365 Gratefuls

365 gratefuls

 

A few days ago my friend had posted an article of Facebook called “365 Gratefuls”.  With a title like this I was easily drawn to wanting to read the article and within minutes had bought a copy of the book online and was eagerly awaiting it to arrive.

http://365grateful.com/homepage.htm

Haley is a Brisbane mum that found that she was feeling down from the ho hum of life and tells the story of seeing a nun counsellor for some help with her depression.  It leads into the nun suggesting as we may have heard from Oprah many years ago about a “Grateful Journal” Anyways as it turns out Haley was a photographer and found that as part of her daily “Gratefuls” it would include a photo as well as a blurb about her photo.  She then decided to make this a daily challenge then her book was born.  She described how as she got further and further into her project that she was finding it harder to just post 1 article a day.

The article instantly resonated with me and my roller coaster of emotions of having CRPS and a very limited lifestyle.  I thought this was something that could very much help me in my everyday struggles with depression.  I am not ashamed to say depression and that I have it, it’s just that most days I don’t give in to it or I manage to keep myself (somehow I have no idea) away from those thoughts.  By no means does this mean that I am not depressed because each night when I take myself off to bed either at 7.30pm or 1am  the last thought that runs through my mind is “Phew, that’s another one down” and I realise that this really isn’t the way other people think.

So it is Day 7 of my 365 Gratefuls project and 6 out of 7 of these days I have been bedridden with severe pain and unable to get out of a nightshirt let alone put on shorts or track pants.  It is a tricky time to start this process when you are feeling so rotten but I am starting simply with….a good book to read when you are feeling like hell…..and the smell of a beautifully scented candle to try and distract myself.

The way I see it, is this can only bring good into my life.

 

 

 

 

 

 

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Pain

Sometimes the pain is just so bad that you wonder how your body can get through it. How it keeps going and doesn’t shut down like your brain does.

Posture | Just keep moving the best you can #posture #pain

Some great information regarding our posture. I can never ben reminded enough when it comes to this. 🙂

CRPS UK

Posture and ergonomics are both well documented and frequently discussed whne it comes to back and neck pain: “It’s my posture, I know it’s bad”, “I’m always being told to sit up straight” etc. On searching for images you will find the classic picture of someone sitting at a desk with a small arch in their low back, the knees below the hips and feet perhaps on a small stool. The question is, does this work? My answer is: if you sit like that for long periods, do you think this is a good idea? (Sorry, it’s more of a question).

As far as I am concerned, the best posture is one that you often change. It’s alright to sit slumped, feet up on the table, upright, leaning to one side etc etc, as long as you alter this position frequently and punctuate prolonged periods of sitting with movement out…

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The Shame of Chronic Illness

What a brilliant read. I think irecognised this in myself at times.

EDS and Chronic Pain News & Info

The Shame of Chronic Illness

When I recently read the phrase, “I’m embarrassed to be sick”, it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.

At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos Syndrome, a genetic flaw which leads to defective connective tissues. This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.

I am ashamed of being sick. I spent my previous life trying to prove how tough I was, declared my independence early, made…

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How To Understand Someone With Chronic Pain

Just wanted to share, some really great tips and points here.

http://m.wikihow.com/Understand-Someone-With-Chronic-Pain

 

How to Understand Someone With Chronic Pain

Chronic pain changes many things in life, most are invisible. Many people do not seem to understand chronic pain and its effects. Many people do not seem to understand that chronic pain sufferers have attempted numerous alternative therapies and know what therapies have worked or not worked for them. Some people have been misinformed or merely misunderstand.

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  1. Remember that being sick does not mean that the sufferer is no longer a human being. Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body over which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.

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    Learn the code. Chronic pain sufferers will often talk differently from people free of constant pain. [1] A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the doctors can measure effects of treatments. Description of pain on a scale measuring from 1 to 10, the 1 is “no pain at all, feel wonderful” and 10 is the “worst pain ever felt”. Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when you experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief. It’s hard to find the words for that sort of pain.

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    Recognize the difference between “happiness” and “healthy”. When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

    • Respect that the person who is in pain is trying their best. When the chronic pain sufferer says they are in pain – they are! They are merely coping; sounding happy and trying to look normal.

    • Look for the signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning,sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.[2]

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    Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make light of their pain than is the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they’re hiding or minimizing.

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    Understand and respect the chronic pain sufferer’s physical limitations. Being able to stand up for ten minutes doesn’t necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    • Insert “sitting”, “walking“, “thinking”, “concentrating”, “being sociable” and so on, to this step, as the curtailment on a sufferer’s ability to be responsive applies to everything that you’d expect a person in good health to be able to do. That’s what chronic pain does to its sufferers.

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    Leave your “pep talk” mode for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it’s quite possible (for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that you don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!” If you want them to do something, then ask if they can and respect their answer.

    • Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, “getting out and doing things” does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don’t know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to “get their mind off of it”, may frustrate them to tears, and is not correct advice, especially if you’re not medically trained and haven’t got a clue. If they were capable of doing some things any or all of the time, they would.

    • Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can’t always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
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    Never use throwaway lines. Assuming you know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “You’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough”, etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.[3] Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: “So how have you survived?”[4]

    • Admit it when you don’t have answers. Don’t paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying “I don’t know” and then offering to find things out.

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    Check your own patience. If you’re impatient and want them to “just get on with it”, you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

    • A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    • Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can’t be put off or forgotten just because they happen to be somewhere, or they’re right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
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    Be sensitive when suggesting medicines or alternative treatments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.

    • On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable.[5] He suggests that people rarely ask these open-ended “helpful questions” that would help the chronic sufferer to open up and really talk.
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    Don’t be put off if the chronic pain sufferer seems touchy. If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

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    Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the “normalcy” of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

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    Balance your career responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don’t take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you’re probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you’re able but also care for yourself.

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