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Reflections After Two Years in Bed With ME/CFS
As the new month starts, I am filled with joy and anticipation. It’s been two years since I fell ill, that’s two whole years in bed with ME/CFS, but I am celebrating. My sister says remembering the very day I got sick is like a memorial, something sad and depressing, but it’s not like that for me!
I have a very different perspective. I praise God that I have never felt hopeless or depressed by my current circumstances. I have never suffered resentment and anger at having lost the very full life I had built here in London.
I love new beginnings, and for me, every new month is a new beginning. So is each new week, really. I enjoy celebrating the ordinary! In this post I want to share some very personal reflections as I look back at the road I’ve travelled and celebrate this new beginning.
Yesterday marked 2 years since I have been able to do any form of exercise that wasn’t just a short walk. My last workout was actually a bike ride. It was Easter break and I was visiting my family in Italy.
Remembering The Day I Fell Ill
I don’t think I will ever forget it. On the 1 April 2015 my Dad and I went on an early morning bike ride, I had been out on a similar adventure with my Mum the day before.
I remember sunny, blue skies, a cool fresh breeze, the smelly fertilised rice fields we rode past and fantastic views of the snow-capped Alps in the distance. We would ride our bikes to the next village, stop to eat a banana and then ride back home, about 8km there and back. I was so pleased, you see, I was planning on running my first 5K that summer and this was the beginning of my training!
Things didn’t quite turn out as I thought they would, though. That day I lost my voice due to a horrible throat and ear infection that lasted well over a month. I could never have imagined how the effects of that infection would change my life.
Faith Through Illness
If you have been following my journey on social media, you will know that I am Christian. I believe that God is God and I am not. He is able to make all things work out for my good. Even things that seem terrible to me now, things that I cannot understand. Over the years this has become more real to me rather than just head knowledge. I have lived it.
And we know that all things work together for good to those who love God, to those who are the called according to His purpose.- Romans 8:28
I couldn’t understand it in its entirety until I was forced to face my worst fears, to feel the fear, trust God and do it anyway. He came through again and again. His ways are always best for me! I suffer so much when I fight what this life throws my way instead of trusting His providence and presence through the trials. He is so faithful!
“For my thoughts are not your thoughts, nor are your ways my ways,” says the Lord.- Isaiah 55:8
It was so hard initially to accept that bad things are going to happen in life. People will disappoint you, you or somebody you care about will get sick, you lose a loved one… sometimes it’s not that serious and other times it will be frightening, but God always has a way even when we cannot see it.
Freedom came from having complete faith in His way being best. Realising that He loves me even more than I love myself and He loves my loved ones even more than I love them! Wow… It makes it so much easier to deal with difficulties when you know that everything is safer in His hands, I don’t need to carry that burden.
Patience Through The Storms Of Life
I really believe life is made up of seasons. They come and they go and they each have their ups and downs. One only needs patience to get through the winter, because we know spring is just around the corner!
To everything there is a season, a time for every purpose under heaven.- Ecclesiastes 3:1
It is extremely liberating to live without the need to control every aspect of your life. At least that has been my experience. Just when I think I have mastered the art of patience, another storm comes along and God shows me that I have so much more to learn, so much more to grow.
Trust that God’s timing is perfect, just like the seasons, they all serve a very specific purpose including preparing for the season to come. It’s only a season, and just like every other storm, it will soon be done.
Surrendering Control
Before I fell ill, I was living in Italy and had a couple of highly stressful years, I wasn’t taking very good care of myself either. My diet was appalling! I was frustrated that life wasn’t as I had planned it. I was always dreaming of some other life, one that wasn’t really mine. I was never satisfied, never fully living in the moment I was in, always striving for something else.
It wasn’t until I moved to London with nothing but my carry-on bag and dreams of finding any job at all, that I learned about God’s will and timing. I didn’t have a choice anymore. I had landed in a new country with no place to live and no job offer on the table yet.
I needed His guidance, patience, peace, providence and wisdom to lead me on the new path I was on. Every single step of the way. I had to trust in His plans for me.
For I know the thoughts that I think toward you, says the Lord , thoughts of peace and not of evil, to give you a future and a hope.- Jeremiah 29:11
A friend made the move over with me, so I wasn’t completely alone, and after 2 nights we found accommodation for 3 months. Amazingly, it took me exactly those three months to find work! I landed the job of my dreams only by God’s grace, something I’d never thought of doing before. I learned on the job and I loved it!
There were many huge mountains for me to face during that time, and I had to surrender to God’s will and providence. I had nothing to offer anybody, so it had to be all His doing.
The same applies with my current condition. I had to let go and trust God. ME/CFS is not easy to deal with. It robs you of your life and independence. I had never experienced illness like this before. If I didn’t have God’s peace and presence, then I don’t know if I’d be able to cope as well as I have.
The only way I can account for it, is that it is God’s presence, His peace, His strength and His joy that I am experiencing. Always hopeful and in anticipation of what lies ahead!
You will show me the path of life; in Your presence is fullness of joy; at Your right hand are pleasures forevermore.- Psalms 16:11
Realising that I have spent 2 whole years in bed is strange, I feel like it should upset me or make me feel some deep sense of loss, but I don’t have those feelings. These past 2 years I have learned so much and they have been filled with many happy memories!
Gratitude For The Simple Things In Life
Chronic illness has taught me many lessons, but after patience and surrender, I’d say gratitude is the next biggest lesson I am learning. I’m amazed at God’s patience with me and not only His, my family, specifically my sister now cares for me and has to deal with so much more than she ever planned for.
I have learned to appreciate the small things in daily life: clean sheets, cool breezes, being able to shower more than once a week, being strong enough to sit upright for a while, clarity of mind – being able to form sentences, putting my thoughts into words, silence…
There are so many things that I appreciate now that I never gave a second thought to before getting ME/CFS.
Acceptance Of What Is
I was blessed to enter into this with an attitude of acceptance. I tend to go with the flow in life and accept what comes, as I mentioned before – it’s just a season. Some seasons are longer than others, but I cannot fight them. I cannot change them. I can only control how I respond to them.
From the very start I chose to accept that this is my new normal and I will make the best of it. This has saved me much pain and suffering, I believe. I understand that not everybody sees the world as black and white as I do for myself, and I believe it is important to grieve if you need to and to experience the feelings you have.
Before experiencing this illness, I didn’t understand the need to grieve and experience pain – I do now. I have the empathy and compassion I didn’t have before, but I also believe that it is important to never give up, to look forward and be positive, focusing on the things you can do, the changes you can make and the steps you can take to head in the direction you’re aiming for.
Anticipation For What Lies Ahead
I am so excited for what the future holds!I’m sure there are many changes in the works for my family and I cannot wait to see how it all plays out. As always, life is not linear, there will be ups and downs, but forward is forward and I am so excited to see where we are headed.
Reflections On Life With Chronic Illness
Being diagnosed with a chronic illness can be hard to deal with sometimes, but it doesn’t need to be experienced as a life sentence.
You have not lost the life you have lived, you have not lost yourself, you have gained experiences and now you will have new ones. You still have a full life ahead of you, with many great new memories to be made, only now you’ll do it differently.
For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.- Romans 8:18
So this week I’m celebrating 2 years of victories!
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Wow, your perspective is so, so beautiful and inspiring! It’s so wonderful that you accepted your conditions and embraced a new normal. That is one of the hardest things for me to do. I try so hard to live my life like I’m not sick, because I fear others don’t accept me for my illnesses. When really the only one judging me is me. I need to give myself grace, because God gives me so much abundant grace!!
Absolutely! We tend to be our own worst critic.
Thank you for your lovely words of encouragement.
I read your story, I admire your strength and grace. We both have our love for Jesus in common. I’m still struggling dealing with so many different illnesses that I have. I’m trying to learn how to cope. Reading your story of strength just gave me a new perspective. I hold a lot of anger and I know I have to give it to god. My husband left me 3 years ago because of all my illnesses. The sad part is not only did he leave me he left our kids. So I grieve the marriage. Now divorced. I grieve the person I use to be before all the illnesses. Your story taught me I have to give to god. I can’t push myself, I can’t feel guilty. But I do feel guiltily because my kids have to do everything for me. I feel like a burden. I don’t know how to let this feeling go. God is so faithful, I need to learn to trust. I literally cried when I read your story and said wow she is so strong. I want to be strong like her and victorious. Please help me Jesus. I will be praying always for your miracle. May god bless you always ??????
we follow each other on instagram I’m bee_faithful
Love ❤️ Beatrice
Beatrice, thank you for your encouragement.
Since we have met and got to know each other better, you have become and inspiration to me. Your strength and faith shines through. Keep holding on tight to Jesus – He won’t let you go. Sending big hugs my friend.
This is a lovely post. I’m still struggling to get to the place of acceptance. I was struck down for almost a year after I got diagnosed with dystonia but I get around more now. I do have to count spoons though.
Hi Marya,
Thank you. Acceptance is hard for most people, you’re not alone in that. It is always a long patient game of trial and error to figure out what works and what doesn’t, isn’t it? I am glad to hear you are doing better now and have found a way to manage your condition. Hugs
My heart goes out to you because I, too, have a chronic illness (lupus) and know just how difficult it is to find a new normal when we have to deal with something that doesn’t just get better or go away. I have so much admiration for your courage, Charlene. Much love to you!
Thank you, Kristi. I just visited your blog and cannot wait to go back and read some more! I hope your 2018 will be marvelous. Hugs
There is so much hope in this post. I love your perspective through your illness. You are brave and courageous. Wish you a great next year ahead filled with many more victories and happiness.
Thank you so much for your encouraging words, Ophira. Wishing you a wonderful 2018!
Awesome testimony!
What a blessing you are! And courageous in God’s strength.Sometimes I think we (those who are suffering trials of any kind) waste so much time fretting about the outcome, and worrying over the situation. Thanks for your wonderful testimony of perseverance and peace!
Thank you, April.
God is so faithful in helping us through every trial. The hard part is letting go of control and what we think the outcome should look like and trusting Him.
I hope you have a lovely weekend x