Travelling in Style!

Travelling in style!!

I thought yesterday was thwart with difficulties. Today, I really did it in style! I’d just travelled down to town in Alfie, my new electric powerchair when I started to feel out of kilter. Uh, oh, I’d had this feeling before. I immediately looked over Alfie, only to discover two completely flat rear tyres! Not again … the last time this happened, I was on the end of the longest pier in the world at Southend-on-Sea! It’s 2.16 kilometres! You can read this here – Sunnier Climes – Part 2 – The Pier.

I was sitting outside M&S (Marks & Spencer) – a big chain store, especially in the UK. I needed assistance, so I limped slowly into the entrance to attract a store assistant. I could feel the rims scraping the ground with every limping inch. Ouch. I just managed to get inside the door out of the hot, bright sun. Fortunately, I have a rescue service as part of my lease contract for such occasions; I phoned them to be told they would be with me as soon as they could.

An hour later, still waiting, I was getting cold as I’d only managed to drive as far as the freezer cabinets by the door. I hadn’t thought to bring a jacket on such a beautiful day. A lovely assistant approached me and asked if I’d like a hot drink. She came back with a coffee. She also picked up a vegan sandwich for me. I was hungry by then. As the hours were ticking away, I was getting very cold, so they gave me one of the Stock Controller’s freezer jackets to put around my shoulders till my transport came. The shop staff were wonderful – they couldn’t have been more helpful and friendly. I’ll definitely be making a call to Customer Services tomorrow to give my compliments and to ask for the staff to be personally thanked.

I sat and waited … and waited … and waited. One of the assistants kept popping his head out of the door to see if there were any signs of rescue. Nothing. I phoned the rescue people again, only to be told they were having difficulties finding a vehicle to collect me. More waiting.

After three-and-a-half hours, a man in grey and orange overalls and muddy boots came toward me. This was my knight in shining armour! I was very pleased to see him. He’d come to take my wheelchair home and helped me into a waiting taxi as he wasn’t allowed to carry passengers. Just as I got home, I saw a truck outside with Alfie on the back. It was a 7.5-ton pick-up truck!! Apparently, that’s all they had available. Some neighbours had come out to watch as my knight guided Alfie, looking very sorry for himself, down the ramp. Finally, we were home. What a day. Lucky I’ve got a very good sense of humour. I won’t live this one down for a long time!

I’ll never live it down 😂

Best Foot Forward …

The only photo of me in the flesh that you’re likely to ever see! I’m shy.
Make the most of it – it’s not likely to happen again 😉!

I thought I’d give you a little background information about my disability. It’s not something I’ve previously spoken about much in my blog, so this is my story.

I started life as an able-bodied little girl who did all the usual activities that young children do. I was always small, skinny and underweight, but there were advantages to being as I was. I could shin up the gym apparatus faster than many children in my class. Considering I was sometimes thought of as a weed, I did pretty well. I grew up, married, had my two children, Tom and Clare, and then my ex left. I continued to raise the children alone and also had to work to bring some money in for us to live on. It was a tough time, but I was very content. Between school runs, the children’s football matches and netball, I was a carer and home help for ten years (I’d initially trained as a secretary and worked in the City of London for several years). I combined my work which I loved, with caring for Tom and Clare; we were a very happy little family.

When the children were about thirteen and eleven, I saved enough to take them to the funfair in town (Essex in the UK). It was there that I had my accident which was to change the course of my life.
When our carriage crashed, I felt a tremendous jolt that jarred my neck and spine. Eventually, after a lengthy spell in hospital (with my children staying with my Mum) and with many tests, x-rays, scans and examinations, the doctors decided I’d damaged the nerve endings leading from my spine. They said it was permanent. It was an awful lot to come to terms with, but over time, I grew, not so much to accept it but more to live my life despite it. I wasn’t about to give in easily. The pain was awful, though, and I was on morphine for quite a while. It wasn’t all bad – I was away with the fairies much of the time 😄!

Fast forward twenty years. It was recommended that I have a DEXA Scan as osteoporosis was suspected, given that I’d always been small-boned, had experienced a few years previously with anorexia, and being unable to exercise very often. When I got my results, I was unsure who was more shocked, the radiographer or me. My T-scores were appallingly low. A score of -2.5 indicates osteoporosis, but mine was -4.5, which meant I had severe osteoporosis.

Degrees of osteoporosis
Mine is severe, meaning there is more air space (in brown) and very little solid bone (shown in beige). It’s a wonder I haven’t entirely disintegrated!!

I was told I could die if I fractured my hip or be left even more disabled if I injured my spine. I have to admit I was scared – very scared. Every move I made seemed risky, and I lived in fear for a while. I became super-careful with everything I did, but two years ago, I tripped over Peanut (my new cat) while transferring from my wheelchair to my walking frame. There I was being rushed off to Accident & Emergency for the second time. I was in agony. I’ve never felt pain like it. After all the x-rays and scans came back, the doctors announced that I’d broken my pelvis, not once, not twice, but in six different places. I don’t do things by halves. If I’m going to have an accident, I’ve got to do it in style!

Strangely enough, contrary to what most people would think, I don’t have any regrets; I’m not angry or bitter or in the least bit dissatisfied with my life. I am who I am. Without the experiences I’ve been through, I wouldn’t be me. I wouldn’t be Ellie.

My next post (Part Two) will be about my journey back to good health and where I intend to go from here on in.

Okay … these aren’t my legs, but just an indication of where I go next on my journey. Look out for part two.

The Missing Mum Years

My childhood home

This is my dear late Mum’s house as it stands now. It was my childhood home until I married at twenty years of age and moved out. I’ve been reminiscing about this house over the last couple of days. One of my sisters had been back to visit there recently. Although she advised me against it, I asked her to share her photo with me. Big mistake! Huge mistake, in fact. It’s no longer how I remember it. Gone is the beautiful orange door (not that it’s visible in this picture) – it’s been replaced by a dull grey. The window frames have all been painted stark white over the original orange. Orange was Mum’s favourite colour. The steps outside are also not visible in this photo. The neat box hedge has completely overgrown, as has the glorious pink azalea shrub. I feel so sad. I shouldn’t have asked to see this photo. I should have known it would be different now, six years after losing my Mum. I still miss her so much. I always will.

The steps at the front of the house were a barrier for me for the last four years before Mum passed away. Being a wheelchair user now, there was no way I could climb them to get into the house. To make matters worse, Mum was severely agoraphobic, which meant she couldn’t leave there. It meant that we didn’t see each other for all that time. It broke my heart (and hers). We spoke on the phone a lot, especially towards the end. I would call two or three times a day to check she was okay. She mainly was as fit as a fiddle … until she had her stroke. Before that happened, she would vigorously mow the grass, raking it up, digging and planting flowers and tomatoes.

Those last four years were so painful. I didn’t feel sorry myself; I never did, but I felt angry and frustrated about my disability stopping me from seeing her. It was hard to come to terms with, and we missed each other terribly. The only time I got to see her in those last years was when, towards the end, she was admitted to hospital after her stroke. Hospitals are nearly always accessible. She was never the same after that happened. I wrote a post about this at the time. You can read about it at https://elliethompson.uk/2016/11/26/grief-without-death/.

I’m glad I can’t see the inside of the house; it must be so different now, and it would only upset me further. The kitchen was always my favourite room. The kitchen units were orange, as was her one-person teapot, which sat permanently on the side waiting to be filled. She loved her cups of tea and her toast and marmalade, which she’d have for breakfast every morning. After we lost Mum, there were all the usual formalities to arrange; the funeral, the interment, the house to sort out etc. My sisters came from various parts of the country to deal with all this, but I had no choice, being unable to go up those damn steps. My sisters were very kindly involving me as much as possible by taking pictures of everything, so I could decide what I’d like to have. I chose Mum’s little orange teapot. It reminded me so much of her.

Mum’s orange teapot sitting comfortably on my kitchen windowsill

I have a tradition now. Every year, on Mum’s birthday and on Mother’s Day, I take myself off to a quaint tea shop in my city. I order myself a pot of tea (I usually drink coffee) and some toast and marmalade. Sometimes, I order a slice of cake – Mum always enjoyed her cake. Having recently bought the loveliest card I could find in John Lewis, I sit for a couple of hours and write to her. I write it as a conversation between us, just as if she were there with me, drinking tea and eating toast or cake. It makes me feel closer to her at those times. I wish she were still here to join me. But, however much I write, it’ll never make up for those four years when I couldn’t see her. I missed so much of her later life. I think I’ll always miss her – the pain doesn’t lessen. Perhaps, it will in time.

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.

 

 

WATCH ME GO!

See the source image

(Image courtesy of indoortrainingbikes.com – Bing Images)

I haven’t said much about trying to improve my fitness at the gym for a good while now. The last post I wrote, WORKING OUT, about it was over a year ago and you can read it here: https://elliethompson.wordpress.com/2017/06/17/working-out/ if you want to find out where I started from. It has been up to now a very personal journey.

When I started out, I wasn’t even able to get changed without the assistance of a carer, who I didn’t have with me at the time. I was lifting pencil-like weights in an attempt to strengthen the muscles in my arms, and then recovering by downing a smoothie in the fitness centre’s cafe. That was about my limit back then.

Since then, I’ve been going a couple of times a week, fitting it in between college, my voluntary work at Uni, living my daily life, leisure times, chilling out etc. I can honestly say that I do thoroughly enjoy what I do (and I know I am lucky to be able to say that now. Those of you who know me from even a year or so back will know that it hasn’t always been like this, particularly from my mental health perspective). I’m not saying that there won’t be other difficult times ahead, but I feel more able to deal with them now.

Going back to my post … my gym training has really paid off, and I’m so pleased it has. I can now get changed by myself in the disabled shower and changing room. I’m much stronger. My arms, which were struggling with small efforts, can now take my weight and I can lift myself up out of my chair which is allowing me to stand more easily. My back and shoulders are straighter and my neck no longer needs a support. Even my legs are getting stronger (after all these years of thinking I couldn’t do it). Finally, today, I reached my first big milestone! I managed (with very little assistance) to get on an exercise bike and I was even able to push the pedals around very slowly. I can’t tell you how thrilled I am! 🙂 My next aim is to walk with the aid of crutches, and what’s more, I know I can get there.  You just watch me!! 🙂

 

 

THE TROUBLE WITH GEORGE

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Having my old tatty kitchen amazingly transformed into a beautiful, new and modern kitchen with units and a gas hob I can reach has meant I can use it independently of my carers. I’ve got a lovely, new electric oven (I have to get used to the temperatures as I’ve only had gas before). I’ve truly found freedom. At first, the novelty of washing-up at my low-level sink seemed attractive! Now I’m not so sure about that bit, but, nevertheless, I’m determined to not to rely solely on my carers, and I thoroughly enjoy cooking.

The next home-improvement project was my patio with a ramp. The word ‘patio‘ is in italics because it is actually built on the base of my newish forget-me-not blue garden shed – see my earlier post which you can find here … MY FORGET-ME-NOT SHED. The poor unfortunate hut became redundant (which is another story!), and was sold for a small sum to a primary school whose sports shed had been burnt down in a horrible arson attack. By rights, I should now be able to get up my ramp, accessing it through the front door, down the side of the house and through the gate – a bit of a long way round, but functional nevertheless. I’d be able to eat, drink and sunbathe up there if I wanted to whenever the weather is good and I have the time.

There is one big hiccup to this story. GEORGE!! Just when I was savouring the prospect of getting a nice suntan (with sun-factor 50 cream), and entertaining guests out there in the sunshine, George (my electric wheelchair for those of you who aren’t yet acquainted) decided to develop a fault. He sits, stubbornly staring at the ramp and refuses to summon up enough energy to climb it. He’s meant to travel at 8mph (no idea what that is in km), but in fact, he’s probably only going at about a fraction-of-a-mile an hour. No good! I imagine it’s the equivalent of an accelerator in a car going – or rather, not going. All this fantastic progress going forward; first the kitchen and new-found independence; and then the patio; and now? Now – my usual trustworthy lump of metal (sorry, George) frustratingly refuses to get up the ramp and embarrassingly slides backwards. I’m going nowhere fast.

Roll on Monday when the mobility repair company come out, and hopefully, give George the kiss-of-life, no doubt at a sizeable cost to me. Needs must.

MY FORGET-ME-NOT SHED

Image result for a blue shed

I’m aware that I’ve been away since the middle of July (or thereabouts), so that’s nearly four months which must be the longest I’ve ever been away from my blog for. A lot has happened in my life during that time.

Ten-and-a-half months have passed since I lost my beautiful Mum. That time hasn’t been like I would have expected it to be. I haven’t been able to grieve. Strangely, and somewhat disconcertingly, I haven’t been able to cry either. I still cannot look at my Mum in any of the photos that I have. This isn’t how I expected grief to be. However, I am aware that everybody grieves in their own way and in their own time. Maybe, the time isn’t right for me yet.

As for other goings-on in my life, they have been more positive. Some of you may remember that my care regime was about change drastically with new carers coming into place and old ones going. I’m pleased to say that it has all worked out far better than I could have imagined.

I was also at the beginning of having a lot of work done on my house too. This has been a prolonged process, but I am getting there gradually. My bedroom is finished and is now a haven of peace and calm in which to sleep. The new shed has been built in the garden, that is, after being ripped-off by builders who I, eventually, sent packing, and consequently, employed new ones who have done a great job.)  The shed is painted a delightful shade of forget-me-not blue (at least, I think it’s delightful – I can’t speak for the neighbours).

The next and most significant project is adapting and renewing my twenty-five-year-old kitchen. This, I’m most excited about. It’s going to have lowered worktops, a new lower hob and a sink, all of which will be accessible to me in my manual wheelchair. The work is due to start in about two weeks. I’m currently at the stage where I and my carers are frantically sorting through cupboards and drawers with the intention of clearing out everything we haven’t used in the last two years, (that includes packaged food in the units that are well past their sell-by date!) I can’t wait for the new kitchen to be installed, although I’m not eager to face all the mess and disruption. However, as they say, “you can’t make an omelette without breaking eggs”)

Well, I think that’s just about a relatively accurate round-up of what’s going on in my life at the moment. I promise I’ll try to catch up on some of your blogs as soon as I can, and I really will try not to leave it another four months until I pop into WordPress again. Thanks for sticking with me through my absence.

 

WORKING OUT

woman-lifting-free-weights-in-fitness-gym-assembly

(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 œ 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 cafĂ©teria 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)

 

 

I

 

 

LOOKING ON THE BRIGHT SIDE.

don't need to sit on a cactus

I certainly was given a cactus many years ago as is evident in my earlier writings about my very abusive childhood and not too pretty adulthood. I don’t intend to go back to that time of my life. It’s now a case of ‘been there; done that’, you’ll be pleased to hear. I’ve been sitting on the cactus for too long, and it’s getting too prickly so, now is the time to get off.

I’ve been taking life far too seriously of late so, although there may still be the odd solemn post because life isn’t always a bundle of laughs, on the whole, I want to lighten up a bit. [“Phew”] – Was that a big sigh of relief that I detected from my faithful followers? Yes? I don’t blame you – it’s as much of a relief to me as it is to you 🙂

Yep! It’s true that I will always have Borderline Personality Disorder (BPD) or Emotional Intensity Disorder [as they are now beginning to refer to this condition] and this really can mess up my head at times. I’ve included an excellent link to explain what it’s like living inside the mind of some people with BPD. Please take the time to read it if you are interested – it’s not long-winded or boring, I promise: http://themighty.com/2016/07/how-to-explain-borderline-personality-disorder-to-loved-ones/

So, what of late? George (my new wheelchair, if you haven’t yet been introduced), is behaving himself brilliantly, and I love the fact that I can whizz down the path by the river at a colossal speed of 6mph. That’s 2mph faster than Charlie ever did although, fair credit to him – he did turn on a sixpence with much more finesse than George. George is nippier, although the little devil doesn’t much like getting up too close and personal with the veg section in my local Tesco’s. As for poor old Charlie, he’s sitting and looking very bored in the garage but as from today, he’s up for sale, on eBay listed as having been ‘a dear friend to one careful lady owner’ and ‘in need of a new home’. Although he’s seen better days and won’t go the distance anymore, he’ll do someone a good turn if they just want him for indoor and local use.

Oh, have I not mentioned the new addition to the family? I am now the very proud owner of a two gleaming, new, white patio doors (twins, of course). They’re sleeping soundly at present down at the dining-room end of my living-room. When they get mucky, they much prefer a duster to a wet-wipe. I’ve not named them yet; however, several names spring to mind, Tom & Jerry, Fred & Freda, Ant & Dec … I’m undecided. All suggestions are very welcome. They are looking very grand which is about the amount much they bumped up my credit card bill by. Needs must, though – with fair due, they’ve seen better days, 10,957 of them, in fact! I will bid you adieu while I leave you working out the equation of days into years.

 

GETTING ON WITH MY LIFE (RANT)

mental and physical health

Why does everything have to be a battle? I think, sometimes, the world revolves around money, [as well as politics, religion and small-minded people who think they have a right to take innocent lives, but in the light of the very recent killings in Orlando, I don’t intend to go into that here].

On a much more personal (and perhaps selfish) note, I have spent the last three months fighting for funding to allow me to keep the basic disability care that I need every day. I appreciate that I am very fortunate to have any care at all when there are so many people without care, both in developed countries and even more so in third-world countries. You may ask why I don’t provide fully for myself financially – the answer being that I am not able to work because I am studying – and that is in order to get back to some useful work. I only wish I had a wealthy or affluent partner or family on tap but that is not the case.

Currently, the Social Care Department are now arguing with me as to whether I need my electric wheelchair as opposed to a manual one.  They are prepared to supply me with a standard wheelchair which, yes, would get me about in my home with some assistance needed but would be hopeless if I wanted to have more than an indoor or very limited lifestyle.

There would be no more getting into the town for food and shopping as well as going to University, where I am studying  for a degree in Psychology and Public Health so that I can go out [ironically, in my electric wheelchair] and operate both economically and productively in society. Other necessary journeys would also be curtailed and therefore, out of the question. Don’t they get it? My wheelchair is my legs. I feel it would make far more sense if I were able to live a life outside of my home where I can function, independently, realistically and be able to earn enough to enable me to buy my own electric wheelchair which would solve the problem altogether.

Can’t they see how short-sighted they are? If I can’t remain as independent as I currently am, it is very likely to impact on my mental health. I could require more care from mental health resources which would, in turn, affect my physical health. This would lessen my chances of returning to work. This would be more of a drain on the Government Health Department and cost them much more in the long term.

My mental health, that is my Emotional Intensity Disorder (EID), also known as Borderline Personality Disorder (BPD) is no secret from them, nor my friends and family or indeed my WordPress followers. It is a day-to-day struggle just to stay on an even keel as things are now and attempt to support myself. I live my life positively in general, and I wish for that status quo to remain. However, it does affect my life in a big way but, I neither feel sorry for myself nor expect the world to be handed to me on a plate. When it comes down to it, I just want to live a fulfilling and useful life and be of much use to my friends, family, society in general and the world as possible.

Currently, I now feel physically and mentally exhausted. Is it selfish, at this point, to say that, yes, I do also want to be as happy and content as I can possibly be for myself too?

Rant over.