How to: live with CFS. Doing all the therapies.

I’m pretty sure it’s been well established on this blog that I have Chronic Fatigue Syndrome, how it has affected my life so far, how this illness feels in my everyday life, and all the frustrations that come along with it.

So knowing all that, you can’t help but wonder; What am I currently doing to try and rehabilitate into somewhat of a normal, healthy life?!
Well, that’s what I’m going to talk about in this here blogpost, aweyisss.
All the therapiesssss, yiiiisssssssss.
Massive blogpost nobody will ever read fully, cause it’s so freaking long, yiiiissssssssssssss.

(sidenote; CFS/me is very poorly understood in the medical community. Among other things, this means that not everybody with the same diagnosis has the same symptoms. We might not even all have the same illness. We’re just being put in the same ‘we don’t have a clue what the heck is wrong with you‘ box. The things I talk about here, worked for me, or didn’t work for me. But they were designed, with experts in this field, for me, personally. Not your friend-of-an-uncles-mother-who’s-sister-is-also-tired-sometimes. Don’t try and shove my therapies down a fellow CFS-er’s troath, as if they are the cure to all of our problems. Thanks very much. <3)
(sidenote to the sidenote; I think I need to make another post about how frustrating it is when people who have no clue about what’s going on in your mind and body, try and tell you how to cure your illness. Especially when nobody in the whole wide world has a cure. Ahem. Bear with me here people.)

GGZ inGeest
When my symptoms started to get worse and worse, about three years ago, the first thing my doctor told me, was that I needed to go to GGZ inGeest. Defensive as I am, I cried out “I have a physical problem! I don’t see the point in going to the place where people with mental illnesses go. It’s become very clear to me that the problem is in my body, not my mind! Etc.” After hearing me rant about how it’s not all in my head for a few minutes, he calmed me down, and explained to me that this particular branch of the GGZ is working together with the VU Amsterdam hospital, and how they are among the leading experts in the Amsterdam area on dealing with unknown psychical phenomenons, like CFS. “Oh. Well. Okay. Then I guess I’ll go.”
Little did I know I had a couple months worth of waiting, till a space cleared up there, was ahead of me. But I got very lucky, and within three months I got in.

Introduction Course To GGZ inGeest
At first I had a little introduction course, about all the things they offer. Which took about six meetings of two hours. So yeah, this was a place with loads of people, who know what they were doing.

Cognitive Behaviour Therapy pt1
The first of the therapies they recommend for me is this one. I’m still doing this therapy after two and a half years. Which I guess could be a sign that it isn’t helping me one bit, but it could also be a sign that it’s helping me to this day. And as always, the answer is somewhere in the middle.
My psychologist started off with helping me plan my everyday life. We looked at the stuff I was currently doing, and how we could even things out during the week. Like not doing a million things one day, and none the next. But doing little things everyday, as well as resting everyday. This process already feels ages ago for me now, I can barely remember all the things we did. But I do know we focused on ‘pacing’ my activities. Pacing basically means what I just described, you even out your activities, in order to get a more even flow of energy vs rest. Sounds super duper easy right?! Well let me tell you, it’s not. It sucks. It’s stupid and it has to go. Which totally means it works, of course. (for more info on pacing, click here for a neat little pamflet I found while googling pacing just now)

PMT/psychomotor therapy/Yoga/Fitness group pt1
When we found out ‘pacing’ isn’t one of my strongest traits, I got this new therapy to go along with my psychologist. Every week I would be in a group of people with similar physical disabilities, some had ME, some had CFS, some had fybromyalgia, some had conversion disorder, some had chronic pain, and so on, and so forth. Basically we were a pile of people who’s bodies were screaming no, while our doctors were all telling us our bodies were screaming yes. We were people with ‘somatisch onvoldoende verklaarde lichamelijke klachten’, or basically SOLK. Since I have no idea how to translate that into englisch, I’ll just use the dutch term, sorry non-dutchies.
The SOLK group was divided into two hours. The first hour, we did relaxing- and stretching exercises. You could call it, a really, really, reaaaaaaaally mild form of yoga. And the second hour we had did fitness. Which meant biking two minutes for one person, or walking 15 minutes for another person, and both of those for the next person.
The key to this SOLK group was to stay true to your own body, to feel your own limitations, and to act accordingly. Some people could stretch their arms over their shoulders, some over their heads, and some could barely lift their arms to begin with. We all had to do, what felt right within our own body. Which was unlike anything I had ever done, and I sucked at it tremendously.

‘Learn your limitations’ group
After years and years and years of ignoring all the signs my body was giving me, signs of pain, signs of fatigue, signs of being-fed-up-with-constantly-pushing-myself, I couldn’t listen to my body anymore. It was like my body was screaming things at me in Chinese, but I thought it was russian, and had an italian translator tell me what it was saying back at me in Swedish. Makes sense? Nope. Could I understand the things my body was telling me? Nope.
I kept pushing myself, and pushing myself. I thought to myself “well, I used to be able to bike for about 30 minutes with ease. So if I bike for three minutes now, it’ll be so much shorter, my body will be able to deal with all of that with ease, and I’ll be back to biking 30 minutes in no time!” Only I wouldn’t. Biking three minutes kept making me more, and more, and more tired. But my mind was telling me three minutes was nothing, so I kept on going. And going. And going. Till biking three minutes became nearly impossible and I scaled it down to 2-and-a-half-minutes. But still I was exhausted, in constant pain, dizzy, the works.
It became clear to my therapists that I couldn’t hear what my body was telling me. And so I went to the ‘learn your limitations’ group.
It was another group of people with similar, but sometimes completely different, physical disabilites. And we talked about those. A lot. And we talked about fighting our own bodies. And we did silly exercises, where we screamed “no!” at each other, or “yes!”. And then we talked about how different screaming those two words felt. And how even that felt different to all of us. We threw a ball at each other. We got all up in each others personal space, while being told to push anyone away who came in your personal space. We made little nests with rope, to show to each other how much space we needed, or how little space we gave ourselves. We did so much in those eight lessons. And when it was over, I felt like a different person. Somehow my body, and my mind, started making a little more sense to me again. I realised that I hadn’t listened to my body at all these past few months, heck, these past few years. I had only been listening to what my mind was telling me. And the time had come, for me to really listen to my body once more.

PMT/psychomotor therapy/Yoga/Fitness group pt2
It’s weird to think back to that first time I did the SOLK group, and how I came back to it after the ‘learn your limitations’ group. I used to participate in each and every exercise, standing up, stretching, sitting on my hands and knees, biking for three minutes, or even taking public transport to the building.
Oh boy, things were different this time around. I could feel my body cramping up when I sat up for too long. I could feel my legs shaking from holding up my own weight for too long. I could feel my arms ache when I lifted them up too high. Something clicked inside me, and it was like I could hear my own body speak to me for the first time in a very, very long time. Thinking back on it now, it still makes me feel like an emotional little blob, ’cause this is when my life truly changed. Both for better, and for worse.
Hearing my body speak to me was wonderful, it was the break I needed to really start my journey to recovery. But it was also hell on earth, because my whole body ached, a lot, all of the time. There was no rest from it, no matter what I did. I could fully feel what my CFS was doing to me, and let me tell you, I understand why I ignored my body for as long as I did, because it was pretty flipping awful.
The mind is a powerful thing though. My mind got me to ignore all this pain, for so long it kept me going, and going. But now my mind was exhausted as well, and it couldn’t fight back any longer. My body had won. I could feel the sweet pain of this victory, day in, day out, day in, day out. So my mind adjusted, my mind gave in to the victory of my body. And my body and mind became allies again. They started working together to make me realise what I needed to do, and what I needed to stop doing. So I stopped doing, well, basically everything.
I started working from the ground up, instead of the other way around. I stopped listening to that little voice in the back of my head that was telling me “three minutes biking is nothing, just do it, come onnnnn!” “Come on, you can do this exercise standing up, what are you, some kind of pussy?” “what, you went to the Zoo this weekend, and now you can’t even sit up anymore? Flipping bollocks! Sit up, like a normal person, you bastard!” “Oh you think, just because you’re sick, you’re some kind of special person who doesn’t need to work for her money? Work harder you B****!” To put it mildy, my inner voice wasn’t a very nice voice, and while I had always thought it was helping me, I now realised it didn’t. And I learned to mute it down, most of the time. (shout out to my psychologist for helping me out here, big time)
Some days I would do absolutely nothing at SOLK group, my goal would literally be “I will not fall asleep today”. Other days I joined in some of the exercises, while resting during some of the tougher ones. And there were days where I could join in on pretty much all of the exercises, and still feel okay afterwards. I would start biking one minute, instead of three. And when even that was too much for my body, I started biking 30 seconds. Every day was different, so every day I did different things. There was no right, and there was no wrong. There was only a peace of mind, a peace of body, and a mutual understanding between the two.

Mindfulness workshop
Holy smokes you guys. Do you realise how monumental everything is that I just described? It is in-sane to realise how much I’ve grown. How much I have learned to love myself, and be nice to myself. And it is in-sane to think that this is where it all ends. Cause of course. It doesn’t.
I was doing so well in my little SOLK group, I was going there twice a week, listening to my body, listening to my mind, learning, growing. One of my therapists called me a ‘model patient’. I would help other people with their battles, while at the same time still fighting my own. I felt all powerful, in exposing my weaknesses to myself. But that’s where they stayed. Within myself.
In the world outside my wonderful therapy bubble, I was still struggling. I was still having a hard time to just be myself. To be the Annika that my friends and family knew, and loved, while at the same time, feeling all this pain, and trying to learn how to deal with my illness.
I think this is why it’s been such a long time since my last big blogpost about my illness. I couldn’t be the Annika I knew anymore, I felt like a completely different person. And I didn’t know how to let my friends and family know, just how much I had changed, without at the same time letting everybody know, that I hadn’t really changed at all.
It’s a weird feeling, to change so much, to learn so much, and to still feel like the exact same person I was a few years ago. And because I had trouble realising that, and I had trouble realising how to marry my therapy world with my real life world. I got a mindfulness workshop.
It helped me so much more than I thought it would. It really was exactly what I needed, at exactly the right time. I learned how to fully live in the moment, and how to accept that that moment was a huge pile of doodoo. It gave me the tools I needed, to keep this learning process going, and how to marry my therapy world, with my real life world. I now pronounce you, life and life.

Cognitive Behaviour Therapy pt2
During all of the above, my psychologist was there to coach me, to guide me. She helped me so much more than I ever thought she would. And she helped me so much more, then even she realises.
Focusing so much of my energy towards my therapies, made me lose focus on my every day life. I had married my everyday Annika, with my therapy Annika. But when my therapy bubble started to bust. I realised, I had very little of an every day life left. Or, not enough left to keep this marriage a happy one. Pretty much every day was spent being home alone. Sure I had my kitties, but they can only help so little. Okay no, they can help lots and lots! But still not enough to give me the feeling that my life had any meaning, any purpose. And that’s how the anxiety slipped in. I started having more and more panick attacks. Fearing pretty much every thing there was to fear. While not even realising I was fearing anything at all. Another monumentally weird thing to look back on. I went from feeling all powerful, to feeling the worst I have ever felt in my entire life. And since I’m still climbing out of that hole, it’s hard to say just how and where I will end up.
I just know I’m still trying, still learning, and using all the tools all my different therapies have given me. My body might be weaker than it has ever been in my life, because don’t get me wrong, I am insanely thankful to all these therapies, but they haven’t done jack-shit to help my body become healthy again. But I am better at dealing with my weak body, my sometimes still very weak mind, and my strong determination to keep fighting.

Physiotherapy
During everything that I learned at GGZ inGeest,  and all the wonderful therapists there, that have taught me so much. I also found a physiotherapist close to home. Who started out giving me different exercises to regain some muscle strength, and who has now become my personal massager, my second psychologist, and well, my friend to be honest. She knows so much, she sees so much. And she will be with me, even when the last of the GGZ therapy falls away. She’s keeping me grounded, and helping me so much, and I look forward to learning from her for many months, maybe even years, to come.

Shiatsu massages
My Treat To Self therapy. An hour of pure bliss, where it sometimes even feels like an outer body experience. Aahhhhhh, so goodddddddd. Highly recommend this to everyone, not just sick people. Such a gentle and relaxing massage. So, so good.

And this has been my journey so far, during this third setback with CFS. It’s not always pretty, but life never really is.
Virtual cookies for everyone who read all of this! Hurra!

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10 thoughts on “How to: live with CFS. Doing all the therapies.

  1. Wow, dit komt ZO overeen met hoe fibromyalgie voor mij voelt, en mijn moeilijke weg naar het beter voelen. Ik ben zo slecht in het verwoorden van dit alles, dat het heeeel fijn is dat jij dit zo hebt opgeschreven, en ik hier héél veel in terug herken. Zo fijn! Ik heb iets minder therapieën gevolgd, al had ik die een aantal jaar wel heel hard nodig.. Bij mij is het gebleven bij cognitieve gedragstherapie en mindfulness (wat ik mezelf heb geleerd/gedaan), waar ik overigens wel echt heel veel aan gehad heb om te leren omgaan ermee. Dikke knuffel omdat ik het super knap vind dat je dit allemaal gedaan hebt, hier neerzet en met anderen deelt. Dat doet zoveel voor mensen die iets soortgelijks hebben (meegemaakt)! 😀 Keep up the good work zou ik zeggen. X

  2. Wow, you’ve done so much! The only thing I have been offered here is physio which made me so much worse as I was too ill and weak to be pushing my body. I’m so angry at my doctor for telling me to do it because it sent me into a really bad state. I’m so sceptical about so many of the therapies anyway, but it was interesting to read how you got on with them. I’d love to try massage as my muscles and body in general is always so achy and painful and I think it would really help. I’ve kind of done exercise therapy on my own slowly increasing how much I’ve done over the past year and I’ve come a long way, but I wouldn’t want to do it with therapy set by the hospital and be pushed too far too fast, I’m happy pushing and building my strength at my own pace.
    Enjoy the rest of your day!

    1. I think I’ve been very lucky in finally finding the right people, who never pushed me. But those people are hard to find unfortunately =( (took me about ten years to get to them as well -_-)
      Massages can be so wonderful! You should def try it =) I really recommend shiatsu, because it’s just really gentle on your muscles. So even when I’m in a lot of pain, I can still handle it =)
      And I think you’re doing a really great job in your own! Don’t think I would be able to do it like you =) good job babe =* ❤

  3. Hey meid, ik had vandaag een afspraak bij de ggz VU om lessen van de psycho educatie in te halen. Ik kreeg van mijn behandelaar te horen dat hij jou artikel had en of ik dat wilde hebben om te lezen, en natuurlijk wilde ik dat ! ( Ik had hem verteld dat ik begonnen was met bloggen ) Ik kreeg jou blog post uitgeprint en nam hem mee naar huis. Ik heb hem thuis gelezen en moest lachen om dat stukje ‘it was like my body was screaming things at me in chinees’. Het is zo waar ! Had het niet beter kunnen verwoorden. Herken ook veel dingen in jou verhaal, vooral de pijn die je met je meedraagt en jezelf als maar willen pushen. Daarom moest ik je even op zoeken om je een berichtje te sturen. You go girl !

    1. Oh, wat leuk dat je een berichtje achterlaat! Ik wist niet dat m’n blog uitgedeeld werd bij de ggz! Hahaha.
      Maar fijn dat je je er in kan vinden =) we’re not alone! Jeej =D
      (Van wie kreeg je m trouwens?!)

      1. Ja inderdaad, we zijn zeker niet alleen yeah ! Ik kreeg hem van mr Gossink, hij had het weer van jou begeleider als ik het goed begrepen heb. Ik heb hem vorige week verteld dat ik een blog had, vandaag zei hij dat hij een artikel had van een meisje die hier ook bij de ggz in behandeling was en ook een blog had en haar verhaal had geschreven . Zo doende, altijd fijn om mede bloggers hun verhaal te lezen. En vooral van iemand die het zelfde heeft als ik !

  4. My experience with Ingeest was completely opposite. They seemed to be focused on just prescribing medicine and training their students, and as my physical condition deteriorated, they where completely unable to deal with it. (These people seemed clueless)

    They kept pushing antidepressants. When I finally tried one, it interacted so badly with prescription medicines I was on, I missed 2 days of work.

    There apathy and incompetence where so depressing, that after one session I almost threw myself in front of the snel tram at AJ Ernst straat.

    “I think” the people I dealt with were not competent and had I been int he states I would have reporting them to the State Board of Medical Examiners.

    Ironically once my medical problem was finally resolved, 90% of my depression was resolved, WITHOUT anti-depresants. (The thought of a re-occurance, terrifies me that I might have to deal with GGZ Ingeest, again).

    I wish I had encountered the people you seem to (or someone who knew what they were doing) . (I’m still incredibly angry about GGZ Ingeest)

    1. Wow, I’m so sorry you had such a bad experience =( I think with any place, there will always be some incompetent people working there, but it sounds like you just had all of them?! Which really sucks, to say the least =/
      I have since quit all my therapies, and looking back on them, they were not as perfect as I once though they were. Still pretty good, for me, but maybe a different approach would’ve been better.
      Again, so sorry you had this experience, it should’ve been about helping you, not forcing you into something that doesn’t feel right for you.

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