This post is part of the A to Z Blogging Challenge.
Your life is great. You’re relatively healthy, fit and active. You have a social life that includes leaving the house, seeing friends, having a drink, staying up late some weekends. Your head is full of idea’s of the things you want to do and what you want to succeed in and what you want to see. Of course there is always something, not many have a wonderful idyllic life with nothing to concern them, finances are tight, job woes, relationship niggles, be that with family, friends, work colleagues, but in general, life ticks along.
Until it doesn’t.
Your health fails. You deal with it. You then realise it’s not temporary. It’s permanent. Your life is affected. Your body is letting you down. The usual activities leave you drained and out of action for days, that’s if you can even do them at all. Having a drink depends on how many pills you needed to take that day and how you feel. Actually going out with friends? How many excuses will they accept? You look fine after all. Your days are short, bedtime needs to be earlier than usual.
Your mind is still full and busy, alert and keen, but your body just won’t play ball anymore.
What do you do then?
It’s easy to sink into a low, a depression, but then you’re losing your mind as well as your body and that’s the one thing you’ve got. Physical disability, be it visible or invisible, can affect anyone at any point with little warning. And as you let it sink in, watch the world and your loved ones continue their lives – because you can’t disable them as well – you have to mentally adjust to your new reality. Because if you don’t, there’s a long life in front of you that holds nothing but a black hole unless you adapt.
Embed from Getty ImagesI have Ehlers Danlos Syndrome. It’s genetic so I’ve had it from birth, but it hasn’t been picked up until recent years. I’ve had problems, but it’s difficult to diagnose and the problems haven’t been severe. But as I’m getting older, they’re becoming more demanding of me. I’m feeling more restricted by it. I’m having to adjust because of it.
But before adjustment, you have to accept and that is the hardest part. It’s the hardest part for me. In fact I don’t think I’m there. I don’t think I’m fully there because my mind is so active and there are so many things I want to do, but I have restraints around me, my whole make up is a restraint. So I’m making the adjustments at the same time as trying to accept, because if I can make the adjustments work for me, then maybe I can accept the binds the disorder ties around me.
What are these adjustments that will help me move on with a life as a person with an invisible disability?
- I will accept that I need to retire to bed early and make the most of it as reading time and read all those books I want to read. After all, a writer needs to read.
- I will accept I can not go out boozing in pubs that require me to stand up for hours drinking with my mates, but sitting in a restaurant having a laugh with a bottle of wine is a great alternative if I can make it.
- I will say no I can’t stay out/come out and socialise at the risk of losing friends, if my body tells me to, because I will trust that the people left standing when this is all out in the open properly, will be the people I want around me as friends.
- I can make forward plans for events and/or holidays as long as I plan in the recovery time needed afterwards.
- I will get over the fact that I need to take multiple different pills. It’s a fact of my life that keeps me functioning to some level.
- I will accept that I can’t go running, but will start by walking my dog, after all, who doesn’t love a dog walk.
- I will accept the bad days and tears. After all, there’s a lot to accept.
MarinaSofia says
Very moving description of how things can take us by surprise. Life ticks on… until it doesn’t. I hope some of your friends see this and start understanding it all better.
Rebecca Bradley says
Thank you Marina x
Jade Reyner says
I don’t know anything at all about your condition Rebecca but I am sorry to hear that it is really starting to impact on your life now. You are so right when you say that it is a process of acceptance though because it is. When I realised that my son was going to be disabled (and I clocked it very early on) there was a definited process, almost like a step by step of accepting that things were never going to be normal. As each day, each month, each year goes on then we are constantly adjusting and there are days when that is just too hard, days when you just want to throw in the towel or have a major tantrum, but you can’t. You have to accept that what you have been dealt is how you must live and I love the list that you have made which is how you are going to hope to move forwards. I really wish you all the best with everything and if ever you want to chat then just drop me an email… jadereyner@hotmail.co.uk. Take care.
Rebecca Bradley says
Jade, thank you so much for your kindness and understanding and for reaching out in this post. It’s not easy and I didn’t know how this post was going to be received.
I understand the bad days and wanting to throw in the towel and tantrum, but the other days, the days we have the calm ourselves and take those small steps to acceptance and adjustments mean our lives will keep going and we can and will keep finding joy in them.
Thank you. x
Alex J. Cavanaugh says
It sounds very frustrating, especially if your mind still wants to go do all those things but your body says no. I guess it’s a matter of replacing those activities with something you can do.
Rebecca Bradley says
It can be frustrating Alex, and yes, it is a matter of adjusting what I can do. I’m learning – slowly.
Margot Kinberg says
Rebecca – Thank you for sharing with us a bit of what it’s like. I think people who don’t know about this could easily look and say, ‘What’s the problem? Why can’t you ____?’ without really understanding. It’s all a process of adjusting. Once you do adjust, you can find joy in life instead of just mourning the things that you cannot do. And I’m glad you are finding things to savour. And as far as your friends go? Your real ones will be glad to stay in your life. The others weren’t your real friends anyway.
Rebecca Bradley says
Margot, thank you for understanding the meaning of the post and what is behind it. It’s a slow process adapting to some changes, but I think I will get there. But yes, I will know who my friends are as this progresses.
Maggie Thom says
I love that you are learning to focus on what you can do and honoring yourself. I also love that you are focusing on your abilities and what you can do. When we can impact people in a positive light, then I think we are on the right track. Thank you for sharing your journey but also doing this blog, writing your book, setting up a crime book club… Life is about adjusting to what comes your way and I think you’ve done it very admirably. You’re very inspiring.
Rebecca Bradley says
Thank you for saying that Maggie. Sometimes when you’re sat here feeling a little drained and tired, it doesn’t feel inspiring, it just feels tiring. So thank you.
Maggie Thom says
I can only imagine. Often though when we share our truth and how we’re coping with it, others see a reflection of themselves and what they could be doing but aren’t. I know that many of us just give up on stuff and we don’t have the additional struggles that you have. I find it interesting though that don’t see what we’re doing as much different than anyone else, or all that inspiring. But the key is really how we impact others. And you are definitely a bright light. 🙂
Rebecca Bradley says
Thank you Maggie. As you say, we just keep going as usual and think nothing of it. Your kind words mean a lot.
Elizabeth Hein says
Rebecca, I’m sorry to hear that you are struggling with your condition. It is hard to adjust your expectations of what you can and can not do, but it sounds like you are adjusting. I hope you can continue to find the joy in things like a glass of wine with a friend over lunch. Thank you for sharing your experience.
Rebecca Bradley says
Thank you for reading and taking the time to comment Elizabeth. I know with something like this, it’s very easy for people to look the other way and just not read or comment. I know there are things I can do and I am trying to focus on those. Like you say, it’s hard, but it’s what needs to happen, so it’s happening 🙂
DJ Kirkby says
Great adjustments I’d say – hidden disabilities make like even more complicated than the visible ones.
Rebecca Bradley says
They definitely are Denyse. I know you understand that. You are an inspiration to me.
Kristin Smith says
Rebecca, thank you for sharing something so personal with us. I can’t imagine what that must be like to all of a sudden have your world turned upside down. Everything you could do before becomes more difficult, and the things you can do now have to change. I admire your strength, to know your limits, and know that just because you now have a disability doesn’t mean you can’t still live a full and happy life. You can still have a great life, but it will be different. And you’re right– in the end, the friends that stick around are the friends worth having! Best of luck to you!
Rebecca Bradley says
Thank you Kristen. I think it’s because it’s been a slow creeper for me, that at the point I realised things had moved to that point, I was a bit shocked. But yes, I can still have a great life and the friends that know that and stick with me, will be the ones I want with me.:)
noelleg44 says
I imagine this was not an easy post, and I hope that you find things in your life to lift you up. Your post was a great reminder to all of us who do not deal with a disability to look out for those who do.
Rebecca Bradley says
Thank you. And you’re right. It’s not easy to acknowledge to myself never mind publicly, but I am finding I need to now. I can’t hide it. Thank you for your last sentence. Many people don’t.
D.A.Cairns says
Ditto to the above comments.
Rebecca Bradley says
Thank you.
Prashant C. Trikannad says
Thank you for sharing this with us. I hope things work out well for you. Friends are those who’ll be there for you in your bad times and not just in your good times. Unfortunately, the scales most often dip to the latter.
Rebecca Bradley says
Thank you Prashant. I’m finding that about friendship, but I am also finding real friends where I maybe didn’t expect them. Life is full of surprises.
Gwen says
Great post Rebecca. You’re so strong and amazing, and determined to since you haven’t let things get in your way too much.
Rebecca Bradley says
Thanks Gwen. Don’t get me wrong. I’m not always so forward moving. There are many a moment I stand still and wail, why me. But then the important thing is, I pick myself back up again. 🙂
diannegray says
What an amazing, strong and honest post, Rebecca. I like the way you put reading more as No. 1 on your adjustment list. It’s so important to stay positive when fate decides to deal us cards like this. Two years ago I was diagnosed with Multiple Sclerosis and it coincided (within a week) of hubby’s diagnosis of pancreatic cancer (2012 wasn’t a good year). Staying positive at times like this is hard and when you’re down those people who are good friends will stand by you. I try and live as if every day may be my last (but hopefully I’ll live a long life!) because these things happen for a reason – what reason I don’t know, but hopefully one day I’ll find out.
Stay positive and read lots 😀 Sending you big hugs xxxx
Rebecca Bradley says
Thank you Dianne, for reading and commenting and for sharing your own story. I hope that your husbands treatment has been positive. I remember the replica photograph you did with him last year 🙂 – Which was wonderful!
Your own blog is even more inspirational knowing you are building and writing as you live with MS. But we do have to carry as best we can and adapt to what is thrown at us and that is something I am learning to do. I will find who are my real friends as this progresses now and have already started to find out.
Thank you for sharing. It means a lot. And yes, I’m loving the reading! Massive hugs back x
diannegray says
Hubby is doing okay. He was in hospital last week, but is out now and feeling much better. His prognosis is good (which is rare for pancreatic cancer – he’s very lucky indeed). He just has to learn to slow down a bit. As for me – I try to keep as active as I can because the more I rest the harder it is to get up again. So I move around, a lot! 😉
Jacqui Murray says
I’m with you, Rebecca. Denial-anger-acceptance. Then embrace–it’s part of you. Twenty years into this thing, that’s where I am.
chrisb-jwordsandimages says
I like your list – it’s so true. Acceptance is the hardest part for most people. You seem to manage very well, judging by your achievements and your spirit. Good for you.
Claire McComisky says
A moving post, Rebecca. I’m sorry that you’ve had negative experiences with those who you should be able to lean on for support, but I’ve always had the impression that you are a strong, determined lady, so I hope these attributes along with your adjustments make life easier and more enjoyable.There’s a lesson for us all in your post, so thanks for sharing.
Karen Nolan Bell says
I can truly relate. It’s not easy when you have so many ideas flooding your mind and you are desperate to complete them… but… your body gives out and you feel like a toothbrush with a dying battery. When I realized my old life was over and I would never have the ability to work on my desired level again, it was like a death in the family. The old Karen died. I had to grieve the loss of the old me. But, a new Karen was born that day. My life wasn’t over, just different. I suddenly had to determine what aspects of life are most important to me and concentrate on those first. If I die tomorrow, what about today should matter? Work, housecleaning, family, or friends? I now try to put my energy into what really matters. It’s still frustrating–especially on those days when the pain is so great I cry and can’t concentrate. I have to accept that day as a rest day and try to recharge my batteries for the next day.
Don’t worry about how people will accept this post. The ones who can relate are thankful you validated their struggles. Those who think our disabilities are equal to their occasional headache or sore muscle, will never get it anyway. Speak to those to understand.
Rebecca Bradley says
Thank you Karen. I like your analogy with the toothbrush and dying battery. It does feel somewhat like that. There is also a level of the old and the new. We just have to love the new 🙂