Measles

I never remember my dreams, but last night, I woke up at 2.30am in a state of panic and fear. I’d had a nightmare, only this time, I remembered it vividly. I have no idea where it came from; I hadn’t been talking to anyone about my experience, and it wasn’t in my mind yesterday. I’m left wondering why I would remember this now. As I wrote this, I was shaking, recalling every detail as if it were yesterday. These are my memories of that time.

I remember when I was five.
and only very small
I got measles and constant nosebleeds
and had to go into hospital

It was called ‘The German Hospital’
It treated contagious infections
I was scared and wanted my teddy bear
At five, I needed affection

But it turned out to be a prison
and I was shut up all day in a cot
and when Mummy and Daddy left me there
I was only a little tot

Hardly anyone came to see me
I was in total isolation
Even the nurses who came every few hours
just gave me nasty medication

I couldn’t get out of the cot
though I’d stand there and call and cried
Surrounded by four solid walls
and trapped in there, inside

And I added my own tooth marks
to those that were there before
on the cot rail, in utter despair
hoping someone would walk through the door

Not another child did I see
the whole time I was in there
Mummy and Daddy didn’t visit much
and nobody seemed to care

Not even an ounce of kindness
did I get in that awful place
and I stood for  hours, rocking my cot
with tears streaming down my face.


My Day (Today) – Update

Yesterday, I wrote a post called, ‘The Day Before‘. So many of you (my friends and blogging buddies) were encouraging, kind, thoughtful, and caring, sending me your love and best wishes. I can’t tell you how much that support and love from you meant to me. I thank you all from the bottom of my heart. However, as I had feared …

BAD NEWS

I got home at about 3.30 pm (it’s now 8.15 pm), but I’ve been trying to get myself back into a space where I can communicate without breaking down again. I could hardly see the screen on my laptop through my tears. I feel totally exhausted from crying so much.

The counselling with my lovely counsellor, C., is definitely ending on 21st December, and there is absolutely no chance of continuing to see her again after that date. I’m devastated and heartbroken 💔. I have been through so much despair and heartache with her trying to come to terms with the frequent child sexual abuse and rape that I suffered from the age of eight until I was twelve. I haven’t said those exact words on my blog before, apart from the odd mention in my poetry, but, there it is – in black and white, as that is the truth of what happened to me.

I’m only part of the way through working on this awful trauma, and now I will be completely alone and without my counsellor. We spoke, in between my tears, about going onto the waiting list for general counselling, which I would have to pay for. Up until now, I’ve been treated under the Eating Disorders’ umbrella, which has been free. General counselling would be less specific and, although, my eating habits aren’t as bad as they were, I definitely can’t say that I’ve recovered from those issues.

C said she would speak to the organisation’s manager to see whether they would even accept me under the general team. She said, as I feared, there is a long waiting list. As it is, the counselling offices are closed from the 21st of December until the middle of January 2023. So, I know I’m in for a long wait. I feel panic-stricken at the thought of going it all alone until a place comes up (that’s if they accept me). I really don’t know how to cope with this situation. If I’m accepted (and I won’t know this till December), I’ve got to find the funds to pay for it. As I said in my last post, I can’t afford to heat my home this winter (I appreciate the ideas that people have suggested that might help). Something is going to have to give. It’s a case of whether I heat my home or eat decent food.

Assuming I am accepted, it will mean starting all over again with a completely new and unfamiliar counsellor. I don’t know if I can face going over all those painful memories once again. I feel despairing. My doctor is phoning me on Friday; I will have to update her. There is nothing else she can do. I’m exhausted with all the emotion and will have an early night accompanied by two Diazepam to attempt to give me some respite from what feels like being in the hall of crazy, distorted mirrors at the funfair. It just sums up how my life feels today – crazy and distorted.

Please forgive me if I missed reading your blogs today. I can hardly keep my eyes open. I will catch up with some, or I may have to miss today’s blogs and start afresh tomorrow. Thank you for listening. Until tomorrow … Love Ellie Xx 🖤

The Day Before

TODAY IS THE DAY BEFORE. It’s the day before I see my counsellor (C). She was away last week, so I’ve had to wait two long, painful weeks for an answer. Tomorrow is the day C tells me whether I can continue to see her after my last session, which is due on the 21st of December this year. Up until now, my therapy has been free under the council-funded Eating Disorders service, where I got six months of treatment, for which I’m very grateful.

However, now I cannot get any funding to continue seeing C under the general health team at that counselling organisation. It’s not just that, but there is a waiting list of ten months to even be considered. I can afford a little, but not the average fee for counselling, which is in the region of £50 – £60 per session. On the improbable off chance that C can continue with me without the ten-month wait, I will have to find the money. As it is, I struggle to make ends meet, and because of the UK cost of living crisis, I can’t even afford to have any heating on this winter. Being cold is miserable, but I’ll put up with it if it means I can continue to see C. I’m counting the hours and minutes until I go for my session tomorrow. I feel absolutely sick with worry.

All that aside, I have also lost three people this week (not through deaths, thankfully.) Their losses have been a blow, nevertheless. I had a Befriender from the Hospice who had phoned me every Friday – we’ve been chatting for nearly a year – just day-to-day stuff, like friends. She called me on Friday to say this was her last call as she was leaving the service to work with her daughter.

The same day, I had a call from my lovely pharmacy assistant, who’s been dispensing my medication for the last ten years, and whom I got to know on first-name terms and almost like friends. She always had time for a quick chat.

Finally, I had a call from Amy, who works for the NHS Wellbeing Team. She told me, very kindly, that because my mental health has deteriorated, she can no longer work with me. I just can’t figure that one out.

I’ve seen images on Google that say something along the lines of the picture below. Sadly, it’s no consolation to me right now. Please, wish me luck for tomorrow and keep your fingers crossed that the decision goes in my favour. I will update my situation either tomorrow or within a few days depending on the outcome.

Thank you to all my amazing and beautiful friends and readers who have been there for me on every step of my recent painful journey. Love Ellie Xx 🖤

(Image source – main photo – Photo by Liza Summer: https://www.pexels.com)

Exhaustion


Photo by Anna Tarazevich – Pexels

Okay … time to be honest and confess. I’m stressed. Extremely stressed. I’ve had so much on my plate lately that I’m struggling to cope with anything other than the usual routine of life. I’ve denied my own needs and am mentally exhausted. I’m hardly even going out these days. Staying cooped up all day isn’t good for my mental health either. I’ve spent so much time and energy, both mentally and physically, getting ready for my family to stay with me, and now that the rooms are finished, I find myself in a state of near collapse. This isn’t something I like to admit readily (or publicly), yet here I am doing precisely that.

I’m w-a-a-a-y behind on so many things, not least of which is keeping up with reading my blogging friends’ posts. My brain is frazzled. My concentration shot to pieces. When I do read a post, I take it in and appreciate it and show that with a ‘like,’ but making enough sense to leave even a semi-worthy comment is proving too challenging. I’ve recently been apologising a lot for my inadequacies – for not keeping up, whether it’s reading blogs or making phone calls to friends and family.

Tomorrow, my friend has suggested we go out for lunch. She’s worried about me and tells me I need a break. She’s right, of course; admitting that to her is one thing, but admitting it to myself is something else entirely. It’ll tear me away from my laptop, to which I’ve become permanently joined at the hip, and that can’t be healthy for anyone. On Tuesdays, I take part in a garden project. It’s enjoyable, social and relaxing. I took a break from it recently as I had other priorities. I think now is the time to resume that hobby. The last time I was there, we were picking gorgeously-perfumed sweet peas – one of my favourite flowers.

One of my friends presented me with a posy of sweet peas and lavender.

Some of you will know I wrote a post about the changes going on for me at home. I wasn’t at all happy with my writing standard yesterday and seriously considered deleting it. Being a self-inflicted perfectionist isn’t doing me any favours right now. I’ve thought long and hard about writing this post and hope you will understand. I will still be here, happy to read your posts as always and perhaps, writing when inspiration strikes, but I am giving myself permission to not put myself under so much pressure to say the right things, to constantly apologise for not keeping up and making myself feel so inadequate for a while, or at least, until I’ve got my mental health sorted out a little more. So, please, don’t be offended if I don’t leave my usual style of lengthy comments. It doesn’t mean I don’t appreciate your writing; just that I need to give my mind a break.

It wasn’t easy to write this post. It feels like giving up, like failure or admitting defeat, but needs must, and I owe it to myself to be sensible. Keep writing as beautifully as you ever do, my friends, and I’ll catch up with you as and when I can. Thank you for your understanding. I appreciate it in advance. Much love, Ellie xx 💝

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!! 🙂

 

 

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 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)

 

 

I

 

 

MOVING FORWARD – THE PASSAGE OF TIME AND BIRTHDAY CAKE

Image result for Steampunk Clock

Why an image of a clock to begin this post with? This is because it is actually a good depiction of my feelings and where I’ve been at for some time. Life has felt rather surreal during this last year. The clock face also shows the passage of time I have been through over the last few months.

At last, I’m beginning to feel like I’m getting back to normal after my Mum became ill, had a stroke, and I finally lost her only five months ago (almost to the day). There was the funeral to get through (and all that encompassed) and now, we are dealing with probate, Mum’s will and the sale of our family home after spending my first twenty years of life there.

However, as far as my psychiatric health in concerned, I’m feeling brighter which is good (and about time too). I am now on different and new medication which, in the last week has begun to help improve my state of mind, and I’m sleeping so much better which makes a great difference to how I feel during the day. The severe anxiety attacks have also lessened which is a huge relief.

The many cogs in this clock also represent changes in a more positive way … slowly … as time has ticked by and the wheels have been turning, my relationship with my son has improved, and we have become closer which means I have more contact with my two beautiful grandchildren, Josh and Lily who are a delight to me. I have definitely become closer to my sisters, particularly the one who lives the furthest away from me. We may be separated by many miles but are hearts are inextricably linked and always will be.

The recent passage of time, like each cog, has been whirring, clicking and ticking by slowly but steadily. A lot else has changed in that time too. My eldest granddaughter has now turned eleven and will be going up to senior school in September, and my youngest granddaughter will be starting primary school at the age of four-and-a-half (she seems too young). Where has the time gone? Am I really old enough to have a granddaughter in senior school? Goodness! I must be older than I think! I’m definitely older in years than I feel and I am fortunate enough to be told by several people that I don’t look my age. However, I am reluctantly coming up to ‘a biggy’; a big ‘0’ birthday in three month’s time (which I’m trying to ignore) … ugh! How am I going to get all my candles on one cake?!

Image result for Birthday Cake with Many Candles

In addition, I would like to say thank you to my dearest friends here at WordPress who have stuck by me through thick and thin over the last year or so – it can’t have been easy at times. Their blogs have kept my head above water some of that time by distracting me with their diversity, interest, humour and compassion. So, shout out to Bun at https://bunkaryudo.wordpress.com/ and Mick at https://mickcanning.co/ and Carol anne of https://therapybits.com/. Also, thank you to any of you who may have called in or dropped by my blog and hung around with support and kind words too. Love to you all, Ellie xxx