Why pacing never worked for me

This will probably be a thing of “it either works for you or it doesn’t” but I thought I’d tell you my version of events. The subject of pacing or any other programmes is a bit of a controversial thing, with many lengthy discussions on it in the M.E Community, but again, it is my opinion. I mention briefly my depression so if that will be a trigger to you, you can just skip it (it is two paragraphs long). Oh, and if you don’t like my opinion, don’t read. 🙂

I’ve briefly (hehe) mentioned my M.E story  here but missed out the fun of pacing. There’s a reason for that! When I was first diagnosed I had the CFS/M.E team at Bristol. I really liked one of the psychologists (I think that’s what her title was . . . Probably a rehab one or something) but you’ll see that later. They introduced me to a thing called “pacing”. As I was only eleven – and this was all foreign to me – they explained that I had a “baseline” (which is the amount of activity you can do without relapsing) and that currently my line was all wibbly wobbly. Like this:

I hope this makes sense xD

I hope this makes sense xD

I would like to point out that the curved line would have been me going to the bathroom, turning on the tv, watching kids programmes (my brain couldn’t do normal programmes), eating, drinking etc.. But anyway, that’s how they explained it as I led on what felt like my death-bed. I could just about grasp the concept of that so they gave me some sheets like this one for me to colour in to see what my activity was.

That felt okay. At first. (It’s getting pretty damn close to 5 years since what comes next all happened so right now I’m a bit close to tears thinking about it. Oh dear.) I coloured in what was my “red activity” (going on the computer – already logged in so I didn’t use excess energy (to check e-mails from a lovely girl I had met through another forum but it turned out she had M.E too) for ten minutes, sitting downstairs for five minutes, having company for five minutes), what was “yellow activity” (listening to an audio book, looking out the window) and what was green activity (doing a breathing exercise, closing my eyes for a few minutes).

Except, there was a flaw in this plan (at least to me). I am wasting precious energy on colouring in a stupid chart to “document” my activity when actually that is considered red activity so! If you had bad brainfog as well (like I did) you had to do it instantly otherwise you’d forget about it. So from October 2008-November 2008 I filled this stupid sheet in and finally I cracked in December. (I also suffered from light, sound, smell, touch sensitivity so the psychologists basically told my family and the few friends I had not to see me because that would make me worse. Yay!) I had become severely depressed in the time since my diagnosis (October 2008) and really wasn’t in the best frame of mind. I didn’t want to live anymore (what was the point?) but at the same time I was scared I wasn’t going to wake up in the morning because I was just bones and skin. I’d post a picture but it’s awful to look at. For an 11-year-old this was the scariest thing to happen to me and I was worried sick I was going to be sent to a mental hospital.

After that event, we stopped the colouring in sheet and I stopped taking Cyclizine (because I was taking that and apparently it causes depression and voices in your head, which the doctor refused. Up yours) which helped immensely. It is really weird to say this, but I hadn’t been able to read books at all during my severest period (that year) and the first thing I picked up to distract myself from the thoughts that had just entered my mind (and while the parents were taking anything that I could harm myself with out of my room) was Harry Potter and the Half-Blood Prince. I’m not normally one to believe in things saving your life but that really did. Without that I would probably have gone insane with my thoughts.

After a few days, the doctor came out to check I wasn’t still suicidal and I wasn’t. I felt happy and more comfortable. I managed to enjoy the Christmas that I was worried I wouldn’t be able to (even if I had to open presents slowly and have cold dinner – hot dinner took energy out of me) and it was probably one of the best. We also got to stop doing a food diary because after Christmas I got my appetite back. Oh yeah!

So, with no pacing programme, the psychologist came back out to offer me CBT (Cognitive Behaviour Therapy) so that I could keep my emotions in check and do breathing exercises to calm me down. I didn’t do that either, because to me that was again energy I was wasting on something I could be doing to get better. During this I appeared on Radio 4’s Woman’s Hour to raise awareness for M.E. After a few months I had brought myself up from 4 stone something to probably 5 nearly 6 stone? It felt good to have weight back on me!

That summer I spent the majority of my day listening to music on a blanket outside. I even managed to have my friend over and meet someone new! That was definitely an exciting feeling, I was close to being normal. Then school got involved blah blah that’s another story, which I will tell you. Anyway, after Christmas I relapsed pretty badly and was bedbound again.

2010 was spent trying to recover from said relapse and my psychologist had changed (to someone younger) but he didn’t really help much due to the fact he didn’t quite know how to handle me as I couldn’t really follow any of their normal advice. xD It was frustrating that they’d come out and make me sit downstairs, that was literally the only time I’d see downstairs due to being so poorly. The only sense of outside world to me was when mum would bring my rabbits in to see me (which also helped greatly with my recovery of depression). But I had recovered from my sound and light sensitivity which made it easier to go downstairs.

My anxiety was very bad though. I couldn’t go downstairs to see my tutors because I would freeze at the top of the stairs in panic and then I’d go down for my lesson only to go back up 5 minutes later due to nausea, tiredness and panic. Many a time my mum’s helper and to talk to me to calm me down (shout out to you if you read this). Song writing helped at this point. I stopped seeing tutors.

In 2011 I was becoming better slowly, I was able to meet my new friends, and see my best pal quite a bit. Then it all went a bit down hill again when the male psychologist suggested I try GET (Graded Exercise Therapy). This did not work at all. It, I think, was their worst idea since the colour in sheets. Absolutely useless and it makes my blood boil thinking about it. They offer this to people to basically get better by exercise because they think we’re lazy. There’s probably a better way to put that across but it’s the truth, really. If they think that someone who is bedbound/housebound can suddenly do these strenuous exercises on a daily basis to “get better” they really are deluded. It may be better for someone who isn’t in the severely affected bit but. As you can tell, I didn’t stick to that either.

I tried pacing as if it was money. I had a “budget” which was say 3 hours of high energy activity converted into minutes so it could be money. I’d have £180 to “spend” on activities throughout the day. Obviously I would time these activities or set an alarm after a certain amount of time to make sure I measured it out and didn’t go over budget. I went over many times, but it was way better than their stupid system.

Later on in 2011 I caught a stomach bug off a new person I had met (bloody typical) and relapsed yet again. In 2012 I was starting to recover ish, but had disturbed nights due to feeling horrendous. In the June (I think, I can’t remember and neither can mum xD), I was discharged from the CFS/M.E team due to the fact I was moving and also because my lovely female psychologist took me under her wing again and realised I wouldn’t take anymore of their pacing crap. ;D One of the best days of my life was being discharged from them. They’d be surprised to see how much better I am now!

So here we are, you know the rest of my story, because of this blog. I wouldn’t say that taking control of what you do is for everyone, but I hate to be controlled by anyone else and I was determined so here I am. I’ve got to know my body, how much it can do, what it can’t and when I need to rest, I chill out (for as long as I can before I’m taken back to those dark times because I associate rest with that). I’ve learnt a lot about coping with my illness, emotions and everything else. To me, at this present time, it feels like all I have to worry about is being a teenager. Which is way better than how much I’m eating, what I’m doing etc..

Okay this was really lengthy. I knew it was going to be but geez, nearly 1800 words. I really hope no one was offended by this, but it was my story and how I was treated. It kind of feels good to get it off my chest. I’ve talked about it many times but now it’s in the open, hopefully it will help other people recently diagnosed or whatever.

It’s not meant to be a depressing story, it was meant to be a sort of rant and it’s meant to show you that there is a future, no matter how dark it is right now. I never thought I would be where I am today, you can get through it if you listen to your body. Sometimes professionals aren’t all that professional.

See you all soon, guys!
Jess x

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Woooooohooooo!!

Hello again!!

I thought I’d write a quick post, like I (sometimes) do. Today I pampered myself (I say pampered. I had a shower and painted my nails. I was a bit too hungry/tired to do anything else. Ah well. 😉 ) and did some sewing. I finally finished one of the Christmas presents to be sent overseas, which is a relief! I think I’ve got one or two more to make and then I’m done for overseas presents. Yay!

Talking (only briefly) about Christmas, is anyone else sort of excited and not? I’m half excited because I am well enough to enjoy it (and I’m not stressing out about moving house like last year, thankfully) but also really not because I foolishly  thought I could make presents this year (and people keep reminding me it’s December soon. Shush people xD). I don’t mind making presents, I love crafting, it’s no problem to me but oh dear. I do forget that I’m not superwoman! It is a case of doing it slowly (but not too slowly or they’ll never get made) but I’m not very good at pacing myself (as my psychologists found out when I pretty much refused to do any sort of pacing program. Hehe, that’s another story that I’ll probably tell sometime soon. ;D) so I end up spending an afternoon sewing and then not being able to do anything for a few days. Ooops.

Anyway, moving on from that. xD I don’t think I have any other news for you . . . I’m hoping to go to my town’s light switch on later this week, because it’ll be our first time properly seeing everything (again, unlike last year ;D) in the new place so yay! Hopefully it’ll get me in the spirit of Christmas. I’m feeling a bit Bah Humbug, ooh I feel a song coming on!

Well, I shall leave it here for today. Hopefully next time I see you I will have made a few more Christmas presents! Of course, I can’t show you until after Christmas but there we are. 🙂 It’ll be worth the wait (hopefully!).
See you all soon!
Jess x

It’s been forever!

Or at least it feels like it!! I was supposed to do a post for Remembrance Day, but the pictures were messing around and they weren’t being my friend. Stupid pictures!

So, what’s been happening since we last spoke? Well. My nan gave me the lovely 30s encyclopaedias (Did I tell you about them? I honestly can’t remember if I mentioned it) when she came up last. They are absolutely fab and I honestly can’t wait to have a look through them.
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The cover is absolutely gorgeous. I’m guessing all the things on it is what is included in the series!
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The spine is pretty fab too!
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Most of it is in black and white but they do have some colour pages, which are stunning. 🙂

Then I went on a roll with sewing (so much so that I made myself feel rather ill). I have nearly finished a Christmas present but I did something wrong so I have to unpick a lot of it. What annoyed me most is that I have tiny stitches when I sew, so having to unpick tinsy stitches that you probably need a magnifying glass to see was pretty frustrating. ;D It’s just sat on my sofa hoping to be fixed soon. Poor thing.

What else . . . Ah yes! I said I was going to my nan’s house in my last post, didn’t I? Well I went, and I’ve been there a few more times since!! I really love the house, they’re very lucky to have such amazing views!! Of course the days I’ve gone round have been the crappiest with rain or fog or whatever so I haven’t had chance to see them, but I know they’re there somewhere! xD

On Friday the parents and I went on an adventure to the charity shops and I couldn’t resist having a little nose at some of the pretty things they had! I found some amazing scarves, but the picture is awful. D; They’re silk ones with delicate flowers on them. Yay! I also found a little treasure, which I love. For just £2.99 this was mine.
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I’m thinking that they are late 20s early 30s but I’m not sure. A book from a completely different set of encyclopaedias/knowledge books. It’s really cool to have, especially this one as it has loads of fables and stories, which is cute! All in all a happy bunny!

The next day we went over to my nan and granddad’s to cut down a tree (dad did it as my granddad injured himself on the wardrobe. *shakes head*). While dad was up the tree and my granddad not knowing quite what to do mum, nan and I went into the garage and my nan gave us my great-granddad’s projector and all of his reels of film.
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Needless to say mum and I were excited! When we got home we pretty much set it up immediately. One of the reels was a bit broken, but we got a different one working. The height of technology in the early 70s, we were having a hard time understanding how it worked. I’m sure granddad would be very annoyed with us for taking too long to set it up. 😉 We managed to watch a few and you have no idea how amazing it felt to be able to see my granddad. Having never met him, it was a great feeling to be able to see him on this film and watch him draw these cartoons (he was very interested in film, photography, editing things etc..). 🙂

Since then I haven’t really done a lot, or at least not that I can remember. I’ve been trying to organise some schoolwork so I can get back to doing that in the new year once all the present making is out of the way. Yesterday I went to my aunt and uncle’s to spend some time with my aunt and cousin. My cousin decided – with the new craft stuff we had given him – that we should make some pictures so we sat at the table and did that! He got very excited about it all and let me use one of his chalks to do a picture of my own. I think it’s a masterpiece:
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I am obviously a great artist. I left it there so it could join my cousin’s pictures on the fridge. Although I highly doubt that’ll happen because I’m sure my cousin will protest. 🙂

Oh, and also yesterday I spent my morning trying to figure out PDFs for mum and nan’s blog. It took a little while but it’s all done now! If you are into crafting and like Christmas, go check out their site! Click here and you’ll get taken there on a magic carpet (possibly. It only works 50% of the time, you just can’t trust magic these days).

So, after that rather lengthy catch up, I s’pose I should leave you now! I hope you all have a good rest of whatever it is, wherever you are! I shall leave a picture of my rabbit from this morning to cheer you up if you are having a bad day. 🙂
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See you soon!
Jess x

Remember remember, the fifth of November

Hello all! 🙂

I’m back again! 😀 I’ve been quite tired after last week being so busy, but it hasn’t really stopped me. For mum’s birthday we went out into town to have a look around a couple of shops, although there wasn’t really much there. Then we had a lovely family get together (minus my granddad as he was at work) with lovely cake from my aunt. It was mainly spent chasing after my cousin and playing games with him. xD

Then on Sunday the parents and I went to a local castle to see the fireworks. It was all very exciting, so glad I got to go (even if my feet were ice blocks afterwards. Hot chocolate was needed)!

Then the start of this week has been pretty chilled out. I’ve been playing the Sims and reading, so it feels like I’ve gone back in time a bit as that’s all I used to do. xD I’ve been getting excited about history again though, so I’ve had many discussions with mum that have ended up with me geeking out about the Tudors or the rulers of England. I do love a bit of history. 🙂

Tomorrow the parents and I will be going off to see my nan and granddad’s new house! I’m all excited because it was built in the 1920s and I’ve been given the role of researching about the house. Pretty much my dream job, right? 😉 I really can’t wait! Plus I’m dressing as a 1920s woman. All in the name of history. I’m a bit of a geek, aren’t I? xD

So, today is Bonfire Night! All the fireworks are going off, including those annoying squealy ones. I do like it though. Plus I’ve been reading up about Mr Guy Fawkes and the rest of the crew (you can’t forget them!), which is always fun to do. 😀 I think I might watch a few more fireworks from the window. Certainly much nicer when you’re by the radiator! 😉

One that note I shall leave you all until next time! I’ve got a lot of reading and sewing to do (whose idea was it to make Christmas presents this year?!), but I should have time to do some updates for you all. 🙂 They probably won’t be the most interesting but you can’t have it all, eh?

Right! Off to do a bit of reading.
See you all soon!
Jess x