I think this is a terrible term to use! I would not like this at all – I do not think of myself as a sufferer or suffering and I don’t think it’s something anyone should decide for another person that that is how they feel about themselves or their life. I think it shows a very negative view of disability that the person using views our lives as…[Read more]

Yes! Speaking for myself and from talking to other people I would say it’s very common to feel this, you certainly aren’t alone. I think a lot of people go through periods of accepting abilities we’ve lost and then other periods of really grieving them, and moving between those two. I know I do. Sometimes I feel like I’m really ok with not being…[Read more]

I have not yet been to look on the love lounge, but it’s definitely something worth discussing with your care agency if they are not aware of your rights and you would like support with it. Perhaps you could encourage them to read the information on the love lounge website?
I’ve never discussed sex with my carers but I would not be surprised if…[Read more]

I agree words are very complicated things. I do not like them. I am different to you in that I do know good words and bad words and I have learnt these. However, I’m not generally offended by a particular bad word, I don’t take offence to it. I do think words can hurt though – that old wives tale is not true! I don’t think that comes down to…[Read more]

Sometimes messages get so mixed up! You have to wonder if they were remembering something from another patient or if they just forgot to wash their ears out that morning!!

Hi Julie, your situation is quite similar to mine as I am also generally limited to staying in bed and unable to sit up for any length of time. I have periods of time where I’m able to do more but also times where like you are now I’m more restricted. To some extent, I trying struggle too much to fill my day, because by the time I’ve done all the…[Read more]

I definitely can say I experience this too – with social services but also with medical things for me as well. I think sometimes when you have assessments (depending on the purpose of them, because you don’t want to argue yourself out of support!) it can be helpful to also make a list of things you have achieved, so you can show them positives as…[Read more]

I enjoyed it too! Thank you Mel for putting it together 😁 I’ll be around over Xmas to chat too

You’re right, perhaps we should start making them! We could do some good comedy skits of what NOT to do too!!

You might need a horn or flashing lights as well as red bull, to warn people you are coming! My mum is quite like this when pushing me. She doesn’t look where she’s going so ends up using my legs a bit like a battering ram (I have elevated footplates so they stick out in front of me). I’m amazed that so far neither me nor anyone has been more…[Read more]

They were actually all in the fridge, but I think it’s a language thing. Though the latest one just kept bringing me back the same packet of carrot sticks even when I kept saying no, so that was at least partly stupidity because she must have known it was the wrong thing even if she didn’t understand what correct thing I was asking for. Maybe she…[Read more]

Thank you for such a thorough reply! You are right that specific disabilty equipment is always so over priced. I try to find alternatives not marketed for disability that can be cheaper (for example a lot of wheelchair accessories you can find made for pushchairs or bikes much cheaper). It seems like you are lucky (or talented anyway) that you…[Read more]

I really love this way of thinking about boundaries! It can be so hard to put in boundaries, especially with friends or people you are close to, but thinking of it like this really puts a different perspective on it and I think will make it a lot easier. I’m going to try thinking of it like this going forward and see if it helps me. Thank you for this!!