Living with a condition that leaves you in constant pain and often terrible fatigue it can be difficult to consider what your future will look like but it's something that I have to remind myself of.
I still have dreams and enough determination to fight for them. I'm finally unashamed to say that I have been suffering with depression this year and there are days that thinking about the future is just too overwhelming (I do not mean I am suicidal but anything beyond that day, that hour, that moment is just too much) but it is on those days that it is so important to dig as deep as we can and too remind ourselves that we do have a future and we do have dreams.
Thanks to Pinterest (and don't get me wrong I do really enjoy Pinterest, especially as a creative person!) I know that bucket lists have become a huge trend in our society but I must admit I struggle with them. I think it's wonderful to have a board of all the things that you would like to achieve in your life but what happens once you have created that board with the best of intensions? Does it spur you on or does it just become a board in the bedroom that gets over looked? Perhaps worst of all does it become a constant reminder of the things that you AREN'T doing?
Thanks to Pinterest (and don't get me wrong I do really enjoy Pinterest, especially as a creative person!) I know that bucket lists have become a huge trend in our society but I must admit I struggle with them. I think it's wonderful to have a board of all the things that you would like to achieve in your life but what happens once you have created that board with the best of intensions? Does it spur you on or does it just become a board in the bedroom that gets over looked? Perhaps worst of all does it become a constant reminder of the things that you AREN'T doing?
I am an innately positive person, glass half full, silver lining, after the rain comes the rainbow but
I know for me personally at the moment I couldn't bare to have a bucket list staring at me when I lay on the bed in agony too exhausted to move, saving all my energy and strength to be the mummy I want to be when my daughter gets home from school.
I know for me personally at the moment I couldn't bare to have a bucket list staring at me when I lay on the bed in agony too exhausted to move, saving all my energy and strength to be the mummy I want to be when my daughter gets home from school.
There are days where I have so much that I want to do but it's only the hour before my daughter gets home from school that I can really 'get going' because I know if I do all the things that I want to do I simply won't have the energy or ability to do all the things that will give my daughter the childhood I would like her to look back on when she's an adult. What I absolutely do not want her to look back on is a childhood where I was never able or well enough to do anything with her. As parents we all make sacrifices for our children but when you live with a chronic illness those sacrifices can be even greater.
I've had to change the expectations of the mother I always wanted to be (going on rambling walks in the countryside, sneaking off for the weekend to go camping, building dens in the wood, dancing and jumping on the bed) to the mother that I can be today but on that long, sometimes very emotional journey I came to the realization that actually the one and only thing that really matters is love.
Do I love my daughter any less because of my condition? Do I like the time we spend together any less? Has my drive and determination to be the best role model I can be for her changed? Of course the answer to all these questions is no. None of that has changed. In fact, it is all 10 fold bigger because of the extended periods of time I have had to spend in hospital away from my daughter or stuck in the house recovering from surgery whilst life goes on around me.
It's amazing how many things you can do from a hospital bed no matter how awful you feel! We've decorated ostomy bags, done crafts, made story books, done puzzles, played barbies, played doctors and nurses and when I've been at home recovering from surgery we borrowed a spare single bed from my parents so I moved downstairs able to be involved in day to day family life without being shut away upstairs.
We also chose a beautiful selection of funky wooden buttons that I sewed onto her poloshirts so if she was at school and felt sad or missed me she could feel her button and know I was with her, thinking of her and loved her very much.
If I didn't have this condition I never would have been away from her for perhaps more then a weekend when she went for a sleepover with her grandparents, I wouldn't know what it is like to be away from her, to miss her and feel so inadequate, to want to run home to be with her. My condition has made me love her with more determination and passion, it has reminded me to make sure I show her that love and tell her how I feel, it has made me appreciate every moment I have with her and never take that time for granted.
Not one to usually swear but one day instead of a bucket list I decided to have a f&^k it list!
If I didn't have this condition I never would have been away from her for perhaps more then a weekend when she went for a sleepover with her grandparents, I wouldn't know what it is like to be away from her, to miss her and feel so inadequate, to want to run home to be with her. My condition has made me love her with more determination and passion, it has reminded me to make sure I show her that love and tell her how I feel, it has made me appreciate every moment I have with her and never take that time for granted.
Not one to usually swear but one day instead of a bucket list I decided to have a f&^k it list!
My f%^k it list consists of all the things my body tells me I can't do anymore but I am going to do anyway. Some walls are built to keep you safe and some are built for you to break down. Of late though I have forgotten that, I have read all the signs on the wall that say "you can't" "you won't" and believed them. I have stood in front of that wall for far too long and doubted I have the ability to break it down. I have considered that because I cannot break it down in one almighty strike I cannot break it down at all. But that wall does not have to be broken down in one almighty attack it can be taken down piece by piece, in time and slowly.
There is a fantastic documentary about a lady called Lara Bloom (who I highly admire and gives me that kick up the butt to keep going in my mission to raise awareness of invisible disease when I need it!) Lara also suffers with Elhers Danlos Syndrome and decided she was going to complete the London Marathon to help raise awareness for the disease and fundraise.
There is a fantastic documentary about a lady called Lara Bloom (who I highly admire and gives me that kick up the butt to keep going in my mission to raise awareness of invisible disease when I need it!) Lara also suffers with Elhers Danlos Syndrome and decided she was going to complete the London Marathon to help raise awareness for the disease and fundraise.
The documentary called 'Issues with my tissues' follows her on her road to success which I would encourage you to watch. Lara did not suddenly become a full time runner or distance walker overnight but she had that wall in front of her telling her someone with our condition could not complete the London Marathon and she broke that wall down one brick at a time.
I think we can all learn a great lesson from Lara, despite our broken bodies it is our right to still have dreams. This disease is debilitating, it is life changing, it takes away so many of our expectations of the life we thought we would have and the life we had planned out for ourselves.
I think we can all learn a great lesson from Lara, despite our broken bodies it is our right to still have dreams. This disease is debilitating, it is life changing, it takes away so many of our expectations of the life we thought we would have and the life we had planned out for ourselves.
My Mum wrapped it up beautifully for me in one sentence the other day "You were never meant to be disabled, you were meant to be living your life as a funky hippie somewhere with a gaggle of children" and she is right. My infertility is by far the hardest thing I have had to learn to live with. But the other thing my family and friends constantly remind me is that I am still me.
My f&^k it list is about carrying on and believing in myself despite the limitations of this disease and what that means for my life. Elhers Danlos Syndrome is sort of like the Autistic Spectrum in that there is a huge range of symptoms and how people are affected by it. Some are high functioning and manage to still have a full time job and some live a lot of their lives in hospital. Like a lot of other invisible diseases.You never really know what kind of day you're going to have and although many with EDS (or Hypermobility Syndrome) become pros at relocating their joints there's always that little thought locked away in your mind that you may have to go to A&E because you can't relocate a joint or do more then normal damage to yourself.
My f&^k it list is about carrying on and believing in myself despite the limitations of this disease and what that means for my life. Elhers Danlos Syndrome is sort of like the Autistic Spectrum in that there is a huge range of symptoms and how people are affected by it. Some are high functioning and manage to still have a full time job and some live a lot of their lives in hospital. Like a lot of other invisible diseases.You never really know what kind of day you're going to have and although many with EDS (or Hypermobility Syndrome) become pros at relocating their joints there's always that little thought locked away in your mind that you may have to go to A&E because you can't relocate a joint or do more then normal damage to yourself.
I have to use a wheelchair so my EDS is visible in that way but for a lot of people it is a totally invisible disease and there are hundreds of diseases out there that have huge debilitating affects on peoples lives but because they look healthy people assume they are.
My F%^k it list is about knowing I may not ever be able to do something but trying anyway. For me one of my biggest targets on my F%^k it list is to complete my degree with the Open University. Before I got unwell it had always been my intention to get a degree in Childhood and Youth studies which I would use as a gateway into training to be a higher level teaching assistant and the dream was to work in my daughter's school as a teaching assistant or a one to one teaching assistant (as all my experience is working with special needs children) then progressing to be a higher level TA or family support worker.
I worked for 4 years when my daughter was a young baby/toddler to get my degree but 2 courses away (The last course meaning I would graduate with honors) from it I accepted that I wouldn't get to graduation and be so proud of myself because in reality I simply couldn't do the course anymore. I was too unwell.
That fire has never gone out though so a few months ago I applied for a prospectus in counselling and psychology and it arrived just before Easter. 'That' voice of depression in my mind told me I would never be able to handle the work load or attend the tutorials (which are only once a month because the idea is you do everything at home and the tutorials are not compulsory) and I believed it so put the prospectus away but that's the whole idea of my f-k it list. So the other day I pulled it out the cupboard and have decided that I am going to apply for next year and just give it a go.
Another thing on my f-k it list is to launch my line of greeting cards that I have been developing over the last 18 months but again not had the confidence to do. Last month though I decided that so what if no one buys them and it never goes anywhere at least I know I tried so I've been beginning to take the wobbly baby steps to do so.
Depression is like a black cloud that falls over you and makes you believe every bad thing you have ever thought about yourself. I personally do not know anybody with EDS that has not in one way or another battled with some level of depression. It's difficult not knowing from one day to the next how your body will be.
You don't just get over depression in one day, it isn't a question of one day you have it and one day you don't. I know it will take a long time to recover from but I am determined to do it.
My F%^k it list is about knowing I may not ever be able to do something but trying anyway. For me one of my biggest targets on my F%^k it list is to complete my degree with the Open University. Before I got unwell it had always been my intention to get a degree in Childhood and Youth studies which I would use as a gateway into training to be a higher level teaching assistant and the dream was to work in my daughter's school as a teaching assistant or a one to one teaching assistant (as all my experience is working with special needs children) then progressing to be a higher level TA or family support worker.
I worked for 4 years when my daughter was a young baby/toddler to get my degree but 2 courses away (The last course meaning I would graduate with honors) from it I accepted that I wouldn't get to graduation and be so proud of myself because in reality I simply couldn't do the course anymore. I was too unwell.
That fire has never gone out though so a few months ago I applied for a prospectus in counselling and psychology and it arrived just before Easter. 'That' voice of depression in my mind told me I would never be able to handle the work load or attend the tutorials (which are only once a month because the idea is you do everything at home and the tutorials are not compulsory) and I believed it so put the prospectus away but that's the whole idea of my f-k it list. So the other day I pulled it out the cupboard and have decided that I am going to apply for next year and just give it a go.
Another thing on my f-k it list is to launch my line of greeting cards that I have been developing over the last 18 months but again not had the confidence to do. Last month though I decided that so what if no one buys them and it never goes anywhere at least I know I tried so I've been beginning to take the wobbly baby steps to do so.
Depression is like a black cloud that falls over you and makes you believe every bad thing you have ever thought about yourself. I personally do not know anybody with EDS that has not in one way or another battled with some level of depression. It's difficult not knowing from one day to the next how your body will be.
You don't just get over depression in one day, it isn't a question of one day you have it and one day you don't. I know it will take a long time to recover from but I am determined to do it.
I can't deny, it is difficult to live with a chronic disease and not concentrate on everything you can't do anymore but we must hold on to our dreams, we have to hold on to our faith that things will get better and be brave enough to tell someone when we aren't coping. It is so hard to post posts like this but I do it for all the other people out there who live with an invisible disease because it has to become OK for us to talk about how hard things really are without shame.
Whether the invisible disease is mental, physical or both we need to break these taboos around invisible disease so that we can talk about them. It isn't easy to find the words some days but just having someone to sit with you and make you laugh despite how bad the pain is can make you feel easier.
Whether the invisible disease is mental, physical or both we need to break these taboos around invisible disease so that we can talk about them. It isn't easy to find the words some days but just having someone to sit with you and make you laugh despite how bad the pain is can make you feel easier.
Getting diagnosed with a chronic disease isn't the end of the journey it is just the very beginning and we need to support these members of our society. There are so many physical symptoms we have to live with with a disease like EDS that the psychological ones often get over looked because people don't want to talk about how they aren't coping because they don't want people to look at them any more differently then they already do.
The only thing we really want is to be treated like we were before we got sick, you want to be involved in things with all your friends still, you want to be able to go out with your partner still, you want to be able to go crazy and have fun with your children but it just hurts so much. And we aren't talking I stubbed my toe pain here people, this is all over your body screaming on the inside pain. We may well look well on the outside but on the inside is a broken body and at times quite often a broken heart.
I want to tell everyone that I'm OK, I want people to believe that I'm OK because I want to believe that I'm OK. I don't want this disease ripping through my body taking me down bit by bit. I don't want to remember what life was like before EDS took over because I don't want to accept that this is my reality now. I don't want to accept that this disease has taken so much from me, I don't want to remember back to the days when I could run and jump and not be in pain all the time. I don't want to think about all those plans and dreams that I had for my future that physically I won't be able to do.
But we have to hold on to them, we have to grip them and not let go, we may have to build new ones and change them slightly but we have to hold on to them.
The only thing we really want is to be treated like we were before we got sick, you want to be involved in things with all your friends still, you want to be able to go out with your partner still, you want to be able to go crazy and have fun with your children but it just hurts so much. And we aren't talking I stubbed my toe pain here people, this is all over your body screaming on the inside pain. We may well look well on the outside but on the inside is a broken body and at times quite often a broken heart.
I want to tell everyone that I'm OK, I want people to believe that I'm OK because I want to believe that I'm OK. I don't want this disease ripping through my body taking me down bit by bit. I don't want to remember what life was like before EDS took over because I don't want to accept that this is my reality now. I don't want to accept that this disease has taken so much from me, I don't want to remember back to the days when I could run and jump and not be in pain all the time. I don't want to think about all those plans and dreams that I had for my future that physically I won't be able to do.
But we have to hold on to them, we have to grip them and not let go, we may have to build new ones and change them slightly but we have to hold on to them.
EDS is a horrible disease but it will not win. And having bad days isn't losing, it's not giving in, it's being human. Struggling with depression whilst living with a chronic disease isn't losing. It's being human. I'm saying that twice because I want it to stick!!
I don't know anyone that could live with what we live with and not get down and feel desperately sad sometimes. No one deserves to feel the way we feel physically day in and day out. NO ONE 'deserves' chronic illness it is just something that some of us have to live with and we need help. Again. That is a really hard thing for me to say but I'll say it for all the other people out there who suffer with chronic disease. We need help.
We need for you to still treat us like human beings. We need for you to pick the phone up and ask if we're alright, we need for you to remind us to believe in ourselves. We need that bit of extra support and trust me it is really REALLY hard to admit that.
I am always telling people I'm alright when I'm not but what do you say to someone when they stop and ask in the street if you're alright? Even answering a simple question like "How are you?" is difficult!! Do you really tell them that it took you 2 hours to get ready. You couldn't do it alone and your husband had to help you get dressed? Or do you just tell them that you're OK?
Mindfullness is a great tool to help you learn to live with chronic illness, which I will explore in further details in an upcoming post. In essence you just concentrate on one moment at a time and when I am out the house in my wheelchair and am asked how I am that is how I feel, not only ok, bloody fabulous I'M OUT THE HOUSE!
We need for you to still treat us like human beings. We need for you to pick the phone up and ask if we're alright, we need for you to remind us to believe in ourselves. We need that bit of extra support and trust me it is really REALLY hard to admit that.
I am always telling people I'm alright when I'm not but what do you say to someone when they stop and ask in the street if you're alright? Even answering a simple question like "How are you?" is difficult!! Do you really tell them that it took you 2 hours to get ready. You couldn't do it alone and your husband had to help you get dressed? Or do you just tell them that you're OK?
Mindfullness is a great tool to help you learn to live with chronic illness, which I will explore in further details in an upcoming post. In essence you just concentrate on one moment at a time and when I am out the house in my wheelchair and am asked how I am that is how I feel, not only ok, bloody fabulous I'M OUT THE HOUSE!
It isn't always as simple as that though, there are days when you can't do that and I'll say it again THAT'S OK. It is nothing to be ashamed of YOU'RE human!!
I firmly believe that when people ask you how you are and tell you you are looking well it comes from a place of love and kindness and similarly I understand how difficult that can be to hear on bad day. No matter how desperately hard things get sometimes though my dears please remember you have so much potential.
At the moment around many carparks and pavements the Poppies of the year have started to open in all their stunning glory, out of bricks, concrete and cracks these hard tough spaces spring beautiful flowers that for all intense and purposes should not be able to grow where they are.
You are the Poppy, you're beautiful, you're hardy, you are something to be admired and most importantly you come back and keep growing year after year.
