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 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
Rose Vampire 