Fitbit

Christmas this year was pretty hectic,quiet, but hectic, but I got bought a Fitbit Flex, which I'd recently seen someone else using... I thought it was a great way to track my activity and my sleep!

I got it in black and  I love it. I started using it straight away and asides from the fact that I snapped one of the wrist bands (the larger one - because I wasn't using it properly!) it's done me well so far. :)

Here's a little example of my sleep pattern on a really really good nights sleep for me.

Sorry about the format, it's a screenshot from my phone. The light blue shows the periods that I was awake. If you hover over each part it will show you for how long each period of sleep vs restlessness was. The tracker tracks restlessness by you're movement. If you're a heavy sleeper you can set it on sensitive, or on normal. I currently have it on normal as I felt sensitive was perhaps showing me more restless than I truely was...

Despite the fact that I've slept "well" last night, I'm still absolutely exhausted. No amount of good sleep helps, but I'm sure you all know that anyway...

Here is a graph of activity. I took the screenshot at about half 2 as you can see, before that I spent some time pottering about the house, putting my parrots outside in the sun and trying to rest up. It was basically me getting up, getting food, trips to the bathroom, etc. This is basically a pedometer and it helps me to see what days I've done too much and should expect payback.

My average steps when at work is between 5-7 thousand. On longer days, maybe when I've had to do something before/after I can see how many steps, if it goes over 7 thousand, Ii know to expect a struggle. I do find it very helpful.

I can also set 'step' goals, (mine is generally around 6 thousand), my fitbit will buzz on my wrist when I meet that goal, which is a nice reminder to slow down and to really start pacing myself!

Maybe I'll post some more about my goals/targets etc, some other time, but for now this is just a little insight into my time with the fitbit. :)

It's been a long time, too long, since I last posted on here, I've wanted to post new updates but I've been too fatigued and put it off for a later date... rinse and repeat!

I'm hoping to start again fresh, this year has been traumatic in many ways. From family health, losing my babygirl bunny, dealing with my condition, (turning 21!!), work, etc. So I'm hoping to try again.

I've recently been inspired by other bloggers to get back to it as they knew how it helped me last time to deal with things and accept some changes in my life. I had people message me thanking me for saying some things and how it was nice to hear from my point of view about ME.

First of all, I'd like to clear something up; there is a HUGE debate about the name of the condition that I live with, but I will refer to it as ME, or MECFS (MEcfs, ME/CFS) or any combination of the previous. It does not mean I'm an advocate for keeping ME known as Chronic Fatigue Syndrome, nor a believer/disbeliever that they are two separate conditions entirely. I know my symptoms, I know what I deal with and at present it is most well known as MECFS in the circles that I come across.

I'm still on twitter, at @catgisicki, it's generally just MECFS stuff with the odd thing about my pets or daily ramblings. It's where I post about blog updates too, so feel free to follow as I become more and more active on here *fingerscrossed*.

I'm a bit late of starting the whole "new year, new me" type thing, but hey, it's a bit cliche to do it on January the 1st anyway isn't it, so I'll do it now!

Here goes....!

Update

So, it's been a while, sorry about that. Since Annie passed away we've kinda been so busy with life in general that I haven't really had the time or energy to update here. We've got a nice little happy surprise in our life now which we'll be keep secret for a little while, but it's something positive in the middle of everything else that's so bleak. (No I'm not pregnant, or engaged!)

I've had to give up the gym, sigh, I was hoping I could just stick at it since it made me feel so good, but in all honesty, I never had the energy to actually attend so it was a money sink and well... I couldn't keep up with it. Just feels like another notch against me, having to drop something else I once enjoyed.

A friend of mine who also suffers with ME/CFS  has been incredibly helpful in the past couple of weeks. I'm suffering more than usual with aches and pains and something she's recommended me trying is crutches... now I'm open to suggestions of any treatment and help, but something that visibly shows a disability is a little daunting. My knees ache something awful, especially if I've used them... or even if I haven't - they seem to just be blocks of pain. I also might be entitled to some financial help from the government? When really sick I applied for DLA, but was declined after they didn't even read my form that I had sent off to them describing my sickness, so went purely off my atos assessment, oh joy. (That was over a year ago, and something I've got a draft waiting on as it's so tough to write about). Anyway, apparently because I work 16 hours a week, I might be entitled to ESA which I think is being changed to PIP (Personal Independence Payment). Which would give me a little extra money a week... kind of to make up for my lack of ability to work more.

I'm looking at applying for it, but I'm worried because of my medical history in regards to turning down treatment. (Something else I need to post about) but to sum it up, I refused hospital therapy, which was basically CBT and teaching people how to pace and stuff. The trek to the hospital itself was absolutely exhausting, I still have all my information from my previous CBT sessions and know how to pace. I didn't see the point in taking up a space that someone else (who hasn't had past experience with those therapies) could use. I'm also not currently on antidepressants as I felt they made me more nauseous and headachy than usual if I missed one, which  I did often thanks to brain fog. They also left me in an even more zombie like state than before taking them... so decided to just drop them too. So I think applying for something like PIP will probably result in a rejection as it appears I'm "hindering" myself and not "trying to get better" or something stupid like that. I don't know.

I wonder if any of my readers who are similarly-abled, use crutches or other aids?

Need to go to bed now, I've been more exhausted from this weekend because it's been my partners birthday and we've also seen relatives, so spending most of my day in bed at the moment. *sigh*

I think it's time for an update about Annie...

Annabelle (Annie) Gisicki-Goacher was born around the 19th July 2011. We brought her home around 8 weeks after that. She was a little "blue/grey" dutch bun. We got her from Pets At Home in Leigh (UK). Andrew wanted the black and white dutch bun at first, but I was besotted with this little girl and he quickly fell in love too.

We boxed her up and brought her home, set up her new cage in our kitchen and welcomed here into our lives. We expected to have her for at LEAST 6 years. We knew that having a rabbit would bring us heartbreak after a few short years (compared to parrots - who we should have for 30+) but we didn't expect to fall so hard for her so quickly and then to have her taken from us not even 2 years later.

She was precious to us; she was so bonded to us. She used to mark our fingers with her chin. She used to bound over fiercely to give us love and play 'chase me'. She used to demand the top part of her double hutch was left open so she could 'cuddle' the side of it as she napped.  It was adorable.

After over a year, we got Annie a partner in crime. "Bigfoot" - a French Lop with a lotta attitude. He's pretty chilled and she's highly strung, so they're a great pair. Before we got Bigfoot, we got Annie neutered. We knew we had to at some point anyway as Dutch rabbits have an incredibly high chance of getting tumors on their reproductive system. (We had her spayed sometime in September 2012)

Anyway, to make what would be an incredibly long story short. She got sick on the 7th May. She was walking funny and being very skittish - very out of character for her. So I rang the vets, bundled her into her carrier and dashed her down to their practice. She was seen to within 20 minutes (felt like an absolute life time) and Iain, our vet, decided she would have to have xrays and potentially surgery as her intestines didn't sound okay. So we presumed a blockage. He said he'd keep her overnight and take her home with him after surgery so he could keep a better eye on her without having to too and from the surgery himself. We felt it was a better thing to be doing for her as we'd rather he was with her the entire time then her getting sick for the few hours he's back at home! We waited for the phonecall about her diagnostics and he told us he found nothing on the xrays and so had to do exploratory surgery. We were then told that she had fatty lumps on her reproductive system. He removed them, sent them off for surgery and told us she was dealing with the surgery well.

Next morning we had another phone call to say that although Annie was doing well from the surgery, eating 'okay', drinking etc. She had lost all sensation in her back legs. We were obviously very conflicted as to what to do, but decided to give her a shot and see how she coped with it. We brought her home later that day and it was horrible. She was unable to clean herself properly and looked messy and so unlike our bun. We had to help her pee and she wasn't pooping at this time; but eventually had to help her do that too.  She was set up in her own little 'hospital' cage and wasn't eating. After 2 days we managed to get her doing her own thing and eating some.

But only if it was warm, smushed with hot water, and off her green spoon!

She was approximately 14ml of meds per day. (Her metacam was measured "by kilo") and my partner asked me to make up a chart of meds for him!

Annie began to learn to deal with her current disability. Our suspicions were that E.Cuniculi (a worm) had been "activated" in her system after the stress of the surgery, causing paralysis. Our Vet had consulted with many others around the UK about the cause of her sudden paralysis after surgery and most agreed that this could be it.

Here she is enjoying some downtime with mummy. She was able to clean her paws and face properly when lay like this as when she was sat down, she'd keep scooting backwards by accident!

Video of her grooming herself happily on Friday 10th 2012

Unfortunately, despite all our best efforts, daily trips to the vets for check ups and shots (to get her gut moving, etc) she never made it past Saturday night. The paralysis began progressing and moved up to her lungs so she struggled breathing. We rushed her to an emergency vet's to see if we could do anything for her but we decided that it was unfair to let her suffer any longer and that we should put her to sleep. She'd been an absolute trooper through the entire ordeal and had smashed down every brick wall she was faced with up until this point. But she just couldn't this time around.

Me and Andrew were with her the entire time and cuddled our little princess as she went to sleep for the last time. We've both never been so heartbroken about losing a pet because she was our first together and my god she was something special. We could have done nothing more for our princess, our binkybum and we're so sorry we couldn't fix her.

We got the results back from the samples Iain took from Annie's surgery and it appears she'd had a bad reaction to the sutures from her spaying months before; which caused the discomfort and blockage; which in turn caused the E.cuniculi to flare.

We hate that we got her spayed for it to result in this - but as rabbits (especially dutch!) have such a high risk of developing tumors, we knew we'd have to anyway. Alongside this, rabbits (when neutered properly) should have such a low chance of developing side effects from things like sutures (rabbits have their own type!) but our girl was just that unlucky one in a million case. Our biggest mistake was not worming Bigfoot as soon as we brought him home. We had both our buns vaccinated and Annie was wormed originally; but we were so wrapped up when we got Bigfoot that we overlooked worming him and so we believed that he passed on his E.cuniculi (which can lay harmless in a bun for years) to our Annabelle.

So yes, we blame ourselves, but try not to let us eat us up. We did everything we possibly could for Annie in the time we had her, from the day we brought her home until the day she died. She had the best care, the best home, the best love and treatment she could possibly get. But this is just a reminder for all who skim over preventative health care for their buns; don't. It really can save your buns life.

We do, however, want to say a massive thank you to Vets4Pets Warrington for their outstanding care for Annie and their ability to go that extra mile every single time. Every phone call of "Just an update for you all, she pooped!" was met with cheers and delight from the staff; you really felt they were with you every single step of the way and I could not say a bad thing about their treatment of my baby girl (and my other baby boy too!)

Annie passed away on May 11th 2012.

Forever in our hearts babygirl.
xx

Stephen Fry and depression

This is a bit of a rambled post thrown together, for that I apologise.

"To me mood is the equivalent of weather. Weather is real. That’s the important thing to remember about weather. It is absolutely real. When it rains it rains. It is wet. You get wet. There is no question about it. It’s also true about weather that you can’t control it. You can’t say if I wish hard enough it won’t rain and it’s equally true that if the weather is bad one day it will get better and what I had to learn was to treat my moods like the weather. On the one hand denying that they were there and saying I can’t… I’m not really depressed. Why should I be depressed? I’ve got enough money. I’ve got a job. People like me. There is no to be depressed. That’s at stupid as saying there is no reason to have asthma or there is no reason to have the measles."

- Stephen Fry

This

I find this quote by Stephen Fry (for those who don't know, he's pretty famous, pretty nifty and also a manic depressive/has bipolar disorder) to be so SO accurate and true. I just want to scream it at people who shrug off depression and mood disorders or ANY illness that isn't "physical".

I AM SICK. I can't just stop being sick because I really really really want it to go away and I wish that people would understand that. Through what feels like most of my life I've been unwell, there was no "good reason" for me to get sick. Some circumstances may have contributed to it, but nothing set in stone... I'm just sick.

So why am I unwell? Because I am. It's just there. Nothing will make my illness go away. It will waiver and change like the weather, storms and sunny days.

I have friends and family who are depressed for "no good reason". So what? Do you need a good reason to catch a cold? No, so you don't need one to suffer with depression either. To people who know someone who is depressed for "no good reason", don't ever tell them that. Depression and so many other illnesses are soul consuming and they don't need people attacking their inability to "get over" an illness.


Rage over. Wish people would treat all psychological/invisible illnesses the same as they do with most physical illnesses... with respect and some consideration that the person is suffering and don't need more grief from you.

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.

Gym post #2

So, yesterday (as I posted earlier) I joined a gym.

I did light exercise, 20 minutes on 'easy' on a cross trainer. About 5 minutes doing some rowing on the rowing machine and then a couple of lengths swimming, jacuzzi time and then steam room.

I felt amazing. I expected to be a little sore today and I'm pretty happy to report that I'm only ever so slightly more sore than I usually am.

After I did a blog post, I decided to go for a walk into town to purchase some gym appropriate clothing. I found what I wanted, got some food and came home... where I promptly crawled into bed. So, although I felt really pumped and awesome, I'm certainly paying for it now. I'm exhausted and worn, but it is not going to put me off. My body hasn't been worked in a very long time and I'm determined to see this through. (I have a 6 month contract!)

Bring it on.

Officially a gym member!

Shock horror. A girl with ME/CFS has joined a gym.

It's absolute madness I know, so hear me out;

Yes, I am constantly fatigued, in pain and all the fun symptoms that you have with having MECFS. However, before (and the first few years that) I was unwell I was also incredibly... dare I say addicted? to exercise. I absolutely LOVED dancing. I even took up martial arts (had to drop it quite early on however...). I used to compete nationally in a team. I'd be dancing three days a week and then practice when I wasn't at the studio! I used to go on long walks, help muck out stables, I even (last year) took up horse riding but unfortunately money and Perrin treatment collided and I had to stop.

So anyway, I've always been an exercise nut, I enjoy the workout, the feeling you get after pumping your body. Especially if it's dancing, or with animals. Heck, if I had a dog you could count on me doing agility trials with them!

The exercises I'm doing at the gym are quite light. Least resistance, short times etc. Mainly walking exercises, such as the cross trainer. I'm also quite taken with the rowing machines and used that for the first time in a very long time yesterday!

So overall, my gym work outs are going to test me, but they're going to be incredibly 'laid back' work outs. I just feel that I need to get fitter. I can climb a set of stairs and then be out of breath and I honestly don't think it's helping my MECFS with me being so unfit! So I'm hoping I can hit just the right amount of balance for me to not kill myself at the gym, but to get fitter and improve my symptoms.

There is also a pool there which is fantastic as it helps ease the pains in my joints etc. After the pool you can also use a jacuzzi... the warmth is SO SO soothing after doing a work out... and the finally a steam room. My boyfriend said I was practically glowing after being there.

I've signed up for 6 months for a whopping £38 pcm. Eeek! So my pay slips are taking quite a bashing. But I'm thinking that it will be worth it. It also gives me and my boyfriend a chance to do something together away from the house; we struggle to find time for each other at the moment so it's nice to set a few hours aside for us to work out side by side (occasionally ignoring each other for music!). It's great so far and I love it.

I just need to invest in some real gym clothes as mine arn't really that appropriate!

Happy New Year!

Happy New Year everyone;

Feeling a mixture of positives and negatives about this year. Lots of things are going to be changing, so fingers crossed it all works out for the better.

Our housemate is moving out which is both good and bad. It's the start of a new chapter for all involved. Finally me and Andrew will have a family home to ourselves, making it as we would like. Personally I'd rather move and start afresh, as it makes me uncomfortable to be moving things into his room when he's left. But we have to make do with what we've got at the moment.

So far my new years resolution is to try and have a more positive attitude about what I CAN do instead of what I can't do. I'm tired of restricting myself and so want to try and be as non restrictive as I can in the things I do. Obviously I know I have limits, but I'm working on that.

At the moment I'm currently not doing any volunteering or my college course, so that has made my life a lot easier over the past few weeks. I still have some work to finish off however, which is stressful. I look forward to going back, but at the same time it's nice to have had a break from another stresser.

I've started doing my back stretches more and more to help increase my flexibility. It was something I was taught during my Perrin Treatment; I might not be able to do the entire treatment right now, but I'll do what I can when I can :)

The stretches involve putting your hands grasping near the back of your neck with your elbows forward. Whilst doing this you should try and turn your body, waist upwards to the left as far as you can (without hurting yourself!) and then again to the right. Do this three times then change position of where you hands are.

Next hand position is with them crossed across your chest, holding onto your own shoulders. Turn your upper body left and then right again, 3 times over. Third hand position is having them crossing your body and holding on to your sides. Repeat with the turns.

I'm also doing some shoulder rolling and shrugs. All this is to help loosen up my back which eases the pain a little. I'd recommend it as it doesn't even take 5 minutes :)

I've also invested in a Lumie Clear, which is a light treatment for spots. I've been feeling incredibly down about my appearance recently and my stresses haven't helped my spot outbreak. It cost a fair bit but I'm hoping to see progress soon. If this seems to show to work, I'll invest in a Lumie brand lightbox too. (Priorities Cat... priorities...)

Anywho, signing off for now, will post some more later :)

Perrin Technique Videos

I thought that I would upload the videos from youtube explaining the Perrin Technique from Dr Perrin himself. There's 6 in total and I feel that he "dumbs it down" enough for us without a scientific background to understand. I've put them all here because people seem to check my blog out mostly for the Perrin-y stuff. 

I used these videos to help make the decision about whether I wanted to try the treatment or not. After watching and learning more about his technique and the symptoms that my body presents without me realising it, such as the back issue, the bubbly nodules near my chest (don't be disheartened by the way, I didn't notice them until he pointed them out to me in my assessment!). I up until my assessment from Dr Perrin believed that I could have something else; that my diagnosis was wrong as nobody understood this illness. When I got home from my assessment, I cried. He'd shown me everything that was wrong with my body and explained it and tied it to my MECFS. I cried because that diagnosis I'd had a year ago meant nothing to me... this diagnosis seemed real and finally; I knew what I had. 

I cried because this is a horrible illness. I cried because I might not get better, this wasn't a cure. I cried because this treatment is expensive. I cried because someone finally understood what was happening to my body, more so than I did. I cried because someone had offered me a helping hand when it was really really dark and unsteady out there for me. I cried because I finally had hope that I might just get better.

One day I'll do a full rundown of the assessment and what Dr Perrin said to me, but I'm a little drained already from the past two posts and I have to go and make breakfast/dinner (pancakes!) before work... then work... then come home and eat some more. :p

Here's all 6 videos, I take absolutely no credit. All Hail Dr Perrin etc. You probably want to make them fullscreen, they're small :)

All videos uploaded to Youtube by thepointofhealth. Just putting it out there for more to see.

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.

Preference for font...

Please, by the way, if you have any preference for font size (I myself prefer small) let me know. I feel that by using small font I may be making it more difficult for some people to read. Will make it larger if people let me know.

Thanks :)

Doctors appointment tomorrow

at 2:30;

I also have to "fingers crossed" wait in for my broken phone to be collected, at some point tomorrow (hopefully they dont say they'll arrive during my dr's appointment or i'll be gutted) and I'll also have to pick my rabbit up from the vets at some point tomorrow, hoping that that is okay to do after my doctors appointment...

As I mentioned in my last post, he doesn't seem to appreciate what ME/CFS is... he kept referring to it as "chronic fatigue". If only it was that straight forward. I need to compose a list of things I need to make sure he's aware of. This list is going to be pretty gritty, so feel free to skip. :)

• chronic fatigue
• aches and pains everywhere, mainly back, shoulders, legs and arms...
• cold extremities no matter what i do...
• brain fog/can't focus
• dizzy spells, especially when standing up after any amount of time 'down'
• depression with suicidal thoughts
• irritable bowel syndrome
• overactive/irritable bladder
• everything hurts when im touched at all. :(
• horrid memory...
• sensitive to noise and light... it hurts again.
• joints hurt, but no they are not inflamed or swollen.
• mood swings.
• constantly on my period, i have about 3 days off then back on again.

There are my symptoms; although there may be more, I can't recall right now, but I'm sure thats the most of it anyway.

What I want to ask him about

• get this implant out of my arm before i shred it out.
• ask to be put on the contraceptive pill that has oestrogen in it; i've read studies about people who have MECFS getting slightly better during actual pregnancy... and since the oestrogen contraceptive pill tricks your body into thinking your pregnant, well, i might just catch a break and it reduces my symptoms.
• acupuncture for the aches i'm feeling.
• ask about PoTS
• funding for perrin treatment (despite it being an absolute pain in the ass to get to a clinic...)
• refusing antidepressants, but i want blood tests to see if i'm deficient in anything since my last blood tests. 
• b12 shots, a friend of mine showed up as not deficient in b12, but apparently her spinal cord was depleted or something... gonna ask for the shots anyway and see if that helps me.
• ask where i would stand on quitting work and getting disability support.

i was declined previously because they didn't read my application form and went purely off the asos examination (they admitted this in my reply) and part of their reasoning is that i didn't visit the doctor enough... hello? have they seen what the nhs offer for people like me? i'm not wasting the doctors time, so i get punished, excellent. more about that later in another blog post however.

I don't want to attend a support group; because I'd never be able to make the meetings (work, college, etcetc... or my mecfs) and I don't actually fancy sitting around talking to people about how shit things are for us all, getting me angry that it is so unfair that we have something noone can do anything for...

I'm in bed and exhausted right now, but need to get up and get ready for work at 6pm until 11pm. It's going to be painful, it's going to drag and I'm going to feel like absolute crap during the shift. 

Wish me luck. :(

Emotional day today

Today has been a real trainwreck of a day.

First of all, I struggled to get up from bed, as I'd been awake till around 2am having a warm soak trying to ease my pains and relax after work (Yes, I can work part time, but just about...).

After struggling with pains and fatigue etc, I got up and got ready to go to my one-day-a-week college class. Caught the bus, late, etc, then a song on my ipod came on. "Josh Groban - To Where You Are"  which made me blubber as it's the song we played at my grandads funeral 2 years ago (come the 16th dec).

Then I got to class and I got even more emotional and upset as we were given an assignment which was about goals and achieving them in our work roles... and what could prevent you from achieving that goal. Immediately my mind jumped to "mecfs, of course..." and how that is already preventing me from getting what I want and need out of my current course and how it's so very unlikely I'll be able to do veterinary nursing because of it. Veterinary Nursing being my career choice, etc. I am struggling with my 16hrs (average, sometimes it can go up to as far as 20 hours) at the co-op, stacking shelves, serving tills... getting sick with customers coughing into their hands and then handing me their money *shiver*. I then do around 6 hours ish at Lite Ltd, my 'college'. and then a days worth of volunteering (which I quit recently as I did NOT like the manager and the conditions I had to work in) and then assignments on top of that. Fairly 'easy' assignments too, if they wern't god damn posters which I hate and get stunted with. Veterinary Nursing would be around 35-40 hours of work and heavy assignments on top of that. At the moment (/ever depending on how things go...) it doesn't seem that I'll ever get to be a veterinary nurse. :(

Hit a momentous low today too... my tutor at Lite told me to go home and get a doctors appointment and demand to get sorted out with something. I don't think she really appreciates just how little there is out there for people like me. Antidepressants were not working for me and so I am no longer on them, or ever want to go on them again. Counselling... well the therapies I've had, I've learnt all the techniques and apply them to my life when I can, but for the most part, no, talking about me having mecfs, will not make my mecfs go away. The only positive side of therapy is that there is someone listening to you. But even then, they don't understand and tend to make remarks that are incredibly hurtful, unhelpful, or just completely irrelevant. Then there's the GET (Graded Exercise Therapy) which I might get referred to; but I didn't even get a confirmation letter back last time and you can guarantee I'm not hauling my ass over to Stockport to participate in some exercise that is more demanding than the travel there itself. Counterproductive, yet again. I've heard lots of nasty things about GET too and I'm not willing to put myself through hell because some dr thinks that going for a good ol' jog will rid me of my symptoms.

Anywho, went on a bit of a ramble. My tutor told me to ring the doctors and I did. I tried to get an appointment with the female dr I usually see. Couldn't as I'd be working the only time she was available.. rang back again when I decided I don't need to see her, any dr will do; all booked up. I turned to twitter to ask for help. Do I go to a&e when having a breakdown/feeling suicidal? Will the walk-in-centre (apparently Warrington doesn't even have one...) suffice, what can I do to get me through this time. Anywho, twitter came through for me again as a very lovely lady I speak to (who also has MECFS, but has gotten better by miles apparently!) told me to ring back the doctors and ask for the duty doctor; to basically get an urgent telephone consultation.

After waiting half an hour for him, we eventually spoke. He was soft spoken and seemed lovely and I've seen  him previously when visiting him (for my other halfs appointments)... but he kept calling my MECFS... "chronic fatigue". No, Dr, no. First thing we'll be talking about when I see him on Monday is how it is not just chronic fatigue, it's a whole range of fantastic things. As I just mentioned, we booked an appointment for Monday (much better than the "sorry, we have nothing available" rubbish I'd been given on the phone not long earlier. The Dr asked me my symptoms which I reeled off; pain, brain fog, fatigue (obviously!), depression, irritable bowel, irritable bladder... I then froze and forgot the rest, but he stopped me anyway "thats a lot...". He admitted he didn't really know much about MECFS (or "chronic fatigue" as he kept calling it) and will have to look into it some before Monday, he will look into support groups and what we can do to help me. I told him about the Perrin clinic and how I had to give that up and that was the only thing that was working for me. I told him I had taken myself off antidepressants because they were not helping and only made me sick with headaches and dizzy spells (on top of the usual!) if I missed one; which I did a lot. After going through antidepressants, he resigned to making me the appointment and saying we'll discuss more then.

I have a feeling I'm going to be fobbed off with antidepressants again; I don't think so.

Again, a friend of mine who used to have severe MECFS told me she had B12 shots which had helped her, so will bring that up and see what is said. Will ask for an indepth blood test to see if I'm lacking in anything that might help me cope some with the general shitness that is MECFS.

Sorry for the ramble, but there you go. My day so far... now I'm in dire need of some real food as I haven't eaten today, asides from a slice of ham... and onion.

Twittering

I've started using twitter a lot more recently, mainly to look into the #mecfs hashtags and seeing what gems of info, or insights into peoples lives I can find. Was nice to see that my little bit about the Perrin Technique was retweeted by the ME Association. (twitter: @MEAssociation)

Interesting blog on the Perrin Technique by@catgisicki: http://bit.ly/VmSZnh  #mecfs

If my little snippets can help comfort people, educate people, or even just amuse people then I'm quite happy with that. :)

My twitter account is @catgisicki, it's typical teen stuff, me/cfs complaints and retweeting stuff that amuses me... and pictures of my pets. But if you're reading my blog, it's probably for the mecfs stuff, so you're probably better off here!

But I do post updates on twitter when my blog is updated...

I'm rambling. thanks ME Association for promoting my snippet and maybe giving someone that nudge to go try Perrin! :)

Update: Perrin Technique

Last November(?), I started a treatment for my MECFS. The doctor was fantastic (Dr Perrin). He explained the treatment and the potential cause for my illness so well and in so much detail I genuinely believed he has a grasp on this whole thing. He does not parade around that he has some magical cure, it's a long and gruelling process to even feel better (with plenty of lows in between the highs) but it is something more than nothing. And a whole lot of nothing is what we've all had so far.

Dr Perrin has a book out, which I borrowed from my local library before I started treatment; I'm not one to rush into things and believe it's going to fix me, so I was incredibly anxious and non believing about it. After reading the book, as did my boyfriend and also my housemate. I got given their verdicts and then I decided to go for the treatment.

Whilst I was on this treatment, I felt horrid. I was told that because of how it works (probably a post for another day, running on limited energy!) I am going to feel a lot worse as my body gets rid of a ton of crap, before feeling better. I was bed bound, I was sick, my stomach was horrid to me, my energy was lower than low... and then I started feeling better. Whether this coincided with it getting towards spring and then summer, I'm unsure... but it felt like it was working for me.

Unfortunately we moved at the end of February to somewhere where it made it really difficult to commute to see any of the therapists for me... so I had to give it up. Needless to say, I've gotten worse since giving it up.

It is a hard therapy to go through and requires a lot of effort and energy on your part, which made it very difficult during the 'lows'. But if I had the money and the support that the therapists gave me, I'd certainly try it again without a doubt. There are some things in the pipeworks that may mean I can start up the treatment again... so fingers crossed. I'd love for in two years for me to be able to do things like a normal girl of my age, with just a minor set back of needing to rest more than others!

There was one thing that really stuck in my head about Dr Perrin; and that was his not yet published research and findings that he showed me. His researched showed that people around my level of disability with MECFS (you do a chart/questionnaire in your first sessions) that after a year people have significantly improved, to the point they were leading a relatively normal life with less pain and rest so they didn't overwork themselves and after 2 years, not cured, but better still. I think it was something like 90%(ish I can't remember exactly) of people going through his treatment had improved. So fingers crossed for all those who're going through it right now.

I'm usually rather dubious about treatment; I refused outright the LTP because I knew it wouldn't work for me, I didn't see it as a treatment, I saw it as mind games to make you think you were okay. & since speaking to some people and their family and friends, I truely think it is just hypnosis at it's best. But unfortunately, it's not just a mental attitude to this illness that makes it as bad as it is, it IS a physical problem. So mind games will not work.

Anyway, point to this is, I've tried the Perrin Technique, is began working for me, I had to stop, but can't wait to go back because it seemed so promising!

Realised my big "update" post is turning into a wall of text; going to delete and post it in little chunks instead to make it easier to read, especially for those with brain fog. :)

This weekend my boyfriend has been home, probably terrified of any anger tirade I'm going to throw at him. My tiredness hasn't been TOO bad, but by no stretch "good". My asthma played up a bit today, and I still need to find my tube grip for my leg.

Today hasn't been too bad from my recollection. I've been tired all day, as per usual, been for a wee about a million and one times, and turned my nose up at most food as I'm just not hungry... my chest got a bit weezy earlier on, but we're under the impression that's just my asthma ;) My back has been hurting slightly, and I'm still in need for finding my tube grip for my knee (which is not ME related we believe!) So mainly, this weekend it's been my tiredness, my back, my constant needs to pee and my eye infection. Brilliant. :|

So it begins...

Basically, this blog is for me, hopefully somewhat privately... although I realise that this IS the internet, and privacy means nothing here, but hopefully, somewhat privately be able to write down all the horrid gritty details of this suspected ME. I've been wanting to do this for a long time, more so to show my doctor exactly what is going on with me. The idea is inspired by my previous cognitive behavioural therapist, who used this idea for my hallucinations related to my anxieties.

So! What my plan is, to get a diary that I will be taking everywhere wth me, and then note down days/times, etc, for every little thing that appears to be ME related, from pains, sore throats, naps, or wanting to nap, down to 'odd' bowl movements! So this blog is really just for me, and then I'll probably end up making some sort of table to show my doctor or something eventually :)