Firstly can I please thank so many of you who have written to me and commented on the last fibro blog post. Wow I didn’t expect the support and kindness I got, I don’t know why because you have always been so amazing before. I suppose being away from things for so long has made me doubt myself more than I realised. Receiving feedback and comments makes all the difference to me, those few minutes you spent saying the smallest kind thing boosts me and gives me more hope and courage to carry on doing things. A million squillion thank yous.
I will continue writing my findings from the pain management and sharing things that are helping me if that’s ok. If it helps you and you’re interested then fandabbydozy if it’s not your thing then just wait for the pretties again, there will be plenty. I have quite a list of fun stuff to tell you about in the coming weeks and months.
So here is the second part of my fibro journey.
I briefly mentioned the run up to how I found out I was living with fibromyalgia & chronic fatigue syndrome (yes I have both lucky me) in the first part of my story. I was getting somewhere, I had a diagnosis and now I was looking forward to getting the cure and moving on with my life. Light at the end of the tunnel and all that jazz. Turns out theres no cure though, bummer. But that doesnt mean I was going to let this syndrome rule my life, beat me or define me.
Living with chronic pain is difficult, as I outlined a bit in the last post. It changes your personality in ways you dont see happening. It breaks down relationships, sorts the wheat from the chaff in your friendships as well as family relationships. You become moody, erractic with your behaviour, anxious, self esteem is slowly chipped away. You daren’t tell people you’re in pain yet again because they become bored of hearing the same thing, you feel like noone understands. You find yourself becoming isolated and withdrawn.
I never saw these things happening I just suddenly found myself in that situation. I hid from the reality of the situation. Instead of using the social media follwers for support and being open with people I hid and got someone to keep my facebook pages for me while I withdrew further and further. Its not that I didn’t want to talk to people and share things I just couldn’t think of anything useful or positive to say and to be honest didn’t want to depress anyone. So bit by bit I separated myself from real life and people close to me and then did it to my online family because I had lost the ability to communicate my feelings to people. I had totally lost control of my life. I let go of things I held dear to me. In a sense I gave up, although at the time I thought I was battling harder than ever before.
It’s nearly two years since my diagnosis and a year since I started hiding from you all. I think you must have noticed although I couldn’t say or admit that life had beaten me for a while.
I have been putting lots of things into action very slowly to compensate for if I get worse. Thus the year spent in writing and launching online courses, so if I become bed ridden again I still have a way of earning money to pay bills. I’m trying to be practical and put securities in place for my family should things slip back down that slope. I tried having assisstants to help with the workload of packaging and admin but I found the stress and responsibility for weekly wages was making me poorly again and actually the lack of contact with the amazing supporters of my business was making me more isolated and I needed to be back in the front line. I spent too much time teaching and writing and not enough time making which is my main therapy, no stitching makes Marna a very empty person. Its been a long journey over the last few years but I’ve learnt so much about myself, my family and my business. I have learnt what makes me happy and what is important in my life. I now have focus and priorities and a work life balance that is realistic and not work heavy. Most of all I am learning about my condition, how and why it happened and what I need to do to make life fun again.
The most exciting thing I have been doing is learning about how to manage my pain. That might sound pretty dull to you, but what this means is that I am learning how to be happy again, I have hope and a future again, and thats damn exciting. For the past two weeks I have been in a pain management programme given by the NHS at my local hospital James Cook University Hospital in Middlesbrough. Eight weeks in total, three hours a week.
This programme, already in two short weeks, has absolutely astonished me. The information they give is so insightful and has given me such hope. It will absolutely change my life, no doubt about it. So far we have learnt a great deal about the brain and how it works regarding chronic pain (chronic pain being anything that lasts more than 12 weeks, acute pain is 12 weeks or less). A group is put together, every few months, of people that are despirate to help themselves and learn practical ways to improve their lives. We have access to physiotherapists, an OT, a physchologist, who are leaders in their feild of pain management. We as a group all have different backgrounds and reasons for how we got there. But we all feel the same.
You’re probably wondering why I’m telling you all about this, well the things I have learnt I feel everyone should know, because they are beneficial to so many of us, not just those that suffer with fibro, but anyone with chronic pain due to physical or emmotional pain (there is absolutely no difference between the two by the way, proven fact) post tramatic stress syndrome, Car accidents, cerebral palsy, the list is huge where pain effects us in obvious as well as invisible ways. Just because you can’t see it doesn’t mean its not as real as a cut, a broken bone. I’m not dying, Although so often it feels as if I am. I am fighting for my quality of life. But you know what in a way that is fighting for your life, depression and the things that living in constant pain can bring can sometimes make you feel so desperate and alone that not living is a better option. Robin Williams’s tragic death has shown us that.
I have learnt, after years of trying on my own, to set realistic goals and learn how to pace myself so I don’t spend weeks in bed after pushing so much my body falls apart. I have learnt that the brain is insanely clever and a little bit cruel. How emmotional triggers and events in our lives can cause such pain and trauma that they are as catastophic as a broken spine or huge brain damage. I now understand that meditation and mindfulness is essential in my recovery.
I am beginning to understand how two catastrophic events in my life have triggered my brain and nervous system to live in a constant state of terror (that anxious fight or flight place that you go to when you’re under threat, muscles primed, ready for action in the face of danger). I never ever turn off and that has changed the way my brain behaves and that has caused actual physical pain so bad that I take copius amounts of diazepam, tramadol, co codamol, next stop morphine, to be able to function and live a normal life. I have to walk with a stick a lot of the time, and there are many times that my body and skin hurts so badly my children cant even touch me. I have tried cutting out dairy and wheat from my diet and that has really helped. I know it doesnt work for everyone but I was lucky there. So I now use a mix of drugs, meditation, diet and mild exercise. It changes all the time to keep up with differnt things happening in my life.
I have tried and tested many drugs, I’m not a doctor I can not tell which you should try, everyones different and what works for me won’t necessarily work for you. I’m only using my journey as thats all I know, I can’t tell if it’ll get worse or what is store for you. No one can sadly. You just need to listen to your body and make your own judgements based on your own findings and feelings. Like its THAT easy!
The brain is so very very powerful. But now I am learning the tools to regain some power. Theres still no cure, the damage that has been done is irreversible but I can manage it now and I don’t tourture myself with questions of why. I have my days of bitterness and anger because I’m human but mostly I am eager to live. My new life although full of pain is still so much better and more fulfilling than my old life, because now I know what truly matters and what I want from life. I have cut out a lot of the negatives, I have let go of trying to care and look after people that only bring negativity to my life and I use all my energy on my beautiful children and deeply loved husband and now I even spend time on me. Putting myself as an equal on that important list has meant I am a better mother, wife, friend, more fun to be around and hopefully getting back to the Marna who creates things that inspire and is a positive person for you to all be around too.