Do I Have CFS?

Do I Have CFS? |

So a few days ago Emma Blackery announced that after being unwell for many years she had finally been diagnosed with CFS. Now I feel really sorry for her because while its great to know what you have, being diagnosed with CFS sucks. Really sucks. Not only is the actual illness horrible, but for a long time CFS/ ME was the diagnosis you got if doctors didn’t know what was wrong with you. Fortunately more research is being done, doctors know that CFS is some type of neurological disease, but they still don’t know much about it. Basically you don’t want to be diagnosed with CFS.

One thing that Emma talked about is that CFS is an invisible illness, you don’t see many people talk about it, and as such people don’t really understand what it is. One of my neighbours was diagnosed with ME way back in the 80s when it was more commonly known as “yuppie flu”, basically people thought that it was just laziness rather than an actual illness. But because of Emma’s announcement I’ve seen many people ask “I’m tired does that mean I have CFS?”. Now the first thing I’m going to say is if you’re constantly tired that is something you should get checked out. But you also need to understand that being tired and having chronic fatigue is not the same thing.

One of the main symptoms of CFS is tiredness, but its constant never ending tiredness. I could go to bed tired and wake up still tired. Thats if I actually get some sleep. CFS also causes all sorts of sleep issues. I could be tired and want to sleep but not be able to. Not only are you tired all the time, but doing stuff makes you more tired. Even those little every day things like getting out of bed or taking a shower or reading a book. When I first got CFS I would have to go lie down after getting out of bed because even that was too much. Not only that but you have this thing called post exertional malaise. Basically you could do stuff one day then wake up the next feeling horrible because of it.

Then you have the really fun stuff like muscle pain, headaches, breathlessness, feeling like you’re going to pass out and my particular favourite. Brain fog. Brain fog makes you do some really stupid things, it makes you forget stuff, it makes you mix up words – last year I was constantly asking my sister how her latest driving test went – it affects your ability to concentrate or focus on something. I told my doctor at one point it felt like I couldn’t think. I couldn’t count to 10, I’m constantly forgetting words (fortunately I have Joe to act as a thesaurus), just last week I caught myself about to pour hot water into the tea caddy rather than my mug. Brain fog is not fun.

Every time I see someone say how great it would be to have CFS I get so mad because they obviously think CFS is some excuse to be lazy and do nothing all day. Its not something you want to have. If you’re just tired all the time you probably don’t have CFS but you probably want to get that checked out anyway. If you can relate to the other symptoms you should definitely get that checked out. CFS is horrible and you don’t need to feel like you’re alone.

Thanks for reading.
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38 Responses to “Do I Have CFS?”

  1. scifihammy

    While CFS is becoming more recognised and talked about that still does not make a difference with the debilitating effect of the illness and any chance of a normal life. I don’t know how many years you have had this, but I hope that one day you will have more energy and get some sort of life back.

    • bluchickenninja

      I’ve had it for almost 2 years now. The problem is that doctors don’t even have a way of diagnosing it. Its more like rule everything else out and if you’re still tired you have CFS.

      Some board in America recently acknowledged it as a disease and changed its name so hopefully that means people are doing more research.

      • scifihammy

        Both my daughters had long term chronic fatigue illnesses, and all the docs could find was that the white blood cell count was up – so they were fighting Something!
        Here it is called m.e. too (Myalgic Encephalomyelitis.) Naming it at least makes it more real to some people!
        I hope you have a good support group – eg your family – as that makes all the difference. And hang in there, because eventually your body will reset itself and you will improve.
        It’s great you have your blog and read all those books as then you achieve something each day 🙂

        • bluchickenninja

          Yeah its ME or CFS, they are both basically the same thing. Though from what my doctor told me ME has something to do with an infection. I dunno.

          Its really funny, one of the things I talk to my doctor about is the books I read because its actually a really good way of being able to tell how my month has been. If I’ve read a lot then it usually means I’ve had a good month.

        • scifihammy

          Yes I think my daughter’s m.e. was caused by an unknown virus.
          The best advice we got over all the years, was the three A’s.
          Accept, Attitude and Achieve
          – which you are doing anyway 🙂

  2. Haylee

    Have people actually said they’d love to have it? So insensitive. It’s what I think my mum could suffer from, but her doctors are useless and despite loads of tests always say they can’t find anything. Then usually prescribe antibiotics in case it’s a viral infection. Sure they’re just synths!

    • bluchickenninja

      Yeah, you see a lot of people who think its just an excuse to be lazy or that its not real. Its very annoying when people (especially doctors) think its just depression or something like that.

    • bluchickenninja

      I think its something everyone takes for granted, you don’t realise how much energy you have till you don’t have it. Even I was surprised.

  3. Maria H.

    Sounds horrible! Too tired to read a book? I hope they are doing research and find some treatments that can at least make you and everyone with CFS feel better.

    • bluchickenninja

      Its not just being too tired to read a book. Its like your eyes go all fuzzy so its hard to focus on the text and then your concentration is really bad so you can only read for like 5 mins at a time.

      Fortunately mine isn’t that bad anymore!

  4. resili0

    My Mr Honeybadger has it and when we did his DLA form, it hit us quite how much CFS affects every area of his life. It isn’t simply exhaustion or the bad days, but the constant energy required to plan rest in, stay healthy, figure our how much activity/movement is good for him and how much tips him into being bedbound. It breaks my heart to see him spend two weeks barely able to walk after just one day of fun. Everywhere we go we have to plan, will we get seating on the train, how far is the restaurant, is there a cool airy spot for a drink (his migraines are triggered by hot stuffy crowded spots.)

    Nothing about it is fun or relaxing. I love him, I am incredibly proud of him and he is mot defined by his illness. We accept it and live an awesome life in spite of it but it definitely makes life really difficult in a way that is lonely. Very few people have any understanding about the impact on us.

    I try to educate people when I can.

    • bluchickenninja

      Yes! The thing about finding a seat on the train. It used to be that I would just stand on the train because I was only on it for 15 mins and finding a seat was basically impossible. Now I’m like I have to find a seat because sometimes I can’t stand for that long.

      Its so many little things than you normally don’t think about. Washing my hair is difficult because my arms get sore. I have to plan breaks if I go into town. Actually I hardly ever go into town by myself now just in case I start to feel ill.

      I try and explain it to people and they just don’t understand that I have to think about these tiny little things. I hope Mr Honeybadger starts to get better. Its really a horrible thing.

      • resili0

        His CFS is part of cluster of illnesses that are likely to deteriorate over time, so every day that we can plan things to maximise the experience and do Normal People Stuff is precious. He is really practical and gets on with it. People don’t see the reality, turning down social events, being too tired to sit up and work on a hobby, being unable to grip a pan to cook. We do have family and friends who will help us and who get it but yeah, it is a lot of challenges yo break down and tackle.

  5. Cheyanne

    Sounds like CFS is a bit like Fibromyalgia or Endometriosis — it’s horrific for people that experience it but too vague to make much sense to those that don’t. I totally understand how frustrating it can be when you’re burdened with something that doesn’t seem like a “real” problem to others. It SUCKS. Thanks for sharing!

  6. Stampin' Up! Demonstrator Karen Raynor

    It really annoys me that people think it’s a fun thing to have. I feel tired all the time but that’s because I sleep really badly, which is bad enough, but not having the energy to even leave the house etc is awful. I definitely think there needs to be more awareness raised about CFS to hopefully start to change people’s attitudes about it.

  7. koehlerjoni

    I’m sorry you’ve had this struggle, and I hope your recovery is a speedy one. I really enjoy reading about the books you’ve read, and I know you’ll be successful in the future.

  8. Joanne Corey

    Thank you for the post. People need to be reminded what CFS/ME (or FM, here in the US) is like. I hope that over time you will find treatments and strategies to help you. My daughter has been able to improve a lot, but it took a lot of time, medical help, and a change in climate.

    • bluchickenninja

      It is slowly getting better, but people don’t realise how long it actually takes. Some people think CFS is the sort of thing you get over in a few months!

  9. Gracie K. Harold

    I am so sorry to hear about your CFS. I have suffered from chronic pain, but I cannot fully understand what you are going through. I am so sorry for your pain and weariness. May you be blessed with encouragement and understanding! I am glad you found my blog, and i look forward to learning more from you! Thank you, Gracie K.


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