I thought I would share my own experiences in hope that others may be able to recognise how I feel and maybe that they are not alone.
Three years ago I was a fit active woman, I ran my own company, kickboxed twice a week, in the gym everyday and a Head Door person. I had been a successful gymnast and I know my physical abilities created a large part of my personality and social circle.
In 2010 I dropped a tv on my foot and it triggered crps in my foot then leg and now the whole of my left hand side of my body. It has left me confined to a wheelchair, in constant pain and unable to do some of the most basic functions of my daily life. My brain however is the still brain that spent 44 years being physically orientated. I get frustrated, I get angry and I mourn what was. My friends often introduce me to new people as this is Nutty she used to be a gymnast and she used to be that, as if well look at her now she is nothing, she is valueless.
I am still struggling with this but as I have recognised the problem and am now working on resolving it by creating a new way of looking at myself, a new way of sharing who I am with others and gaining confidence that I still have a value to society and more importantly to myself.
I started by writing a list of everything I can still do and all the new things I have learnt to do. I wrote down what hobbies I wanted to take an interest in and how I was going to achieve that goal. I introduce myself as Nutty, admin assistant into photography and crime novels. I talk about the things I plan to do and what I hope to achieve in the future. This change in me has triggered a change in how my friends view me and they now say things like, wow you should see this pic Nutty got of the marina and did you know Nutty is planning on ...........
It is still hard and I still mourn but now I can enjoy the memories of the past whilst looking to the future.
I hope this helps one other person recognise that change can be positive and there is life after disability.
nutty x
Written by
welshnut
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Hello Nutty
Like you I was a very active person, also I had to change my life and come to terms with my disability, so now I have begun to remove people that are negative to my needs and look toward people who accept who and what we are.
I try and achieve new challenges, I research my conditions and try and help people come to terms with there disabilities in my home county. My interests include National Trust, English Heritage and Historic houses and have a keen interest in History, Geography and Archaeology, and take a further interest in the garden growing fruit and vegetables.although gardening is a very restrictive pastime for me and will have to make it easier to get around
There is plenty things too do, just think and look, with all research the day is never long enough
I too have been going though a phase of feeling valueless. Although my mobility is reasonably good. It has been tempting to focus on the things that I have lost. And the only thing I seemed to have gained is unrelenting pain.
I have allowed friendships to slip as I am fatigued. I find this and the Fibro site a valuable way of feeling less isolated.
I would love to see the odd photo that you take. This is a hobby I have little energy for other than to get my compact job out. And I do sometimes.
If I could get the photos on to my ipad I would suggest a photo Friday. Where we could post a picture.
I found it brilliant therapy when I went through a period of depression. You can frame and reframe, I found it totally absorbing. Plus it gave a reason to get out and about. I found a brilliant club. And learnt lots.
Do you watch those Scandinavian crime programmes on Saturday. I have to video them and watch them on Sunday after noons so at least I can concentrate on them.
Hi Nutty, this was a very inspiring post to read. You are right you must think of the positives when disabled, however if you need help sometimes we have to be negative. Independence and a good life is dependent on making adaptations for your new life as a not so active person.
Good for you, Nutty! It is so easy to let pain define you, but it is possible, bit by bit, to reinvent yourself, and in such a positive and inspiring way. It does take time to change how you think and feel about yourself now compared to then, and there's nothing wrong with wishing things could be different sometimes. Sounds like you are in a good place at the moment.
Thanks this has helped a lot I know I have suffered for a lot less time than most but it is coming up to a year since I first injured myself which started CRPS in my left foot and is now up to my hip on that side of my body. Even though I have remained determined and positive about things I have hit a low. My partner is hoping to take on a mortgage on his own as I will be classed as a dependent and therefore will decrease our chances of getting a house. This means we will finally get to move from his parents where we have been since my accident. But it's as though life is passing me by its hard to explain but that I am living and do things within this life but everything else is zooming past me without me in it.
Also dampening my spirits is my benefit health assessment is at 10:30am on my 25th birthday this Sunday!
However after a few doctors appointments this week I went and bought myself some crafting magazines as I lost my crafting drive after making all 40 christmas presents this last christmas.
I made my first card and now want to make lots more! Excited to get a house and have a craft area set up and that even if I cannot get back to work part time even that I will continue making as much as I can and maybe sell some of the things I make.
CRPS has also cemented my relationship with my fiancée and he has been completely amazing. Friends and family try to understand and support me as much as they can but not living with me and witnessing the hardest times I think they struggle.
But I don't love them any less and try to see them as often as I can usually 1 friend a month and family the same as it's so exhausting.
Thank you nutty and I am pleased you are in a better place I know I'll come through the other side
Thanks Nutty, that was a very inspiring piece you put up for us, and other people have also written some great things too after reading your contribution. We all need inspiration to go on coping with pain and disability. Good luck.
I would like to thank everyone for their replies, Bob you have always been an inspiration to me on this site and I hope to be able to put your advice into action. Ned you always make me smile and Pat you are an amazing lady.
Thank you to everyone for contributing trying to be positive is hard but as we are all here for each other I think we stand a good chance of moving forward and making the most of what we have. I wish I could answer everyone individually but today the brain and body are not quite in sync so once more thank you.
A good Pain Centre would help you so much in consolidating your positive outlook and in giving you great advice and support - and help in moving on from what was, to what is. We are more than our pain.
Sounds like you are coming out of the bereavement stage.
You have not said if you have had treatment from movement specialists regarding the muscular spasms you are no doubt getting. Muscular spasms are not touched upon by NHS rheumatologists or NHS physios. Movement specialists are often not available on the NHS. McTimony chiropractors could be helpful for your condition as well as experienced Alexander Teachers. The right kind of sensitive Massage therapist could be helpful as well.
With some injuries there is constant work that must be done to keep muscle from seizing up. There is also the work that needs to be done to locate the places where muscle has seized up. Massage experts can feel the areas by working with there hands. Alexander Teachers can also locate the areas of seized muscle that needs working on.
As an ex-gymnast you are no doubt aware that the more contracted a muscle is the weaker it becomes. Also you must be aware that when a muscle goes into cramp you need to manually lengthen it out. There is no mechanism in the body for over contracted muscle to become less contracted unless another muscle pulls on that over contracted muscle or someone else is kind enough to stretch out that muscle for you.
If you rely on the NHS you will meet the lack of knowledge there is in that body concerning muscle behaviour. You need to hit the books concerning how muscles work and see people who work on muscle for a living outside the NHS for useful help.
I saying a lot of things you may already know and have tried. I do not know if what I have said is new or has already been put into practice.
Thank you so much for your contribution, your story has really hit a nerve with me. I had a severe Cellulitis in my left leg August 2012, prior to this i had a successful career working as a social worker with Adults with Learning difficulties, I loved my job although not the red tape and hoops we had to jump through to finance a package of support!! I was a parent of 2 boys (one was 21 and the other was 12) my eldest had just graduated from uni and my youngest lives with Autism, i had a mortgage and drove a car, i was fiercely independent and on occasion outspoken regarding inequality and injustice that i saw.
August 2012 changed my life as I knew it. i was in hospital for a month as the cellulitis was the 'worst case that the consultant had ever saw' i came close to amputation twice. the skin on my leg recovered but my internal leg simply didn't, i spent a year being seen by a variety of specialists and had numerous scans and investigations. I developed a DVT in the groin of the bad leg 8 months after the cellulitis. Anyway my vascular surgeon referred me to the Limb fitting service for a pre-amp consultation as the leg has been left in a terrible state and is virtually useless to me as such amputation and rehab was the only viable option
I was diagnosed with CRPS 14 months after the cellulitis so i can no longer have the amputation.
work are terminating my contract of employment using 'medical capability' they think i would be a health and safety risk in the community due to my limited mobility and that my leg needs to be elevated as when its down it turns purple/blue/red and the pain increases.
So at the moment i'm stuck feeling that there is no future, i feel useless, i'm devastated that i'm loosing the life i once knew and it has been replaced with one that i don't recognise
it is certainly refreshing to hear that there is life after disability, i'm desperately searching for mine at the moment!!
Thank you for sharing your story, it inspired me to reply and i kept my concentration throughout
CRPS is so crippling and end up with it after all that you went through seems so unfair. I have begged them to amputate my leg but now I have more or less come to terms with knowing they wont.
It takes a lot of energy to be positive, more energy than we can often use but I have found little achievements make all the difference. I have just invested in a new printer so when I can not find the energy to go out taking pics I can print them instead lol. I also had a weekend away at friends, I had a wonderful time and although I am paying a heavy price this week it was so worth it.
Good luck and if ever you need a chat I am usually about.
See... there ARE some seriously inspirational people in this world... and YOU are one of them. Do you never stop to think just what a fantastic thing you are doing, by sharing your positive experiences of re-inventing yourself following a change of life circumstances due to disability? I reckon you may have been selling yourself short...
Unexpected events - especially those that radically alter our lives, and are traumatic - are naturally hard to deal with. Humans appear to prefer stability and an element of predictability; the unknown, or dramatic change, can be deeply unsettling.
Coming to terms with an acquired disability or chronic illness is really NOT EASY. It requires a heck of a lot from us - persistence, stamina, resilience, determination, creativity, acceptance of change, ability to re-invent... Things that many ABLE-BODIED people struggle with. Life throws all sorts of unexpected challenges at us. There are those of us who adapt, and cope; and those who do NOT. And... HERE's the ironic bit... DISABILITY has nothing to do with it. Some people with DISABILITIES cope better, thrive better, and achieve more in their lifetimes than others who are fully able-bodied.
IT IS ALL IN THE MIND... AND, AS YOU ADMIT TO YOURSELF... YOURS IS A HIGHLY ACTIVE MIND. NO BAD THING...
I can empathize with your experience. I am 43 years of age. Sometimes, I feel as though my life has been cut in two. There is the "old life", and the one I have now...
I was a highly academic child, and grew up getting good grades at school. Yes, there WERE some serious problems in my upbringing (a mother with mental illness, and being fostered as a youngster are just two examples)... but I always coped. I was bullied mercilessly throughout my time in education ( a girl with a "mental" mother just SHOULD NOT get good grades - NOT according to other kids)... but I still tried to cope. I was born with congenital problems, damage to my feet, and missed months of education whilst having surgery... but still I coped. I guess I just came across as a highly-academic "coper"!
By my late teens, I had terrible and frequent respiratory infections, as well as menstrual problems. This did NOT stop me attending University, and getting my Degree. I continued attempting to cope; even sitting my finals with severe Bronchitis! Then work... yet more attempting to cope - surgery on my sinuses to relieve Chronic Sinusitis... the Pill, to stop my problem periods. Masking symptoms. Feigning coping!
Another few years... and yet another qualification. I re-trained and became a Social Worker ( a further Diploma and Degree). Several successful years working in Forensic services - a medium-secure mental hospital for prisoners. Meantime, worsening menstrual symptoms, and recurrent (severe) infections.
2006 was a "crunch" year. I was diagnosed with POST VIRAL FATIGUE SYNDROME (like M.E.). The beginning of a dramatic "downslide". I was also referred to a (with hindsight, utterly INCOMPETENT) Gynaecologist because I was failing to conceive. He mis-diagnosed me with Polycystic Ovaries, THEN failed to treat me at all, and put my inability to conceive sown to "anxiety" (the only thing making me in the least bit "anxious", ironically, was HIM!).
Yet more years trying to cope. Trying to hold down a full-time, highly pressured job, whilst attending multiple medical appointments, and recovering from repeated infections. NO TREATMENT OR SUPPORT WHATSOEVER had been provided to help me cope with my M.E./Post Viral Syndrome! Just coping unaided. Occasionally assisted by an increasingly worried husband! NO conception... NO desperately wanted baby! Just work, pain, heavy periods, infections, fatigue, nausea, upset stomach, tender glands...
2011 was a "watershed" of sorts. I was diagnosed with ENDOMETRIOSIS. By now, my activity levels were greatly reduced. No more hobbies - pain and fatigue had put an end to horse-riding, aerobics, mountain-biking and hillwalking with my husband. I had been bullied out of my job by employers who saw an employee with long-term illness as a complete nuisance (and made this VERY OBVIOUS to me!). I was terrified to drive my car, because pain in my pelvis and lower back made an emergency stop very uncomfortable. Besides, I had very unpleasant bowel-related symptoms that made long journeys somewhat awkward, to say the least! I did not dare eat certain foods, for fear of triggering my upset stomach. I was regularly tired, run-down, infection-prone, prone to migraine, suffering pelvic and back pain, bloated, nauseous, and had Reynauds Syndrome (permanently cold hands and feet) to boot!
Like you, I was incredibly frustrated to find myself in such a position. I can completely identify with the "right brain, wrong body" sensation - it is as though your brain, still highly able and active, is now "trapped" inside a body that can no longer keep up with it!
Still, I suppose this is where resilience comes in (as well as more than a wee bit of "creativity" - people like you and I probably re-invent ourselves more successfully than Madonna and Michael Jackson ever did!). I thought about what I would like to do with my life; things I still felt I could achieve, and things that would make me happy whilst doing them. I returned again to University - to study Postgraduate Psychology. I figured that this relied more upon brain, than body... so I had a chance of passing the course! I also felt motivated by a goal... if I could complete a course of Postgraduate study, despite my health problems, not only would I have excellent qualifications (and the chance maybe to become self-employed), but I would prove to myself and others that NOTHING gets in my way. That, even with health problems, I could manage, do something constructive, achieve! AND I would enjoy doing it.
Another year or so on... I have my Research Project to complete. Hoping I do well! I have also discovered "blogging" and post my personal experience of chronic illness/disability on Facebook. I have also campaigned for greater awareness of Endometriosis (writing to M.P.s), and have become a Student Union Rep (at my age!!). I have re-discovered writing poetry, and am currently part way through my first Novel. Who can say if it ever will be published? I'd LOVE that - but, frankly, I'm having just as much fun writing it!
I've also re-discovered the Theatre, and have converted my husband to watching Ballet! He actually rather likes it! I can still enjoy time in my garden, and love visiting Antique Fairs and Car Boot Sales. I've even become somewhat of an "armchair Antiques buff"! (So, I've discovered "culture", at last - me - the woman who was a teenage Goth!!).
The MAIN thing I have discovered is the people who are TRULY WORTHWHILE to me. You get to know those who genuinely like you for who you are; and who were just "fake friends". To be blunt, it is often necessary to dispense of those people in your life who cannot be supportive and genuine. NOBODY needs people in their life who drag them down. I have a term for these sorts of people - "VAMPIRES"! People who make themselves feel good at the expense of others. Now, I know that the concept of "schadenfreude" exists; I just do not wish to be on the receiving end of it!
So... apologies for a long post. But your words REALLY struck a chord. People who can be positive no matter what, who can re-invent themselves, who can find the good in a negative experience, and learn from it... people like YOU are a rare commodity that this Earth needs more of.
Have you ever considered undertaking study towards a qualification in Photography? Nurturing a hidden talent? Or, perhaps working as an ambassador for disabled people? There are probably many organisations that would welcome your experience and expertise, as well as your positive outlook. Maybe you could begin to execute your plans for the future? Just a thought... Or maybe you are living a busy, and fulfilling enough life already?
Whatever, you... and many of the others who have posted replies here... prove irrefutibly that with a determined and positive outlook, as well as an astute and active mind, a person who lives with a disability or long-term health problem has LOADS to offer. Just think, there are perfectly FIT AND ABLE-BODIED people sitting on the "dole" in Council Estates; for NO OTHER REASON than that they CANNOT BE BOTHERED TO WORK! AND, there are disabled people, and people with chronic health problems who have a MILLION TIMES MORE to offer, once society sees beyond the issue of health.
It's like the disabled writer and activist Jenny Morris once wrote "society constructs disability". YOU and ONLY YOU know what you are capable of. Get out there, gal, and live it!
Best wishes,
Elaine Ellis.
P.s. If you ever want to trade experiences, or advice, I can be e-mailed on elaine-ellis1@hotmail.co.uk. I'm on Facebook at facebook.com/elaine.ellis.5... where I post my thoughts on things such as disability, and discrimination.
Totally agree. Disability, illness, pain are no reason to stop living. It may take longer, may need more planning but anything is possible.
I saw a picture on fb of a surgeon who was paralysed from the waist down. He got a stand up motorised chair so he could carry on with his work. (cleanest wheelchair in the world!).
Seems to me that you are up and running there Nutty. When I was 15 and an apprentice butcher I never thought anything of lifting a full side of beef yes half a cow that you see hinging from a hook in a butchers shop.
Now its a case of know my limitations as at 26 I contracted TB in my kidney at the same time a stone in the kidney now some 33 years later I still have no strength I daily struggle to come to terms with this IE my wife pushing a shopping trolley. Yes but even after this and together with my CPS I still have a sense of humor thank God for that. As I like you I will not let this condition get the better of me
I can not help but be humbled by the bravery and strength of many who have both posted here and shared their experiences more privately. We are one awesome group of people I am honoured to have spoken with.
What a good attitude. I've been looking in the other direction of the things
that I've lost since pain came into my life. It's all in the mindset, I suppose.
When I first sought treatment I was given a long list of things to avoid because they would aggrivate the condition. I didn't really read it, sat down and bawled my eyes out (all the anger and frustration of my life being taken away from me by a piece of paper!!!!). Put the list away. Then a couple of days later I decided to read it. I crossed off all the things I would never do. Then I focused on the things I really had to do. Taking one at a time I worked out a way to do them safely, even if it meant starting with 5 minute sessions to retrain my body.
I got that list 11 yrs ago. There are still a few maybe I want to do this there and I've added a few of my own.
I gave up work and became self employed. Now, I have my own business, I run a website doing all content myself. I released my creativity and this is part of my coping strategy. Got a new photography hobby. Still not enjoying the walk everyday, it's such a chore but I can switch from work life to family life in an instant as I work from home. I have time to take care of myself with exercise, meditation, therapies. I self teach myself loads of things, join on-line classes, and attend business courses.
And the most important thing is I reward myself for every tiny achievement( anything really - new book, chocolate, films, plant for the garden, computer game, feeding the birds).
My life is so much richer and I've found my true self. Yes I have difficulties living with pain, I still get frustrated at not being able to do some things that will remain on the list for ever more. But I'm so busy with creating and living life that I don't notice very often. I doubt if I stayed employed I would have the time or energy to explore creativity. And the pain? well it does raise its scruffy head from time to time, then it's time to slow down and read the book I got for mastering an aspect of photo editing, or eat the chocs and watch the DVD which I got for cleaning the bathroom in under 2 hours (with many breaks).
As welshnut says, it's all about the spin you put on yourself. If you were a commodity, how would you market yourself? As someone who looks for the opportunities a situation brings or someone who lets the situation take control? (nobody in mind here just a general observation).
I've just come back to this post, and read it again, along with all the replies. Tell you what...
If the Government, and the DWP could only see this! "Nutty" your original post has inspired along list of replies that absolutely PROVE that people living with disabilities are really LIVING... Getting out there and going for it LIVING! There are people who have posted who show that no matter what they have to cope with, they remain utterly determined to live as full and busy, active lives as they possibly can.
EVERYBODY has limitations - even so-called "able bodied" people. What society sadly all too often fails to see is that some "able bodied" people can be so SELF-LIMITING as to be worse off than so-called "disabled" people. Given the right support, the right environment, and the right amount of control over how and when they do things, disabled people and those with long term health problems are perfectly CAPABLE. Again EVERYBODY, even "able bodied" people, has their own way of doing things. So... if you have to do something in a wheelchair... but you can still do it... then how is that any different, or any worse, than an "able bodied" person doing it? There are ways and means to doing many things... THAT is why we were given BRAINS... TO FIND THOSE WAYS.
Perhaps what is needed is a completely different way for society to view "ability". A way that does NOT simply mean having a perfectly functioning body! To me, ability means natural talent, creativity, lateral thinking, forward planning, learning from mistakes, reflecting on things, empathy... Is there anyone out there who would DARE suggest that "disabled" people do not have these qualities? NO? Thought so! Then it makes sense to say that "disabled" people have ABILITY, too!
Some have a lot more than "able bodied" people. I'll tell you this... If I were an employer, I'd far rather hire the disabled person who worked hard to get good grades; who thinks carefully about their limitations, and plans ahead to take account of them; who knows when enough is enough and always finishes one task before starting another; who is open and honest about needing time off for medical appointments... THAN... The able bodied person who came from a good family and had every opportunity but messed about and failed at school; who takes on more work than they can possibly complete, just to impress and to "brown tongue"; who often calls in "sick" on a Monday, knowing it's actually a hangover; who spends at least twenty minutes of every working day gossiping and taking "cigarette breaks".
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