Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Multiple Chemical Sensitivities (MCS) Awareness Day.
This year I’m participating again. The theme for 2015 is ‘A Vision for the Future’.
Like Sally, I feel that May 12 Awareness Day is about helping others who don’t live with these conditions to better understand what life is like for those of us who do. (Not that awareness raising should only occur on one day of the year.)
What I’m hoping to get across today is that, although we may have many challenges in our day to day life that ‘healthy’ people don’t need to consider, we still have the same hopes and dreams for the future.
So, now that I’ve provided some background information let’s get on to my response to the theme…
Visions, hopes and dreams
Although bad health may limit my ability to undertake many activities people consider to be ‘normal’ for someone my age, I haven’t let this steal my hopes and dreams for the future.
Turning 30 this year has led to me thinking more and more about where my life is heading and what I have achieved so far.
I have achieved so much with my life so far that I am proud of, including:
- Completed my Arts and Science degrees with honours in the science.
- Worked with individuals, communities and businesses to create a more sustainable future.
- Raised funds to publish a picture book for raising awareness of invisible illnesses (due to be published later this year)
- Married the man of my dreams
- Travelled interstate and overseas for work and holidays (before getting ill)
Although I’ve achieved so much, there is one dream that always seems to be just out of reach for me… Having a child and starting a family.
This is an ongoing issue for me, and something that my husband and I have been discussing quite a lot lately both with each other and with my doctors and specialists.
Although my dream was always that my family would at least be started before I was 30, that is not going to happen. If everything goes well, I may have my first child while I’m 30 but even that seems unlikely.
There are so many additional concerns to consider when thinking about starting a family when you live with a chronic illness.
- What impact will my conditions have on my ability to conceive and carry a child to term?
- What impact will pregnancy have on my symptoms? increased pain/fatigue/nausea?
- How will I cope when the child is born?
- Will any of the medications I’m on affect my pregnancy/child?
All of these questions are ones I’ve been asking myself, my family, and my doctors and specialists.
We’ve been unable to get a clear answer from any of the doctors or specialists which makes it hard when trying to make an informed decision.
My husband, rightly, has concerns about my health and my ability to cope with pregnancy, birth and child rearing. I’m also concerned about how my body will cope with it all but to me it’s worth it if I’m able to fulfil my lifelong dream of becoming a mother.
The closest we’ve had as a response from the doctors is that the pelvic pain, currently thought to be caused by Pelvic Congestion Syndrome, should not get worse with pregnancy given that I’m having success in reducing it with the pelvic physio’s advice and guidance. In regards to my ME/CFS and Fibromyalgia, none of my doctors or specialists have had enough experience with pregnancy and these conditions to be able to say what may happen.
So, as you can probably tell from all of this, my biggest vision for the future is to be a mother.
My vision does include other things, such as increasing awareness of invisible illnesses and helping others live their own simple, sustainable and meaningful lives, but being a mother is definitely at the top of my list.
What is your vision for the future?
Don’t forget about the opportunity available to you at the moment to join us for our first ever online workshop to help you take the first step towards your own simple, sustainable and meaningful life. Read about it here.