Category Archives: Night time thoughts

Www.marnalunt.co.uk/blog

living with fibromyalgia – managing & understanding the pain

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.

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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.

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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 You find yourself becoming isolated and withdrawn.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.

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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!

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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.

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Www.marnalunt.co.uk/blog

living with fibromyalgia – searching for the diagnosis

I could write a book on this subject. It’s a very long story and one that I will split into parts so you don’t lose the will to live reading the thesis that I have written. Ha. But I wish there had been more information written by people suffering with this when I first learn of my ‘new life’ so I felt less alone and frightened, so that’s why I’m writing.

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Today  I thought I would address something a little more personal but something I live with everyday so it impacts my work, my business and my life in general. It’s something I have discovered rather a lot of the creative people I know have themselves. It may prove usful for you to know as you may have the same condition so you know you’re not alone but you may also know someone with it. Basically I’m of the opinion ‘better out than in’ and feel now is a good time to chat about it.

It’s not my normal subject so if you’re not interested then feel free to ignore and come back for the next post I write about pretty things and stitching, but if you’re interested in me as an artist or just interested in learning something new then I’d love you to join me on my journey.

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I am now 39 and for at least 20 years now I have lived with pain, depression and anxiety. I’ve spent many hours and days in hospitals having tests, having counselling and being told that I was a hypercondriact, I was making stuff up for attention, it’s artist temperament, ‘women’s problems’. And any other stereotype you can think of. No one listened, people saw my as a complainer, a freak, too much baggage and avoided me, a lot. It felt a bit pants to be honest. Very frustrating and I started to believe them. I felt worthless and isolated, and frankly a bit bitter.

When I was younger the pain I felt through depression and anxiety was very physical when it occurred but it didn’t have a huge impact on my life, I could still function relatively normally. I avoided situations which caused flare ups (when the pain gets a lot worse due to normally over exerting yourself) and although annoying it was something I pretty easily overcome. I was treated for the depression and that helped the pain and very slowly I started to learn how to manage it and know the signs that my body was giving out and things were good.

Then 8 years ago I had my son. As many readers of my blog already know my son was born  and suffered huge brain damage at birth. Life changed and I was his full time carer as of course any mum is. I utterly devoted myself to him. My focus was to ‘make him better’, every amount of energy was given to him, to appointments, to therapies, taking him to places to stimulate his brain and body. I still remain entirely devoted to him, he’s pretty damn fantastic and is a very happy & loving little boy. But the drama of his birth has had a huge impact on my and my husbands mental health. We have flash backs, are very nervous all the time all the things you’d expect from having lived through a dramatic event. But during this time my focus was on him, certainly not myself, we mums do not feature on the list when we have children of any shape, size or colour.

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Then I had my daughter 5 years ago and life suddenly changed beyond anything I could have imagined. I had post natal depression, to be honest I was depressed the whole time I was pregnant, I was terrified and regretted getting pregnant. So by the time my darling and perfect girl was born I was numb. I had a planned c section because the mental trauma of the first birth was too much to get over, there was nothing physically wrong with me at all. But anyway she was born, she was healthy ( a huge! ).

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I won’t go through the whole post natal depression thing because my doctors were amazing and got me on pills straight away and helped all they could and I got over it and it wasn’t the core issue (another blog post perhaps). Took about two years but I got there. But in the background after she was born I never felt myself again. Something shifted that day. Suddenly the panic attacks were no longer manageable, the pain started very intensely again. I found it hard to walk, I couldn’t sleep without waking in pain. My back hurt all the time, I had head aches, I found it hard to look at things without sunglasses on. My IBS was back with a vengeance, I was exhausted all the time but not a normal mum with two kids sort of tired this was different it was over whelming all consuming and stopped life as I knew it. I stopped socialising, I couldn’t talk to anyone & didn’t want to. I was given diazepam (rather a lot of it) to manage the panic and pain. It helped but there were side effects. I was a useless and pointless mum,I was unloveable, I couldn’t play like I used to, I was angry and had a short temper because the pain never went away. I often couldn’t even bare to be touched because it just hurt too much. I had moments when I couldn’t speak or remember words. I felt I had lost my mind. I couldn’t articulate anything, I felt foolish and stupid and unprofessional, paranoid. My marriage started to suffer.

Test after test showed nothing wrong but I felt like I had something so serious wrong with me, I was convinced I could die and noone was listening. I gained weight as a side effect from all the medication I was having to take which made things worse and then people used that as the excuse for me being tired. I was treated like a lazy attention seeker and I should just shut up and get on with it. I tired not to make a fuss, I tried to just carry on. It was my problem and all in my head.

Then one day I lost feeling in my entire body for an hour. I couldn’t move, totally paralysed, couldn’t even talk. It was terrifying. Then is started happening more often to my limbs. I would have huge stabbing pains that took my breath away and I couldn’t help but scream or shout out. I couldn’t put my clothes on they hurt so much, I couldn’t bare to touched or hugged. I couldn’t stand up for long or lift things, I couldn’t cook, clean, take my kids to school. Life just stopped.

So I went on google.

It was like suddenly all those years of pain and hurt made sense. I found the word Fibromyalgia and I could tick every box on the list os symptoms, I could not have been more text book if I tried. It was a massive relief, I mean like a thunder bolt bit and I wanted to scream at everyone, SEE I DIDN’T LIE!!!! there was a but of course. The but was that many doctors still didn’t believe in the syndrome, it was still seen as a bit of a made up new diagnosis for nusense patients. A bit like autism was years ago, to explain naughty children (don’t even get me started on that one!)

But I though sod it, I’m going to the doctor and I will not let them send me away, I will make them listen. I went to a new lady gp and sat down and told her very matter of fact exactly what my symptoms were. Without asking anything further she touched some pressure points and the pain sent my body into shock. She gave me some pills and told me that I must come back in a few weeks and report if they were helping with the pain. She didn’t give me a diagnose because she wanted to see where this led, I got sent for a scan on my stomach, blood tests and x rays.

The pills sadly didn’t work, they gave me fits and I went back. The test results were in. They were all negative. I started to cry and wanted to give up. But the doctor explained that this was good news. How exactly was THIS good news!! Well it meant I DID have fibro. All other possibilities were gone and there were some pretty horrific things they were testing me for, I found out later, thank god I did’t know at the time. I got new medication and pain relief. I saw a specialist to make things official.

The diagnose helped. It made all the difference. People couldn’t ignore me anymore, they had to listen. They didn’t understand but thats ok why would they, it’s invisible, but now they knew I wasn’t lying. I hadn’t made it up, it wasn’t in my head.

Now you would think that was the end but really it was just the beginning………
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Part Two – Managing & understanding the pain. Next week.