On this May 12 – International ME / CFS / FM / MCSD Awareness Day 2015 – I was pondering what to write about.
Sally Burch over at Just ME, who is running the #May12BlogBomb, suggested a theme this year could be “A Vision For The Future”.
I often try to picture my own future minus ME / CFS & Electrosensitivity. I’ve done many visualisation exercises on it. In fact, I do them regularly.
But to tell you the truth, I actually forget what it’s like to be totally, completely well.
So before I tell you what I see in my vision for a healthy future, I want to just speak a little about all the things I’ve forgotten, after living with the symptoms of ME / CFS & Electrosensitivity (kind of related to Multiple Chemical Sensitivity) for over 22 years now.
Things I Forget About Being Healthy
1. I forget what it’s like to get through a whole day without a sleep/rest for 1 1/2 – 2 hours and actually feel good.
2. I forget what it’s like not to get pain from everything electro-magnetic.
3. I forget what it’s like to be pain free
4. I forget what it’s like to do a full exercise session of any sort and not have to sleep for hours (or days) afterwards
5. I forget what it’s like to enjoy time with friends and family without looking around for where I can slip off to in order to be horizontal for a couple of hours …
Well, already this approach is depressing me, so I’ll stop. You get the idea.
I forget what the experience is like to be totally healthy.
Frankly, I don’t think I’ve had that experience since I first had glandular fever at age 10, although my teen years were pretty good, and I had a brief revival of energy in my early 20s, which allowed me to travel.
BUT ….
THIS is my Vision Of My (Totally Healthy) Future!
1. I will once again know what it’s like to get through whole days, dawn till 10pm, feeling energetic, pain-free and vibrant. An afternoon nap will be something I only ever CHOOSE to have when I’m on holiday in the South Pacific or the Whitsunday Islands … or just because I WANT to!
2. An afternoon nap will no longer be a must for my quality of life, and so I will therefore get to enjoy beautiful afternoon sunshine on those days when I currently have to quietly drag myself away from the sun to revive my body in bed.
3. I’ll enjoy celebratory occasions with family and friends without having to slip off somewhere to be horizontal for a couple of hours. I’ll get to stay and enjoy the laughter and fun with all my loved ones.
4. Having a stimulating conversation with friends, family or new acquaintances over a cuppa will enliven me and invigorate me, and then allow me to continue on with my day without feeling totally exhausted, while my brain continues buzzing and every fibre of my body feels like it’s on full throttle (thus denying me the ability to sleep!).
5. I’ll be able to plan ahead and not have any fear that I won’t be able to follow through with my plans because of ill health. I won’t feel guilty if I DO occasionally have those fears because I KNOW they’re not going to result in a self-fulfilling prophesy. I’ll just plan, wait for the day, then do the thing I’m looking forward to doing.
6. If I decide to go and see my sister and her family overseas (or other friends) I’ll be totally confident in my body’s ability to handle the trip easily, and for me to arrive at my destination fully able to enjoy 3 weeks of touring around and getting to know the knew country they live in (PS I’m actually going to the US in 7 weeks. The first time I’ve travelled overseas since the electrosensitivity pain started in 2002/3. I’m excited but a little nervous about how I’ll handle it all. Keeping a positive mindset right now and planning, planning, planning to make sure I do all the things I know to do to give my body the best chance of coping well)
7. I’ll go to the gym regularly, get super fit and strong, and enjoy my amazing body for all its worth.
8. I’ll rollerskate, learn Tae Kwon Do, do downhill skiing again, and sky dive at least once.
9. I picture myself doing simple things like cleaning my house for a whole day, getting it really neat, clean and tidy, and feeling naturally tired at the end of the day from hard work, rather than doing 30 minutes and having to rest for 30 minutes (at least) – and at the moment I’m really quite ‘good’ compared to the various periods where I’ve only been able to get to the shower/bath and back to bed, or skip the shower altogether because it’s too exhausting.
10. I run, I laugh, I take my daughter to Disneyland and go on all the rides with her and SHE can’t keep up with me because I am so energetic and strong. I drive down to the beach for day trips BECAUSE I CAN! Driving no longer saps me of energy, so I do 3 hour drives with ease like I used to when I was 18. Because of this our opportunities for weekend trips expand hugely. My finances are growing every day because I have the energy and lack of pain that enable me to work at my dream job(s) online and off, and the costs for health treatments have gone down dramatically which takes a huge strain off. I meditate and do regular intense yoga sessions to keep balance in my life, physically, mentally and spiritually. And I continue to work to empower others with ME / CFS / Fibromyalgia and other Spoonie illnesses to live their passions and purpose – working within their circumstances, while also striving to be the best version of themselves they can be in every possible way; physically, mentally, spiritually, financially, environmentally, …..
When I’m healthy, which I believe will be soon (YES, I’ve been saying that for 22 years, but this time I think I’m right!), I’ll make this hellish journey with ME / CFS / Electrosensitivity count for something.
I’ll take the wisdom I’ve learned in the journey to support others going through illness and tough times.
I’ll become a philanthropist who helps others bring their dreams to life – dreams that aim to help thousands and thousands of people in all sorts of ways.
“Oh, The Thinks We Can Think” and “Oh, The Places We’ll Go” as Dr Seuss would say! 🙂
I could write forever on my vision for a future free of ME / CFS / Electrosensitivity. It’s a dream and a vision that millions of people worldwide share with me … unfortunately!
But I WON’T write forever.
What I WILL do is wish all those with ME / CFS / Fibromyalgia / Multiple Chemical Sensitivity and all other people with severe chronic illness a very, very healthy next 12 months.
May miracles occur, healing be yours, and dreams come true.
Keep Smiling
Louise 🙂
Lacey Stritton says
Hey Louise,
I share that dream with you of a future free from ME / CFS / Electrosensitivity. I would encourage you to check out our new advocacy group, we are seeking to strictly help raise funding for scientific research into M.E.
https://www.facebook.com/pages/Advocating4ME/1606524889591699?fref=ts
Louise Bibby says
Hey Lacey,
I’m so sorry this reply is so late. I somehow missed that I had a few comments here still needing moderation.
I’m so glad to hear you share my dream of a future free of ME / CFS / Electrosensitivity. I will have a look at the advocacy group you have referred to.
All the very best to you
Louise
Lennae says
I love the sound of your vision for the future, we will get there!!!
Lennae xxx
http://www.lennaesworld.com
Louise Bibby says
We sure will Lennae! Thx so much for your comment. My apologies for the tardy response. I juggle far too many things and sometimes forget to check for comments. I really hope you’re going well. I’m going to check out your website now. I’m looking to create a FB group of Spoonies who are passionate about self-help and doing all we can to assist our healing. I’ll send you more info when I set it up!
Keep Smiling
Louise 🙂