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Fatigue

How do you explain fatigue to someone who has never dealt with a chronic illness?

When you first tell someone you have a chronic illness its difficult to explain the extent of how fatigue affects you.  Its not just feeling tired.  I find that most people get the side of fatigue that prevents you from doing certain physical activities, such as cycling, skiing, playing football, martial arts, etc.  But what is more difficult for non chronic illness sufferers to understand, or rather for me to explain clearly, is how it affects us in our day to day life, such as not only can I not play the sports I used to play but that some days walking my dogs, showering, climbing the stairs, or even preparing my food is way beyond what I can manage.  But again these are purely physical affects of fatigue, its the mental side of fatigue that is beyond most peoples comprehension or my power of explanation!  So, frequently I don’t even bother trying to explain as you don’t want people to think you’re whining again or that its all you ever talk about, but how can you complain no-one understands if you don’t even try to explain.  So here goes!  Most people don’t realise that it takes energy to think, to speak, to coordinate your limbs when you walk or try to write or type as these are all things most people do automatically without having to think about it all.  The more fatigue I feel the harder these things become.  When fatigue really kicks in for me I often start to slur when I speak, stagger as I walk which whilst is amusing at times as I often appear to be drunk its also extremely frustrating to not be able to communicate or move as clearly or as quickly as you’d like.  I’m extremely conscious of how this often comes across, I can feel how slow I am mentally, especially compared to how I was before, and assume this is picked up by others, I’m frequently assured its not noticeable but it doesn’t stop me feeling so self-conscious!  This in turn or at least for me leads me to be withdrawn and quiet in social situations, so when I’m feeling at my worst I’ll often avoid social situations, which in turn can make me feel quite isolated.   Even writing this now with plenty of time to think I still find it difficult to articulate how deeply fatigue affects me!

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For me on my worst days I can barely leave my bed, for most people I know this is difficult for them to comprehend as they obviously never see me on my worst days and they don’t see the struggle it is to perform the most basic tasks.

The more fatigued I become the more irritable, short tempered and bitchy I become, this affects my mental health drastically and often leads to depression, anxiety and a definite lack of self worth.  When you can’t do any of the fun things you used to do, when you can’t socialise comfortably, when working becomes too much you really start to lose any sense of who you are.  Most days I don’t even recognise the person I am now in comparison to who I was before!  Fun loving, sporty, party animal, where’d she go?!  And who the health is this boring bitch that took her place!!!

Learning to manage fatigue levels has been one of the hardest parts of adapting to my illness, accepting that I can no longer do certain things, that I have to learn to say no to people or events as its impossible for me to do everything I could before and that I have to pace myself if I want to be able to do anything at all.  The consequences of ignoring my body when it says enough are high, my illness flares and can take weeks or even months to return to anywhere near what it was before, not to mention the damage that is done to your body during the flare and the fact that some of this damage may not be repairable.  The downside of saying no to people so frequently is that after a while they stop asking.  Which is normal as who wants to keep asking someone out who rarely commits to anything!  It does however add to the vicious circle of isolation and feelings of a lack of self worth.

I don’t have any magic answers as to how to overcome the loneliness fatigue can cause but I can say that being patient with yourself, learning how to manage your fatigue to avoid huge highs and lows, not overdoing it on your good days (and yes I know this is extremely difficult and some times an event may be worth the pain and fatigue), all help keep me on a little more of an even keel!

Feel free to share any hints or tips you may have for how you manage your fatigue and the isolation.  For me a little yoga (when I can manage it), a gentle dog walk, meditating and reading as well as laying in my hammock when the gardens not covered in snow and dog cuddles when it is, all these things help me feel a little brighter and more balanced.

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Today I achieved absolutely nowt!

And I’m ok with that.

I’ve done a lot over the past few weeks, well for me it’s a lot. I’ve redecorated our lounge, I’ve organised a first aid course (with a little help from my friends), I’ve been on several decent dog walks, I’ve joined a book club, I went wine tasting, or just sniffing for me due to no longer being able to drink alcohol! I’ve applied for my French driving license, been to the doctors (which is a whole other post on its own!), I’ve been over to the new neighbours for welcome drinks, organised various appointments and deliveries in french and on the phone (which I really find difficult) and these are just a handful of things I’ve achieved over the past few weeks.

 

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First Coat of paint on the very first section
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Final section started.

 

Today as a result I’m shattered, so after I finally got out of bed, I’ve mainly sat in the sun in our garden and cuddled our dogs on the sofa. It feels lazy and at one point I would have really struggled with the guilt and frustration of not being able to do more. I’m not saying that I never feel that way anymore, because if the fatigue lasts for days and days and I start to feel like it’s never going to end I still feel guilty and frustrated. I don’t have a great deal of patience at the best of times but this can really test it.

I am however better at realising when I need a day off and when I need to do absolutely nowt! And that’s progress!!

 

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Mythos ate a wasp so he needed sofa time and cuddles too today!

 

If I listen to my body and take that day or two or three off from everything the fatigue often passes quicker and I can achieve more in the long run. I’m also much more pleasant to live with as my tolerance levels plummet and irritability levels go through the roof when I’m fatigued!

Its not always possible to take that time though, sometimes work and other commitments can’t be ignored and you have to push on. These are the times I find the hardest, as I know whats likely to happen to my health as a result but I can’t do anything to change it. And when that flare finally hits and I’m sat doing nothing waiting for it to pass, knowing I’ve got a mountain of things to do and it drags into days and sometimes weeks like this, I really start to despair that its never going to end. Thats when I try to look around at the things I have achieved and it makes me determined that this illness is not going to beat me.

 

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All walls completed! I even managed to put the new blinds up!!

 

So don’t feel guilty for taking time out, be kind to yourself and try to enjoy a little downtime in whichever way you can, for me it’s doggy cuddles, sunshine and a good book if I’m not too tired to concentrate.

Asking for help

It’s hard, it shouldn’t be but it is. In fact it’s something I fucking hate doing!

I’ve always been fiercely independent. Annoyingly so! I can do it myself was almost a mantra. It’s a habit that I’ve found incredibly hard to break, in fact until today I don’t remember the last time I asked someone to help me.

It was actually the response I received from my first blog post that pushed me to ask. I received so many supportive messages and not just from my close circle of friends and family, that it made me realise that there’s a whole load of people ready to help if only I’d ask. In fact quite a few would be annoyed to find out that I needed help and didn’t ask. How do I know that? Because I’d be annoyed to find out if a friend needed help but was afraid or too stubborn to ask.

Why would you be afraid to ask a friend for help? Well when the mental fog and anxiety descend like they did for me suddenly yesterday, it’s not always easy to think rationally.

Knowing all this why did I still find it so hard! One answer for me comes back to the independence and not wanting to feel like a burden. Ridiculous I know, but constructing the message to ask must have taken me 20 minutes plus the deliberation time to actually press send.

So what was I asking for? A kidney? Or a huge loan? No. I was asking if they’d be able to come to a meeting with me, as I didn’t want to go on my own because of the brain fog affecting the speed of my thought and speech process.

Even writing this I can feel the anxiety rising, my heart rate is rising, I feel hot and nauseous and slightly panicky. Why? The thought of my friends reading this and them knowing what a state I got myself into just to ask a favour is slightly mortifying. Despite all that I’m glad I asked, even if it felt like admitting defeat.