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A Glitch in My Energy Levels

10 August 2015

I know your all tired of hearing about fatigue but lately it's been on my mind a lot, well for most of this year if I'm honest. So I will just have my say on it and never open Pandora's box again. I say Pandora box because I truly believe fatigue is one of lifes 'greatest evils'. For me fatigue is honestly my major problem followed by several others but this is the most debilitating. I despise it and what it has done to my life.

When I say I'm exhausted or my fatigue is really bothering me, people look at me like I've got three heads with one eye each. "I know they say, I'm exhausted too."  "We are all tired." " Go home and have a sleep." "You will feel better tomorrow." Well I just want to scream, yell and have a massive tantrum. I picture myself lying on the floor kicking and screaming, arms flailing and doing this alleviates my urge to f@&%ing punch someone in the face.
Fatigue is not the same as being tired. Tiredness happens to everyone. It's universal. It is normal after a big day and a good nights sleep will fix the issue.
Well for me and most people with MS, a good nights sleep won't fix the problem. I can wake up and feel exhausted so exhausted, I have to go back to bed after an hour or two of being awake. I should say this fatigue comes in different levels, sometimes I manage what needs to be done like working but I'm exhausted. Sometimes it is so debilitating I can't deal and I simply can't manage anything. On these days I ring in sick. I spend quality time with my bed and lounge.
Ration your energy they say. Which I have done for quite a while now. Prioritise, which I have also done. Work takes nearly all of my energy, some days it takes more than I have. I am part-time which I did in order to conserve my energy and prolong my working life, still I am not managing. People don't understand.
"Well reduce your hours?"they say. I'd love to but as a single parent I cannot do this, any more than I already have. I barely make ends meet as it is. Its not like I have an extravagant lifestyle, I don't, we don't. We live in a shoebox. I pay rent, put food on the table, clothe my child. We don't go on holidays. We stay home.
For me to do a shift it is hard. It is hard for me to be on my feet, my legs for 8-10 hours at a time. It's taxing on my body and my mind. Having said that, it is hard for me to sit for hours at a time too. Sometimes when I come home from work I don't even have the energy to cook. Then there are the people who think I'm depressed. "Stop right there,"I say. Having been depressed and knowing what it is, I can safely say I am so not depressed, I'm just bloody fatigued. 
I have to weigh up every single thing I do and I have to ask myself. How much will this cost me? If I go out to dinner to see my friends am I going to suffer for days maybe? Or longer? If I do that will I be able to cope at work? Even going for coffee, I have to weigh up the cost to me. I have to shower, dress, do my hair, drive wherever it is. People say that's ridiculous but all these simple things take energy. It sucks and to be honest, my social circle has seriously dwindled because of it. On the up side at least I know those remaining are steadfast and true. I love them to bits.
I go to work, I'm fatigued.
I do the washing, I'm fatigued.
I shower and do my hair, I'm fatigued.
I cook, I'm fatigued.
If I manage to vacuum the house, I need to go to bed cause I'm done!
I need nanna naps to cope, I'm not even a nanna!
When I'm off work, my life is so much better. I can rest when I need to. I can generally manage, simply because I can rest my body and my mind when I need to. At work I can't manage my fatigue, I can't rest when I need to, I just have to keep going. I wish I was an "energizer bunny" but I'm not.
Sometimes I really don't know how I manage. Luckily, I love my job. Also I'm one of the lucky ones I can and do sleep. I sleep the sleep of the dead. So at least I'm lucky in this regard. Some people with MS have insomnia and can't sleep. Thank the gods, that is not me and I fervently hope it never is.
I often wonder what I'd be like if I couldn't do this. I'm thinking I'd be so bad, I'd be bed-bound. Then I think how awful it would be to be bed-bound and not be able to drift off. Oh, the thoughts I have!
Basically all I wanted to say in this blog is I am bloody fatigued and as such my quality of life is greatly affected. It prevents me from doing normal everyday things that I used to enjoy. It exacerbates my symptoms and I wish it didn't exist. I wish MS didn't exist. What I really wish is that people without MS could understand and maybe just for a day, live life in our shoes just to experience how we roll.
I know this is not possible and most of the time I can just deal with it but sometimes I get so sick of trying to explain my fatigue to people. This is just one of those invisible things that people without MS don't get. So I'll put this all back in Pandora's box and close the lid! But if I drift off whilst you are speaking to me don't think I'm rude, I'm just done concentrating for the day and my mind is trying to rest.

Comments (12)

Such a heartfelt post Rebecca. Thank you for bravely lifting the lid on this issue. It has recently been proposed that 'chronic fatigue syndrome' be renamed to “systemic exertion intolerance disease,”because the term 'fatigue' in the name chronic fatigue syndrome didn't quite convey the severity of the condition, and sufferers had experienced decades of having their condition trivialised as Yuppie Flu and so on as a result. I think the condition has many similarities with MS, and as many of us know, there are several distinct types of MS fatigue, and many different graduations of severity, and at the upper end of the scale, I don't think the term 'fatigue' really describes what we are experiencing either. Unfortunately there seems to be very little research into what up to 80% of PAMS say is their worst symptom, and as a result we don't really have a way of objectively measuring, describing or comparing a person's experience of fatigue. In my experience medicos are not terribly curious to look beyond the diagnosis of MS to consider what may be driving an individual's particular experience of MS fatigue, and by way of treatment there seems to be a limited array of drug options, and 'coping' strategies on offer, and that is about it. I wonder if that has been other's experiences too? I think it is very hard to explain to someone else what it feels like, if they have never experienced it. Terms like 'exhaustion' might be more accurate perhaps? If I were to try to explain it to someone without MS, the only thing I think comes close to it from my pre - MS days is a really, really bad case of the flu, when everything aches, and you barely have the strength to think clearly or drag yourself out of bed. As for motor fatigue, where muscle strength progressively weakens with exercise until they just stop functioning, I don't think it has any parallels, except perhaps for people who have pushed themselves to the very limits of endurance. Say like someone at the end of a marathon, or perhaps someone caught in a riptide...

Thanks Lawrie, I always look forward to hearing your thoughts and I do truly believe MS fatigue and chronic fatigue are very similar. Interesting they are thinking of renaming it also, I do believe it has been trivialized for along, long time. People just think its not serious?? Or it's not actually 'real'. Or your just lazy?? Mind boggling. :)

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Thanks Amber, it is so hard to explain and I really get so sick of trying to tell people what it's like. :)

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