Apologies and an update!

I want to apologise for my absence. I took a break from writing here because I was attacked over social media about this blog by some people who I can only describe as vicious and desperate people; claiming that it was offensive and that I couldn't possibly have ME/CFS. Apparently I'm patronising and just not unwell as I can work (part time) and attend the gym.

The people that attacked me completely shattered my confidence with my illness. I believed I was really getting a good handle on my ME/CFS; joining the gym and being able to attend, volunteer, attend college once a week and work 16 hours a week... that's something I thought I should be celebrating, I was doing incredibly well. Instead of being cheered on by fellow sufferers, I was penalised and berated for the things I was doing. I was exhausted and things hurt an awful lot, but I was managing with the support of my other half. I had already quit college and volunteering because I couldn't handle doing so much at once, but since those people spoke to me I haven't attended the gym or posted about my illness. Something that some supporters have scolded me for as they believed that the gym was helping me, almost boosting my energy and happiness - even just for short bursts. Alongside this, speaking about my illness and my achievements and downfalls are so far the only "therapy" that works for me. I am uncomfortable talking to people about my illness (not in an informative way, just in a... I'm struggling to cope with it kind of way); and so I use this as my way of reaching out, informing and educating others and it's my own tool for coping.

Too Long, Didn't Read?
I was attacked for being ill but doing great; I suffered for it, but I'm back.

Although I'm back, it's not all good news. I'm struggling with my MECFS at the moment. I'm tired and more than anything my ribs are hurting. I think I've got slipping ribs, but since it's nigh on impossible for me to get into the doctors recently, I'm making do and just dealing with it. It's agonising but, hey ho...

I work odd hours, some shifts start at 6:30/6:45am and although I usually only work 3-6 hours (up to 16 hours, usually) but the place closes at 11pm. So the hours are a little unpredictable and that means I don't have a regular sleep schedule, or weekends. I get a day off, back in for a few days and then another day off. The past couple of weeks we've been given a lot of overtime (up to about 27 hours) and I've been so so proud that I've managed to do those hours without much grief from my body, but it is exhausting and it's not where I want to be in life at all.

I never wanted to work in retail, I wanted to be out there changing lives, nursing, medicine, emergency response, a caring role. OR, something in entertainment, but my confidence is squished and I never had the chance to practice theatre. I always dreamed of being on set, working awesome roles and being able to use my hefty pay package to do good. But that was just a dream. I'm worried that at 20 I'm letting life pass me by due to illness and fear of doing something.

I'm considering looking for another job, less money, further distance but more regular hours as I think that would benefit me healthwise. I could really do with some routine in my life compared to being all over the show... preferably an office job or something that involves a lot less lifting.

On a positive note, my other half had a work review today and they're happy with him and lots of good stuff came from that. I'm super proud of him, he's my rock through everything.

That's me for now anyways, I'm not working tomorrow but I could do with a decent night sleep since I got about 4 hours last night thanks to a minor breakdown about being unwell and stuck in a rut. More to come another time.

Again, sorry for the lack of updates and I hope I'm forgiven and that all you fellow sufferers are hanging on in there, don't let anyone tell you that your illness isn't hard to deal with, we all have ups and downs, different disabilities in different ways, but the important thing to remember is that our illnesses are HARD, they are exhausting and difficult to deal with. Don't let anyone belittle your achievements, if that's getting a new job, or managing to wash yourself on your own that day, it is an achievement and it is fantastic, don't let anyone tell you otherwise.

It's not about what you can't do, it's about what you can do - no matter how small it might seem to another.

11 days since my last update!

Sorry about that, I've been feeling a little overrun with work. Been working all 'late' shifts which throws my entire sleep cycle out of whack because I need to sleep in longer so I have enough energy to function through the day.

I've broken down my post to "Doctors appointment" "Sickness" "Work" and "Christmas" if you just wanna skip and search for those headers for anything relevant you'd want to read. :)

Doctors appointment:

I had my appointment almost 2 weeks ago now where I said I'd give him a list of symptoms and see what he would say and do about it.

We haven't attacked the rib pain yet; 'slippery rib syndrome' will have to wait for a whole other appointment it seems. We talked about blood tests to check my vitamins etc. I booked one but cancelled it as I needed to go and visit my family when the appointment was supposed to be and since all my tests have come back fine before; I just feel it was wasted time I guess. I did however pick up some vitamins. (V Multi-Vitamins) which are apparently good. They're only available from Rowlands Pharmacy though, but you can order them online too. I had a look at the amounts of each vitamin and compared them to other brands. This one is high in a lot of things, so that's probably gonna be good for me. :)

Spoke to him about my implant, has to wait until after the new year as there are just no appointments available. Can have it done at the surgery though which is nice. He also gave me some pills ready for when I swap, hurrah. So hopefully, fingers crossed, that's my periods sorted out a bit come new year.

He doesn't think acupuncture is available for me, as physiotherapists generally use it for back pain... and my 'me/cfs' doesn't cover that. But since my back is all stiff and I could use physio for losening it up etc, might ask him about going down that route.

He is however refering me to a clinic in Liverpool which I think is ran by Action For Me, or at least that's who's guided me to it haha. (edit: Here's the link! Action For ME; Liverpool Clinic). It's a NHS clinic, but focusing on ME/CFS support. Whether this will do me any good or not I don't know. Personally I'm not sure talking to people about how shit my MECFS is will do me any good. Because they're in the same boat with bigger holes in theirs half the time. So I don't really want to be whinging on at them when they've got it worse.

But; they might have some good information and support type things that may help me get some form of decent treatment or management situation going on. So I'm going to try it.

Everything else dr said will have to wait till another appointment; or we can't do anything about it. So will try again after the new year. On the plus side, he kept referring to it as Chronic Fatigue, not ME or CFS. But after putting a referral through for me, when he rang me to discuss progress etc, he called it "Chronic Fatigue Syndrome"... not quite MECFS, but a syndrome, not just chronic fatigue. Maybe he got a good telling off from somebody about it when he made a phonecall. (Good!)

Sickness:

I've been downing a ton of orange juice (smooth! bit's are just unpleasant!) to try and stave off any colds and bugs etc that could be coming my way because of my housemate, who is incredibly unhygienic when it comes to germs and stuff; tends to end up making me sick and my immuno-compromised boyfriend also sick. (He has psoriatic arthritis, maybe I'll get him to write a blog too :p)... I also work with customers who have this nasty habit of putting 10/20 pound notes in their mouths whilst counting out change, and also coughing into their hands and handing my that change. bleurg, makes me want to heave. I'm never without my trusty hand gel now. Want to get one of those air disinfectant things too for around the house. I try not to blame people for being sick, but it does make me angry that they are not more careful about getting sick (I disinfect my hands after dealing with a less than savoury customer)... but then again how they seem to be even less careful about passing on their sickness. Especially to people like me and my boyfriend who's immune systems are less than fantastic at the best of times.

Work:

I unfortunately, cannot afford to get sick. Taking time off work would be extremely bad for me to do as I'm currently the least favoured 'young/new part timer' in my boss' eyes anyways. Maybe not the supervisors so much, but certainly my boss'. He gives me all the horrid shifts, and everyone else (2 people I'm thinking of out of the 3 'new part timers') are absolutely shit at their job but gets put on for double+triple pay days? Helllooo, they are shit, why are they getting all the good shifts and nice pay? I'm currently seething about this whole scenario. It's not just that they are shit; they don't try, they piss around all day. They do things like swing around on equipment leaving me out the front on my own dealing with customers on a BUSY saturday night. So yeah, little bit annoyed at  how things are working out at the moment.

I'm sick, working my little butt off constantly, try my best to get everything done. I'm even apparently doing jobs I shouldn't be doing in my role. But hey ho, let the pretty girl who doesn't do her job properly get all the nice shifts, overtime and perks, aswell as the guy who comes to work admitting he's high, stands behind the till scoffing his face doing sod all gets them too. No it's fine, I don't mind working lates every single time. Getting crappy 3 hour shifts every day of the week. (He knows I can't work mondays and fridays due to college/volunteering) so schedules me for 3 hours every other day instead. Not a 6/6/4 or 2, 8 hour shifts. Nope. 3/3/3/3/4. Thanks boss. Can really rest and recuperate when I need to cock up my sleep cycle for those shifts.

Christmas:

It's almost christmas and I've done all the christmas shopping I can, bought everyone presents except my other half... who I just outright cannot afford to buy for at the moment. This is making me feel royally crap. I don't even have the time or energy to look around for a little gift in town... I get paid just after boxing day though and fortunately something he wants doesn't come out until Jan, so he'll get a nice gift then too. Lots of presents under the tree and some christmas decorations up. Maybe I'll take some pictures of stuff when I can and post them too. Got my housemate his present too from me and Andrew, I think he'll like it. Need to put up the christmassy lights though, bulbs have gone and all that faff, so have to fix that this weekend.

Some higher energy/life force/lord etc. Give me some energy and health over the christmas period, please.