FIBROMYALGIA & Me

I was diagnosed with fibromyalgia (fibro)  in 2012. Prior to this life was full. Full to the brim. Even though I had suffered depression and anxiety since 1995, it had never held me back. Not to any great extent. Family, friends, a career, socialising, networking and travelling. I owned my own home and loved nothing more than having friends over, throwing parties, dancing at the weekends with my girls and fabulous weekends away. I travelled the world including the USA and South Africa. Then life changed.

I had had another long period of illness where anxiety had been pretty bad and my mood was just the same. For the first time I was noticing that the symptoms were affecting me physically. It felt like the depression was manifesting itself in pain and chronic fatigue.

I eventually went to the Dr and explained the physical symptoms I was suffering. My blood work was done and they came back showing that my inflammation markers were extremely high. Way higher than was considered normal. I was referred to a rheumatology specialist. Following much investigation, the diagnosis was fibromyalgia.

Whilst I was very disappointed by this news, it was also a relief. I was beginning to think I had a constant virus and I was getting lazy! To know there was a reason for the pain and fatigue was a freeing thought. How life would change though, I could never have imagined.

Fibromyalgia is serious disease of the central nervous system and auto-immune condition. Meaning it leaves very little part of the body unaffected. The condition results in widespread pain and fatigue in all muscles, ligaments and tendons. Fibrous tissue builds all over the body. There is a crippling lack of energy, flu like feelings and no endurance. Digestive problems, auditory problems and visual disturbances. Incontinence, pelvic pain, systemic cystitis. The Mental health is affected too. Brain fog and lack of concentration are the most prevalent. But depression and anxiety are also common. Confusion, head aches, memory loss and mental fatigue are also very common. The immune system is constantly compromised so viruses and common colds can wipe you out for weeks and sometimes months. The list of symptoms is literally endless and new evidence comes out all the time.

Fibromyalgia has been around since biblical times. In the past it was known as muscular rheumatism and it is also now known as Fibrositis. It is a complex chronic illness with no known cure.
There are tons of sites on the web that explain the medical aspects of fibro. One of my favourites at the moment is Pro Health’s fibromyalgia online health centre. Check it out for full breakdowns of each symptom.

There are various schools of thought as to what causes fibromyalgia. I had been advised that it is likely due to trauma. This could be physical or emotional. I accept that 25 years of anxiety and depression may well have taken its toll on my body. It is also linked to hormone changes. And even the nature of your birth can lead to damage to the brain and can lead to mental health problems in later life. And there is a known link between the brain, the central nervous system and responses to pain. I also had acute glandular fever at age 20. Very often those who have the Epstein Barr virus, also develop fibromyalgia.

Since diagnosis, I will be honest, the fibromyalgia has gradually got worse with every passing month. Even though I generally take good care of myself these days and I am much better at saying no to the demands of every day life, it is not enough.

I retired on ill-health, in January 2014. It was the best decision I ever made. I had no idea at the time that the condition would become so disabling. So with the freedom of not having to work the stresses of the 9-5, I am able to pace my life. To take enjoyment from small things and care for myself.

My doctors and family have supported me and without them I would not have been able to make the changes to my life. I am single and I don’t have a family of my own. This means that I can focus only on my health without the added pressure of looking after a family. And whilst there is a small part of me that wonders what life would have been like with a family, the greater part of me knows that physically there is just no way I would have been able to provide for them in the way I would have wanted.

As with my mental health issues, I treat the fibromyalgia exactly the same. I try anything and everything to feel good, or just a little better. I try to remain positive and always have hope! This is so important when you have been diagnosed with something like this. Its easy to become quite low with the prospect of a lifelong condition. But there is nothing to say things will always be this way. I always believe that things will get better, I take every day, I don’t plan too far ahead and most importantly I PACE myself. By making small adjustments to my life, it has made a huge difference. For example, if I  have an occasion or event to go to or get ready for then I PACE it. I Take my shower early in the morning. I Rest afterwards. Then maybe I blow dry my hair. Then rest again. Don’t get me wrong, there are many days when even this is impossible. When I can, I do. When I can’t, I don’t.

The key for me is to try to do things in small bites. Rushing around and trying to fit everything in, in a small space of time stresses me out and burns me out really quickly. My adrenal system is fatigued, so I go slowly and steadily. Such a stark difference to my old way of life where days flew by and I lived at 100 miles per hour.

If I do try to attend a social occasion occasionally,  then I also expect some pay back the next few days. I always need time to recover. This will usually be days, sometimes weeks.

Its so hard to make plans though. I do still try, but when you live with conditions like this and M.E., no two days are the same. Whether I am battling chronic pain or chronic fatigue,  it’s not always possible for me to meet the same demands of the social life I once had. I am always cancelling plans as I just don’t have the energy to get ready never mind socialise. At first, cancelling all the time really got me down. I had never been one to miss out. But over time I have learnt that I have to take care of myself and my needs and those closest to me understand this.

Making sure those around you know about your condition, is so important. It is real and it is happening to you. Because its inside and can’t be seen its not always easy for those around you to understand the pain and distress that you’re in. Educate them if you can. Point them to online advice or books or forums.

Some approaches that I have taken have been really beneficial and improved my day to day life. I have made changes to diet.  I take magnesium and vitamin d supplements that have definitely helped. I have done a whole blog post on nutritional supplements. I also still take prescribed medication and there are several good ones that are specifically for fibromyalgia sufferers. Pain killers are also a life saver. So talk to your doctor or specialist. I’ve written a full post on how to manage your Fibromyalgia and M.E.

Having supportive family and friends makes life much easier. Those that have stayed with me through this journey, understand the condition and my limitations and will do anything to support me. At one time in my life, my friend circle was huge. I was a social butterfly and life was filled to the max. Today my life and my social circle is much smaller. Sometimes when you suffer chronic illness, not everyone will understand. The illness is invisible and therefore people will not always understand what you are going through. That’s ok. This is your journey. Be grateful for those that support you, and worry less for those that don’t. Join forums and support groups to get comfort from those that understand your pain and what you are going through.

These days my life is very quiet. This social butterfly takes pleasure in the smallest of things; playing with my niece, curling up with a good book, a trip to the supermarket, cups of tea, gardening, online shopping, taking a short walk, meditation, writing. Writing is my everything now.

So whilst to the outsider it may seem that life is nothing compared to what it was, I am very happy for the most part. In most respects I am happier than I have ever been. Having a chronic illness has meant that I have spent a lot of time with myself. I have learned to love myself and honour what my body now needs. Living with constant pain and no energy is exhausting in itself and is a full time job. So taking care of yourself and being your own best friend and advocate is the most important thing.

Having said all that I keep trying. If there is something, anything, that may make my life easier then I try it. It’s hard trying all the time, particularly when your new approach does nothing. There are still plenty of days that I lie in my bed and think ‘Why is all this happening to me?’ but I don’t stay in that place too long. Its natural to feel sorry for yourself occasionally and you should definitely do it, have a rant and a cry and meltdown. Then get up and fight on in your small way.

There is certainly a period where you have to grieve for the life you had and the life you thought you would have. Thats normal. I would imagine you did not expect it to come to this. I didn’t. Take the time to grieve, you’re entitled to that. Then when you feel some strength again, change your focus. Think of your strengths, think about what you love to do, and find ways to bring joy into your life, even in the smallest of ways. I truly believe that by being grateful for what you have, rather than focusing on what you don’t have, changes the chemistry of your soul and you immediately feel better.

In my opinion, anyone living with chronic illness is a warrior, social butterfly or not. Fight on my loves,

Onwards,

Kiki x