Posted: May 15, 2012 5:00 am
Redial wrote:Not really. Basically every doctor I've been to says that I just have to rest and "take it easy" I found that low sugar and low lactose diet help sometimes. But my illness is usually brought on by stress or sickness or even injury, over doing it the day before, not sleeping correctly or travelling.
Doctors are helpless to treat this syndrome because it is so varied. There isn't one symptom they can pinpoint and treat, which cures the rest of them. So they write scripts for drugs that seem to help but that don't fix the underlying problem, because nobody knows exactly what it is.
I can only ask questions in an effort to offer some advice:
1) You've said that your symptoms are brought on by illness or stress. I can identify with that. I've protected myself from colds and flu for years because my immune system over-reacts to ordinary cold germs. It takes me six weeks to recover from what most other people call "a cold" and that in me, always becomes full-blown flu. I'm still fighting a cough after four weeks since I was in bed with a flu I picked up from my grandson's cold. What I usually do when I go out is to make sure that I do a lot of hand-washing, especially before eating. If I do feel sniffles coming on, I flush it out with lots of fruit juice. i didn't do this when I was visiting the kids, mostly because they didn't have juice, and I didn't make the effort to buy some before it took hold. I'll make sure I buy a couple of boxes of juice before I settle in for the next visit with the children.
2) Travelling. Yes I get that as well. Travelling really takes it out of me. In about 10 days we'll be going on a week of road trips. Luckily we have a very comfortable car which allows me to relax as if I'm in my recliner. I'll play music and chat and not allow myself to stress about work undone, and leaving the house with a stranger. I find air travel especially stressful, because the small seating space and the long treks to the plane and back to collect luggage. But I still prefer to fly to the north rather than take the bus. That would be extremely stressful for me. Try to have a good night's sleep before going on a trip and to make time to recover from jet lag when you get there. Even if you have to add an extra day just to sleep. It does help. When we went to Scotland two years ago, I spent the first day sleeping at the resort before we started the tours around Scotland and again, we had a nice car so I could relax on the tour of England. I couldn't do bus tours of Europe, it would kill me to travel with a crowd of strangers and to cat nap at night while rushing around to night time entertainment. As a result, if we can't drive there, I don't go, which is why I'm an armchair traveller, except to the UK which I know and where I can travel without stress.
3) Stress and injury. That I can definitely relate to. With all the stress I had between June and October last year, I had a mental meltdown, from which I've only now recovered. Stress is a killer. You have to identify the stressors you can control, and remove those, and the ones that you can't learn to handle them with "it will pass." You can't avoid the death of loved ones (and I include pets in this because the loss of my dog last year was exactly the same as the loss of a child) so you have to find positive ways to deal with death. Find whatever works for you and deal with it that way, even if other people don't agree. For me it's avoiding funerals and all the sadness that goes with them. Also I find social gatherings very stressful, I hate being made to go to parities, especially the sort where people get dressed up like idiots and I'm given a central place where people are putting cameras in my face. I try to explain this to my family, and they sort of get that it's not that they're not important but that baby showers and other parties of that sort actually make me ill.
4) Mental, or cognitive issues. When I was growing up, even suggesting that you had something like ADD was the same as saying you're insane. Even now, people still regard autism and dyslexia as "mental deficiencies." It was getting my own cognitives issues identified and learning to deal with them, and those of my kids, that helped me cope in what most people think is "normal society." I can't quite figure out what "normal" means except to use psychology's definitions of "normative" spectrums when it comes to behaviour, and most people fall outside the normative in some of their behaviours, so to me, there is no "normal" behaviour. I've accepted that I am somewhere on the autism scale with my obsessions, hyperactivity, lack of ability to concentrate and exclude the sounds around me and my social issues. One of my sons, who is in teaching, he is exactly like me, only a little higher on the scale of autism and he has dyslexia as well. Over the years we've both learnt to deal with the problems and work around them. If you have any issues, identify them, and figure a way to work with them rather than fight them, this will reduce stress levels and make you more relaxed.
5) Food. Are there any food that make it better/worse? Identify those and work with them. If something causes you to go into an "attack," avoid it. For me it's strange. I can have coffee with sugar, but not with sweeteners, any artificial additives in food make me ill, so rather than try to lose weight, I prefer to be well, so if I need sweetening, I use a little sugar. But I can't have sugar in large concentrated amounts, like in cake for instance. A slice of chocolate cake will send me to bed for two days. So I don't eat cake, but I'll rather have a cracker and a cup of coffee with a spoon of sugar, or tea. I've stopped drinking diet sodas altogether just recently that's helped with my pain. If I have to have a "soda" then I'll have Coke, oddly it doesn't affect me the way cake does, even though there's lots of sugar in it. Identify your personal food problems, I would say first avoid preservatives and additives, try to eat as much natural food as you can, and if you have to preserve food, try to cook for yourself, and freeze it.
6) Underlying medical issues. My doctor recently tested me for and discovered a thyroid problem. It's being treated and now after three months, I'm feeling very well, despite the recent flu. It may have been a problem for longer than I've known because I haven't felt this good in years, possibly a decade or more. So if there's any underlying medical issue, get checked and help that.
7) Drugs to help the problem. If you are on anti-flammatories, thane something to protect your gut. That's most important because they mess up your digestive system. Check every over-the-counter medicine for the things that hurt you. If the doctor puts you on a chronic medication, try for the lowest dose first and take it "religiously" if you go into denial about the condition, you only make it worse. You can't ignore the things that are wrong, a diabetic would die if they did that. Treat your illness as if it will kill you and treat it properly.
Redial I hope it helps you to talk to us about this. It certainly has helped me to come out and be open about it. I didn't wish this on myself, it's not my fault and I'm not using it as a way to avoid work, or social contact or responsibility. I do those all to the best of my ability and adjust them to suit the problem, not the other way around. If people care about me, they'll accept that I can't do what "normal" (whatever that is) people can do. If they push or question my choices or abilities, then they are more concerned about themselves than me, so I don't bother with them. Please talk to us, other people will offer whatever advice they have to help.