Chronic illness: waking up everyday and surviving it like a boss.
Forgot to post this one the other day:
Ok so today has been pretty horrendous. No scrap that, its been fucking horrific. I went to bed last night feeling slightly rough but woke up feeling like I'd been run over by a bus. Or two. I'd forgotten to take my steroids and boooyyyy am I paying for that mistake.
Once I'd woken up I looked at the ceiling and said, "what the fucking fuck?" I was in agony. Instead of making Sami lunch like I usually do I just turned over, scrunched up into a ball and tried my hardest not to cry because no one wants to start their day crying and I didn't want Sami to have to leave me in that state. Sami brought me a tea which helped and after drinking it, I had a bath, changed my duvet (thanks night sweats), got back into bed and slept until around 3pm. Yep from 10am to 3pm even though I'd already had 8 hours sleep.
The thing is when I say 'I was feeling tired' what I actually mean is, this cunt of a disease (yes, I just used the C bomb) causes me to feel so exhausted I can hardly lift the tea cup. Moving towards the tea cup is an effort. Even drinking the tea is an effort. Hell, breathing is an effort. The tiredness or 'Lupus Fatigue' I feel sometimes is so awful it actually hurts. I physically feel heavy and drained - I'm like a deflated balloon.
I've tried many times to describe the fatigue Lupus causes but unless you've experienced it you can't fully comprehend the extent of it. For me, it's by far the worst symptom I experience. Worse than the joint and muscle pain which might sound mad but with the pain you can take pain killers and go to bed or find ways to take your mind off it (or lie in bed and wail like a banshee depending on how the mood takes you) but with the fatigue there is NOTHING you can do. Even if I sleep for 12 hours I'll still wake up with the same exhausted and heavy legged feeling. Sometimes the fatigue can last days or even for weeks. Then I'll have a week break from it and it all starts up again.
It can be very difficult to cope with and people who read this blog often ask me for tips on how to cope or ask how I cope and I never know what to say. The only suggestions I can offer are to have a nap before you go out (the party nap), don't over do it, stagger the housework, ask for help when you need to and when you do feel well ENJOY yourself! Oh and don't feel guilty when you can't do stuff. Easier said than done but its not your fault you have a chronic illness to contend with and beat the shite out of everyday.
Today (Tuesday 5th November)
I went to the doctors this morning to get my new sick certificate in order to continue to claim for employment support allowance and he noticed my engagement ring (it is super sparkly) so I told him all about it (I tell everyone that will listen; people in the supermarket, people at the bus stop, doctors etc) and I went on to tell him we went to The Maldives and I how well I felt whilst we were there. He said lots of people with Lupus really benefit from the warm weather and he said it helps relieve fibromyalgia symptoms. I can vouch for him and tell you it's true because 2 days after arriving home I was in pain again. I need to move to the Maldives (obviously).
I only went to get a certificate and ended up having to go for shed loads of blood tests (thyroid function, liver function, kidney function, full blood count etc) so I didn't get home until 4 hours after I left! Never mind. Its better to be checked I guess.
I'm home now, I've put the heating on full blast (docs orders) and I'm lying down on the sofa thinking about all the things I should be doing; sending my certificate off, emptying the bins, washing up, looking for a new phone contract, booking a photographer for the wedding....it goes on and on yet I'm still just lying here basking in the warmth of the radiator and watching Come Dine With Me. Ah well, all those things can wait one more day.
Right, I will do one thing and that's make toad in the hole (that's sausages cooked in batter for my American friends) I've not made it before so hopefully its good.
May as well open a bottle of wine now too... I'll probs be asleep within 10 minutes - the all too familiar feeling of fatigue is starting to wash over me. Welcome to my lupie world.