“If your path is more difficult it is because your calling is higher.”
I am fortunate enough to receive emails from people who either need advice, want to vent or just want support. There is one special person who emailed me for the first time: November 16th, 2014. I will share with you her email in order to show how much strength each of you have and how much can change once one accepts their condition instead of resisting it.
“My goal for this blog was truly just to help people suffering and show them that there is hope and I am living proof. For a long time I thought I was truly helping people, now I am not so sure.”
The above two sentences have pushed me into emailing you. I came across your blog a few months ago and have wanted to comment many times but never have. I am a very private person and I suppose I would find it hard to be open and honest about my life with chronic pain as for the most part I do not share with people just how awful I feel. My partner is incredibly supportive and I am very lucky for this. Friends on the other hand have drifted away and mostly have no clue how bad I feel.
I have been in hell for the past two years since I developed fibromyalgia and I am still undergoing various tests to try and ascertain the cause of my pain. Deep down I know that a diagnosis will not result in a cure and learning to live with it is the best I can hope for. I have been having a really difficult time lately due to a major fare up and I have gone to your blog for inspiration and comfort. Your honesty when discussing suicide and chronic pain have helped me enormously as suicidal thoughts have haunted my days of late but seeing you discussing this out in the open has made me put it into perspective. Yes, sometimes I want to escape the pain and suicide seems like a valid escape route but when I examine my thoughts probperly I realize that I do in fact want to live. It has been your blog that has helped me to be honest with myself about this and reading about your experiences has made me realize that I am not alone.
I am currently using pain medication to cope and cannot see this changing in the foreseeable future but reading in your blog how you manage your pain has inspired me to try mindfulness and meditation. It is going really well and especially helps the suffering part of my chronic pain. I have less stressful thoughts about it and I truly believe I am at a turning point with my management of it. There have been days when I have been in agony, unsure if I can go on living and I have gone to your blog and always found something that has been of help. Sometimes it is just knowing someone else out there knows what I am going through.
Never for a second doubt the good you are doing with your writing. I do not know what I have would have done without it. There will be many others out there like myself who have never commented or got in touch with you but are helped by your words. I just want to say thank you for the work you are doing . You have a gift for getting ideas across and your words have been a great comfort and inspiration to me over the past two months.
Since I received this email, this incredible woman and I have kept in touch and recently re-connected. I asked her if she would mind if I interviewed her not thinking she would agree to such, but I had to ask anyways. Within seconds, she responded: yes, I would love to answer any questions. I knew then this was not the same lady whom emailed me last year for the first time: something had shifted. I will share with you my few questions and her responses. I must say her responses left me with tears of both happiness and empathy for so many of us who have chronic pain.
1. When were you first diagnosed with chronic pain?
A: About four years ago I started with pain on and off which moved around my body. Then three years ago over a few weeks, I suddenly went downhill. The pain became severe and all over and with it came chronic fatigue. The pain has never gone away.
2. What have been your biggest losses due to chronic pain?
A: I have lost my social life and with it many friends. It is hard to keep in touch with people when you are unable to get out too much. This is something I am still coming to terms with. I have lost a lot of my freedom in that I cannot go where I want when I want. Your world shrinks when you have chronic pain and I am trying to focus on the little things because that is where happiness lies.
3. Did you ever feel like giving up?
A: When the pain first got bad there where illnesses and deficiencies that were being investigated and I was sure that eventually doctors would find what was wrong with me and make it better. Gradually it sank in that this wasn’t going to happen and that there was no magic cure. I was going to have to accept that I would probably have pain the rest of my life. This hit me hard and depression set in. For a long time I wanted to give up every day. I would cry and say: “I can’t do this anymore.” About a year ago I hit rock bottom and was sure that I could not go any lower.
And then I did.
I came very close to ending my life. I could see no other way around the pain. I planned how I would do it and wrested with very serious suicidal thoughts. The one thing that stopped me was that I could not do this to my boyfriend who has supported me through all of this.
4. I have known you for quite some time and you are in a very healthier place than when we first connected. What has changed?
A: There is not one big thing that has changed but rather lots of little things which have kind of snowballed in a good way, one positive act upon another. If I had to name the start of this then it would be my attitude. I decided that what I focused on grew. I had plenty of proof of this and so I decided to act as though this was the case. Jessica’s blog really helped me to see this as her attitude is such a positive one and with her help I started to think about things differently. I changed the direction of my attention and stopped focusing constantly on my pain and how awful it was.
I tried to cheer myself up as much as possible and stopped being angry with myself for being ill and started to support myself. Sometimes we can feel incredibly lonely in our chronic pain and I think this is because we desert ourselves when we need our own help the most. I started to meditate a little and to re-connect with myself spiritually. My spiritual life has become stronger than ever and being in touch with this side of life has brought some major changes for me.
5. What helps you the most with your management of chronic pain?
A: What helps me the most is learning to relax and take care of myself. I love curling up with a fleece blanket with my iPad or a book and a cup of tea. I love sitting in the garden with my boyfriend when the weather is nice. I find the fresh air, flowers, trees etc. very healing.
A few months ago a homeless cat decided she wanted to move in with us! She has been amazingly supportive and such a comfort. Slowing down, practicing meditation if I am stressed can be a big help.
I do take medication to help manage the pain and whilst it does not eliminate it, it does take the edge off when it gets very bad. I am currently learning about the chakra system and finding working with it is helping my fatigue.
I think it is important to find a balance between being present with your pain and distracting yourself from it. Sometimes I do not feel meditation will help me as I am unable to sit with how I am feeling and at times like this it is kinder for me to distract myself, read a book watch a film. Other times it would not be helpful to use distraction as I do need to sit with my breath and my pain to check in with myself and monitor where I am at and what I most need.
6. What advice would you give my readers who are in their darkest hours of chronic pain?
A: Reach out to someone. I walled myself off from people and it nearly killed me. It is important to be heard and for someone to be present for what you are going through. If you cannot talk to friends or family, reach out to Jessica. Sometimes it is hard to connect with friends and family because they do not have chronic pain and cannot understand how we feel. Sometimes just getting up and getting out of bed is an act of bravery and unless you live with this every day you can have no concept of this. *Amen
Please if you are feeling as I did a year ago reach out and ask for help. I never thought I would be happy again or that I would enjoy life. My life is not how I planned it, but it does not mean that I cannot be happy. I am filling it with new things, things I would not have had it not been for chronic pain. Chronic pain steals from us and we are left feeling empty so fight like crazy to fill this hole with positive things. Start small, just tiny acts of self care each day. It feels impossible at first but I promise you that you can take your life back bit by bit. I am in the process of doing such each day.
There is a quote by Joseph Campbell
“We must be willing to let go of the life we planned so as to have the life that is waiting for us.”
I try to remind myself of this every day.
Love you lots Jessica. Thank you for being there for me in my darkest hour. You have no idea what a light you were for me when I was at my worst.
And my eyes are again filled with tears as I did not see her last few sentences until just now. I do not write this blog for fun or to brag about how I almost died and now live a happy life despite chronic pain. I write because I have to write: it is my calling. I believe I fell off that bike for a reason. It is my passion and sometimes it is beyond difficult to share my story with the world. I have to. I think of the millions of people who suffer from chronic pain and want to end their lives as I once did. I cannot imagine feeling as I did for those ten years and I still have no idea how I made it. I cry just thinking about how some/many of you feel right now because I know that feeling so well it hurts. I am so fortunate to have people like Bev reach out to me and not only share with me their story but take my advice. More importantly let me know that I am not doing this for nothing and am making a difference.
Now, this is a strong woman. I knew she would get to where she is now and I know she will continue to grow with bumps in the road because that is life, the bumps are just a lot bumpier with chronic pain and that is okay. To say I am proud and humbled to have been a part of Bev’s journey is an understatement. She has transformed and I know all of you can too. You are not alone and do not have to live in hell forever. And I mean it, reach out just as Bev expressed. Email me: you are not bothering me. I want to help. I did not have brain surgery and a life with chronic pain for nothing!
Thank you so much Bev for sharing your story. My heart is shining for you.