Multiple Sclerosis (MS) Support Group
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I know this is long, but worth the read. Most of us already know these things but most don't follow through on it. (Yes, I am oh so guilty here.)
This was taken from this blog. Giving credit, where credit is due.
http://spinlights.tumblr.com/post/5028727051/for-anon-to-those-just-starting-their-journey-with
12 pieces of advice for someone going through chronic pain/illness:
Never give up searching and fighting for answers. Its exhausting and can be an incredibly long road, but never stop. You owe it to yourself and deserve answers and validation, despite anyone around you telling you otherwise
You may at some point find that the friends you think you have may not be the people you thought they were; people are inherently selfish. People get tired of your illness, tired of you, and sometimes, they leave. The biggest lesson Ive learned through having chronic illnesses is that at the end of the day, I am and need to be my own best friend, the person that will always be there. Once you can establish that kind of relationship with yourself, it will be easier to both hold onto AND let go of others in your life.
Re-evaluate your personal expectations. Adjustment is key and one of the hardest things I have had to learn how to do. For most of us with chronic illness, pushing ourselves can (and usually is) harmful to our immune system. Stop and ask yourself what a reasonable expectation of yourself/daily activities is, rather than comparing yourself to the person you were prior to getting sick or being in pain.
That said, adjusting to a different lifestyle (permanent or temporary) requires a certain type of mourning for a person and life that you do not recognize or have anymore, one that you may never have back. Acceptance was personally the hardest part of my story so far. I am still in the process of accepting that my life has changed and that I cannot control day to day events, that I cant plan things the way I used to, and so on. It is normal to mourn that part of you or part of your life that you miss, wish you still had, etc. It is normal to carry that sadness with you for some time, too, however adjusting to a different lifestyle doesnt have to be entirely negative. Since having to slow things down, take some time off from school, etc, I find myself being more laid back and enjoying and appreciating the little things so much more.
Find an outlet and a hobby. My outlet used to be the gym, now I write (or type, if my hands are too sore to write). Looking to alternative therapies (massage, acupuncture, etc) to manage or cope with pain isnt necessarily for everyone, but you have nothing to lose and only everything to gain. Find a hobby to keep you distracted or busy when youre feeling down or need a stress relieving activity.
REACH OUT. Find a support group; connect with people going through similar experiences. There is a community of beautiful people here on tumblr all going through similar experiences and have the ability to share their personal stories and advice with you, coping skills, and so on. Go online, look at different resources, see what is offered in your community or school if you are a student. This website has some great forums that have answered so many questions for me: http://www.butyoudontlooksick.com/
Humor is the best medicine for pain (and maybe vicodin too). Find the time to laugh at yourself, your illness and shed some light on your dark times. I find this particularly helpful: www.chronicillnesscat.tumblr.com
Doctors and speaking up! Find a doctor you trust, that listens to you, and takes you seriously. If you arent happy with your physician, do NOT hesitate to find another one. If that second opinion is a fail, go for a third. Equally important, be your own advocate. Speak up for yourself if you are concerned about a medication, a symptom, a treatment plan. Speak up if you think you may be dealing with x,y or z. Going to an appointment with a list of questions/concerns will prevent you from forgetting something important. Speak up and never be afraid to advocate for yourself. Your health is in your hands and it is valuable; do not be neglectful.
Bad days and asking for help. It is okay to have bad days, bad weeks, bad months. It is okay to take a day off, spend it being lazy or doing something you enjoy or relaxing on the couch. Depression and anxiety often come along with chronic illness/pain, and even with some of the medications used to treat certain diseases. Pain is exhausting; medical bills pile up; friends leave you hanging; your life is changing: Theres nothing wrong with asking for help and looking at different therapies to help you cope with the mental stress of a debilitating condition.
Youre not the only one. Chronic illness/pain affects anyone close to you: family, significant others, close friends. Especially with significant others and immediate family, they have to cope too. Open communication lines with them; urge them to reach out just as you should to learn their own ways of coping with the stress of taking care or being witness to someone suffering. It is hard to be a care taker and often difficult to be a shoulder to cry on. If communication is open, if everyone has a healthy outlet, and a proactive and supportive mindset, getting through chronic illness/pain will be much easier for all. There are some great articles/resources for significant others/friends/family members on the website mentioned previously, as well as links to other support groups and so on.
The little things. Keeping a positive attitude can be challenging when you feel like the foundation beneath your feet is crumbling, but focusing on positive aspects of your life might just give you the strength to get through that next flare. At the end of each day, I try to write down in a journal 10 positive things I liked/enjoyed about my day. When Im having days where I cant think of anything positive about my day or a reason to force myself out of bed and wake up, I go back and read some of the old entries and remember why I keep going and keep fighting. Perhaps that will help you too.
You are stronger than you realize and you are not your illness. There are days where your illness will overshadow every other part of you, days where you cant help but hide behind it, but it is NOT who you are.
This was taken from this blog. Giving credit, where credit is due.
http://spinlights.tumblr.com/post/5028727051/for-anon-to-those-just-starting-their-journey-with
12 pieces of advice for someone going through chronic pain/illness:
Never give up searching and fighting for answers. Its exhausting and can be an incredibly long road, but never stop. You owe it to yourself and deserve answers and validation, despite anyone around you telling you otherwise
You may at some point find that the friends you think you have may not be the people you thought they were; people are inherently selfish. People get tired of your illness, tired of you, and sometimes, they leave. The biggest lesson Ive learned through having chronic illnesses is that at the end of the day, I am and need to be my own best friend, the person that will always be there. Once you can establish that kind of relationship with yourself, it will be easier to both hold onto AND let go of others in your life.
Re-evaluate your personal expectations. Adjustment is key and one of the hardest things I have had to learn how to do. For most of us with chronic illness, pushing ourselves can (and usually is) harmful to our immune system. Stop and ask yourself what a reasonable expectation of yourself/daily activities is, rather than comparing yourself to the person you were prior to getting sick or being in pain.
That said, adjusting to a different lifestyle (permanent or temporary) requires a certain type of mourning for a person and life that you do not recognize or have anymore, one that you may never have back. Acceptance was personally the hardest part of my story so far. I am still in the process of accepting that my life has changed and that I cannot control day to day events, that I cant plan things the way I used to, and so on. It is normal to mourn that part of you or part of your life that you miss, wish you still had, etc. It is normal to carry that sadness with you for some time, too, however adjusting to a different lifestyle doesnt have to be entirely negative. Since having to slow things down, take some time off from school, etc, I find myself being more laid back and enjoying and appreciating the little things so much more.
Find an outlet and a hobby. My outlet used to be the gym, now I write (or type, if my hands are too sore to write). Looking to alternative therapies (massage, acupuncture, etc) to manage or cope with pain isnt necessarily for everyone, but you have nothing to lose and only everything to gain. Find a hobby to keep you distracted or busy when youre feeling down or need a stress relieving activity.
REACH OUT. Find a support group; connect with people going through similar experiences. There is a community of beautiful people here on tumblr all going through similar experiences and have the ability to share their personal stories and advice with you, coping skills, and so on. Go online, look at different resources, see what is offered in your community or school if you are a student. This website has some great forums that have answered so many questions for me: http://www.butyoudontlooksick.com/
Humor is the best medicine for pain (and maybe vicodin too). Find the time to laugh at yourself, your illness and shed some light on your dark times. I find this particularly helpful: www.chronicillnesscat.tumblr.com
Doctors and speaking up! Find a doctor you trust, that listens to you, and takes you seriously. If you arent happy with your physician, do NOT hesitate to find another one. If that second opinion is a fail, go for a third. Equally important, be your own advocate. Speak up for yourself if you are concerned about a medication, a symptom, a treatment plan. Speak up if you think you may be dealing with x,y or z. Going to an appointment with a list of questions/concerns will prevent you from forgetting something important. Speak up and never be afraid to advocate for yourself. Your health is in your hands and it is valuable; do not be neglectful.
Bad days and asking for help. It is okay to have bad days, bad weeks, bad months. It is okay to take a day off, spend it being lazy or doing something you enjoy or relaxing on the couch. Depression and anxiety often come along with chronic illness/pain, and even with some of the medications used to treat certain diseases. Pain is exhausting; medical bills pile up; friends leave you hanging; your life is changing: Theres nothing wrong with asking for help and looking at different therapies to help you cope with the mental stress of a debilitating condition.
Youre not the only one. Chronic illness/pain affects anyone close to you: family, significant others, close friends. Especially with significant others and immediate family, they have to cope too. Open communication lines with them; urge them to reach out just as you should to learn their own ways of coping with the stress of taking care or being witness to someone suffering. It is hard to be a care taker and often difficult to be a shoulder to cry on. If communication is open, if everyone has a healthy outlet, and a proactive and supportive mindset, getting through chronic illness/pain will be much easier for all. There are some great articles/resources for significant others/friends/family members on the website mentioned previously, as well as links to other support groups and so on.
The little things. Keeping a positive attitude can be challenging when you feel like the foundation beneath your feet is crumbling, but focusing on positive aspects of your life might just give you the strength to get through that next flare. At the end of each day, I try to write down in a journal 10 positive things I liked/enjoyed about my day. When Im having days where I cant think of anything positive about my day or a reason to force myself out of bed and wake up, I go back and read some of the old entries and remember why I keep going and keep fighting. Perhaps that will help you too.
You are stronger than you realize and you are not your illness. There are days where your illness will overshadow every other part of you, days where you cant help but hide behind it, but it is NOT who you are.
I was having a pity party which I don't (I hope?) normally do.
Thank you for the kind words, again I am not usually so negative, it had been a looooooong time it seemed that I could do anything, maybe 8 9 days? No 6 days, goodness.
I got out today went shopping too fun!!!!!!!!
This is a crazy disease I wonder if it is late lyme but I think the blog printed is something I should read very carefully it has a LOT OF WISDOM.
I am trying to accept myself, which the author of this blog talked about but it is hard bcause I do not understand myself let alone accept myself.
As a rule I can somewhat expect to pay for today probably tomorrow. Well we'll see, If this occurs, I am going to model myself after an Amish woman who like me still has the lyme mess. She stays in bed when she is sick, and gets up and works when well. This is a little bit harder in our culture but I think she has the right idea.
Hope all of you are having ok days. and again thanks for letting me vent. Lisa ps today I could have ridden a horse YES!!!
I continued to research. A few months later I tell the pain clinic nurse I want to try amitryptiline and guess what....Presto!! I had found the holy grail (for that problem anyway),
I have been fighting this daily for more than 15 years. These medical people rarely help me. I am the one suggesting what to do. I will never give up looking for answers.
Thanks for the post. I rarely read something I can totally relate to like that piece.
Melanie