A voyage of discovery to be as “well” as a chronically ill person can be
by Orkney Fibromyalgia Sufferer
All my life I have felt like I am trapped. Trapped by what? It’s something that I have never been able to truly put my finger on.
Is it living on an island that makes me feel this way? Stuck on a peedie isle, surrounded by the sea. Perhaps I am confusing feeling trapped with feeling isolated? I suppose living on a remote island all my life, cut off from what I call the “real world” does feel like being trapped in many ways. It’s all about the way you look at it presumably. I feel emotionally tied to this place. A prisoner of circumstance. One part of living on a peedie island I find most difficult is that your past is never your past. Every day you walk along the corridors of memories past. You carry it alongside you like a ball and chain. Continually greeted by faces and places of old. This is probably why I have always felt trapped.
If I were to leave Orkney my heart would forever remain here. There is something about crossing the Pentland Firth in search of pastures new that feels somewhat final. Perhaps if I left I would never return. So is it fear that I feel? Perhaps it’s a combination of the three. Trapped, isolated and fearful.
I often joke that one day when I walk down Kirkwall Pier I will jump on a ship and sail away, who knows when or if I will return.
When I became chronically ill, these feelings of being trapped were magnified tenfold. Only now I felt trapped by my body and mind. Intertwined with isolation and fear. Stuck in this defective vessel, sailing across stormy seas forever. Now and again reaching momentary safety in the eye of the storm before again being thrust into choppy waters. Without tools to navigate my way through I felt helpless. Like a complete paralysis had taken over me. Now I had to use the stars like sailors of old.
When I was diagnosed my journey to “wellness” was all about medication. As it was all that was on offer to me I blindly accepted that offer. Plotting my course, embarking on what I call the runway medication train. Had I been warned I wouldn’t have listened. This was a journey I had to take myself.
What is the runaway medication train you ask?
Inevitably you will find that once you start taking many different medications at once you will at one point need to take another medication to manage or ease the side effects of another. In my case, my voyage on the runway medication train saw me take as many as 30 tablets a day. I have taken two trips on the train and I have no will to take a third. I call it the runway medication train because if you are not careful you can end up taking handfuls of medication without really paying too much attention to the gradual increase in the number of tablets. You continue to take them because you think that they are doing you good or because it’s the only option offered to you at the time. I myself took two trips on the train before I came to the final realisation that the medication I was taking was doing me more harm than good. That’s not to say that all medication is bad or that it doesn’t work. It just didn’t work for me. I have met plenty of people who find that medication works for them as one treatment option. I respect everyone’s right to make that choice. I am simply imparting my experience in the hope that it might help someone.
Reflecting on the journeys I took aboard the runaway train I understand now how easy it is for some sufferers to become addicted to the very medication they are taking to help them. We are seen as addicts and drug seekers which adds to this already heavily stigmatised illness. I feel fortunate not to have become addicted or drug dependent. Not everyone is so lucky. But is it luck? Or is an addiction all part of our genetic makeup? I have learned that certain people are predisposed to addiction and that sometimes life events can hurl you directly onto that path. My acquaintance whom I met through social media shares his story about his heroin addiction, overcoming that addiction to join the Scot’s Guards, guarding the Queen at Buckingham Palace. He has written two books about his life. Every day he shares his story of how he overcame his addiction in the hope that he can help addicts and their families. Why am I telling you this? The reason I started following him was that I was impressed by his story and his desire to help others. I share the same desire. It’s why I do what I do. It’s why I run my social media community and share my story in the hope that it helps other sufferers or their friends and family to understand what they are experiencing.
Links to Paul’s books. Paul donates all the proceeds from his first book to homelessness in Scotland and has raised a massive £16,000 to date.
Heroin to Hero https://amzn.eu/d/2BB1YRv
FINAL MISSION HEROIN TO HERO https://amzn.eu/d/ezgCL6Z
The part of Paul’s story that particularly interests me is how he overcame his addiction, simply by using the power of the mind. The mind is a powerful tool. I think that we all underestimate its power. From my experience, it’s the power of my mind that has got me through not only life with three chronic conditions but every bit of adversity life has thrown at me. My stubbornness or duggedness to do anything I put my mind to and not be beaten by my body. Before I became ill something that I always said is that “my mind is in charge, it tells my body what to do whether it likes it or not!” This has stood me in good stead. Without a strong mind, I would not be sitting here writing this. I would be a recluse, confined to my bed. I would have turned my back on any kind of normal life. Sure I get things wrong and I end up paying a high price for the things I force my body to endure. My doctor once told me that my duggedness is my best and worst quality and I tend to agree. What I have come to realise is that time and memories are precious. I no longer take life for granted since it has been so dramatically altered against my will by chronic illness.
In time as the years have gone by I realise now I am better equipped to navigate the stormy seas of chronic illness. I can change course to avoid dashing myself on the rocks and set my course to avoid the storms.
Then there are times I find myself heading straight towards the storm, unable to avoid its clutches.
It’s taken me over a decade to realise that life with chronic illness is all about balance. Holding continual negotiations with your body. Preparing yourself for the price you have to pay each time you undertake activities that healthy people take for granted. I fantasise about cleaning my whole house from top to bottom. I joke that you know that you are chronically ill when you fantasise about cleaning. I also learned not everyone possesses the tools to navigate their way through. Nor are we afforded the luxury of guidance and a choice of treatment from the NHS. I’ve become to grudge paying my national insurance. Unable to access the services they say that they provide to Fibromyalgia patients. It’s a postcode lottery it seems and unfortunately for me and many other islanders, we don’t reside in the winning area.
Suffering from chronic illness for so many years has given me a great deal of perspective. Setting up Orkney Fibromyalgia Sufferer and more recently volunteering for a Fibromyalgia charity has brought me into contact with others suffering all around the world.
Chronic illness is a journey and we are all at different stages. There is no right or wrong way to manage its symptoms and their life altering impact.
Some people will tell you that medication is the answer, and others will tell you it’s not. Some people will tell you that meditation, mindfulness, and the holistic approach is what’s best.
Others people’s opinions don’t really matter. Fibromyalgia is such a complex condition. Each individual’s symptoms and response to treatments are extremely nuanced. There is no one size fits all solution.
I said that the opinions of others don’t matter. Nor do I find them helpful. What is helpful though is their knowledge and experience. Don’t get distracted by what they think of a treatment. Listen instead to what they have tried. Use this as your guide to what to try next. Or add it to a list of things you want to try or learn more about.
In my experience, doctors and the NHS won’t help you. They will sign the prescriptions, sick lines and leave you to it. More recently the NICE guidelines for Chronic Pain recommend antidepressants, exercise and therapy. Therapy which unless you live in the lucky postcode area you won’t be able to access either.
Where does that leave us?
Self Management. Truthfully in the first few years of suffering from Fibromyalgia every time I heard or saw someone suggest “self-management” I used to internally roll my eyes. At that time I believed that there was a medication out there that would help me. I just needed to find it. I was too green to listen. I wasn’t ready to hear it. Nor was I equipped or knowledgeable enough to know where to start. Little did I know that all the medication would give me would be a catalogue of side effects, withdrawals and weight gain.
Then over time without fully realising it not only had I set sail to the place of self-management. I’d arrived here completely unaware of where I was.
Chronic illness is all about finding a balance, between your daily life, its new set of limitations and the right approach or treatment for your symptoms. A little medication mixed with holistic methods might work. Try things but don’t try too many things at once. Don’t be afraid to go back and try something again. Keep a diary of your symptoms, medications, side effects and any treatments you are trying. It may help you discover what works and what doesn’t. What makes your symptoms better or worse.
Symptom tracker diaries or apps are a useful method to record the results of any treatments you are undergoing and your body’s response to them.
I found online forums useful for discussing my experiences and listening to those of others. It’s important to be mindful that you don’t let them dictate what is right for you.
All this focus on yourself might feel selfish at times. It’s something I struggled with. Putting myself and my needs before others is something that I have never done in my entire life. I have learned that it’s vital to my existence and the management of this new life which was thrust upon me.
All this self-reflection and the understanding of myself and my body, has assisted me in my journey to become the best version of myself that I can be. I hope this for you too.
I still have my dark days. Blinded by the heavy fog, excruciating pain and loneliness. Only now I am better equipped to navigate my way through the stormy sea to a safer place. Taking anchor in the shelter of a safe harbour until the storm passes. Revealing the bright blue, cloud-free sky and glorious sunshine.
I remembered writing this….
All that you write in your article is very familiar territory to me.
Keep on keeping on – whoever you are.