So, I'm 21. I'm a wheelchair user. I have serious chronic pain (since birth) in the feet, ankles, legs, knees, hips and lower back. This is caused by permenantly damaged bones and nerves. I also am visually impaired, have asthma, a severe heart problem and a range of metal health problems. I'm not looking for attention. I just want someone who understands you know?
I don't get help for my conditions. They can't put me on most pain killers, it just isn't an option. I always go round on my own, travelling by public transport and everyday I get abuse.
I just can't cope anymore.
I feel like I'm worthless and pointless and hat anything I do will just fail.
I'm at rock bottom. I don't know who else I can talk to. I honestly feel I'd be better off gone.
Am I less of a man for feeling this way? I feel like I am.
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Hello Robin and lovely to meet you. Pat here the noisy one!
In spite of all your conditions I am very impressed that you manage to get around on your own. Public transport is hot the most friendly for those in either wheelchairs on sight loss.
You can chatter away on this iste and usually someone will pop up. No we don't have answers but help and support each other through our own experiences.
You say you don't get any support for your conditions? Does that include GP, pain clinic, RNIB? I won't comment on them too much!!
My GP are next to useless. They are good with something's, but doctors don't want to interfere with this and that. I'm classed a complex health case, so no doctor has a remit for me. Yet not complex enough that I qualify for benefits.
The RNIB are great in their own right. So is my sight rehab officer BUT as ophthalmologist have a loop hole and targets, they won't register me officially partially sighted. So I have a care plan and hire cane, but no one to implement said care plan.
My family are generally less than supportive.
My main support comes from my fiancé (who I think struggles to cope with it, and I don't want to haste her) and my university. Even my employer have a pretty negative attitude to disability.
I'm stone cold broke on my own, but help doesnt seem to be an option and I'm stuck living in a helpless situation of disability which isn't taken seriously because I am considered to be borderline on everything but too sick for anyone to actually help, and living in a relatively abusive (mentally) environment.
Welcome to the forum - sorry you need to be here but you have certainly come to a place where you can be heard and understood in a way those who don't live with the challenges that we do can - however well intentioned they are.
You've made a very positive step reaching out to us, and you are certainly not alone. So many of us have been at that very very dark place and just reaching out a hand can help us take the steps that we need to take ourselves to find the light and a more comfortable way of living alongside the challenges we face.
I found myself at that darkest of places around this time last year and I can honestly say that this forum and the genuine care and support I found here as well as admitting to myself how low I was enabled me to make the changes I needed to - to stay alive first of all, then learn to manage my feelings in a more constructive way
I have some suggestions for you and I'll put them in order of priority ( in my opinion!)
1. The MIND website mind.org.uk is a rich source of information and support. On the front page there is a link at the top which says 'in need of urgent help' This is very important if you are feeling at risk as it will guide you through a few questions and guide you towards help.
They have all sorts of support on the site including telephone and email contact.
2. Maybe you would benefit from completing a depression scoring tool? If you go to patient.info and search PHQ-9 you will find a questionaire which will indicate whether you are depressed and the likely severity of the depression. You can then print this and take to your GP - even the least responsive of GPs understand the implications of ignoring a patient providing factual information such as this in a language they are familiar with.
3. Lastly, but definitely not leastly - Mindfulness. There is a huge amount of information out there about this practice now and it sounds sometimes just like the latest fad. But there is research evidence going back well over two decades demonstrating how practising mindfulness can reshape the brain.
We know for sure that how we think about ourselves and our conditions impacts on how bad we feel.
If you haven't come across Ruby Wax's book 'Sane New World' I highly recommend it - you may know that she has a long history of mental illness and is writing and touring about mindfulness because of the way it has changed her own life. Her most recent book 'Frazzled' has a short how to course in the middle.
A book and CD that I found really helpful because it is written by someone like me who has spinal injuries from early in life is ' Living well with pain and illness' by Vidalyma Burch. I found it particularly helpful because she clearly gets it.
I really hope you can stick around here and take the hands and suggestions that will be held out to you.
Take very good care of you
Shirley
X
Hi robin I'm in a wheelchair for different things I felt the same way as u do who cares what happens to me then I found this forum and if it was not for pat & curlygirl and others that listened to the things that was happening in my life I would not be here, so please what is ever on u mind just come on this site and have a rant there is all ways some one here to listen to u.
Chronic pain is cruel & vile - almost everyone on here knows and/or goes through it every single day BUT please recognise that this forum does listen and give excellent advice.
It's such an achievement that you manage public transport everyday - you're better than me!!
We all have our strengths and weaknesses but we also have this site and this simple, sweet site is a huge factory of support so stick with us!!
You have such a lot that you have to deal with - do you not see anyone for any of the issues for support, updates or review?
GPs are now so busy that it's easy to 'fall beneath the radar' with regard to treatment. Why do you feel they're not helpful? Is it a particular GP or have you seen many? Now that each patient is to have one GP overseeing their care, maybe you could find out categorically who is yours and write a list of what you'd like 'looked at'? Book a double appointment so you don't feel super rushed during the appointment and go through each one and make a plan for it. Say how you feel and what you'd like your GP to consider and do - who you'd like to be referred on to.
If you have some clarity for each issue, maybe you'll feel a little more in control?
Paton & Curlygirl's advice is excellent and if you can somehow combine everything, you could have a more positive outlook?
I know we keep saying it but please use this forum to 'vent' your frustrations whilst each issue is being managed!!
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