Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part Two
By Dave R.
March 30, 2012
Internet links shown in these posts are designed to provide more detailed information if required.
Okay, all that information about exercise provided in Part One probably leaves you feeling somewhat frustrated if your movement is already limited by pain and disability. So what can we do for ourselves? We've been pushed reluctantly into our chairs by neuropathy and have learned that activity can be painful but there must surely be things we can do. Unfortunately, immobility is a huge problem for neuropathy patients. It can shrink your muscles even further and cause them to lose flexibility. Your metabolism will decrease, which means again, less energy and more fat gain.
There's a huge range of physical abilities amongst neuropathy patients, according to what the disease has done to you. Many people with just numbness or tingling in a few toes may be able to carry out a great many 'normal' exercise activities. On the other hand, many people for whom every step is painful will need to search hard for things they can do. Remember, the message is, we're trying to maintain our lung and heart health with some sort of aerobic movement and we're trying to reduce the dangerous fat build-up in the blood stream and around our organs by burning off calories.
More Information: Exercise Rx for Nerve Pain
There's no way around it, whatever exercise we find to do, needs to be backed up with a healthy diet. That's obvious and doesn't need further explanation here; there are thousands of advice sources for healthy eating.
Low impact exercise rather than inactivity is the answer. In the past, people with neurological problems were often told not to exercise at all. Hopefully the information in this article has convinced you that it's pretty much essential. Sitting for hours on the couch is only going to put a stop to efficient metabolism and slow up every part of your system. It may be painful or tiring, or both but you should try never to be sitting still for more than an hour. Even if it's just five minutes exercise while you're walking around the house, try to make a habit of breaking up the pattern of sitting or lying down and try to exercise as many parts of your body as you can think of. The four links from eHow.com at the end of this article, give some excellent, easy to understand advice for people with neuropathy, who are wondering how to go about improving their fitness and general health.
It's important to reassure people who are still depressed at the thought; not because they're lazy but because exercise is just so difficult. Whatever you can manage to do is better than nothing at all. You will feel so much better if you can achieve even small steps on the road to getting fitter. See it as a daily challenge and a break from the routine of being in pain, or being exhausted. Try to give yourself a reason to be so tired.
Music is a good motivator. Put on your favourite music and let your body decide how you want to respond to it. It's a silly example but even lying on the couch, you can flex the muscles in your buttocks to the rhythm. Lying on the couch or bed, you can do all sorts of exercises: moving your legs; making letters of the alphabet with your feet. Wave your arms in circles; push your palms together, or clasp them and try to pull them apart. Flex your stomach muscles to the music; breathe deeply, squeeze a tennis ball, push full Cola bottles into the air and use them as weights, whatever; do whatever you can; invent stuff! There are so many possibilities without expensive equipment or fashionable sports gear and you know you always wanted to find a legitimate reason to listen to Abba!
More Information: Exercise (From the Foundation for Peripheral Neuropathy)
It is important to warm up before doing anything and that warming up will be relative to what you can eventually achieve. It's vitally important that you don't pull muscles, or inflame joints; that will only destroy your will to push on. Start gently and build up until you can beat your own record at whatever you're doing. It sounds childish but for the person who's disabled in some way by neuropathy or HIV-related exhaustion, literally every little bit helps and if you can make it just a little bit fun, you'll want to do more.
It's a question of building up a series of good habits; just like it is with healthy eating. Even getting up and cleaning something will give you satisfaction because it's an excellent physical exercise involving more than one group of muscles. Ideally you want to be able to build up a sweat and then you know the calories will be burned off but not everybody can do that, or come even close. This is why it's even more important that you do something, no matter how small. At the same time, you need to listen to your body. Only you will know when you've really had enough, or have done too much. Equally, only you will know if you could have done just that little bit more!
To sum up, the person struggling with neuropathy, or HIV-related fatigue, or other disabling health problems should bear in mind the four sorts of activities we need to aim towards:
For us it's all a matter of scale but hopefully you now have a good idea of why you should develop your own exercise regime based on those exercise types.
Now I understand all too well, how this will still appear as a mountain to climb for significant numbers of people. The whole message of this article is to tailor your activities to your own situation. If five, or ten minutes a day is all you can do, then it's all you can do but it's still so much better than doing nothing. Think of it as prolonging your life maybe just by minutes, or hours, or days and maybe for years!
For many others, whose physical abilities have not been so compromised by the effects of HIV, this will just appear common sense but regular exercise is also important for the person with HIV who has no health problems at all. It's logical; keeping fat down, building up muscle strength and improving your heart and lung capacity is money in the bank for the future. Michelle Obama says 'Let's move' to families but let's pretend she's also directly talking to us; hey, if it works ...!
I admit I hate exercise: most of the time I just don't have the energy; or the pain in my feet is too much, or I feel too weak. I just want to lie down in front of the TV with some comfort food at hand and take the pressure off. However, one TV programme shocked me enough to realise what's probably happening inside my body. I need to train myself to do something every day and the following day or week, do a bit more. I also need to be conscious of what I'm eating and not reward the pain and discomfort by feeding it treats!
It'll take time; as I say, I'm naturally resistant but I now realise how important it is. I want to reduce the mass of visceral fat that's both visible and having an effect on my breathing and other bodily functions. So I'm going to try to exercise my way back. I won't be turning into a gym-bunny and certainly won't be joining the ranks of muscle Mary's but the alternative of living more and more slowly and grinding to a halt on the killer couch is not an option!
This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.
Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part One
HIV and Neuropathy: How to Avoid Becoming a Nervous Wreck
English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.
Arriving on TheBody.com is the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.
I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.
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