I am no expert, in the medical sense, but I do consider the only expert is one who lives it. How can a person who has never experienced something themselves be an expert on it ?
Advice is there if you need it, in fact, there is bucket loads of advice online, but most of it really needs to be consigned to the rubbish bin. The amount of advice I have read online about my 2 major chronic illnesses, Manic Depression (Bipolar), and Fibromyalgia is mind-blowing. How much of it useful…………not much.
I think that firstly, the best advice is to get to understand your illness. Find out exactly what it is, look at the levels of severity, think about your own symptoms, and try and work out where you fit in all that. Read about medications, check them out, the ones you are on and others. I do this myself, and there are some medications that I will flatly refuse to use due to the possible side effects, why create another major issue ?
I learnt this the hard way, a Bipolar medication which I used to take ( and now actually take again in a much, much lower dose ), has the major side effect of causing high blood pressure. Prior to me first using this drug, I would quite often have normal to low blood pressure, now I am taking blood pressure tablets every day to keep it down. This side effect was actually hidden from consumers, even though the pharmaceutical company who makes it knew it happened. I was getting crushing migraines for almost 2 years, and finally, a nurse decided to take my blood pressure when I went into emergency for one, which hadn’t been done before, and my blood pressure was 220/ 180 !!! I wasn’t having migraines, I was having strokes ! Luckily, none were catastrophic, although I do have slower reflexes and less sensation on my left side, which correlates to the last “migraine” I had, which was very intense on the right side of my head. All caused by a drug to stop Bipolar.
So then, onto other things to take into account, to help you live with chronic illness. Once you know the severity of the illness, look at things that work FOR YOU. I have read so many articles saying exercise is so good for both my Manic Depression and also my fibromyalgia. I tried it for the Manic Depression, getting out, walking miles, riding the bike, keeping active. No noticeable improvement what so ever. And then, also with the fibromyalgia, I have an exercise regime, I try and walk at least 30 minutes every day ( not bad when some days getting out of bed is like climbing a mountain, actually, most days !! ) I do hand weights several times a day, and I do all the physical tasks around the house, like laundry, mowing the lawn, all those tasks you need to do to keep a house. Honestly, doesn’t make any difference to me. I do a lot of stretching too, as that is meant to help. It does, for about 2 minutes, then all the pain comes flooding back. As you can see, all the advice means diddly squat if it doesn’t work FOR YOU. All the physical stuff I do is such a drain on me, rather than a benefit. I do it because I know I need it to stop other health issues, but it does not help the chronic illnesses.
I have spoken before about how I use a variety of techniques to live with my Manic Depression. I use creative outlets, I paint, I do photography, I garden, I write, pretty much anything that will distract me from what is going on. Stopping yourself from focusing on the illness is a big help. I have read recently that this is now a recommended therapy for depressive illnesses, I started doing it before anyone even thought about it. I know it works for me. It means I don’t have to take as much medication, which means I am also not exposing myself so much to all the nasty stuff that comes with medication.
I will say, I am still struggling to come to some solution for dealing with the fibromyalgia in the same way. I take Tramadol every day. I take Panadeine Forte when I have a bad flare up, most of the time both don’t really do much. Warm baths do ease it, but I don’t have a bath. I have tried a lot of the advice you read online, none of it has worked for me. I do know there is one thing that will probably work, but unfortunately it isn’t available in Australia just yet, well not for people with Fibromyalgia. The same thing works for my Manic Depression, before my son was born, I had used it, and never had any issues with Manic Depression. But, with a legality issue surrounding it’s use still, it is not worth jepardising the safety of my son and I. So for now, I am still searching for a solution that works for me.
My main advice for people suffering from any chronic illness is take all the advice with a grain of salt. Try it, if you think it may work, but don’t let yourself become depressed about it if it doesn’t work. Just because someone says it will work, doesn’t mean it actually will for you. As I said at the start, there’s plenty of experts, but the only real ones are those that actually live it.