When I first got ill I waited to my discover mystery illness, I waited to get better and I waited to get back to my life. I put my life on 'hold'. I just existed and kept my face firmly turned back to the past, waiting to return. I had always had major health problems that I had overcome before, so why not now?
After a diagnosis, I wasn't much wiser because so little was known, no one could give me anything but well meant suggestions and I knew no one with a chronic illness, Fibromyalgia, Chronic Fatigue or anything similar. There was no internet or groups to ask. The doctor said it was permanent though.
I didn't believe him. I still waited through another two years of trying to recover before I realised that I wasn't going to be able to return to 'normal programming'. I finally resigned from my job. I kept hoping for recovery, but I stopped waiting for it. I had to live!
It is important to differentiate between hope and not waiting. Hope means you believe that in the future things will change or improve. Waiting means you stop living the life you have now on the dream that you can return to the past. You can't return; that's why it's called the past.
You CAN go forward. When you stop waiting and realise that today IS your life, you change your focus. You take your life off pause and starting living it. If you aren't facing the future, you aren't going anywhere.
Start creating your life! Not waiting doesn't mean you give up hopes and dreams, just the opposite! It means taking a step forward. It means saying "Yes!" instead of 'Not yet'. A life on pause is a pretty boring thing: no sound, no picture, static. Don't wait, just watching your life pass by, it's happening now!
Take it off pause and play!
When I was first diagnosed with Fibromyalgia I had been very ill for over a year and having tests the whole time. The specialist said to me, " There's no cure, nothing we can do. When you get used to a pain level, the pain will increase each time. I don't need to see you again unless you get Rheumatoid arthritis. Good bye."
I was shell shocked. I'd been expecting something: treatment, a cure, a pill of some kind. I drove home in shock. I felt alone and adrift. I'd never heard of fibromyalgia. Neither had anyone else. I cried. I didn't know what to do! I was also learning how to cope with Depression and I must have seemed a very different person from my previous happy, busy, hard working self.
I believed I would get better and be 'normal'. I put my life on hold for 3 years while I tried to get better. I found any information I could. I tried things they suggested. I also tried every non-traditional idea too. This will fix you, this will stop the pain, this, this, this! I learnt everything the hard way. I don't recommend that. What I do recommend if you are ill, traumatised, going through pain or a hard time is to learn as much as you can about it and reach out other to others experiencing the same. They will understand what you are going through. They will also have ideas or advice that may help.
When I found an online group with FMS, they gave me understanding, a shared bond. When I had some counselling/psychotherapy it helped too. The Internet allowed me to read and analyse advice, medical research and big fat lies too. There are always people out there happy to make a buck off the vulnerable. If it sounds too good...it probably is.
I'm no expert, yet I find many things help me and most people too:
1. Pace yourself. Prioritise day by day and don't over do it.
2. Create an environment and a routine for getting sleep.
3. Get rest - even if you can't sleep
4. Eat healthily and keep hydrated.
5. Be kind to yourself. Learn to say No.
6. Get a hobby. Find things you love and can do and do them!
7. Try to get outside or in the sun, see they sky and trees.
8. Talk to people you like, who like you!
I am adding one more here from my friend Marleen:
9. Do not plan too far ahead.
You might get disappointed in case things aren't possible. If you can continue on schedule, enjoy the moment, it's a gift! She adds that if you can't do as planned, then choose the next best thing and enjoy that one to the fullest. Good advice.
Remember things change. There will be good days and not so good days. But your life is not over! It isn't the same, but it's up to you to make the best of it.
What value am I?
I have had Fibromyalgia and other illnesses for over 20 years. I can no longer do the things that many 'normal' people can do in a day: work, clean the house, shop, cook dinner. On a good day I can do something small. On a bad day when I am physically and mentally exhausted I may even need help to walk to the toilet or hold a cup of tea.
I can't tell you when I will have a good day and at what time. It's unpredictable. On a good day I can do something for an hour or two. I went from a vibrant, energetic woman to one who sometimes cannot even go to the toilet without help. That is devastating.
In our society our value is measured by our job. The better the job, the higher the value. When we meet people we ask them "What do you do?" And so what value did I have if I couldn't work? Did I have some value even though I could no longer sell a kitchen appliance or clean a house? I felt useless.
I had to change my thinking. I had to find a way to value myself. How was I going to see my life when I felt useless? What was my role now? I decided to share my creativity and be the best 'me' I could be. I would be real, honest, open and find a way.
I looked at other friends with a similar life. I imagined what my life would be like without them in it. I realised that if people like myself weren't here, we would leave a big gap. We are the friend you talk to. We listen. We help out were we can. We have learnt empathy and compassion through pain, illness and trauma. We look at the world from another angle. Our experience is different and that may give us insight worth listening to.
So what value am I? I am a good friend, a loving daughter, sister and aunty. I support my husband's passions. I crochet for fun. I help where I can. I practise kindness and hope that someone, somewhere will smile because I cared.
Our value is not in our jobs, the cleanliness of our toilets, the cars we buy or the handbags we own. It is not even in our faces or bodies. It is the people we are inside.
A wise friend said: You don't value yourself by what you can do. You are valuable because of who you are. Thank you Graham. Spot on.
