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.

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!