The most important discovery I've made so far in my struggle with chronic pain, is that I have lots of options for pain relief. If I see my goal of having a life unrestricted by pain as a building project rather than as a race, I am free to choose different building blocks and combine them in various ways in order to find a combination that I am happy with.
Personally I don't believe in miracle cures any more. My first few years as a chronic pain patient I was desparate to find a cure and willing to try just about anything. Always hoping that this treatment, this operation or this medicine is finally going to make it all go away... and being disappointed time and time again. But as the years go by, I've tried hundreds of techniques and treatments and have gone through both good and bad periods. Now I have finally come to accept that sometimes it hurts more, sometimes less, sometimes I understand it but quite often I don't.
It's not a magic miracle cure I need, it's a lifestyle that lets me enjoy life whether I have pain or not.
Taking care of my health by doing the right things in my daily life is my preferred cure for chronic pain today. Eating habits, sleeping habits, exercise... essentially everything I do and how I do it. Each choice and each action is one small but vital piece in the structure I am building. They all count towards my pain prevention and when put together they can result in long periods where I am well-functioning and pain-free. Completely without drugs or tiring and expensive treatment.
This building project is both empowering and enlightening. For every building block I find that helps me improve my health and well being and reduce my pain I regain some of the power and some of the freedom that my chronic illness has taken away.
The source of the pain may still be there, but it doesn't affect me as much anymore.
Hello Anna!
ReplyDeleteI find it remarkably refreshing to read your blogg. I love that you tell things as they are!
Its fantastisc to hear someone else talk about improving health, and fighting the ongoing battle it is having a cronical illness and pain, both with one selfe and with the healthcaresystem (in Norway) the way you do it!! Its an inspiration! Thank you!
I agree that there is only one path to dealing with cronical illness and pain, and that is acceptance and finding your individual path..your own way to accept and deal with the enevitably fact that you have a cronicall illness, without letting it define you,
Almost two years agi I was diagnosed with PSA and half a year ago my 5 year old got JIA, childrens revmatism in the hip bones.
I now know how to deal with the healthsystem, and be a good ambassador for my child. She is defenceless, and thats what sometimes scares me the most. Children that doesnt have resourceful parents can easily end up as a puppet being pushed around in he healthsystem.
They want to give her methotrexate, but have no plan to take her of the medicine if it works, then they intend to keep her on it, maby until she is a grownup, shes 5 for %((=%%!
Its difficult.
We want to go to Sweden to get a second oppinion about our daughetrs health. I would be very greatful if you know anyone in Norway or Sweden who can help us, a good revmatologist?
I really look forward to following your blogg. Its an inspiration.
Hello Tone and welcome to my blog :)
ReplyDeleteThank you for sharing your thoughts and feedback - it means a lot to me :)
Very few people understand the battle of living with chronic illness, and how draining it is when you have to fight both the health care system, your own failing body and your environment at the same time. I have found that online networking is the best way for me to learn and to collect inspiration and am glad to share what I learn!
I'm sorry to hear about your daughters condition, JIA, and understand your frustration with the proposed MTX- treatment. Honestly, even though I hated having to take it, MTX helped alot. It provided enough relief - the crack in the wall - that gave me surplus energy to try other lifestyle changes to treat my RA. That's how I found the gluten-free diet that has held my RA in check for almost 16 years now without medication. Today I use a whole range of lifestyle alterations (as I write about here) to keep my RA in check and stay as healthy as possible, and I believe it is possible to live with and overcome many diseases with a patient centered multi-disciplinary approach.
One thing is the medicine, but it's very important that you get a doctor that you feel is well qualified, sincerely helpful and doing her best. If you are not happy with the doctor you have, don't hesitate to try to get a new one!
In Norway the rheumatological dept at Diakonhjemmet Sykehus is very good, I don't know if you have been there yet? I have not been treated for rheumatism in Sweden but I know that the swedish Revmatikerförbund (patient organization) recommends this specialized clinic: http://www.spenshult.se/
It might be worth checking out?
I wish you and your family all the best:)
PS: You may be interested to hear that I also run a norwegian blog which is slightly more political, about the norwegian health care system and buerocracy, at www.diagnostisert.no - if you haven' seen it yet :)
Thank you for good advise about medical healthcare.
ReplyDeleteI love your Norwegian blogg, Ive read a littlebit already. You say so much of the things that I think..
I am amazed at how our outlook on life can change when we overcome our own selfishness. When did miracles cease to exist though? That one I find difficult to grasp, but maybe with extreme experimentation and a small collection from the "Hall Of Knowledge" I can remember the truth about my pain and let go of the world.
ReplyDeleteI admire the valuable information you offer in your articles. I will bookmark your blog and have my children check up here often. I am quite sure they will learn lots of new stuff here than anybody else..
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