Sunday, 22 February 2015

Dealing with Chronic Fatigue


Disclaimer: In this post I wish to differentiate between chronic fatigue and Chronic Fatigue Syndrome. CFS is a condition that is diagnosed separately - however, some people, like myself, suffer with chronic fatigue due to one or other underlying conditionsFatigue-related issues affect people differently in accordance to severity and other factors. I am also speaking from my own experience, what may work for me may not work for others. 

I have felt the need to write a post dealing with this issue as it is something I feel that hasn't been spoken about enough in the wider media. I have dealt with constant tiredness/fatigue for as long as I can remember as a side effect of severe scoliosis combined with a mild muscular disorder. It is something that always been there. There isn't a day that goes by where it decides to tuck itself away for my benefit. Over the years I have been able to recognise patterns, find out what things tire me out and what I can do to work around it. It's taken a long time to figure it out, but it's half the battle. The other half? At the best of times my energy levels are totally unpredictable.

There are more fatigue-related conditions out there then you would think; muscular disorders, cerebral palsy, spina bifida, diabetes, sleep apnea, cystic fibrosis or even Chronic Fatigue Syndrome itself to name but a few. If you google "fatigue related conditions" you will be able to see for yourself how widely this can affect people.

MISUNDERSTANDING:
The most common misconception with having fatigue is that you are somehow seeking to be that way, or lazy. This, is in fact, incorrect. To go in hand-in-hand with this, there is the assumption that you are always tired, and never up to much activity. It is understandable that this varies from person to person, but I know in my own case - I can get bouts of energy from nowhere when I least expect it. For example, I went for a walk in my own village today and yesterday. It was the same route that I took - but it was easier for me to walk it yesterday than it was today. Why? I've absolutely no idea. It's a prime example of what I am trying to get at.

At this stage in the game, most people I know would be quite aware of my energy levels and how likely they are to be consumed quicker than the average person. However, I have always felt that my stamina has been underestimated at one time or another. As long as I have some things put in place - I am more than capable of getting the most out of my day.

BUILDING STAMINA:
You would think that building stamina/strength would contradict with being tired? Wrong! Think about it; if you don't service your car, put on the new tyres it needs and stock up on oil, your journey isn't going to be a long one. It's the same in this case. If I don't eat well and keep up with the exercise that I can do - I tend to go downhill quite quickly. This results in finding generally a lot harder; school, sitting, walking, anything. It's true to say I can't do the same amount of physical activity as everybody else, but whatever I can manage is important. And if I keep to my routine as best as I can, it means I'm at my best to carry out even everyday tasks.

SEATING/ERGONOMICS:
How I sit, where I sit and how long I sit is one of the most important things for me. If I am going to sit for a lengthy duration of time, I acquire my own seating. The chairs that I use are quite discrete, thankfully and easy to transport. They just look like a smaller version of an office chair with a couple of extra buttons and levers. This is more strongly linked to my spinal issue but I do notice that if I sit in the wrong type of seat for too long - it wears me out. My chair has covered some mileage, I have brought it to 3 weddings, away-trips with school, most of my work experience placements, my summer job last year, concerts, workshops, you name it - it's been there. Yep, it's red, yep, at times it sticks out like a sore thumb, but to be frank - I don't really care. I justify this by saying; Is it not better to be able to stay longer at an event in a comfy red chair than to go home home early for the sake of sitting on whatever everyone else is?

REST PERIODS:
"I think I just need a little rest" is forever going to be the most common thing I'll ever say. But when I mean little rests, I do literally mean for a short space of time. This is nearly always the way with anyone that suffers with chronic fatigue. For example, in my school I have a little room where I have an electric recliner that I can go in if I feel like I am about to keel over. Sometimes I go in for 10 minutes of lunch-time or for a free class if I have one. It's amazing to see the difference of what 15 minutes of a rest can do for me. Honestly, a short rest period for me could mean either staying the full day at school or going home early. It's quite important. On the other end of the spectrum, like for example last week I was busy in Dublin, you can read about it here. Together with the week, the weekend and the 4 hour car journey on Monday, I was quite jaded out. I had to take a couple of days for R&R, otherwise I would have been wrecked for the whole of this week. Once I had a couple of quiet days at home I was fit to get back to normal. Resting is in no way shape or form going to cure my fatigue problem, but it helps me to deal with it as best as I can. 

With this in mind, if I am planning a day away from home, I need to be able to plan where I can stop off for a quick cup of tea, or if I am going for a long walk somewhere new, I need to know if I can sit somewhere for a couple of minutes. Last week I was walking around Grafton Street and a wave of tiredness came over me like a tsunami - or just a little blip as I like to call it. I had to down-tools with whatever I was doing at the time, and somehow I managed to bring myself to the nearest coffee shop. I sat for maybe 20 minutes, got something quick to eat and some tea and I managed to go hell-for-leather around the place for another hour. Some people look at taking a rest, even a small one, as a sign of weakness. I disagree - I see it as being wise. If it means that you can keep going with the rest of your day afterwards, it's more so a sign of strength than anything else.

CROWDS:
Anyone that knows me well, knows how much I hate being amongst large groups of people. Admittedly, it's my weakest spot, either at school or out and about. My balance is compromised and it's extremely difficult to weave my way through swarms of people. I try my best to avoid these situations by getting to where I need to get to before everyone else. (You'll always catch me wearing a watch!) When it's all done and dusted I either leave a couple of minutes earlier or I let the crowd go out before me.

LEARNING TO ACCEPT HELP:
It's hard being Bionic Woman the whole entire time. There are occasions where I'm just having a particularly hard day energy-wise. There's no point being stubborn and struggling through it. An example of this would be having to link onto someone the odd time if I'm out walking. It might look odd to an outside person but you just have to do what you have to do. 95% of the time no one takes any notice.

It's incredibly difficult to fit everything into one post, but I think I've outlined the main points. Living with chronic fatigue can be an inconvenience, but I don't let it dictate my life. There are thousands upon thousands of people in Ireland alone, young and old that go through something similar for one reason or another. Understanding is the key to getting on the best that you can with this. It's important not to feel guilty because everyone's body works in different ways.

Whatever is going on in the world will just have to wait for an extra few minutes until I'm ready, gathered my breath and had a decant cup of tea. 

9 comments:

  1. This was really great! I'm glad your raising awareness for a condition that is probably really misunderstood. I know how you feel though. I have Chronic Migraines Disorder and so many people think it's just a headache but don't realize that it's a chronic neurological problem that tampers with your brain stem and a lot of people actually don't have a headache during an attack. I'm glad your doing something good

    Gina xx

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    1. Thank you Gina for your lovely comment. It's hard having t justify yourself about something that isn't clearly visible x

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  2. Thanks for sharing this! I suffer from multiple painful conditions that drain me of energy daily. I would like to mention that sometimes when I get the energy to do things that inevitably I always overdo things that end up taking me out of the picture for far longer than if I would have taken the time to just rest. Learn from me that sometimes you just have to rest before the activity you want to do and then again after it.

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    1. I'm the exact same Karen! If I know I'm going to an event I need to conserve my energy before and after! I frequently overdo it, particularly with schoolwork late at night. It's hard to say to a teacher every week you couldn't do all the homework, "Why?".. "Because I was actually exhausted" !

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  3. Thanks for sharing this, I didn't know anything about it before! x

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    1. Hi Amy. I'm glad you said that - it's exactly the type of thing I was hoping to happen, for new people to become aware about it. Thanks for reading! I hope you're well x

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  4. Thank you for sharing this, I think the Internet is a great way to connect with people who might suffer from the same or similar issues or diseases and inspiring each other!

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  5. Hey there, Your blog is so inspiring, I just thought i would let you know that i have nominated you for the Liebster award :)
    http://justimogen.blogspot.co.uk
    -Imogen x

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  6. Thanks for sharing this post! I've had fatigue for about 6 months post glandular fever! I've seen improvement but it's so slow! Pain in the bum! I can really empathise! X

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