One of my aims for Braver than I knew, is to encourage the sharing of our life stories in order to help others in similar circumstances feel less alone, and to give the rest of us a better understanding of the struggles people face.
So I would like to introduce Nikki and thank her for allowing me to contact her and ask her what it is like living with her condition......
Please can you tell us what your condition is?
My condition is fibromyalgia which was brought on by the rare cancer I had. The cancer was called chariocarsunoma, which is when a piece of placenta is left in the womb after childbirth and turns cancerous. Until I had chariocarsunoma the doctors were told to check for this type of cancer, at anytime, up to five years after childbirth. But because my children were older the doctors did DNA tests, on both my girls, and the cancer had been lying dormant in my womb for twenty years.
So I have rewritten the medical books.
How long have you had this condition?
I have had chariocarsunoma twice. Having thought I was clear of the cancer it returned and I am now in long term remission. I had this in 2005 & 2006.
The fibromyalgia I have had for thirteen years, since my cancer.
Can you explain what your body feels like?
My body is in constant pain day and night. I take numerous tablets to relieve the pain. However, I always have pain it just depends on how much it hurts as to how it interferes with my life. Also, by taking strong pain killers, there are side effects, which have caused as much of a problem as the pain does. When the pain is acute I take morphine which makes the pain go away, but also I am unable to do anything but stay in bed, due to the effects of the morphine. I also get fatigue, which I now know, is very different from being very tired. When my fatigue hits I need to go to sleep. I have even fallen asleep with hot drinks in my hand. I do get a small amount of warning but it can hit me anytime, anywhere. When I go to sleep I have been known to sleep up to seventeen hours in one go. I spend approximately a third of the week in bed either in pain, on morphine or asleep. I am normally in bed by eight pm.
How has your life changed since diagnosis?
My life has changed in many ways. Before my cancer I was working in management in social services. I would be out somewhere most weekends and out some evenings. I can no longer work and I spend most of my week at home. I am unable to do a lot of the things I did before. It is difficult to plan much as I don't know, not only from day to day, but sometimes from hour to hour how I will be. I can't do very much physical activity as this causes pain and fatigue. I have to think ahead and plan if I want to go somewhere or do something and take a couple of days before the event very quietly. I also need down time after the event to recover. This means if I am going out for a day, then I need two days before and two days after, to go out for just a day. But this does not always work. I can become very frustrated and down at not being able to do all I want to do, I get upset at letting friends and family down when I can't get out of bed.
What treatments have you tried to self help your condition? eg homeopathy, and did you gain any benefits?
I have tried many self -help treatments which have helped to varying degrees. The most effective I have found is CBD oil, which was suggested by my doctor.
The fibromyalgia is not a physical problem. It is caused by the brain telling the body I am in pain, so most treatments will not work.
What do you most wish people understood about your condition?
That when I cannot do whatever I have said I will do, it’s because I can't, not that I don't want to. I hate having to say ‘ sorry I can't do that today’, however, I have very understanding family and friends. I do need people to keep involving me, as I can see how easy it would be to think that I don't turn up or that I’m too unwell, to ask. If I can do it, I will try my best always, to do whatever it is.
How can someone best help you?
Just keep in touch with me and be there when I need someone. This can be an isolating illness, with not being able to get out of bed or being asleep.
Has your condition had an impact on your mental health?
I do get down, rather than depressed. I can feel isolated and frustrated. Sometimes I can lose my sense of humour which is a sign to me, that I need some help, which can be just a nice cup of tea.
Are there any positives to having your condition?
I feel I have become calmer. I also see how important life is and to have the right people around me, for which I am grateful. I think before the cancer I took a lot of my life for granted. I now appreciate my husband, my children, my family and friends. I notice nature, the changing of the trees and the animals. I also praise people more. I feel we can all complain very quickly but often don't take time to say well done, or to write a thank you letter.
What is your favourite way to distract yourself?
Craft is my distraction. I do many crafts (not all well). I enjoy knitting. At the moment I am sewing bags, but doing it the hard way, by making my own patterns. I want to start painting again. But it’s having time, energy, and being well enough to do it all. I also use humour, as if all else in my body stops working, my mouth still works.
And finally, how does wearing Braver than I knew, make you feel?
It reminds me that I have got this far in my life. So, if I can face what I've been through already, I can get through another day.
I also feel it tells others, that they can do it too. Whatever it means to them, without me having to tell them what I’ve been through.
So it gives hope and in turn a feeling of not being alone. Even though each person’s 'braver than I knew' is individual to them, the message has a common theme.