Lupus and Fatigue/Exhaustion/Tiredness

Lupus and Fatigue - yawwwwwn

This sounds weird to people that don’t suffer from Lupus but for me the most distressing symptom of it is the tiredness it causes and I know many fellow lupies will agree. 

The main symptoms of lupus (and there are pages and pages) are:

Fatigue (Extreme exhaustion)

Joint pain

Muscle pain/Spasms

Skin rashes especially on the face

Please see the link below for more information:

http://www.nhs.uk/Conditions/Lupus/Pages/Symptoms.aspx

I would rather be in pain than experience the exhaustion that so often comes with having Lupus.  At least with pain you can take pain killers, sleep it off, keep your mind off it but with exhaustion there is nothing you can do...  Even if I take a nap in the day and go to bed early I still wake up mentally and physically exhausted.  If I'm going out on a Saturday night there is no way I can do this without my 'party nap'.  I'd be asleep at 10pm.  I fell asleep standing up in a club once.  Well a few times.

Sometimes I am so tired that when people are talking to me all I can hear is, ‘blur blur blur.’ 

I’ll be walking home (gentle exercise is meant to help with the fatigue) and I feel like I’m floating, it’s surreal, it’s like I’m not really here and other times my legs feel like lead and I feel like I'm dragging myself around.

There have been times when I am unable to get out of bed, it’s that bad that I can barely move.  Even blinking feels like an effort.  I couldn't even lift up the covers the other day, I was weak like some sort of 90 year old.

Before I became unwell I had NEVER experienced tiredness like it.  The only time I have ever come close is when I used to go out partying until 8am and the next day you’d go to work and feel knackered.  That is close but still not quite as bad.

I can’t remember the last time I didn't feel tired.  I guess it doesn't help that I wake up several times a night with the dreaded night sweats but even when I go through spells of not having them, I am still exhausted.

The exhaustion was, I would say one of my first symptoms of Lupus.  I noticed about a year before being diagnosed that I just couldn’t stay awake after around 8pm and I’d spend all of Sunday lying in bed.  I’m sure my parents thought I was being a lazy cow but I just couldn’t physically stay awake.  I never used to have trouble getting out of bed in the morning; I was one of those annoying people that jumped out of bed without hitting the snooze button.  It’s a very different story now! Snooze, Snooze, Snooze. SHIT! I'm late!

Prior to diagnosis I went to the doctor about the tiredness and they tested me for the usual things, such as anaemia.  I was told, ‘perhaps you are depressed.’  God if I had a pound for every time I was told that before I was diagnosed I would be minted. 

I persisted with doctors but in the end I was told to take vitamins and rest as much as possible.  This didn't work.  I knew something was wrong. I was so energetic before, almost hyperactive. 

I plodded along and then all the other symptoms came out about a year after.  That’s a whole different story though.  I’ll do my next post about that as it’s quite a long journey I went on to finally being diagnosed and not being told ‘it’s in your head.’  ‘There is nothing wrong with you, you’re just stressed.’  Even thinking about it makes me feel upset.

So back to the point of this post – the next time you think you’re tired think to yourself,  ‘Well at least I’ll be ok once I've had a sleep.’ 

I know we all get tired sometimes and before having Lupus I’m sure I moaned about it but wow, if I knew what I know now, I would be so grateful for the days I had energy.

You just don’t realise how lucky you are until it all goes wrong.

I shouldn't get angry because I’m sure before I had Lupus, I was the same but it really is infuriating when people moan about small things and I’m like, ‘really?’

Think of it like this – imagine you have a broken leg, you’re in agony, its in a cast, you can’t walk on it, you can’t do a lot of things you enjoyed doing beforehand, then I rock up with a tiny bruise on my leg and I go on and on about it, ‘Oh this bruise is so painful.’  ‘It huuuurrts soooo muuuuch.’  Imagine that.  You would want to punch me in my eye.  You would be thinking, ‘Are you being serious?’ That is what its like to be me. 

If you are unfortunate enough to suffer like I do, for reasons such as illness or maybe you have a baby and can’t remember what sleep feels like, then all we can do is tell healthy people to shut the hell up.

I just want everyone who is fit and healthy to appreciate it and not take it for granted.  You really have no idea what it's like to wake up and think, 'I wonder what horrible symptom Lupus will chuck at me today. Will it be a rash?  Will it be severe joint pain?  Will my kidneys fail?  Will my hair start falling out? Will I be so tired I don't even know my own name?  Will the medication I'm on continue to give me horrible side effects?  Will I want to murder people as a result of 'steroid rage?'.  

If you are fortunate enough to have your health then please take this advice; wake up, jump out of bed, do a little dance and say to yourself, 'Wow, I am sooo lucky to have my health.  I am going to enjoy today because I can'.