I Am My Own Worst Enemy
January 16, 2008 by laura
Filed under Diseases & Conditions
Sometimes I get a bit of a wake up call, and realize that I am the reason that I am still sick. I realize that outside forces are the original reason that I live with (not suffer from) Chronic Fatigue Syndrome. However, I have to think that if I actually 100% followed my doctor’s orders and wasn’t so incredibly stubborn, then I would be doing great instead of mediocre. Perhaps this is a misguided fantasy – but then again, I may be on to something here.
- I don’t sleep – in actual fact, I sleep less than 90 minutes a night. Is this healthy? No! – Could I do something about it? Yes! I could go back to my doctor and request that I take an SSRI antidepressant, or perhaps something a little stronger to help me sleep (xanax perhaps?). I refuse to do either. The fact of the matter is, I will not take another pill for CFS as long as I live. I may have made a bad decision – but from past experience, it is the only choice that I could have made. Instead I have decided that when I really need the sleep, I will sleep.
- I get sick a lot. Not everyday feeling horrible from CFS, but I get severe bouts of mono and pneumonia every year (more than once a year), I sound (although I don’t have) like I live with Tuberculosis – believe me when I tell you I don’t have it (I just sound like I do). Last year’s bout of Meningitis was a big wake up call for me. I have a severely run down immune system. It is insanely compromised. I am a woman who should be living inside a bubble. – What do I do about it? Besides wash my hands and face about 27 times a day. I work 3 jobs, I eat only when I have 10 minutes of spare time – and less than half of my meals a week are home cooked. Am I doing myself more harm – absolutely!
- I take vitamins, although I forget to take them everyday. The same goes for exercise – I do it, but not every day.
- I started taking echinacea – but since I don’t suffer from regular colds and flus – is it even necessary to take it?
- I see out alternative health treatment – but I am not able to practice at home, unless you can count lying on the floor with 3 tennis balls (in a sock) behind my head. I try to meditate, but I end up falling asleep (not for very long though).
I have a stressful life, but its mostly my own doing. I write out new methods of relaxation and exercise to try. I even try out a new regime – and I intensly follow it for about 4 days….and then give up. The reason isn’t laziness, or lack of willpower. But I don’t really understand why I can not commit. Perhaps the patterns are just too hard to break. My muscle memory is not capable of change.
Or maybe that is just an excuse. I recognize the fact that I have a lot of work to do, in order to get well – I am just not sure that I am capable of making the necessary changes. This statement scares me like you wouldn’t believe
Its time to wake up and do something about what is missing. So now I need to find the right first step…..
I will start with the right foot.
**Picture Souce – Flickr
I’m starting to get the impression you have masochistic tendencies. Either you run yourself into the ground, or beat yourself up about running yourself into the ground (or probably both most of the time).
Look, when you are used to going full tilt, and using up every ounce of adrenaline you can produce, it gets addictive. Just like caffeine
. When you start sitting still, or cutting out the crappy food, or realigning your body, all of your systems start screaming. Both because it’s not giving the hits you are used to, and because you’ll start to feel all the crap that’s been done. It’s really, really hard. This is coming from a woman who’s had basically NO commitments for almost two years and is only now getting to a place of calm (although ask me in a week or two, and I’ll probably be running around in circles again just for old-times sake). But it is also really important (not because I think it’ll cure you, but because I think it’ll reduce the severity of the infections, or the length of time they are there, or even just make it easier to bear). If I were smart, I’d do one small step at a time. I’m not that smart (all-or-nothing personality here!!). So I make a commitment that my health is my #1 priority, and try to make every decision based on that. This month is all about doctors appointments and meditation. Next month may be a change in diet or a change in exercise, but at least the focus is in the right direction.
I’ll let you know if I ever get it to work
.
Sleep is half of it…or probably 3/4’s of the issue with CFS/FMS. Then if I get too much sleep, it seems to be …too much. I take meds. I take Klonopin at night to get to sleep (1mg) and then I’m just not ready to get rid of topamax yet. I understand about the meds. I had a friend say to me “I wish you would realize you knew you were worth it…”
Hi Laura. Things sound unbelievably tough for you at the moment…
Unfortunately I don’t think it’s ever possible to be sure you are doing the ‘right’ thing in response to CFS so I try not to stress about it. (Ha! Easier said than done, I know!) I went 8 years without meds and then finally saw a specialist at an ME unit (relatively new in the UK). To cut a long story short I had really run myself into the ground over the last two years – too much emotional and physical stress caused simply by trying to maintain a ‘normal’(ish) life. I had crazy insomnia which was finally dragging me down despite my many coping tactics – in the end my body didn’t have the energy left to cope, let alone heal. The Docs were very careful to say that they couldn’t cure me but they could try to improve my quality of life. As a result I’ve been on a strict ‘pacing’ regime for about 5 months now and even though I am far from perfect at following it, I AM starting to see an improvement. My sleep was so far out of whack that I agreed to take meds for it and it has made a great difference. I completely understand why people might choose to avoid meds – I had just reached the point where my way of ‘coping’ wasn’t working. My regular GP would not have put me on these meds full-time but is being very supportive/positive. Also, I’m on the tiniest doses possible, which is some consolation (I take a tiny dose of a tricyclic anti-d which acts as pain relief but also trebles the strength of the sleeping pill, which allows me to take the lowest dose possible). I find I have to keep simplifying and keep cutting things out of my life, which can be painful and frustrating, but for now is my only way forward. After a massive emotional blow-out with a friend this week over the fact I “don’t support him” and “never come to things” etc etc another friend said that I had to forget stressing about anything else and concentrate on getting on an even-keel healthwise. You manage to fit an incredible amount into your life, you have a great attitude (I love the fact that you “live with” rather than “suffer from” CFS) but it is no wonder you are feeling wobbly – you’ve had a dreadful run of illness. The quotation I try to keep uppermost in my mind is “don’t let the perfect be the enemy of the good” (Voltaire, I think). If you meditate somedays it is better than nothing. Truly. Maybe only 40% of your meals are cooked from scratch? Pretty good! So you still drink coffee? At least you don’t smoke! You don’t need to change everything at once – that has been the hardest thing for me to learn. I’m a born perfectionist, and you sound pretty similar to me, so I understand the temptation to try and correct everything at once. Also, whilst I whole-heartedly believe in taking responsibilty for your own health/welfare it’s sooo easy to tip into self-blame. There may well be steps you can take to help your body along but I don’t really believe you are entirely the reason you are still sick – the illness makes you vulnerable and no amount of positive thinking and having a great attitude can protect you from the effects of a wonky immune system.
Goodness, what a long comment. I hope it makes some sense…Maybe I should have just told you to cut yourself some slack and that I send a big hug!
Hi Laura-
I definitely feel for you and can relate. I understand not wanting to take meds. I have given in to the pressure and it has helped me a bit. But, I often think the same things you do – if I did what I’m supposed to do with my diet, exercise, etc. – I’d be feeling better than I do. I work full time and have a 5 year old daughter. It’s been incredibly tough. Sometimes (often) I feel as though I’m barely making it. Thanks for sharing how you feel. You should know that you are helping others to not feel so alone.
We’re all our own worst enemies. I wouldn’t let it get to you too much, some things are just in our nature and that’s not something we can really change.
Really, you lead an amazing life given your health limitations. I’m sure if you did all the things on your list you would be healthier. But it would compromise your lifestyle an awful lot – and perhaps to stay healthy that may be a permanent thing. Seems to me that your priorities are to maintain your current lifestyle at the expense of possible health improvements. If living a busy (and fulfilling I guess) life is more important than living a healthier life then that’s your choice. Own it and don’t shy away from it. And if your priorities change, then change your actions with them.
Thanks also to Georgina for telling your story. It’s always interesting to know what others are going through / have been through and it always makes me feel I’m not alone in my experiences.
I resisted meds for a long time too. I have never slept like a “normal” person and I believe that for me it was huge part of my illness. Now I take very small amounts of several meds at bedtime. I think of them as adjusting, or correcting, my messed up body chemistry so that I can sleep normally. I don’t feel drugged or dopey and I’m still a much lighter sleeper than my husband, I really do envy his great sleeping abilities!
Jenna,
you have the exact same voice as a friend of mine. Combined with him, you have given me a big wake up call.
Let me know if your plan works for you.
Jensina,
That’s a good saying. I will try to remember that.
My choice to not take meds for CFS is not a something that I randomly picked. I took pills for CFS for years – it made things much much worse (got me). No matter what my problems are now – they are nothing compared to what they were.
Thanks for the advice.
Georgina,
thanks for the lovely comment. Its nice to know that I have friends out there that understand all of this craziness.
I am sorry to hear about the trouble with your friend- its really hard when that happens – something I can relate all to well with.
By the way, I love your Voltaire quote.
Julie,
thanks for your kind words. It is comforting to know that people respond to this blog- and what I have to say.
I cant even imagine what it would be like to live with CFS, work full time, and raise a family.
I can barely do 2 of the 3 and look after myself.
Sounds like you are a super-woman.
Thanks to Ellie – for being on my side…and who I suspect, lives life in a similar way to me.
Lilli,
your comment made me smile. You know whose sleeping abilities I envy? Golden Retrievers….they sleep so well…..I especially love to watch them dream, its the cutest thing ever.
Well, I’ve just had another wrench thrown in the gears of my lovely new plan – my new health care team just drastically cut my exercise levels. I’m now only allowed 3-7 minutes of cardio every OTHER day (with the goal of slowly working up to 5-10 minutes per day). I can’t even walk to the corner and back in that time! The only “good” news is that they didn’t cut my step count much (1500-4000 steps per day) – although I’d imagine they want me to stick to the middle of that instead of the upper end
.
I like my apartment, but not for 47 hours 55 minutes out of every 48. My DH is going to get sick of ferrying me about just for a change of scene!
Om Namah Shivaya. Om Namah Shivaya. Om Namah Shivaya….
“Om Namah Shivaya.” Ok, that just made my day. Thank you
Jenna,
ugh! Sorry to hear about your back slide. Hope that you find a new balance, really soon!
Good for you on the chanting though – I hope thats working for you, at least.
I understand about the pill thing…I took a whole lot of pills at different times and swore I wouldn’t take another one…the doctor gave me methadone for pain! That landed me in the hospital after I was taking the lowest dose and quit taking it when I got pregnant. SOooo, I get that and understand why you don’t. No judgement there whatsoever.
For myself, i’m hoping for a divine intervention…and continue living…that sort of thing. I’m going to acupuncture for the first time next week. We shall see….I don’t even want their herbel remedies.
Jensina,
good luck with the acupuncture. I hope it brings you as much relief as it gives me.
You gave me a really good idea for a post, about my story with chinese herbal remedies, but I am too tired to post it. If it doesnt show up by tomorrow night….remind me. Its a good one.