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…..

PoTS - Postural Tachycardia Syndrome

APS – which has given me numerous blood clots

Fibromyalgia

Chronic migraine

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