When my Nan was alive, she came to live with my parents and I so we could help her with meals and generally look out for her when she was too frail and ill with her asthma. Even as her health declined, she still paid rent on her old house - she was adamant she'd move back in when she was well enough. We'd play along, but we knew she'd never be well enough again.
Nan was the type of person who loved looking after everyone. Extremely house-proud, every ornament was dusted and facing the right direction, every surface was polished. She'd clean up your crumbs and offer you more while you were still halfway through your food. She'd iron any clean clothes she could get her hands on, socks and knickers included.
Nan and I, around 1997 I think. |
I find myself thinking about her now a lot, how I'd underestimated exactly what she went through at the time, as her body began to betray her. I lie in bed day in, day out, having my meals brought to me by my parents, in the same room where she laid and had meals brought to her.
When she died I was devastated, I loved her fiercely. But at the same time, a small part of me was relieved. I was no longer constantly worrying about her health and well being. I was glad she was no longer suffering, weak and ill and sad, though she smiled for us.
What happened to her in her eighties has happened to me, and I'm still in my twenties. I often wonder if, in the coming months or years I were to die, would my family feel that small sense of relief I felt for Nan all those years ago? ME/CFS is not a terminal illness, but it can certainly take your life from you. I pushed and shoved and forced myself to work for so long, because I simply loved it. I enjoyed my job and it was worth it, even if I had to turn down more jobs than I accepted. Even when I could only manage working two days a month, I cherished those days.
In the last year, I became unreliable, cancelling jobs at the last minute because I couldn't make it through my routine of bathing and dressing before I had to lie down, weak and exhausted. The jobs I did make it to, I no longer enjoyed, having to focus on staying standing, concentrating on what I was doing while my limbs ached, and every part of my body was begging me to lie down. It was time to admit defeat.
So now I'm no longer a make-up artist, what am I going to do with my life? I have no frikkin clue. Here is a Venn Diagram explaining my dilemma.
That question mark has been plaguing me for a long time. I need a sense of purpose, I need to achieve something tangible. My mental health, which is shaky at best, has definitely taken a hit now that my days are just spent killing time and trying to quell my epic boredom.
What does the future hold for me? For this blog? I'll need to change the name if I'm to continue. The Life of a Vegan Bed-Dweller?
I guess only time will tell. I have far too much of it these days.
Til Next Time,
Emma
xXx
I really enjoyed this post, not in a sadistic way I promise, but in a you have a natural knack for writing. Writing always has something a bit more when it's about personal experience and it could be something you could pursue. Only if you felt comfortable of course, as in documenting your experience living with your illness. It actually reminded me of a biographical book I read called 'The Elegant Art of Falling Apart' by Jessicca Jones. It talks about her cancer diagnosis and is a real, things get worse before they get better, kind of tale. If you like those kinda of books I definitely recommend it. But in reguards to the blog, I wouldn't put too much pressure on yourself. Maybe it's a chance to express yourself or maybe it's a chance to explore things you may not of done before. The internet has boundless information and although I'm sure it's frustrating to be one of few resources, it could spark new material to blog about. I wish you all the best and thank you for blogging.
ReplyDeleteI know my reply is a bit late, but thank you for your kind words. :)
DeleteI don't know what the future holds for you but I 'm wishing fiercely that things will get better for you. Many many wishes for a recovery. While I haven't been through the same health problem you have, I know what it's like to have health issues that require you to give up your life, have others take care of you, not being independent, a generally really sucky situation. So I really hope you 'll get better sweet one. My thoughts are with you. <3 <3 <3
ReplyDeleteThank you so much! x
DeleteHi, I've really enjoyed finding your blog, I too have M.E (25 years, since age 13) and am a Vegan (I'm also called Emma!) and I look forward to reading any future posts. You've my complete understanding of how this illness effects so much of our lives not only physically and mentally, sending lots of happy and healthy thoughts. Emma. xx
ReplyDeleteThanks for your comment. Wow, we have a lot in common! Sending you back some happy, healthy thoughts! x
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ReplyDeleteHello Emma,
ReplyDeleteI'm sorry to hear about your health issues. I was diagnosed with CFS and later fybromyalgia in my 20s. I am now 53. So I can relate a bit to how you're feeling emotionally. I am married, with a son and two dogs and am happy to say I have been blessed in my life in spite of my health. Here are some ideas that have helped me through the years. I'm guessing you probably have tried many of them, but just in case here they are:
1. Find a support group. People will be talking in the group about ideas they've tried that may help you. Also it's a good place to find sources for the best doctors and the ones to stay away from.
2. Find a therapist who specializes in chronic illnesses.
3. Allow yourself to grieve the loss of your life as you've known it (but not for too long).
4. Remember that though life has changed dramatically, it is still YOUR life to live as best you can. Your blog is proof of that! Do you know how many years I've tried to find the right make up to cover my very dark circles, and now after stumbling on to your blog, they look so much better because of the advice and expertise you shared with me. You are a wonderful teacher and writer by the way.
5. Count you blessings and notice the benifits this illness has given you i.e. more empathy and compassion for others. Time for your charity which is just wonderful and I'm sure there's more.
6. Listen to music, watch funny movies, read positive books.
7. This really helped me, put items around and near your bed that make you happy when you look at them. On the days that I can't get out of bed it brings me pleasure to look at the pictures of my loved ones. I also have a fish on my night stand that is very calming and fun to watch.
8. Try accept the bad days that come with your illness. There's no way around them and the quickest way through them is to not beat yourself up because of them.
9. Your creative, so maybe find a way to channel that without it being too taxing. For me it has been learning to draw with colored pencils. Time happily flies by when I'm involved in one of my drawings.
10. Let people in, talk on the phone, email, text or face book. Don't let yourself get too isolated and don't be afraid to ask for help. People who love you are feeling helpless and would love a way to make your life easier or put a smile on your face. I know this for a fact because I have been in the care taker role too. After my husband's car accident he lost full use of his arms and had his leg amputated. I felt and often times feel so helpless with his struggles. When he lets me help him it is a relief and truly my pleasure.
So this ran a little long, but I hope it helps you. Take care and all my best wishes.
Julie
Thanks for reaching out to me, Julie! Your advice is much appreciated, especially coming from someone who understands what it's like to be chronically ill. I will try to take it to heart. Wishing you all the best!
DeleteYou're very welcome. Take caređź’•
ReplyDelete