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Posts: 1,876,323 The Mix Honorary Guru
I went to see my pain consultant today. After much discussion he said that there was no further medication for me to go on. I'm in constant pain and he's said that I've tried everything that's currently on the market for me to try. I feel at a total loss as how to carry on. I'm such severe pain I frequently don't want to live anymore. My life has become so limited, I have to have carers help with my personal care twice a day, I walk with a stick, I use a mobility scooter. And I'm 23. I can hardly get any relief from the pain and most of my days are spent in bed or on the sofa. I feel totally isolated because I've lost most of my friends who are a similar age because they don't quite understand. I can't keep living like this but I have no idea how to carry on living with this condition. I can't work at the moment and pretty much all my hobbies have had to go the wayside. I get horrible looks from people and talked down to as if I'm a child by people who don't know me. My self esteem has really dropped and I don't know what do to pick it up. I just don't know how to carry on from here. I don't know how to manage my life anymore. Help!!
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Sorry to hear that. Have u tried talking to anyone about how ur feeling.
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Huge hugs to you to start with. I know your pain consultant said there's no further medication for you, but are there any medications being trialled at the moment that are for your condition?
My dad only got on his medication by taking part in a medical trial, because it is so expensive (£30'000 a year I think!!) that the doctors hardly ever suggest it. The NHS, unfortunately, is all about money. I'd recommend doing your own research into it and going back to your consultant with the information you find, any other medication, medical trials etc. that might be possible for you.
Also, I know it's a long shot, but have you tried small things like changing your diet, taking extra vitamins etc? My dad tries to eat as little dairy as possible, it doesn't help much but everything is worth a go I suppose!
Moving away from the medical side of things to emotional, are you getting any mental health support at all? I know that illnesses can lead to depression, and as you say low self esteem. Do you have a counsellor, or are there any emotional support groups in your area you could join?
Try and take each day as it comes, accept the bad days when they happen but try and focus on the positive things in life- no matter how small
All the meds that could help me they either won't prescribe me or aren't available in the UK. Ella suggested looking at trials in chat last night but currently there are none recruiting new candidates.
My therapist referred me health psychology who put me a mindfulness course, but I've got no more support than that. I feel a bit like I've been cast adrift my the mental health team.
I spoke to my GP today and he's referred me on to a podiatrist and back to the mental health team. I'm on the commitee of whats meant to be the local support group...which isn't really very supportive! I've looked for others and there don't seem to be any.
Taking each day as it comes it is part of the problem. I can't plan anything, I can't plan my future, I can't even really plan days out. I accept the bad days, but its really hard to just sit back and take it.
I am fed up of being consistently pissed off. My house has been a building site nightmare for the past 4 months and I'm having to move out for another 3 weeks so they can finish it off. I'm pissed off I'm having to foot the bill for all of it. I'm pissed off that I'm missing loads of things because I'm going away. I'm pissed off with my mum for being so anxious and constantly being such a tard at times and annoyed with me at things which aren't my fault. I'm pissed off at my ex for being a dick generally and looking at my dating profile the other day, I'd like forget he ever existed. I'm pissed off at my health, and the fact no doctor has answers. I'm pissed off with all my friends having fucked off and having pretty much abandoned me as I've gotten worse. I'm pissed off with needing as much care as I do, and being out of action for a couple of days or more if I don't take everything slowly and then I miss out so much.
I've tried doing the mindfulness and I just get so angry and annoyed with myself and the rest of the world. I can't think straight. I just feel really lonely at times I can go days without seeing anyone other that my mum or my carers.
Sorry huge long rant I'm just at the end of my tether Atm