Full time Lupie

If you have not yet delved into the far reaching depths and or earlier updates of this blog, you may not know that whilst having Lupus, I also work full time.  As many of us familiar with the disease know, it comes in all shapes and sizes (a bit like my waistline over the past 5 years) as well as severity.  To work full time for anyone is demanding, the relief of the approaching weekend and Saturday morning lie ins to recuperate, is notable if not from the sighs of my husband (the lovely and hardworking SuperMark) on a Friday morning, then the literary cheers, whoops of glee and photos with glasses of wine in hand on my Facebook feed on a Friday evening.  But for anyone working full time with a condition like mine, the reward of making it through a working week is far more of a celebration than the usual Friday night 'Beer 'o' clock' festivities.   To make it through to 5.30pm on a Friday when you suffer with chronic pain, fatigue, nausea, sore joints and a belly full of toxic medication is a rewarding and honourable achievement, because there was at one point in your life, when you thought you may never work again.

Don't tell me you're tired

Today I fear I may fail in my attempts to give you anything interesting to read. I'm on day four of five, not a regular occurrence, but it means today I have to dig into the depths of my energy reserves.
Battery levels are officially on low and the world is like that dreary slow voice you heard in your  headphones when your Walkman (for those that are old enough to remember) needed new AA's.
So today is a day of swamp walking (dead legs), fish bowl vision and speech that makes Lindsay Lohan look sober.
The main worry is the concentration, the fear of making a mistake and looking like an idiot. I have to just pray for the best and hope my lovely colleagues don't think i'm a grump.
I wish somebody could walk just one day in my shoes and see how difficult every step I take is and at the same time not wishing this selfish, consuming disease on anyone. I honestly think sometimes that whilst sympathetic, not many people actually understand how hard it is for me to work and function like everyone else. I put twice as much effort into everything I do just to be at the same level and speed, and to avoid massively the perception that I should be given an easier ride because of my illness.
Ultimately I don't have to justify my tiredness, I choose to explain as a reminder to why i'm going at a snails pace that day. So i'm going cut myself some slack, to work in management in a busy shop and stand on my feet 9 hours a day whilst having lupus, is bloody legendary. In the words of the long suffering SuperMark ( my husband).. "Lupus...only proper hard bastards get it."
You can tell he works in advertising..

Monday Monday...

I've been adamant from the start that writing this blog I wanted it to be personal, with article based posts reflecting personal experiences, thoughts and key issues that affect me and perhaps other lupus suffers. I didn't want to infringe on the widely more successful lupus bloggers out there by launching another blog of daily musings and helpful advice, I fear I may bore people to death with the vastly underwhelming activities of my everyday life! I also felt it better to avoid any vague possibility that I may start to get stuck and subconsciously fill my posts with vast amounts of useless guff that nobody wants to read. So I aimed for the approach to write longer pieces on a weekly basis that I could build throughout the week, a growth of ideas and reflections that I felt passionate about, dancing around in my brain like giddy elves screaming 'write me down yippee!' and so I obliged with snatched moments of scrawling whilst spilling my tuna sandwich on the staffroom table.
But this week I thought I'd try a break from the norm and try and get out a few of my lupie ramblings on a daily basis.. Mainly inspired by my husbands recent 5.30am starts in order to compete his storytelling ideas and creativity with other NanoWrimo participants.
So Monday, so far so good. As with every other working day i'm up 30 mins earlier than I really need to be.. The reason? The wonderful delights of my medicine box require my attention to make me resemble something human like for work. It goes a little something like this.
1 tablet at 7am to prepare my body for the onslaught of multiple medications at 7.45.
A gap for a bowl of porridge in between.
20 to 25mins rest before leaving so they don't turn my stomach into a knotted, churning time bomb.

Today like most days I feel like a walking advertisement for pharmaceutical companies - I could potentially earn a fortune if I was brave enough to wear one of those sandwich board signs saying "POWERED BY STEROIDS, IMMUNOSUPRESSANTS & OTHER DRUGS" all the while doing a silly dance and showing everyone how energetic I am that day.
Anyway, Monday is usually always a good day, i'm either rested from Sunday dozing on the couch or by a short and sweet shift at work that gets me home in time for the channel 5 Sunday afternoon movie. So my parting thought for today? Use Mondays to your advantage, there's plenty of days later in the week to feel tired.

State of mind

Today I am more tired than tired. The overwhelming desire to go home and sleep only defeated by the fact I have nobody to replace me at work due to the other manager being in holiday and the fact I am a stubborn arsehole and probably wouldn't let work down anyway.  Like clockwork when I am in charge and have loads to do, I am ill again with a cold and have two more days before I can rest. The rotten irony of this situation is fast becoming normality, along with having sick bugs or other viral nasties when I do actually have some time off to recharge my fizzling lupus batteries. This in turn spoiling any niceties or escapism that I had planned.
The thing with lupus is, no matter how hard you try not to let it control your life - retaining some semblance of normality outside of blood tests, hospital appointments and 12 tablets a day - it still always seems to have it's way.  Like a viscious circle you always end up back where you started. It's like groundhog day just without the eccentric antics of Bill Murray and that cute beaver thing.
You can ask my long suffering husband, I'm probably the most stubborn person you can meet - a trait that I no doubt inherited from my mother (I love you mum) -  adamant not to be defeated or told what to do by anyone, never mind submit to an illness that thinks it's ok to try and bump me off 5 months before I get married.
My greatest fear when it comes to my health, are the potential consequences of my unwillingness to relent to the sneaky hidden agenda of my illness. Everyday I live with the thought of am I doing too much? If I do 5 days at work is that going to make me tired? If I get too stressed is that going to cause problems with my blood pressure?? Then problems again with my heart?
But what is the alternative, am I supposed to hide away, rot in my own self pity? Or carry on, even if life is that bit harder.
The way I see it is you can go down one of two paths. You can follow the easy path but walk in the dark or you can follow the hard path, with sharp bends and steep hills but is well lit so you can see ahead.
It's so easy for me to say isn't it? I recovered well and finally have a job where I'm neither made to feel like an incapable imbecile nor treated like a nobody because of illness. I'm not reliant on battling the benefits system and have a wonderful supportive family. Some people aren't so lucky, and in this situation do they have the right to feel more defeated and take the easier option?
If you don't have that support network I can see how easy it can be to slip into that negative state of mind and use your illness to blame everything that has gone wrong or a reason not to try something new. God knows I've done it! But there comes a point where you realise that life just continues on, people will get up and go to work, cars will be washed, dogs walked and the world carries on turning, it's a simple choice. Go with it and try or get left behind. You don't have to run a marathon or jump out of an aeroplane, it's changing a thought pattern and then doing, instead of just wishing.
I have lupus, it doesn't have me.