Friday 4 April 2014

FATIGUE

I'm tired.  Shattered.  Worn Out. Constantly.  Permanently.  It doesn't matter what time I go to bed.  It doesn't matter what time I get up.  Even if I have a little nap.  I'm tired.  I am more than tired, much more, I have fatigue.


Fatigue plays a huge part in MS; in fact almost everyone who has Multiple Sclerosis (MS) also has Fatigue.  Fatigue certainly plays a role in the MS of a large number of those living with the condition (according to the National Multiple Sclerosis Society (NMSS), around 80% of those diagnosed with the condition will experience fatigue at some point during the course of the disease).  Fatigue certainly plays a significant and crippling part in my MS.


Fatigue is an unimaginable exhaustion; but even the word exhaustion really is quite inadequate to explain how tired I actually feel.  It’s a debilitating symptom, a massively debilitating symptom of the disease that is not remedied at all by resting or by a little nap or even better quality of sleep.  And it isn't helped by the fact that the exact cause of MS-related fatigue remains unknown.


Some times I have a nap from which I can awaken dazed and confused and equally as tired as I was before I went to sleep.  Or I awaken not knowing if it is morning or evening, what day of the week it is, if I have been asleep for an hour or 24 hours.  And then I feel lazy.

I am not lazy.  People who know me, who have known me a long time will corroborate that I really am not lazy.  But that is how I feel.  I don't even have the energy some days to do the things that I enjoy doing, to do the things that I really really want to do.  I hate those days where my 'get up and go' 'got up and went'.


Fatigue is a 'hidden symptom' of MS.  It can be hard to understand.  It is difficult to explain.  It is difficult to understand that MS fatigue is very different to the tiredness and exhaustion that people experience as part of everyday life. 


Like everything with MS, the causes of fatigue can be complex.  Sometimes it can be linked to medication, sometimes to dehydration, sometimes to depression or anxiety.  So if you are feeling the effects of fatigue try and be a little bit kinder to yourself, and just try to accept that this is a cruel aspect of this cruel disease.

18 comments:

  1. As you know, I live with someone who has had MS for almost 30 years. Your ability to describe the symptoms and effects of having this monster of an affliction has meant that a penny has dropped in relation to fatigue. I thought I understood it before, so thank you Hanya!

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    1. I am glad that you find these posts helpful x

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  2. Fatigue stole my quilt guild meeting this week. Could not drive safely to get there. Fatigue sneaks up on me if I do not pay attention to what I am doing. Typically I get what must be done first, everything else is gravy. I save my energy if I want to do something in the afternoon by asking for help in the morning. Talk about feeling lazy! That's when I feel lazy because I know I could do what I am asking someone else to do but I also know I will likely not be able to participate in a later event if I do it.

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    1. We shouldn't feel guilty about asking for help, especially as most people are delighted to be able to help. But, you are right you do feel guilty and disappointed in yourself that you are not able to do more. We are not lazy and have nothing to feel guilty about x

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  3. I have had this symptom of the disease before and from the date of my dx. I have been called lazy by various people over the years! I became very thickskinned....knowing that people did not have any idea or understanding. The nearest I have come to describe it to people is to say you have flu 24/7. No sleep, no naps makes it go away.......this is a permanent feeling. I have borne many symptoms to do with this disease but wish I could have respite from this one!!

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    1. It is difficult to describe just how debilitating fatigue is, and upsetting. When you desperately WANT to do something, but your body won't allow you. Thanks for your comments.

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  4. As usual Hanya you have summed the condition up in your usual concise and exact explanation. Someone who has not experienced the extreme fatique this debilitating condition leaves you with can have no understanding of the havoc it wreaks on peoples lives. Keep strong and ignore the ignorant idiots who assume
    you are being lazy by choice. Like that person said to you " You are lucky you have a disabled persons badge and get to park more easily" .Morons is the word I would use or perhaps something a little more Anglo Saxon.

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    1. I am lucky in that I do have understanding friends who are prepared to help me to challenge peoples misconceptions and raise awareness of what it really is like x

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    2. Dearest Hanya, everything you write helps those of us who have no experience of the disease to understand how fatigue robs you of enjoyment in doing any of those things we take for granted.. It is also important for your friends to know that you can ask for help when you need it or want it - company, an outing, anything. Just say the word! Much love. xxx

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    3. Thank You Janet, it is very reassuring to know that I have friends there to help me when I feel as if I can't help myself x

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  5. This was the one symptom I hoped would go with treatment for ccsvi and guess what I was lucky, I was treated 3 years ago and still no fatigue, I still get tired spells but that is more because I tend to overdo things now I am spms and it is s battle everyday still but at least without the fatigue it is manageable. Your description is spot on and might help some others to understand their loved ones condition but more importantly other msers who beat themselves up about being lazy etc (I used to)

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    1. Wishing you well with your battle. You may not have fatigue any more but I can appreciate that it is still a daily struggle x

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  6. You might feel some days like your 'get up and go' 'got up and went' but your appetite for life is still the same Hanya. I will try not to complain if I ever feel tired again! x

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    1. Debbie, you are a friend who has such energy and enthusiasm for life that it is infectious x

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  7. Reading this moved me to the edge of tears. I've spent the last day and a half stuck in bed because I did too much yesterday morning. This hit way too close to home right now, and you said it perfectly. Losing my ability to find the words I want has been one of the hardest things to cope with for someone who used to write poetry and compete with the school Literary Team. Even knowing that there's a single word for that inability, and that it's in my brain somewhere, I can't dig it out right now, and it's driving me nuts!

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    1. Thank You so much for leaving a reply. It is so horrid when you want to do things, when your head says YES, but your body shouts NO. When even small tasks seem like a major achievement. When you get up showered and dressed, then feel that you need a nap. But you know that actually a nap won't help. I sympathise so much about struggling to find the right words, the 'brain fog' that causes that really is a terribly cruel symptom of this cruel disease, and is difficult to explain to anybody who hasn't experienced it. Take Care. x

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  8. Reading your blog, I can see why you have put your life into words for others to read about, I am sure you have found it almost alike a 'release valve' for you! As this curse we all have to live with is such a 'selfish' condition, it is only 'us' who know how 'we' feel at the end of the day! After 13 years D/X and having battled on and off with fatigue throughout, I have got a handle on it at the moment and i have always said, you can't beat it, just work with it and i am sure you have found blogging about it has been such a great help to you in coming to terms with it, I know I have, not that I will ever accept it you understand, can't let it know it is winning now can we! Bless you doll.x

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    1. Thank You very much for your thoughtful comment. I'm new to BLOGGING and it is sometimes difficult to put things into words and explain how it feels, but people are kind and understanding and offer encouragement. I feel that I am on a journey and I am certainly very glad for company along the way, if people feel they would benefit from sharing my journey x

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