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. :)