Life With Chronic Fatigue

Life With Chronic Fatigue

A few years ago, I came down with a flu-type virus one Christmas. I’d never had anything like it. I felt dreadful for a whole two weeks. Zero energy, a sore throat, coughing, spluttering, nose running, feeling hot then cold… Just dragging myself out of bed was a chore in itself.

The new year didn’t get much better. The flu-type bug gradually disappeared, only to be replaced with recurring sore throats and colds. A lack of energy had set in too. It wasn’t just tiredness, it was something more. By Easter of that year, I’d had enough and took myself off to the doctors.

Several appointments and several rounds of blood tests later, I was diagnosed with Chronic Fatigue Syndrome.

Since, I’ve had numerous blood tests and appointments and I’ve been on a Pain and Fatigue Management Course at the local hospital, but there’s no cure.

As a result, I’ve had to down to just 4 days a week at work. I’m thankful that I work for an understanding company, but I hate that I still need days off from time to time.

Chronic fatigue is not just being tired. It’s a whole new level of tiredness. How would I describe it to someone? The feeling (exhaustion and pain, but not the exhilaration) after running a marathon, the grogginess of coming around after general anesthetic, having flu day after day after day. Do you get the gist?

Energy just disappears. Sometimes just getting out of bed is an event in itself. I’ll fall asleep while reading or watching a film. Going out shopping can take it out of me and have consequences for a day or three afterwards. I used to love going to concerts and queuing up long enough to get to the front by the barrier, but I can’t cope with that now. It’s too painful and I don’t have the energy to stand for that long anymore. If I go to a concert now, I generally need a seat to lean against and sit down on from time to time.

If I am feeling good and go out for the day or go off for the weekend, then I know I’ll feel the effects of it for days afterwards.

There’s the “brain fog” too. Not being able to think properly, forgetting words, using the wrong words, forgetting what I was saying mid-sentence, feeling confused, forgetfulness, difficulty concentrating… Simple things become that bit more difficult. I hate the brain fog, especially when it descends mid-conversation making me look stupid.

Then there are the aches and pains. If I walk too far, I start hobbling and slowing down. Having an OAP overtaking you whilst out shopping or walking can be a bit embarrassing! But then being sat down for most of the day has the same effect, especially at work. So I try to keep moving and finding excuses for not being sat down constantly.

It doesn’t seem to matter if I sleep well at night or not. I still feel more tired in the morning than I did when I went to bed. Sleep is rarely refreshing for someone with Chronic Fatigue.

CFS/ME is very much an “up & down” illness in that some days (or even weeks) are good and some are bad.

I have mild Chronic Fatigue, but I’m well aware there are people who have it much worse than me. Some people who have CFS/ME are bedbound and it frightens the life out of me that things could get that bad.

I’ve recently had another couple of rounds of blood tests, seen a rheumatologist and have been diagnosed with a vitamin D3 deficiency. So it’s an ever-changing situation.

Do you (or someone you) know suffer from a chronic illness?

21 comments

  1. Kelly says:

    I’m sorry you have to deal with this. I have a few friends with MS, and I know it’s difficult dealing with a chronic disease – especially those which are not easily diagnosed or treatable. I hope you’re able to get relief at some point.

  2. Jo says:

    What a terrible thing to have to live with. I’ve heard people talk about it before and I don’t think the title it’s been given really conveys that it isn’t just about the exhaustion, as you say, it’s extremely painful too. Wishing you all the very best for the future, with all the advancements in medicine let’s hope they can find some relief for sufferers soon.

  3. While I don’t have any experience with chronic fatigue, I do have a chronic disease (a few autoimmune diseases), and I can relate with the pain and brain fog. My condition was much worse a few years ago, and it has since then cleared up. I don’t take medications and I very, very rarely ever have symptoms! I credit this to being more active, eating cleaner, and keeping a positive mindset. It’s a miracle what being optimistic can do. I hope you start to feel better soon, because I know how hard it can be!

    • Nixy says:

      Thanks. Having a positive mindset certainly does help, but obviously there’s always one or two days when the “I can’t be doing with this” mindset sets in.

      I’m not very good with taking medication, so I’m really only taking the vitamin D3 at the moment (along with pain killers and antihistamines on the odd occasion when needed).

  4. Leta says:

    I’m so sorry to hear this, Nixy. I can’t imagine how horrible it must feel to suffer from chronic fatigue. I really do hope that you will get better soon and feel re-born! 🙂

    -Leta | The Nerdy Me

  5. Ashley Steer says:

    This breaks my heart. 🙁 I used to feel pretty similar and then I started a vitamin d supplement and cut grains out of my diet. I’ve never had more energy in my life!

    • Nixy says:

      Having done some research, I’m hoping the vitamin D3 helps with the fatigue too. I’m wheat-intolerant and I’m having tests for celiac disease, so I don’t eat much grain anyway.

      Thanks for dropping by 🙂

  6. Tracy Terry says:

    I have a friend with this and whilst she struggles with many of the things you mention she found the hardest thing to deal with was people being disbelieving of her.

    • Nixy says:

      I haven’t come across the disbelieving too much. It’s more people saying “Oh, I’m tired too”, “You’ll be alright, you can rest later” or even “Have you tried exercising?” comments when they really haven’t a clue. You get the feeling they think your just lazy!

    • Nixy says:

      Ouch. Is there anything they can do for that? Just having intense pain in my face from a bad wisdom tooth on and off for a few weeks a couple of years ago was bad enough (until I had it out), I can’t imagine dealing with that on an ongoing basis.

      • If it ever gets to the unbearable stage, they can drill a hole through my skull behind my ear, to free up the compressed nerve that causes the pain. Fortunately it comes and goes, and is gone at the minute (I’m mentally crossing fingers and touching wood as I write that!!).

        • Nixy says:

          I’m not sure I like the sound of that, but I guess if it does the trick it’s better than the pain! (Fingers crossed for you, too!).

  7. Hi Nikki,

    Hopefully medical advances will lead to an even greater understanding of these newly diagnosed illnesses and thus to some improved and targeted treatments for sufferers, who like yourself, currently find themselves isolated by a community which has yet to come to terms with your condition.

    When my mum first became ill, she was diagnosed and treated for mental illness for many years, before finally being one of the first people to be officially labelled as having MS. By this time, not only had the sedatives etc. which she had been prescribed for her ‘nerves’, virtually scrambled her brain, but the disease itself had spread to such a degree that little could be done to prevent her from becoming totally disabled and uncommunicative.

    Perhaps we do expect a bit too much of the medical profession as being a cure-all for every illness known to mankind … I tend to sit on the fence in that debate!

    I hope that your new treatment for D3 deficiency helps improve your general welfare.

    Best Wishes 🙂

    Yvonne

    • Nixy says:

      So sorry to hear of your mum’s suffering.

      Some of the CFS/ME symptoms are similar to MS, so that’s been mentioned to me and I know a few people with it (surprisingly, quite a few people, when I come to think about it!).

      Cures for many of these diseases may be found in time, but I don’t think on the whole they’ll be shared with the general population. Many of the companies who fund the research are the same companies who sell the medication. They get more money from selling medication to alleviate symptoms than they do for curing someone (who then doesn’t need on-going treatment). Plus many medications and treatments are so expensive that the general public and the NHS just can’t afford to fund them.

      (Rant over!).

      I hope you’re well 🙂

  8. rashbre says:

    Hi Nikki-ann, I’m sorry to hear of this. It sounds pretty yucky.

    I know other people who have had this kind of thing and also that it seems very difficult to diagnose. It’s one thing having symptoms but quite another finding ways to fix it.

    It sounds as if you are doing what you can, what with rests and tests and tabs. I hope you are okay at the moment.

    Certainly when I read your posts you always come across as lively minded! 🙂

    Sometimes we all need to take some down time/me time. I call it decompression and for me it can be as simple as going for a walk.

    A friend of mine and I used to regularly work on some complicated strategy things and would invariably get stuck with something that we couldn’t figure.

    We’d stop and deliberately go do something else (and no, I don’t mean go to the pub!)

    Weirdly it somehow worked and we’d come back to the original thing with other ideas – I guess that’s how I first learned about my own need to decompress.

    Anyway, keep on doing what you do!
    Very best wishes.

    Ed

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