AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Becca19962014 I think it is cruel for them to encourage you to think back to previously possible things and expect you somehow to do that again!

Surely a better approach in my personal and very limited experience (so please free to ignore me) Would be helping find/fund services that would allow more freedom to people who have different needs.

Like telling the local pool that they must run a disabled session, where the lifeguard will be particularly vigilant at fishing people out of the pool. Plus attending and leaving in a two part swimwear under a towelling dressing gown, to eliminate the extra getting dressed elements.

Helping you track down and buy a suitable replacement seat or additional cushion to reduce pain whilst travelling in a car.

Aka practical help with the worse bits, aiming to improve your life. That is what IMO will help more than positive thinking and nothing to back it up!

This must also include proper access to painkillers and allowing patients to try different options until the best combination is found to help the person sat in front of the GP. Pain management is definitely NOT a one size fits all type of solution.

Don't you think?

I have left several support groups in the past for being very depressing and/or with competitive posters trying to play top trumps!

This is another reason our own section.of the health board OR an entire board to ourselves would be invaluable.

As one poster can bring down everyone one thread. By dominate a thread and twisting everything around to their own issues. This can make it harder for shyer or first time posters to get noticed in the rush of posts.

Where as having a board will allow everyone to start their own thread asking about their own situation or current problem and allow posters to respond and help that person.

Hopefully competitive negative threads can be allowed to drop naturally off the board and the more supportive and fun threads stay at the top.

Keeping up with this post is too hard, too many people who all want to fuss their own situation and it is impossible for everyone to respond to everyone.

Which is why we need our own section, please.

I am a long standing poster of over a decade in my normal user name and I would be happy to volunteer to mod if that is the issue!

Discuss not fuss

I would like someone to talk about symptoms with. Not to moan particularly, but to discuss for example why my hands have started to hurt and could x,y,z help. Then a knowledgeable poster could point out the impact of the weather/getting cold. Just like a PP said!

No one in my life is remotely interested in details, and it's actually a big part of my life so being able to talk about it would be good!

@picklemewalnuts

I would like someone to talk about symptoms with. Not to moan particularly, but to discuss for example why my hands have started to hurt and could x,y,z help. Then a knowledgeable poster could point out the impact of the weather/getting cold. Just like a PP said!

No one in my life is remotely interested in details, and it's actually a big part of my life so being able to talk about it would be good!

Definitely. Most of the ways I manage my pain I learnt from others going through it.

@Becca19962014 yes all that sounds exactly right to me. Spot on. I'm so sorry you e been treated like this. My gripe is that DD could have been prepared or helped if someone had realise her hyper mobility wasn't the normal being a kid hyper mobility. When she was 14 she went to her last outpatient paediatrician appointment and walked in really slowly leaning in me ( the last time she ever walked) and he said hello xx my goodness you have really bad hyper mobility how do you cope?. And the went on to deal with the issue in question which was should she be admitted for tube feeding as she could no longer eat (ME). And we wonder if her pain and fatigue might actually be due to EDS as much as ME. All DD wants to do again if she could just one more time is swim. She was always such a water baby. When people like medics ask what she will do when she is better she just says 'be a person'.

Anyway the pain is so awful at the moment and I am just exhausted myself. She and I have been so grumpy and awful with each other and I don't know if I can cope with another eight years of this. I'm almost 63. I never get a full nights sleep. I am dead on my feet. I haven't seen an actual friend or family member ( eg my sister) for 4 years). And what the fuck must it be like for her? At least I can watch Netflix. She can't do anything at the moment. She last saw a friend the day after her 16th birthday for an hour both holding hands on her bed and then had a massive crash the next day and was in hospital for 4 months followed by 3 in a nursing home ( with me living with her because neither could provide enough care for her without me doing it). Euthanasia surely must be an option

Sorry I know I'm such a depressing poster

sooverthemill Sending gentle hugs

@Sooverthemill

Sorry I know I'm such a depressing poster

No you are not a 'depressing poster'. More that you are struggling to cope with a very hard and painful situation atm.

I don't know if you have health conditions yourself but even a fully healthy person will need support to care for a severely disabled person, like your daughter.

Do you or your daughter have specialised help at home? Do adult social services visit/do assessments?

@Sooverthemill

Sorry I know I'm such a depressing poster

Aw soover don’t say that, you’re just trying to do your best in a heartbreakingly difficult situation.

A “carers of those with chronic illness” thread would be great on the board too. 💐

With such a proven level of nursing care I’m shocked but not suprised they haven’t provided some social care. Have you had a carers assessment yet?

I agree though with so many posters and different questions and illness one big thread means they get lost.

Thank you all. Apologies, it's just a very bad few days.

@Worrysaboutalot I don't really have any health conditions myself apart from high blood pressure ( since I began to care for DD before then it was very low) but I finished chemotherapy for Hodgkin's lymphoma only 6 months before DD became so very ill with ME ( and in fact one of the shittiest things a medic ever said was my illness had caused DDs). I suffered terribly with chemo fatigue and I believe that I now have chronic fatigue as a result ( not ME just fatigue). Sadly DD also developed Hodgkins a few years ago and we had to deal with her diagnosis and treatment which was in really hard as it couldn't be adjusted very much for her ME. She had stage 4b bulky and was incredibly ill. I fought for testing because I knew this was extra to her ME POTS and EDS.

We don't get help from social care because there are no care workers locally who can meet her needs. She cannot have perfumes for example , so no deodorants in the house, no scented hand wash really. No smokers. We've tried and it simply made her much much worse having to interact with new people each time. Since we moved to this village ( we moved 4 and a half years ago advised by GO to get better air quality as DDs asthma was so bad) we had agency after agency say we couldn't have anyone and the one time we had someone booked to do a trial they called in sick. DD had totally wasted energy trying to be ready for them and after all that we decided not to. Pre Covid I used a trusted person who would go 48 hours perfume free to come and sit for an hour or so once or twice a month so I could go to see the sea or have a coffee. And she was there really in case of an emergency or a fire. She has never seen DD. We live somewhere with a high elderly population and very few care workers. We would pay privately but have never had anyone answer adverts. I would really like to have a who,e afternoon off but DDs ends and interstitial cystitis means she can't go longer than1 or 2 hours without needing a wee and so I can't go very far. I haven't been out since Covid apart from A&E because I became very ill temporarily last year requiring 2 A&E trips and that was a nightmare luckily my neighbour took me to one ( our hospital is an hour away) and our son came back so DH could drive me and come back the second.that was really tough as son is a key worker and high risk for Covid so we were terrified for DD . When DH does the caring in an emergency then DD has to explain everything and it uses all her spoons. When I was well again she couldn't speak or eat and stayed incredibly poorly for 2 months not even able to sit up. DH wants her to move out to a flat but I'd have to go too. Maybe that's what he would like!

@Akire

With such a proven level of nursing care I’m shocked but not suprised they haven’t provided some social care. Have you had a carers assessment yet?

Oh yes I had one. They said our needs were too complex. It's incredibly ironic given the job my DH does and what I used to do ( would be revealing to say). I know my rights. When I did an online assessment for DD just after we moved here the assessment came up with they would pay for horse riding for the disabled or swimming lessons. That made me weep. They gave us £250 instead. I simply haven't bothered contacting them again, it's an insult.

I get about smoke perfume smells etc used to have to be strict when I employed carers in what I needed.

Would she be prepared to use pads when you need to go out? I have for when I can’t always get out of bed every time I need wee on a bad day. They are not best feeling in the world but would make huge difference for you to have more than hour or so off at a time with someone covering.

I think a real strength of a chronic pain board would be the ability to have the different topics separated. There are so many great posts on this thread that I wanted to respond to but by the time I get to the end I've forgotten who said what.
All the things that I've figured out for myself that help with pain has just been trial and error and I think a thread for suggestions where people share what works for them would be really helpful. Like I wear compression gloves when my hands are bad but it didn't occur to me to try other compression supports until my partner bought me knee compression sleeves which feel amazing. Obviously not everything is going to work for everyone but knowing what other people have tried and tested could really help.

I agree with having more options about stuff that can help @Worrysaboutalot. Even simply things like going for a swim would cost me taxi ride least one way (to tiring to do both ways) 2 h of agency carer £22 an hour. Paying for me to go even if carer is free ha! Talking £60-65 a pop for something everyone else can do for fiver. Then when get there only 2 disabled changing rooms which families use so can freeze and shake waiting for them to be empty.

I've reported your post Rita, because I agree so much!

It's not possible to have conversation on such a wide ranging thread with so many posters to try to remember and untangle!

@Sooverthemill I'm so sorry for what you and your daughter are going through.

Sooverthemill
(((hugs))), I hear how difficult everything is for your daughter, for you and your husband.

If the right support was in place, having her own flat would be good for future proofing and it would be good to know she was settled semi independently of you and her dad. But if this is a step too far for you atm, wait until the right time.

But look after yourself, you need to have time off. It is essential. It is worth trying again to find an carer for your daughter. Social services should be funding a certain number of hours of care weekly.

My friend gets her care money, in a dedicated bank account and pays her 2 part time carers out of that.

Interviewing is a pain but worth doing to get the right people. Likewise keep looking the right people will eventually turn up.

On another point it would be very useful for hospital admissions, for carers and your husband, to have all your daughters health needs written down. In a folder/file which can go with her and saves your daughter having to use up spoons repeating things. Just a thought, you might already have this already eith carer assessments etc.

I hope you can put things in place, so that you can enjoy parts of your life and enjoy time with your husband and daughter without being the carer all the time.

Oh Soover I'm so sorry to hear how ill your dd is and how hard it is for you. I care for my son with FND and that is tough and stressful but what you're experiencing is so extreme.

Please keep posting if it helps, don't feel bad, you have no reason to. You're dealing with a situation which sounds unbearable, I can totally understand why thimgs like euthanasia are in your mind. Sending much love to you and your dd 💐💐💐

Soover

I'm so so sorry for you, my eyes were filled with tears reading your posts, what an unbearably hard situation.

Hope you can keep posting and feel supported even in a tiny way 💐

Thanks everyone. Cathartic writing it down tbh. @Worrysaboutalot yes we have a huge pack about DD for hospital admissions with all her details. The NHS admission forms don't have enough spaces for her allergies. We have 4 ring binders one of which is in the grab bag.

Morning everyone, hope you are all OK (as can be) today?

Morning all, just to let you know there has been an update from MN on site stuff. I don't know how to link on the app but if you check out the site stuff board it's on there.

Long and short of it is, MN have said they're still considering it and it would be beneficial in their eyes to show spin off threads are working.

Hope you're all okay. I'm feeling very tired today. I went for a walk at the weekend and now have sore shoulders :/