisIsME blog chain idea. So often I have ideas but either run out of time and energy to put them in action, or I doubt myself and think that maybe no-one would be interested.
I can’t quite describe the feeling I got this morning when I saw you’d posted a #ThisIsME blog. I think it’s pride. Then I read your post and I just felt humbled and inspired by your courage and honesty. There is such an amazing community of people world-wide who are outstanding human beings who want to contribute to the world, yet are struck down by this debilitating, life-altering illness of ME/CFS.
I have always held onto the belief that we are going through this for a reason. A lot of the time I wonder what that could possibly be. But I’m starting to see that 21 years of living with ME/CFS has given me knowledge and ‘training’ to help others in the same situation. And I also see that I would never have connected with someone as inspiring as you if I hadn’t had the journey I have had. I’m honoured to now know you a little better.
All the best
Louise
PS (If anyone else wants to write a #ThisIsME blog, just copy & paste this blog, then let me know you’ve posted it so I can link to it on the original – Louise@GetUpAndGoGuru.com. Thanks!)
Thanks Louise. I realise I need to add instructions to the end of the blog so others can carry it on. Would an ongoing list of the chain make sense? I hope it catches on because it will also highlight the wide range of symptoms and experiences that people have.
I hadn’t thought of an ongoing list, but it makes perfect sense. It would be such a great resource for people who are newly diagnosed. We’ll just have to make SURE it catches on because that’s a great idea. As soon as I get a certain number through I’m going to dedicate a whole page to it anyway, so I’d just keep updating it.
Oh, and re the instructions. I added them to the bottom of my blog post, and also if you look up SallyJustME.blogspot.co.uk’s post, she has used them really well.
Cheers Louise
I can totally relate to you Jenny, especially the one activity a week, the difficulty reading and the legs like concrete. So far I manage without a wheelchair but that is mainly because I hardly ever go out. Yesterday I managed a short walk, today I am sat in the chair.
I’ve not had a satisfactory explanation about what causes concrete legs. Have you heard any? Its not just ‘fatigue’ because I had the condition 14yrs before the concrete thing became an issue.
I don’t have an explanation as such Jenny but I do wonder about something. I don’t know if you get MEResearchUK’s magazine Breakthrough but in one issue it mentioned a doctor, I think it was Faisal Kahn but might be wrong there, who studied vascular problems in M.E. and talked of the pooling of blood at the extremities. I have wondered if the heaviness in the legs might be something to do with the blood not pumping back as efficiently as it should. I don’t know, that is only my theory. I don’t know if you notice it as I do being worse on days when the weather forecast says low pressure. On days like that I can rarely get out of the house whereas on high pressure days I have a better chance. Again something someone told me is covered in my blog post Low Pressure. http://sherrielowe.wordpress.com/2013/11/10/low-pressure/ I don’t know if any of it makes any sense to you.
Is that Chronic Venous Insufficiency? (Just googled). I’m fairly sure that’s not the problem for me as my legs don’t swell and it effects quads (thigh muscles) not lowrr legs. Also can come on suddenly after walking ok, sometimes goes quickly sometimes lasts days. Sometimes electrolyte water seems to help but haven’t tested that idea enough.
Oh I don’t know then. That’s not me either, my legs don’t swell they just feel as though they weigh a ton! The low pressure thing is fact with me but as you say even the sunshine isn’t the cure all. I can only sit in it for about half an hour but I do like it and it gives a bit of vitamin D 😉
Also I do feel better in sunny weather. tho not the instant cjre some people seem to think 😉 I had thought its more psychological than physiological though as I enjoy sitting out in the sun.
Wow Jenny there was a lot there I didn’t know – you seemed so vibrant every time I met you , but then seemed to disappear completely from view – I had imagined you as rather half hearted about the whole doctoral thing – but now hear you probably gave OT you all and then collapsed. The whole blue badge thing is a disaster – I have one but similarly had to wait such a long time after having a stroke that I could walk from most car parks albeit slowly. I have been waiting for nearly 2 years for a disabled parking bay outside my house – by the time it comes we will probably have moved!! Jxxxx
Jane. Your comment is interesting because when I was well enough to work I was concerned about missing opportunities if other people thought I was too ill to do things, so was cautious about coming out as having ME (fluctuating illness is v toxic for careers). I didn’t really consider enough how I might come across if I didn’t act as expected and the other person didn’t realise it was for health reasons. I don’t remember much about the chronology of applying for the doctorate funding, but it was definitely a big effort while working and not something I felt I could do repeatedly. Good to hear your walking distance is improving. In my last job I worked w a couple of people who’d had strokes and the experience overlapped w ME more than I’d realised before.
Tips for ME 
Thank you so much for sharing so generously in order to bring further awareness to the experience of ME/CFS. You are the first person (other than myself) to put up a #ThisIsME post, and it’s made me so pleased that I decided to post the #ThisIsME blog chain idea. So often I have ideas but either run out of time and energy to put them in action, or I doubt myself and think that maybe no-one would be interested.
I can’t quite describe the feeling I got this morning when I saw you’d posted a #ThisIsME blog. I think it’s pride. Then I read your post and I just felt humbled and inspired by your courage and honesty. There is such an amazing community of people world-wide who are outstanding human beings who want to contribute to the world, yet are struck down by this debilitating, life-altering illness of ME/CFS.
I have always held onto the belief that we are going through this for a reason. A lot of the time I wonder what that could possibly be. But I’m starting to see that 21 years of living with ME/CFS has given me knowledge and ‘training’ to help others in the same situation. And I also see that I would never have connected with someone as inspiring as you if I hadn’t had the journey I have had. I’m honoured to now know you a little better.
All the best
Louise
PS (If anyone else wants to write a #ThisIsME blog, just copy & paste this blog, then let me know you’ve posted it so I can link to it on the original – Louise@GetUpAndGoGuru.com. Thanks!)
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Thanks Louise. I realise I need to add instructions to the end of the blog so others can carry it on. Would an ongoing list of the chain make sense? I hope it catches on because it will also highlight the wide range of symptoms and experiences that people have.
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I hadn’t thought of an ongoing list, but it makes perfect sense. It would be such a great resource for people who are newly diagnosed. We’ll just have to make SURE it catches on because that’s a great idea. As soon as I get a certain number through I’m going to dedicate a whole page to it anyway, so I’d just keep updating it.
Oh, and re the instructions. I added them to the bottom of my blog post, and also if you look up SallyJustME.blogspot.co.uk’s post, she has used them really well.
Cheers Louise
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I can totally relate to you Jenny, especially the one activity a week, the difficulty reading and the legs like concrete. So far I manage without a wheelchair but that is mainly because I hardly ever go out. Yesterday I managed a short walk, today I am sat in the chair.
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I’ve not had a satisfactory explanation about what causes concrete legs. Have you heard any? Its not just ‘fatigue’ because I had the condition 14yrs before the concrete thing became an issue.
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I don’t have an explanation as such Jenny but I do wonder about something. I don’t know if you get MEResearchUK’s magazine Breakthrough but in one issue it mentioned a doctor, I think it was Faisal Kahn but might be wrong there, who studied vascular problems in M.E. and talked of the pooling of blood at the extremities. I have wondered if the heaviness in the legs might be something to do with the blood not pumping back as efficiently as it should. I don’t know, that is only my theory. I don’t know if you notice it as I do being worse on days when the weather forecast says low pressure. On days like that I can rarely get out of the house whereas on high pressure days I have a better chance. Again something someone told me is covered in my blog post Low Pressure. http://sherrielowe.wordpress.com/2013/11/10/low-pressure/ I don’t know if any of it makes any sense to you.
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Is that Chronic Venous Insufficiency? (Just googled). I’m fairly sure that’s not the problem for me as my legs don’t swell and it effects quads (thigh muscles) not lowrr legs. Also can come on suddenly after walking ok, sometimes goes quickly sometimes lasts days. Sometimes electrolyte water seems to help but haven’t tested that idea enough.
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Oh I don’t know then. That’s not me either, my legs don’t swell they just feel as though they weigh a ton! The low pressure thing is fact with me but as you say even the sunshine isn’t the cure all. I can only sit in it for about half an hour but I do like it and it gives a bit of vitamin D 😉
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Also I do feel better in sunny weather. tho not the instant cjre some people seem to think 😉 I had thought its more psychological than physiological though as I enjoy sitting out in the sun.
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Wow Jenny there was a lot there I didn’t know – you seemed so vibrant every time I met you , but then seemed to disappear completely from view – I had imagined you as rather half hearted about the whole doctoral thing – but now hear you probably gave OT you all and then collapsed. The whole blue badge thing is a disaster – I have one but similarly had to wait such a long time after having a stroke that I could walk from most car parks albeit slowly. I have been waiting for nearly 2 years for a disabled parking bay outside my house – by the time it comes we will probably have moved!! Jxxxx
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Jane. Your comment is interesting because when I was well enough to work I was concerned about missing opportunities if other people thought I was too ill to do things, so was cautious about coming out as having ME (fluctuating illness is v toxic for careers). I didn’t really consider enough how I might come across if I didn’t act as expected and the other person didn’t realise it was for health reasons. I don’t remember much about the chronology of applying for the doctorate funding, but it was definitely a big effort while working and not something I felt I could do repeatedly. Good to hear your walking distance is improving. In my last job I worked w a couple of people who’d had strokes and the experience overlapped w ME more than I’d realised before.
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