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@Invisible Woman Yes I went on a couple of retreats many years ago and it was so wonderful. Quiet, meals provided and often being around others in silence! I wish I was still able.

Not to mention old people’s homes. I dread the fragrances for a start!

Yes of course, in the current climate it is potentially unsafe, and my friend was extremely worried about going to any bed in a psychiatric unit. It was largely ok but there were some issues. They came out in better shape than they went in, largely due to having 24 hour care, which is not...

We really need something like this in the UK. We need care homes that are suitable for us, so that if we are unable to stay at home temporarily or permanently there is somewhere safe to go. We also need hospital beds that are safe. Last time I heard there were two beds in Leeds in a...

so sorry you had to attend in person. I was so relieved not to have to get to that stage as it would be very difficult to do, as I am sure it was for you. We shouldn’t have to make ourselves worse to get money to live on! I also got more than on DLA, which gives me satisfaction. I wish it was an...

Yes I agree. The (almost) constant benefits battles and resultant fallout have such an impact. To be free of that would quite probably lead to people feeling more able to socialise a little (helping others with loneliness etc) and who knows what. It’s such a waste of money (as you say, it’s...

Thanks @adambeyoncelowe Yes Andy it won’t change in the meantime, but it makes no sense even now. Not to me, anyway! The attitude seems to be to punish us for daring to struggle, whereas if you struggle with MS, well, that’s now valid.

yes I do get PIP and we are coping ok overall, but I just feel it’s wrong that no-one actually checked! How many GPs have I seen over the years, never mind the CFS services! They didn’t mention it, but we were all well enough to attend (though actually I wasn’t, as it turned out).

yes, I have heard stories of this attitude as well and I think it accounts for the seeming inconsistency of admitting we can be severe, but then not responding as if that were the case (and probably blaming us for not being better than we are).

I was looking at the MS page in the NHS website yesterday and noticed that it has a clear link to a guide for accessing care services at the bottom of the page. https://www.nhs.uk/conditions/multiple-sclerosis/ I thought I would check the CFS/ME page...

It’s definitely not enough. I have had various apparently expected issues with drugs (including bad withdrawals) which were not on the leaflet. I have had doctors tell me a drug is clean and safe when it wasn’t. This really needs to improve. (not that I think there are many drugs which are...

I have signed the card. I think it’s always worth speaking up, even if it seems pointless. Saying that, I have given up with my MP as they consistently vote with hostility toward disabled people. It’s too much effort and upsetting to interact with someone like that. A comment to NICE was not...

@Invisible Woman Absolutely agree. Young kids are not driven perfectionists and most people’s lives look busy and overworked before they get ill. It’s just another way to blame the patient for their illness. It’s not our fault we continue to push on too long after getting ill either, it’s due...

absolutely. Telling people that they should be grateful for some side gains is inexcusable. We may sometimes feel grateful for small things but they come with such a sting in the tail and cannot be generalised about. My positive attitude, when I manage one, is my own business and we don’t need...

I would like to see the results of this too.

Thinking about this, I would say to a GP that I have neurological symptoms and also immune symptoms. I don’t think we have to know the cause or mechanism for someone to have their symptoms acknowledged as being a certain type, or of interest to a certain specialty.

Yes true. I wouldn’t dare say PENE to a GP. Post exertional symptom exacerbation is the basic truth. We desperately need more facts! It’s very hard to advocate for ourselves as things stand.

I interpret as a flare of both immune and neurological symptoms which feels like what is happening. We may not know exactly what’s happening but how else to describe it? We need some way to speak about our experience. I feel a bit stuck if we follow your suggestions.

I am so pleased you have responded well to the pyridostigmine. I am going to ask about it this year. I find it hard to get on with trying new things as it feels so risky to change anything (because things are so bad!).

Thanks @JemPD i see there is a spray for the air there. I could suggest they switch! Thanks @Invisible Woman interesting idea to steam the air there! My partner may not relish the task but I will keep it in mind.