Greetings,
The idea of what other people can do to help a person with fibromyalgia has been something which has been rattling around in my head of late. This mainly comes from a point of people not understanding what having FM is like and also not understanding about what a person with fibromyalgia really wants in the way of support. In some ways this comes from not understanding the condition itself, but it is not just that.
Dealing with someone with a chronic condition is difficult for others most especially where they do not understand what the person wants. It is even more difficult where the person with the condition is unable to articulate what is going on or what they want. In this way it is really a two-way street in that information needs to be flowing in both directions for real understanding. With this situation in play, it is of little surprise that people get frustrated, on both sides.
So I will start with something simple. A person (friend or family) with FM approaches you and looks like they are not doing well at that time. As well as many of us have learnt to hide our pain, there is still evidence of it present. You ask how they are doing, they give you a list of what hurts and in what way (if you are lucky). Here is where people go wrong, it is not sympathy that the person wants here, they want some understanding and empathy. This is a not a competition for the "Mine hurts more than yours" trophy. You will find that empathising with the person will do a lot more for them than sympathy.
One of the greatest things about FM is the feeling of being alone. When a person empathises with them with regard to their condition, and they can see even a glimmer of understanding, the individual with the FM can see that they are not alone, and will begin to feel better. This is really simple but really useful. Sympathy is like a pat on the head and a pass off to the next topic. Empathy is engagement with another person with a degree of understanding and this is so much more useful.
The feeling of being alone also affects other things especially where it comes to getting support which can aid them. The feeling of being isolated means that many develop tough skins and become highly independent individuals. Used to struggling alone and dealing with what they can. This independence unfortunately also makes it difficult for them to ask for help, even when it is really needed. This is where some of the understanding which was mentioned before becomes even more important.
If it is your first time dealing with a person with a chronic condition knowing what to do and when is hard. This is because it is difficult to understand what is going on with the individual. It is at this time that engagement on your part is necessary, remember the point about empathy made before. Once you understand what is going on it is easier to see the signs where help would be appreciated, even if it is not asked for.
It is surprising but at this point in time, it is where the small things help. Getting an item, or volunteering to do so is helpful. Even if the request is denied, once again there is the feeling of not being alone as indicated above. Many people with FM have issues with asking for help due to some of the stigma attached to the condition, so they will often struggle, or simply do without. Small amounts of assistance go a long way at this point in time. Simple things will all person to understand that help is out there and all they have to do is ask. This may take some time though.
Most of the highly independent individuals will push until they cannot, and even at this point in time will deny help, it is at this point in time if help is denied, it may help to be a little forceful in your approach. Encouraging the help will often break through such stubbornness and make the individual realise that it is okay to ask for help, or even accept it.
This is a rather rough guide for dealing with an individual with FM. It can also apply to people with other conditions also. Many of these individuals will not ask for help, but when it is offered will take it, or understand that they are not alone. Remember it is understanding that these people want, a degree of empathy. Sympathy is a stop-gap measure, empathy and understanding are much more useful and give much more aid.
Cheers,
Henry.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Saturday, March 9, 2013
Thursday, November 12, 2009
My Coping Mechanisms
Greetings,
The previous blogs have been designed to introduce you to FM and some of the issues associated with it. This was designed to create a level of understanding so that you can understand the problems that I face having this particular condition. The important thing here is that it is understanding that I am seeking, maybe a little empathy, but sympathy is not the goal. To this point this blog will be dealing with some of the ways that I deal with having FM, and the counters which have been developed. Some of these are medical and some are things which I have worked out for myself.
One of the greatest problems with FM, aside from the varying symptoms, is its randomness. Not knowing how well you will function tomorrow leads to frustration in a lot of ways. In most instances I approach this by living day to day except for those instances where this is not possible. You can plan for some of the days where you know things are going to be a problem, but this is really only a modicum in the grand scheme of things. Medication also helps level out the ups and downs also.
The biggest element in medication is getting on to one which suits you. This requires a lot of negotiation with your doctor. I have been prescribed all sorts of medication and it took quite some time before we found a combination of medications which enabled my symptoms to be dealt with, without having any major side-effects from the individual medications or the combinations of them. Anti-depressants are the prime way for dealing with the depression associated with FM and for the most part they work quite well. Unfortunately this does not deal with all of the problems associated with the condition. They do help, but they are not the total answer to all of the problems posed by FM.
Pain is an element of FM which cannot be ignored, as much as I have tried to over the years. I have a relatively high pain tolerance, but painkillers do help quite a bit in dealing with this. Once again it is important to get a painkiller which suits you and of course, does not interact badly with the anti-depressant. There are some over-the-counter painkillers which can help take the edge off the pain associated with FM. In most instances pain is an element which is pretty much constant and the painkillers bring it down to a level which I can deal with. Of course on those good days I am actually free of pain and this is a god-send. Getting decent sleep is a great thing and helps with the condition, but it is not always possible to do this naturally. This is where sleeping tablets can help the process.
Sleep is the time when your body recovers from the day's activities and if it is not quality sleep you will not recover from the stresses of the day. Sleeping tablets can help with this and prevent a person from lying in their bed for hours thinking too much, and eventually counting the ridges in the ceiling or the amount of panels in the walls. The best sort of sleeping tablet is one that gets you to sleep and keeps you there. Of course it also needs to run its entire course before the next day comes so you do not wake up drowsy. The selection of this medication as with the other two above has to be done carefully so there are not interactions, and so the side-effects are minimised. The combination of these three medications help you to smooth out the rough patches in your existence, but never quite completely do the job. The individual also needs to find other things to assist them.
Foods which you enjoy eating are always a good thing as it encourages you to eat them. A loss of appetite in my case is usually the result of stress or pain depending on the particular situation, and of course food is fuel. Trying to run on an empty tank is bound to result in failure. My diet in general has not changed all that much from previously. There are supposed diets which help with FM, but I have never tried one. I have found that eating healthy foods which I like works much better than most diets that I have seen. This is where we will see a little irony in my case. According to some doctors, red meat, sugar and caffeine are all bad for people with fibromyalgia, along with several other things. I looked at this particular list and went "No way." This would take a great deal of things out of my diet that I actually enjoy. This is where the randomness of FM truly shows its face, especially in my case, with regard to food. I actually found that caffeine actually reduces my level of fatigue, increases my level of energy and increases my capacity to do things that I enjoy. I told my doctor about this particular situation and he told me if it works use it. The result of this is that I actually drink quite a lot of caffeinated beverages, eat what I want, and feel much better for it.
I have categorised individuals with FM into two main camps. Now, before I do this I must say that this is my classification and nothing medically based, just something that I have observed. The first group tends to be rather inactive. This is usually the result of them being afraid of being in pain due to activity. These people tend to wrap themselves up and don't tend to do much. The other group are those who decide that going out and doing things can only improve their outlook on life. These individuals go out and find active things to do and tend to push themselves in these activities. Of course this can result in them being in pain afterward, but it is the achievement that they have made which is more important to them. I have quite squarely landed myself in the second group. I have found that an increased level of activity actually improves my feelings of myself and also my pain levels.
With regard to activity, there are two types of activity that I use in order to cope with my condition. These are usually dependent on what I am able to do during the day. The first type of activity is less active. It is things like playing computer games, reading and other more inside activities. The second type of activity involves going out and actively participating in activities which involve physical activity. These activities are things such as walking, playing sports and others.
I use the less active activities on those days where I am not feeling so good. These improve the situation as I am able to see achievement in what I manage to do during that day, even if it is only achieving words written, or some game played. These activities are designed to keep the mind active while giving the body a rest. It is the self-recognition of the achievement of the activity which is important. Anyone who knows me knows that I love fencing. This is the major physical activity that I am involved in when I am feeling well. Once again it is the achievements resulted which enable the me to feel good about it. I will actually be writing a later blog about the benefits of fencing to the individual with FM. Both of these types of activity relieve a level of stress and this is important as it does improve my overall well-being.
The final coping mechanism I would like to talk about is an external one. It is not something that I take and it is not something that I do. It is something that others do for me. One of my greatest assets in coping with FM is my family and my friends. The supply a support network which has helped me a great deal in coping with my condition. This is not just through doing things for me that I can't because I am having a bad day, it is simple things like simple visits and communcation with me. A simple conversation to see how I am and what sort of issues I may be having is always helpful as it allows me to get things out of my system. This sounds really simple, but I can tell you for me this has been a hard path. I used to not talk about how I was actually feeling, I would hide my pain and discomfort as I felt that they could not help me, so why burden them? The encouragement to do the various activities that I participate in outside and also my more solitary activities has been a great asset. This level of understanding from their point of view has helped me greatly to understand that I can get help when I need it, and there really is the achievements that I only really percieved to that point in time. To these people, and you know who you are, I must say thank you, you have all helped me greatly.
While there is no recognised cure for fibromyalgia, it can be dealt with, even on a day to day basis. It is only through negotiation with others, my doctor, and friends and family that I have found that I can cope, and most of all I am not alone. Each one of these people may have suggestions for things that you can do in order to improve yourself, or may just be a friendly ear to talk to. I would not be in such a more stable condition that I am now without the help of my current doctor. Through his various medication regimes and support my symptoms for the average day are quite level. Without the combination of these coping mechanisms I would not be in the more positive situation that I am in now. I realise that I will continue to have good days and bad days, but at least with the coping mechanisms that I have developed myself and those given to me, I will push through it.
Cheers,
Henry.
The previous blogs have been designed to introduce you to FM and some of the issues associated with it. This was designed to create a level of understanding so that you can understand the problems that I face having this particular condition. The important thing here is that it is understanding that I am seeking, maybe a little empathy, but sympathy is not the goal. To this point this blog will be dealing with some of the ways that I deal with having FM, and the counters which have been developed. Some of these are medical and some are things which I have worked out for myself.
One of the greatest problems with FM, aside from the varying symptoms, is its randomness. Not knowing how well you will function tomorrow leads to frustration in a lot of ways. In most instances I approach this by living day to day except for those instances where this is not possible. You can plan for some of the days where you know things are going to be a problem, but this is really only a modicum in the grand scheme of things. Medication also helps level out the ups and downs also.
The biggest element in medication is getting on to one which suits you. This requires a lot of negotiation with your doctor. I have been prescribed all sorts of medication and it took quite some time before we found a combination of medications which enabled my symptoms to be dealt with, without having any major side-effects from the individual medications or the combinations of them. Anti-depressants are the prime way for dealing with the depression associated with FM and for the most part they work quite well. Unfortunately this does not deal with all of the problems associated with the condition. They do help, but they are not the total answer to all of the problems posed by FM.
Pain is an element of FM which cannot be ignored, as much as I have tried to over the years. I have a relatively high pain tolerance, but painkillers do help quite a bit in dealing with this. Once again it is important to get a painkiller which suits you and of course, does not interact badly with the anti-depressant. There are some over-the-counter painkillers which can help take the edge off the pain associated with FM. In most instances pain is an element which is pretty much constant and the painkillers bring it down to a level which I can deal with. Of course on those good days I am actually free of pain and this is a god-send. Getting decent sleep is a great thing and helps with the condition, but it is not always possible to do this naturally. This is where sleeping tablets can help the process.
Sleep is the time when your body recovers from the day's activities and if it is not quality sleep you will not recover from the stresses of the day. Sleeping tablets can help with this and prevent a person from lying in their bed for hours thinking too much, and eventually counting the ridges in the ceiling or the amount of panels in the walls. The best sort of sleeping tablet is one that gets you to sleep and keeps you there. Of course it also needs to run its entire course before the next day comes so you do not wake up drowsy. The selection of this medication as with the other two above has to be done carefully so there are not interactions, and so the side-effects are minimised. The combination of these three medications help you to smooth out the rough patches in your existence, but never quite completely do the job. The individual also needs to find other things to assist them.
Foods which you enjoy eating are always a good thing as it encourages you to eat them. A loss of appetite in my case is usually the result of stress or pain depending on the particular situation, and of course food is fuel. Trying to run on an empty tank is bound to result in failure. My diet in general has not changed all that much from previously. There are supposed diets which help with FM, but I have never tried one. I have found that eating healthy foods which I like works much better than most diets that I have seen. This is where we will see a little irony in my case. According to some doctors, red meat, sugar and caffeine are all bad for people with fibromyalgia, along with several other things. I looked at this particular list and went "No way." This would take a great deal of things out of my diet that I actually enjoy. This is where the randomness of FM truly shows its face, especially in my case, with regard to food. I actually found that caffeine actually reduces my level of fatigue, increases my level of energy and increases my capacity to do things that I enjoy. I told my doctor about this particular situation and he told me if it works use it. The result of this is that I actually drink quite a lot of caffeinated beverages, eat what I want, and feel much better for it.
I have categorised individuals with FM into two main camps. Now, before I do this I must say that this is my classification and nothing medically based, just something that I have observed. The first group tends to be rather inactive. This is usually the result of them being afraid of being in pain due to activity. These people tend to wrap themselves up and don't tend to do much. The other group are those who decide that going out and doing things can only improve their outlook on life. These individuals go out and find active things to do and tend to push themselves in these activities. Of course this can result in them being in pain afterward, but it is the achievement that they have made which is more important to them. I have quite squarely landed myself in the second group. I have found that an increased level of activity actually improves my feelings of myself and also my pain levels.
With regard to activity, there are two types of activity that I use in order to cope with my condition. These are usually dependent on what I am able to do during the day. The first type of activity is less active. It is things like playing computer games, reading and other more inside activities. The second type of activity involves going out and actively participating in activities which involve physical activity. These activities are things such as walking, playing sports and others.
I use the less active activities on those days where I am not feeling so good. These improve the situation as I am able to see achievement in what I manage to do during that day, even if it is only achieving words written, or some game played. These activities are designed to keep the mind active while giving the body a rest. It is the self-recognition of the achievement of the activity which is important. Anyone who knows me knows that I love fencing. This is the major physical activity that I am involved in when I am feeling well. Once again it is the achievements resulted which enable the me to feel good about it. I will actually be writing a later blog about the benefits of fencing to the individual with FM. Both of these types of activity relieve a level of stress and this is important as it does improve my overall well-being.
The final coping mechanism I would like to talk about is an external one. It is not something that I take and it is not something that I do. It is something that others do for me. One of my greatest assets in coping with FM is my family and my friends. The supply a support network which has helped me a great deal in coping with my condition. This is not just through doing things for me that I can't because I am having a bad day, it is simple things like simple visits and communcation with me. A simple conversation to see how I am and what sort of issues I may be having is always helpful as it allows me to get things out of my system. This sounds really simple, but I can tell you for me this has been a hard path. I used to not talk about how I was actually feeling, I would hide my pain and discomfort as I felt that they could not help me, so why burden them? The encouragement to do the various activities that I participate in outside and also my more solitary activities has been a great asset. This level of understanding from their point of view has helped me greatly to understand that I can get help when I need it, and there really is the achievements that I only really percieved to that point in time. To these people, and you know who you are, I must say thank you, you have all helped me greatly.
While there is no recognised cure for fibromyalgia, it can be dealt with, even on a day to day basis. It is only through negotiation with others, my doctor, and friends and family that I have found that I can cope, and most of all I am not alone. Each one of these people may have suggestions for things that you can do in order to improve yourself, or may just be a friendly ear to talk to. I would not be in such a more stable condition that I am now without the help of my current doctor. Through his various medication regimes and support my symptoms for the average day are quite level. Without the combination of these coping mechanisms I would not be in the more positive situation that I am in now. I realise that I will continue to have good days and bad days, but at least with the coping mechanisms that I have developed myself and those given to me, I will push through it.
Cheers,
Henry.
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