Tuesday, 31 May 2016

Ill in bed again - a very different EOMV post

I don’t normally write much about my many different conditions, illnesses and disabilities – I have from time to time written a bit, mainly to explain why I can’t work in my garden like other people do – or at the same pace as most people do. But I have deliberately kept my health problems away from my blog. You see, my gardening blog is my way of escaping my real life. Here no one knows me, no one sees me, no one sees my pain and I can pretend I am almost normal. I can be a completely different person than I actually am. I can be the person I would HAVE LIKED TO BE – if life had been different.

Life has just given me yet another blow and I could have just told you all that I needed a blogging break right now and just vanished for a while like other bloggers has done, but I think perhaps it is time I reveal a bit about myself.

I came out of hospital 10 days ago after yet another admission – I have lost count how many admissions I have had over the years.  At the moment I am mostly in bed because of 3 slipped disks in my lower back and 2 more disks further up with problems. I LOATHE being in hospital and would rather be home alone so I stayed in for just a few days. Hospitals are so noisy and every time you ask for something it takes an hour before you get it – including medication you are supposed to have at certain times. I am better here at home.
The slipped disks came on because my back is like that. I have had slipped disks in my back on 5 different times over the years in the past - and 2 times in my neck. The last year after moving house has been hard, very hard and I have had to do a lot more than I normally do and over time my back has just given up. The straw that broke the camel’s back was that I painted that little fence on the left side of my garden where the Japanese bed is. Yes, of course it was STUPID, but I don’t get anything done in my garden if I don’t do it myself, and normally I work like this: I do an hour or so in the garden, then I spend a few days in bed to recover then an hour or so in the garden and then a few days in bed….well, you get the picture. Normally that works. This time it didn’t, even though I divided the paint job in two and it was a whole week between the two parts. But it wasn’t really the painting as such - it could have been just about anything else. It could have been me washing the kitchen floor. Anything really.

I have a very long list of conditions and disabilities, too many to mention here and most of them you probably haven’t heard of but my main condition is Ehlers-Danlos Syndrome which I was born with. Feel free to just skip the whole next bit if you want to, but if you are interested, the links I am putting here will explain much better than I can what I am dealing with. Wikipedia has a great article with information about EDS, I am sorry it is of course full of medical terms, but you might get the gist of it anyway. Of the list of signs and symptoms I have almost all of them.
As a result of EDS I developed osteoarthritis at a very early age and now, at the age of 51, I am quite severely affected.

The list goes on and here are some of the other things I am diagnosed with…..





As for my spine/back and neck I have previously had 5 slipped disks in my lower back and 2 in my neck. I have had 2 operations to my lower back and one to my neck where they took bone from my hip and removed the whole disk and I still have metal plates in my neck. And now I have 3 new slipped disks which I still don’t know what we are going to do with – surgery or just leave it. Leaving it means of course that I can have new prolapses at any time. Next month, next year or not at all. Who knows.

And then it’s my hips – which most of you might have heard of. Because of EDS and arthritis I have had 3 operations to my left hip in an attempt to make it less painful. The last operation was a hip replacement – which was not successful so it is unstable. I have dislocated twice, once in 2012 and once last year in April – whilst packing up my house to move here to this bungalow to get an easier life without stairs. If I am VERY careful I might not dislocate again, but if I am careless I could dislocate my left hip every single day. It is only because I go around thinking about how to move ALL the time that I don’t dislocate it. And dislocating your hip whilst standing up – like I did both times, feels like someone is ripping off your leg. Literarily.

And if all this wasn’t enough I am what’s called opioid resistant so there is no painkiller that works on me. You can give me the strongest morphine at the highest dose, it won’t make diddly squat to me. I have tried all the different pain medications there is, and there are a lot of synthetic opioids, but nothing works, they don’t take away pain. Some makes me constipated and others give me horrible itchy rash – but they don’t take away any pain. My brain is apparently not wired the right way. So every time something happens or I have an operation there is nothing to give me after I wake up from general anaesthetic. Nothing. Nada.

I have a very long list of conditions and illnesses, I am not going to bore you with all of them – and my family don’t know all of them either so this should not be the way to let them know – some of my family members read my blog. I am normally quite cautious about talking about my health problems - that comes from having been ill all my life. People don’t want to hear that I am in pain, that I am not better, that I am actually worse than last time they met me and that my prospects year on year is just that everything will get worse. That’s not me being pessimistic. That’s me repeating my doctors’ very realistic prognoses.

I have a ‘ME PERSON’ that I show the people I meet and that I use when I write online. That person is optimistic, happy, bubbly, smile a lot and takes a keen interest in other people, is helpful and like to help, is a typical half-full glass person, is creative and colourful. That’s the person I would like to be if life had been normal. I have created that person and the few times I have visitors here at home I can pretend to be that person for a few hours, but I can’t keep it up for very long so people who visit me are instructed beforehand that they can only come and see me for a few hours. Afterwards, when they have left, I fall to pieces and become the real me again. In pain, exhausted – and no more smiling. One of my biggest wishes I have is to feel that I can LIVE, not just exist. I don’t normally talk about my pains and conditions. I often just say I am tired instead of saying I am in pain. Everyone is tired now and then, it’s easier to understand and relate to. But today I felt like sharing a bit of my life with you that none of you know anything about. You can’t do anything about it, and I don’t expect you to – no one can do anything to make me better. But I am just trying to share a bit, not keep it all to myself as I usually do. What could be more SHARING than write a little bit about it on my blog, huh?!!!

OK, enough about my health issue list, I want to tell you why my garden is so important to me. My garden is my world. My WHOLE world. The only time I leave my house is when I go to hospital and doctor appointments and they come and collect me with hospital transport. I get to see a bit of the outside through the windows while we drive, but I usually use my wheelchair when going to hospital so I sit in the middle of the ambulance and can’t see much out of the windows. When I am in my garden I can move around on crutches and sometimes even just by holding on to furniture and walls and things. I feel free, I am outside in my own space. My own beautiful garden.

Two days ago my son came here and he helped me out in the garden so I could see it, I had not been in the garden for almost 10 days and what a transformation in those 10 days! All the planning I have done the last year is now happening, just like I wanted it. When I saw all the roses flowering everywhere I could not hold back the tears, they looked so beautiful.
For me, part of experiencing things is to take a picture or film it – and to be honest, I don’t really feel I have experienced something properly until I have taken a photo or filmed it. I know that might sound weird to some people, but I have had a camera since I was about 10 years old and it is as natural to me to take photos as breathing.

So today I took my camcorder, my tripod and my gardening stool and placed myself in the middle of the garden - and I filmed the garden, despite how painful it was to sit. It is not the usual film I normally make because all the close-ups I just had to skip, I could not do them. But my camcorder has a very good zoom so I managed to make a few close-ups from where I was sitting – but they are not as good as they usually are. But I did it! I filmed my garden. I didn’t go out in the front garden to film, I thought perhaps me, bare-feet in my nighty and on crutches, clutching my camcorder on a tripod would raise a few eyebrows – or perhaps someone would call the old people home down the road and ask if they were missing one of their dementia patients. Anyway, inside my garden no one can see me, so I can be dressed in whatever I like. Who cares - I don’t. But there is a lot of people coming and going at the front of the house so I don’t want to create an issue. So I filmed just the main garden– and tonight I have edited it down on the computer to a manageable size, not too long I hope.

The music is by a Scottish composer called Stuart Mitchell, he made it in 2001 and it is a piece from the Seven Wonder Suite called The Mausoleum at Halicarnassus. Just proves you don’t have to be a composer dead for 300 years to make amazing music!! The piece is a bit longer so I had to cut the end, but I didn’t want to make the movie too long, I thought this post was MORE than long enough already. But please go on YouTube and listen to the rest of the Seven Wonders Suite by Stuart Mitchell, it is so beautiful.





As I am writing this I am still not sure if this post will ever be posted or not – I feel I have written too much, too personal, too much information and too much about things I should continue to keep to myself. If I feel brave enough tomorrow I might post this. I will still be my usual positive, energetic, creative person in my future posts, but now you know that it’s not REALLY me, just what I would like to be.

You have no idea how much you all mean to me, you are my social life and every comment I get here I treasure like gold dust. I find it hard to get around to you all and read and comment back to you as you all seem to write much more often than I manage to do, but I try my best. Every comment I get from you all is like a hug, so please let me give you all a big hug back :-)

I would like to end this post with a very well written story by Christine Miserandino, it explains how it is living with a chronic condition. The woman who wrote this story has lupus, but everything she says applies to most people in situations like mine and millions of other people. Maybe you know someone who could also need to hear about The Spoon Theory.

The Spoon Theory is now so famous it has even got its own page on Wikipedia!

I told you this was going to be a very different blog post, thank you for still reading, it means a lot to me.
Take care
Helene

28 comments:

  1. I think you are amazing. In spite of your conditions you still look at the bright side of life, of every day, and the fact that you shared your pain today, made me realise, that people are different, and we shouldn't dismiss and ignore their uniqueness, even if it normally is full of physical pain. Life is short, but making the most of it amongst the circumstances is the best way we can live.
    I send you a lot of good thoughts!
    I love your blog and your garden, and I admire you for being brave and finding enough energy to write.
    Have a lovely day, Helene!

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  2. Hei Helene!

    Jeg synes du er modig som forteller dette så åpent. Jeg forstår godt at du synes det er skummelt å gjøre det, for det er en viss trygghet i å være anonym i den grad en kan være det når det står med fullt navn ;)
    Trist med ryggen din! Når den streiker er det ikke mye en får gjort. Jeg har heldigvis ikke alle dine plager og syndromer, men jeg har to kroniske diagnoser jeg også, fibromyalgi og kronisk bekkenløsningsyndrom. Jada, det er så deilig atte...
    Den skje teorien hadde jeg ikke hørt om før, men du verden hvor godt den beskriver en hverdag hvor en må velge hva en kan gjøre og bruke energi på. Jeg gaper som regel over alt for mye fordi jeg gar så lyst til å få det gjort, og med det resultat at dagen etter har jeg ikke energi til noe...

    Så godt at du har en sønn som kan hjelpe deg litt, og
    jeg håper at du snart er bedre!

    Stor trøsteklem fra Marit

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  3. Helene: Many hugs and my deepest wishes that managing your conditions will somehow become less burdensome. We so appreciated your welcoming us to see your garden when we visited you in London. Your gardens--both the one we saw and your new one--are incredibly impressive. And the fact that you've created them while dealing with constant pain and risk makes them all the more awe-inspiring. I wish I could wave a magic wand and make all the pain go away. I hope there will be a breakthrough of some sort, or at least that you will feel more comfortable. Hugs and positive thoughts. ~Beth

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  4. Helene, I am so glad you are sharing your story....I think it makes your gardens that much more special....it does for me. Your garden is your sanctuary, but it is mine too, I feel. I come and see your beautiful flowers and it makes me feel at peace....less stressed. So thank you for sharing your garden and story with us. I am sending big hugs and prayers that things will calm a bit for you so you can be without pain....or at least it lessens and can be more manageable.

    Much love,
    Donna

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  5. Helene please accept all the hugs and best wishes I am channeling down there too you.
    Dealing with your chronic pain in the way you do is admiral, it truly is. Opening your heart this way makes us all the more appreciative of the hard work and effort you put into your little plot of heaven.
    I can see why getting outdoors after your short absence brought tears to your eyes - your garden is gorgeous. I hope your spirits are lifted soon. x

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  6. Oh, Helene! How I wish I wasn't a continent away! I'd be happy to spend time in your beautiful garden just helping with the things you want done. What you've accomplished in your garden is remarkable by any standard, including those of the healthiest, arthritis and pain-free people I know. Knowing that you've accomplished what you have through persistence and in pain, makes it all the more incredible.

    Big hug,
    Kris

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  7. I´m very touched by your story about yourself and your ilnesses, I am glad we know something more about it all, but I feel so helpless we can´t do anything to that everlasting pain. You are so amirable for what you accomplished in your gardens, it´s amazing. I´m sure you must be very strong mentally, I know the garden is all for you, as for me too. That keeps you going. I watched your video, your ´new´ garden has grown surprisingly fast, it looks great!!!
    Lots of love,
    Janneke

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  8. Dear Helene, Thanks you so much for sharing your story. You are an inspiration! You should be proud of all you have achieved in spite of pain and disabilities. I am in awe! I love to visit your blog and imagine being in your garden -- it is a precious little bit of England to this ex pat. I am going now to watch your video and read the article. Just know that you are in my thoughts and prayers with a special prayer for relief from pain. Hugs, Pam x

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    Replies
    1. The video is beautiful, Helene. Your roses, the pink rhododendron, the fuchsia ... all amazing. Love the music and have added it to my play list. And the Spoon Theory is brilliant!! Thank you so much. P. x

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  9. Helene, as an addendum to my earlier comment, I wanted to let you know that, after getting a chance to read "The Spoon Theory" this afternoon, I've already shared it with two close friends, both mothers of adult children who live with serious and painful health conditions (one diagnosed and one not). It's the best thing I think I've read on dealing with that kind of challenge. Thanks so much for sharing it, as well as your own story.

    My best wishes,
    Kris

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  10. Helene, thank you, as always, for sharing your beautiful garden. My best wishes go out to you. As others have said, your garden is gorgeous, and I'm glad it brings you happiness! Thank you also for sharing your story with us - you amaze me with your strength. Big hug!

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  11. Helene, Your garden is so beautiful and I have been amazed by how much you have done since you moved. Now with this post I understand even more how much it means to you and why you work so hard in your garden. Take care and enjoy your garden that brings you so much respite from your medical challenges.

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  12. Kära Helene! Din berättelse gör att din trädgård känns som ett mirakel, du har skapat en fantastisk trädgård, hoppas så att du skall kunna njuta av den, utan att ha ont.
    En stor kram / Marika

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  13. Dear Helene, I'm sorry to learn about your condition. It upsets me very much, because I know that at your heart you are energetic and optimistic woman. I am glad that your son came to visit you and helped you in the garden and in the house.Of course it is insulting that doctors can not relieve the pain, and you suffer so much. On the other hand, I understand that you want to share with others your pain and to read our kind words of sympathy.
    I liked very much your video - the garden is beautiful and the music is new to me, good choice.

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  14. Oh Helene, I have been feeling so stressed out and feeling sorry for myself the last week because I just don't have enough energy to get everything done in my garden that I want to. And here you are, with all your health problems creating such a beautiful, amazing garden. You are an inspiration! It's not easy sharing such personal details. I know I try to put on my "happy face" in public and on my blog, even when I may feel quite the opposite. But your honesty helps us to appreciate what we have and to inspire everyone to live life as fully as we can. May you continue to enjoy your lovely garden; hugs to you, Rose.

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  15. Helene, my own health conditions aren't nearly as severe as yours, but I understand both the impulse to be our "real" healthy selves and put on a good front, and what a burden that can be. I think being honest and real is actually an important gift to give--you've given that to us here. Our gift to you is to LET you be honest and real, and to want you to feel free to be your whole, genuine self, even when you are in extra pain and struggling extra hard. Many good wishes to you for strength, peace, and joy.

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  16. Considering all that you have described here, I think you are a marvel to have achieved everything that you have in not just one but two gardens. Just moving all those plants was even a much more mammoth task than I realised.

    You have earned my admiration and respect. Many people with far less problems would never have even tried to do what you have achieved so well and they should read this.

    I hope that your garden continues to be a source of some joy.

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  17. You are so brave Helene and so positive thinking. I can understand how your garden is such a joy to you. Your garden is your very soul.
    Its beauty is a credit to you and we share your delight in it when we read your wonderful blog and admire your horticultural and photographic skill
    Roger

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  18. So very sorry to hear that you've had a setback Helene and hope that you will overcome it quickly. I can quite understand how much your garden means to you. We take on responsibility for them, love them, and they can become like another person in terms of our affection. Take care, concentrate on getting well and enjoy your garden once again.

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  19. Thank you all for your wonderful and heart-warming comments. I normally reply to comments individually, but this time I will make a longer reply to you all instead. The last thing someone in my situation want is for people to express pity – and I think most people like me would agree on that. To me there is a huge difference between pity and empathy and I feel you all have understood that difference - and what I needed. I am so pleased that you all took to heart my story in the way I hoped you would – and responded the way I hoped you would. Thank you all for that, and again, every comment I get here is like a hug, so here is a hug back to you.

    I am slowly getting better from my slipped disks, I have had a few careful strolls in the garden and I try my best to enjoy everything that looks lovely right now – and try not to see how much that needs doing. Fortunately we have had rather cold weather the last two weeks so watering has been fine, I have had help with watering and will get more help and that’s been sufficient. June is the busiest month in my garden, things grow like MAD, I hope to be well enough soon to sit on my gardening stool like I usually do and do some work. There’s about 150 lilies to stake, lots of roses and clematises to train and clamp, there’s pruning, feeding and weeding and I have around 300-400 plants from my previous garden still to plant – I haven’t counted them for a while so I don’t really know how many I have, I just feel there are still pots everywhere. And I haven’t even started on my front garden, nothing is done there yet, I have just placed a few containers there. That’s a project for….whenever I can get help with removing all the gravel and stones. All in good time, I have been here 13 months next week.

    I am not sure how many of you I will manage to get around to and leave comments for, I often read your posts, but don’t always leave a comment. In an ideal world I would have liked to read and comment on all your posts, but I try to visit you all as often as I can.

    Thank you all for your support and for being here for me.
    Helene

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  20. Hi Helene! Your garden is happy, peaceful and elegant. The plants are arranged in a very tasteful manner, even those in simple black containers. It feels like a very good garden designer spent some time here! The roses look healthy and I didn't notice any black spots. Huge fuchsia is one of my favorites here. Reddish branches are so attractive! I hope my fuchsias will be so luxurious one day! You chose very appropriate music!
    I think you did a right thing writing about yourself. It's important for you, but also important for us who read your blog. It's a reminder - to treasure what we have, to appreciate every simple thing, do not take anything for granted.
    I wish I would live closer to you. I could come over and do some weeding and digging in exchange for a cup of good English tea.
    P.S. After reading your post I went to my son's room and gave a hug to my boy who was born with congenital heart disease and several other conditions.
    All The Best to you and please, know that reading your blog is a real pleasure.

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  21. Dear Helene, here are my hugs to you. Thank you for sharing. I know it is difficult to reveal your soul to the world, but your life is an encouragement to me and is a reminder to appreciate every small blessing.

    You are a remarkable woman. I enjoyed the video very much! Most able-bodied people with a couple of helpers could not accomplish in their gardens in a year what you have done. Your garden is a little paradise, peaceful and full of joy, a reflection of who you truly are, inside, when all the physical limitations and pains are stripped away.

    I know a little bit about Ehlers-Danlos Syndrome and can appreciate the daily hurdles you face. Thanks so much for the Spoon Theory link. May tomorrow bring you lots of extra spoons!

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  22. Your garden is as much pleasure for us to follow ongoing progress, as it is for you, to sit and enjoy. Being real adds for us the 'blood sweat and tears' to the delight of your garden.
    I wish and hope that they can find some way to let you be comfortable.

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  23. Helene your beautiful garden is a whole world, and I am happy for the joy it brings you though all the pain. Your courage is as beautiful as your garden. Hugs and many flowers!

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  24. Hi Helene,
    I'm so sorry to hear about your conditions but I'm very glad that you shared. Thank you for sharing. It gives me, a person who used to take life for granted, perspectives on life and make me a much more grounded person. You have the strength and will to do everything and so keep on doing that. We will cheer you up.

    Your garden is absolutely amazing. Geez...I wish I could create a garden like that or I stayed close to you so that I could come down and enjoy it and learn from you.

    Wishing you all the best,
    KL

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  25. I know you don't want people to feel sorry for you but I have to confess that your story brought a tear in my eye. Your garden is a paradise. And I always love the way you are writing.
    Have a beautiful day.

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  26. Helene, I think you are extremely brave and should be proud of your achievements.

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  27. Thank you again to all of you for your lovely, kind words and encouragements, I am slowly getting better from my slipped disks, back to what I usually am and my normal struggles – until next acute episode, as this will happen again and again. But I live and plan for what’s here and now, I don’t go around thinking about what might come next - and I enjoy the garden very much. I have had help from a few gardening friends to do the things I am unable to do - and that has been very good at this important time of year. June is the worst time to be away from the garden! But my garden is also designed to take care of itself if it must, as long as it gets watered, and so was my previous garden. I can be away from it for a week or two or a month or two - as long as it gets watered by someone it won’t be too much work when I am back – that’s how I make my garden. And here in my new garden I have decided to go one step further, I will install a soaker hose in all the flower beds so watering can be done by just turning the tap on – or even with a timer. That will be a big investment and something I will have to learn how to set up and use, but once installed and working, a soaker hose will hopefully be a great help.

    I am sorry I didn’t manage to get around to all of you and visit and comment, I do try to do that every time I post as keeping in touch with you all is a vital part of this blog. I will try taking the round and visiting you all in the near future. Thanks again to all of you, I truly appreciate all your wonderful and encouraging comments.

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