DEM BONES, DEM BONES, DEM DRY BONES (Song) …

If someone had told me a decade ago that I’d be getting my mobility back after all these years of being in a wheelchair, I would never have believed them. But, here I am, walking with one crutch indoors, but not outside. However, the irony of this situation is that four weeks ago, I was diagnosed with very severe osteoporosis following a DEXA bone scan where my T-score (-4.5) was almost off the radar. My GP said she’s not seen anyone with this level of bone fragility for a very long time. If I fall, bend or twist, I stand a very high rate of fracturing my spine or breaking a hip either of which could result in permanent disability or paralysis. Bad news.

Having said all that, I’m not giving up on life … not at all. I have to learn to do everything differently and safely. Whether it’s getting something out of the fridge, picking up a bit of fluff from the floor, drying my feet after a shower and other tasks I took for granted before. I have to think before every move, and it’s exhausting sometimes, but I’m not complaining. It could be far worse.

I refuse to let this condition beat me. It knocked the stuffing out of me when I first got my diagnosis, and I was very depressed for quite a while, but now, I’m keeping active by moving around my home more and going to the gym at least two to three times a week and working really hard. Exercise is the key. I’m getting stronger, not weaker, and as long as I don’t fall, I’ll continue that way. I daren’t attempt to set foot outdoors without George (my electric chariot!) or my manual wheelchair for fear of falling on the concrete. There’s no way, after all this hard work, that I want to be back in the position where I can’t wash and feed myself again. I’m come too far.

So, I’m following my specialist’s advice, keeping active, taking medication which should help prevent any further bone loss and being extra careful about my diet. No big deal. That coupled with all my work at the gym should keep dem bones of mine ticking over for some time, I think.

 

 

HAVING TO TAKE A BREAK

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Having written my last post, I said that I would shortly write my next post about my two wonderful trips to a seaside town a little distance away. I was very much looking forward to sharing my experiences with you. However, current difficult circumstances have meant I just haven’t had the time or the concentration to write. Nor, I am sorry to say, have I had the time to read all my fellow blogger’s many posts either. I know I have missed so many and for that, I apologize.

This means that I have to take a break for a little while but plan to be back again before long, and then I’ll start rereading your blogs too.

Should I say … please, bear with me … or … watch this space!?

I’ll be back. Hopefully sooner than later …

Love Ellie Xx ❤

WORKING OUT

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(photo credit – http://www.fineartamerica.com)

 

Well … I’ve made a decision [round of applause, please]. I’ve decided, after living much of my adult life in a wheelchair and needing carers, that I’m going to get myself fit. I’m going to get fit in my city’s main gym – working out – [yes, me, little Ellie, working out – you heard right]. My brilliant idea is that maybe – just maybe – I would be able to manage a bit more independently without having to rely on carers so much.  I am very serious about it, and it would be amazing to achieve this.

Having made this great pledge to myself, I set off for the sports centre for the first time today.  I bought my ticket and a membership card and wheeled through the turnstile, along with an unexpected and very excited party of primary school children who were waiting to go into the pool for their swimming lesson.

I wasn’t quite sure what to expect as I entered the door to the gym. I was wasn’t entirely surprised to find there were a few keen, male bodybuilders and one or two rather muscular, female weightlifters, all of which looked like they had popped a few steroids before they’d come out! However, I wasn’t particularly concerned [‘each to their own’, I thought].

I slid quietly passed them, trying not to look too conspicuous in my pair of blue jeans, a tee-shirt and a purple and white sweatshirt (which I couldn’t get changed out of without the help of a carer who I didn’t have with me). Compared to everyone else in their smart sports gear, I did, indeed, look conspicuous. I pulled off the sweater and bravely bared my arms in a vain attempt to fit the image a little more. I failed, miserably, but was nevertheless determined to get started – onwards and upwards!

One of the instructors met me a few minutes later, and having assessed me gave me a print out of the exercises I needed to do. I was keen to begin my workout. I didn’t know the names of half the equipment, but I managed to locate the weights and thought I’d start with them. I picked up the 2 kg dumbbell, and my arm plummeted towards the gym floor … I’d better start with a lighter one, I decided, and then chose the ½ kg weight. That was better although I felt a bit pathetic attempting to raise my arm above my head with what looked like a pencil with two blunt ends. I managed two lots of ten lifts with each arm altogether which was a fair start.

I gradually worked my way through my programme and finished after an hour, feeling suitably proud of myself. I felt really good and had thoroughly enjoyed it. I refilled my water bottle, went out into the caféteria area and treated myself to a vitamin-packed mango, spinach, kale and celery smoothie which was delicious despite the fact that it looked the same colour and consistency of the green sludge that floats across the top of my garden pond from time-to-time. Trust me … it was lovely.

I eagerly finished that up and left the sports centre absolutely buzzing with endorphins, and now, I can’t wait to go again on Tuesday. I’m so excited by the prospect of possibly being able to manage with less care, so achieving more independence. The sun was shining, warm on my back on the journey home and I must have looked a bit daft as I wheeled along with a smile on my face like the Cheshire Cat in Alice in Wonderland!

woman in wheelchair exercise equipment

(photo credit – http://www.nchpad.org)

 

 

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MIXED EMOTIONS (AND POTTING UP GERANIUMS)

elderly woman gardening

(Photo credit: http://www.healthtap.com)

Ok – so this isn’t a picture of my Mum and those plants aren’t actually geraniums, but to all intents and purposes, both of those things could have been facts as that’s exactly what my Mum would have been doing at this time of year if she were still here. She loved geraniums of all colours and would have been repotting them all into bigger pots as they would have grown after their dormant period in the dark and damp basement of the house. They would have all been neatly arranged on the patio outside the kitchen, making a huge splash of colour in the garden.

In fact, this was actually what she was doing along with mowing the grass, cutting the hedge and tying up raspberry canes just two weeks before she had her stroke last year. She remained in hospital from then until the day she passed away just before the New Year this year.

I miss my Mum. I hurt. I’m still hurting. I don’t when or if the hurting ever stops. I have photos of her in my living room and by my bed and yet, believe it or not, I can’t look at them. I cannot look at my Mum. I just am not able to ‘make eye-contact’ with her. Perhaps, it’s too early. Perhaps it’s the pain of not having her here anymore. Maybe, it’s the shame. Perhaps, the guilt that I wrote about in a previous post is telling me that she would be ashamed of me.

I can vaguely scan past the photos. I know the one on my desk in front of me so well. It was a photo I had which was taken only weeks before Mum had her stroke. It’s a picture of her in the garden which was always a sanctuary for her, with the big honeysuckle rambling up a large trellis covering part of the brickwork of the house behind her and next to that are the peach-coloured, climbing roses clambering up the wooden fence. The patio in front of her, adorned with pots, large and small of her favourite geraniums, orange, white and red, all in full bloom.

But, every time my eyes catch the slightest glimpse of her face or her eyes or smile in the photos, my heart is wrenched from my chest, and my mind is screaming, “Noooooo ….”  I cannot cry – I really can’t. My eyes are prickling from the sheer pressure of my tears building up behind my eyelids and fighting to get out. Maybe, I can’t can’t cry because I’m afraid that if I start, I won’t ever be able to stop. I want to go and visit her grave and lay fresh flowers there, but it’s 50 miles away with no public transport with wheelchair access so impossible. Sometimes, I still feel so close to her and almost forget for a second that she has gone. At other times, she seems so very far away.

All the legalities regarding the will, probate and selling the house are continuing to go on in the background. It’s so hard to think of my childhood home being taken over by someone else. Who knows what will happen to it … maybe, it will house another family for many more years although there is also the possibility that it will be completely gutted and turned into several flats and that’s much harder to stomach. Moving on, emotionally, isn’t easy but I have to remember too, that it was only five months ago that Mum was with us and living in that house.

Mum was a great one for ‘keeping things’, usually followed by, “It’ll come in useful for something”, a trait that I’ve inherited. Amongst all the ‘useful somethings’, we’ve unearthed photo albums, not just of our childhoods but also of Mum when she was growing up and even some of my great-grandmother in the 1800’s … real treasure … a pictorial history of my family on my Mum’s side … fascinating. It’s going to take me forever to sort through all of those photos and distribute them to our remaining family. They’ll certainly provide me with lots of happy and no doubt, funny memories too which will probably eventually get passed down to my grandchildren and who knows, perhaps their grandchildren one day? Actual history in the making. Mum would be pleased.

ENIGMA

Enigma

Reality she feigns so well

Till the closet doors slam shut

A sureness of the truth becomes

A feeling from the gut

~~~

She’s dancing in the shadows

Tar running through her veins

Weaving webs of gossamer

Till nothing pure remains

~~~

Just then her hushed emotions

Tucked carefully away

Go howling to the hills

As night follows on from day

~~~

The darkness wears disguises

Where her heart and soul had been

Closely guarded secrets

Always clever, never seen

~~~

   And the devil burns so brightly

When the skeletons come out

Enigmas slowly surfacing

Until there is no doubt

 

LOSING SIGNIFICANT OTHERS

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More loss! How much more? It seems like an endless stream of significant other people in my life have departed or are leaving me. I am devastated and heartbroken. I don’t cope well with what feels like abandonment, especially as someone who has BPD or EID (Emotional Intensity Disorder) where this and rejection constantly loom like some ogre behind my shoulder, threatening to suffocate me.

I very recently lost my Mum (as some of you will know). This bereavement came five years after losing my Father. You could say that I should have expected these losses at some time, given that both my parents were in their eighties. However, this is always a major blow even after taking that into consideration.

Now, other important people in my life are leaving, and it’s beginning to get too much to bear. One of my two main Carers left last week, taking early retirement. Now, Helen, my P.A. and Support Worker is moving on after fifteen years with me. She is taking a different career path, and I will be acutely aware of her absence in my life.

Then, finally (at least for the time being) a very close friend announced yesterday that she was moving to the coast, eighty miles away to be nearer her daughter (we have known each other for nearly thirty years). We’ve had many happy times visiting places of interest, chatting over cups of coffee, pouring our hearts out to one another, and in general, putting the world to rights. We can phone or write, but with neither of us having transport or good health, it is unlikely that we will see each other again.

It’s all beginning to get a bit much, I’m lonely and am fighting hard not to fall into a pit of despair and depression. The friends that I do have seem to be mostly cyber-friends, either on Facebook, Twitter or WordPress. At least, in social media, I could put out some ‘friend requests’, but in real life, it’s not quite as easy as that. I guess if I reach the bottom, the only way to go is up, so I’ll try to hang on to that for the time being. Please, bear with me a little longer.

GRIEF WITHOUT DEATH

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I miss my Mum. I miss her so much.  A death you would think.  No, my Mum hasn’t passed away, but she’s had a severe stroke and has been in the hospital for nearly three months now. I miss her presence in my life – she was always there to talk to when I had problems with my children growing up and always in these later years when I’ve been battling with my mental heath.

She used to support me through everything and as the years ticked by, I was the one supporting her (and rightly so). We would talk on the phone for many hours, putting the world to rights and putting each other to rights. We rarely had a cross word.

I have to confess, there have been times when it’s felt a bit of a chore to have to phone my Mum every day, sometimes twice a day in more recent years.  I would, perhaps, think, “I want to spend more time with friends” on that particular night or “I’d like to spend the time writing my blog”.  Worse still, I’d be keen to text a good friend for a heart-to-heart or get that email written that I’ve been meaning to do for days.

Now, the evenings come, and I find myself thinking,  “I’ll just phone to see how ……….” – My sentence is cut short by the stark realisation that my Mum is not occupying the same space as she used to do. Something else is in her place – a horrible silence broken only by memories of how our relationship used to be.

Gone are our chats, our shared laughter and our mutual support. There are no long discussions about what she had planted in her garden that day with the full expectation of seeing her little seedlings and shoots develop into strong, tall plants. She’d tell me how she’d tied them up with green, garden twine against bamboo canes and watch them develop and bloom.

She won’t go back to that house again, nor her beloved garden that was her sanctuary, her escape from the world when life got difficult – not now. She could never manage the stairs, feed herself or live without 24-hour care and yet she’d managed independently since her separation from my father. She had lived in our family home for over sixty years. And to think the grass was being cut by her only two weeks before she had her stroke.

The damage to her brain is so extensive that she’s still unable to communicate verbally or in any other way,  and any hope of further improvements is met with serious doubt by the doctors and consultants.  The physios, the OTs and the speech and language therapists are not hopeful either.  I try to talk to her on the phone when I can’t get there – hoping to get a response but my questions always have the same replies – nothing – it’s heartbreaking.

I’m still travelling up to the City by train to see her at least once a week. The journey is always tough, fraught with difficulties and exhausting but I need to be there. I need to retain that little bit of hope. However, she isn’t even able to acknowledge that I’m there and I wonder where she has gone inside that broken shell of a body.

I feel I should not be grieving as she is still present with me. But I am – I’m grieving the loss of the person that my Mum once was; her presence in my life, her faded personality and her love, care and affection. She is no longer there.  But grieving when she is still alive; is that right? Is that acceptable? It is simply grief without death.

Image result for broken shell of a body

STROKE – COMPASSIONATE LEAVE

Image result for Right Brain Stroke Damage

Life has had a nasty habit of throwing us curveballs now and then. That ball has certainly knocked me down many times, but I think the important thing is that it’s not how far I fall but whether I can get up again from there. That’s true for everybody at some time, but I feel like I’ve had to do an awful lot of climbing back up over the years.

I don’t feel sorry for myself though as we all have to cope with this experience we call life. I’ve had a significant knockdown just recently which is limiting the amount of time that I have to write my blog – not that you could ever really call me a prolific writer – I’d say more a sporadic writer.

Right now, things are tough and a real challenge. My mum was sick before I wrote my last post – she was in a local hospital with pneumonia. That was bad enough. She is elderly and becoming rather frail now, and illnesses and accidents are becoming a common occurrence now, in her 87th year.

A week later while still on the ward, Mum was found collapsed in the bathroom – she’d had a stroke. The very thing she had always dreaded and said: “It’ll never happen to me”. I thought, until this event, perhaps somewhat naively she was going to be right – that she would live to an even riper old age than she was already.

An ambulance rushed her to the main City Hospital. A friend took me there later that day, and it was a real shock. There was my mum, laying almost helplessly unable to do anything. The whole of one side of her body was lifeless. She couldn’t move her arm or her leg; she couldn’t sit up – not even with support – she lurched sideways into a sad heap and had no balance. Her face had dropped so that her eyelid drooped and what was left of her smile had been taken away.

Two weeks later, she still hasn’t made much progress in her movements. Her speech is slurred, very soft and infrequent as her cognitive function has also been affected so that her brain is working much more slowly to process information. She’s unable to swallow properly so is on a diet of small portions of rather undignified, pureed food which she still manages to pull a face at in an odd way and I just know she’s thinking, “Why am I being given baby food?” I can’t begin to imagine how awful it must be for her to be trapped inside her mind without being able to express herself clearly or barely communicate.

Needless to say, her appetite is almost non-existent, and I can’t say I blame her when food has to be spoonfed into her now crooked mouth. Pureed shepherd’s pie and carrots, having been liquidised within an inch of their life, wouldn’t appeal much to me either.

I am travelling up to the City Hospital every other day (a journey by train in my wheelchair, George of two-and-a-half hours each way). I spend as long as I can with my mum but then return home along with the hoards of workers turning out from their places of work to head homeward. Travelling with an electric wheelchair is not fun when all around me are rushing, pushing and shoving to get home after a long day or a long shift.

As you will have gathered, I might not be able to make an appearance very often at the moment, so please excuse me if I have been unable to read, like or comment on your blog. I have only had the time to sort through the most important emails and phone calls, and it’s likely to be that way for some time. Thank you for your understanding, my friends 😦

MAKE LOVE ~NOT WAR

Image result for Love and Destruction

A few parts of this post are taken from one of my previous post, last year, with some new additions, adjustments and amendments. It includes a poem (below) that I’d like to share with you. written by a friend, Katie. Some of you might have already read parts of it but for those of you who haven’t, I hope it touches you as it did me.

I don’t claim to be an expert or even a particularly knowledgeable person when it comes to the subject of Planet Earth. I failed geography and history, abysmally at school. However, I do care about what we are doing to our world and beyond. I care about all the people who have suffered and lost their lives, those who are still suffering and those who will suffer in the future whether it be by natural causes, illness, disasters, war, violence, poverty or by any other means.

I care that we are destroying our planet; destroying our population; destroying our people, wildlife, and nature. I care that we are ravaged by war and violence; that we are polluting our planet and the atmosphere. I care that a huge number of people are homeless, roaming the streets, roaming the deserts, the plains, the forests and the wilderness. I could continue further, but many of us know the facts already.

A very close friend of mine, Katie, wrote this very moving poem which I wanted to share with you here….

The winds of Mother Nature are blowing on the Earth
Accepting all we’ve done to her since our sweet sacred birth.
There are babies curled in cradles unaware of hate and crime
Dreaming of their Mummies in the loving hands of Time.
Forgive us sweetest Mother for the ways that we’ve grown old
For independent streaks in us that turned our hearts too cold.
We’ve sinned so much we’re hurting and the pain is plain to see
That first we were so innocent on a gentle, rocking knee.
How love could turn to awful hate and safety turn to terror
Is based it seems on single thoughts that have their root in error.
Behind us and in front of us is such an awesome Love
That would have us in its gentlest hold in time with God above.
If only we could fall down flat and beg to stop the violence
Our hearts might cry sincerely out, then rest in hallowed silence.                                    

©Katie Marsh 2015

The recent and past atrocities have really brought home to me just how fragile our lives are. If only the power of love could overcome the power of war then maybe, just maybe we could experience peace in our time. Perhaps it would be a start

I am scared for all our futures; I’m scared for our children’s futures, our grandchildren’s futures and all future generations after that, if by then there is still a habitable planet to live on. The list goes on and on … and on … and on … and on … until infinity …

MAKE LOVE ~ NOT WAR.

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