Every doctor you will ever meet will tell you the same advice no matter what illness or disability you have… “Eat well and exercise.”
It has long been the accepted pillars and hallmarks of good health and I am sure if I should ever find myself in a coma some doctor, somewhere, will make the suggestion that I eat well and exercise as much as I can.
The problem is when you have diseases and disabilities that make simplest things agonizingly difficult and almost impossible. I am sure one of the basic problems that doctors, health workers and healthy people have is that they cant imagine situations where eating and moving could become virtually impossible. People tend to be blissfully ignorant of these things when they are not challenges that you are familiar with. I certainly didn’t worry about them until I had to.
You see at least three times this year I have had months where eating was almost impossible and I have had to live off protein mixes and rice water until my stomach could handle anything more solid than that. So eating healthily can be agony and there are times when I have cried at the very thought of it.
Now, lets tackle my next favourite topic “exercise”… It is such a difficult topic for me because I truly wish I could be as active as I was. I would give anything to do what I once could. I HAVE done anything and everything I can to be more mobile and have more movement back. I even DREAM about walking, running, dancing and swimming. There is no way that I CHOOSE not to exercise.
Being able to move is the most precious thing that people in my situation struggle to be able to do every second of the day. We don’t choose to be bed bound. We don’t choose to be wheelchair bound and we don’t CHOOSE to be disabled. So we fight and we may have to fight for the rest of our lives. Not many people understand that and I hope that they never have to either.
So we fight to move. We fight to walk. We fight to toilet on our own. We fight to feed ourselves. And we fight with the whole concept of ‘exercise’. You see what I can and can’t do changes from moment to moment and day to day. On a good day I can shower, walk to the toilet… I take all the drugs, the infusions, the biologics, the steroids, the pain killers, the immune suppressants, everything I can and everything they tell me to so that I can ‘exercise’.
When I first started experiencing terrible pain and difficulties I would drug myself up on as many pain killers as I could just to be able to move around. The repercussions of this was so hard that I realized I couldn’t sustain it. On top of which the nerves and muscles in my body where beginning to not work as I need them to; which is all vital to the ability to exercise.
You see, many trainers, healthy people and the general public believe that all that is required to become healthy, mean and lean is motivation. If only this was true. If only!
I have all the motivation I need, everyday of my life when I look at people walking by my house, when I see the pictures of peoples holidays, when I watch movies of people dancing and walking along the beach with their loved ones. I have all the motivation I need just looking into the eyes of my husband and wanting to cook him a beautiful meal to thank him for all that he has done for me. Motivation is only a very, very small piece of the exercise puzzle to people like me. The rest of the equation relies on bones, muscles, veins, nerves, brain impulses, heart beats and lungs all working together to produce movement and ‘exercise’. Take away or compromise any one of all those things and you are in for a very hard and heartbreaking struggle, everyday of your life.
So, now that I have explained some of my ‘diet and exercise’ challenges, I slowly began to realise that there are just as many different Autoimmune stories as there are sufferers. Many of whom are able to do different levels of activities at different times of their disease activity and lives. I am always astonished by how different our stories can be, so astonished that I decided the best thing we could do is join us all together and share our stories.
So many of us all feel tremendous challenges and ‘guilt’ about our physical abilities that I believed the only people who can really understand how hard it is to ‘keep moving…’ is someone else that struggles to ‘keep it moving’ too. So I decided to start a Facebook group to connect with others like me and I have been amazed with the amount of people who have reached out to me to share their own stories and pain. It has helped tremendously and it is worth more than I can describe.
We all have our own disease activities, our own issues, our own medications, our own different autoimmune diseases and we all know what its like to fight everyday of our lives just to do the things that every one else out there takes for granted. We encourage each other, we comfort each other, we inspire each other and we believe in each other, and sometimes that is the best things we can do to “keep it moving…”
If you would like to connect with us and share your own personal stories of exercising, from gentle range of motion movements, hydro therapy, marathon running, favourite sports and everything in between. No matter what your level is we will be there to cheer you and support you whenever you need it! We may not be able to control a lot about these diseases and our daily abilities but we never have to be alone in our struggles.